I’m a mouse…duh. (Anyone who gets that reference, I love you!)
When Ariel said she wanted to walk on…what those called? Oh yea! Feet! I have a feeling this isn’t what she meant…Thank you Gio for doing my awesome makeup!
My kickass mermaid shoes.
I hope you all had a fantastic Halloween!!! Thank you Nancy for this awesome shirt and Aunt Renee for these awesome socks!!! Til next year…
November 6, 2017–Halloween Things/Traditions:
Hi World! How are you doing tonight? I apologize again for not posting yesterday…while the school year is in session you’re going to have to forgive me. I had an exam this morning and I was up till about three in the morning studying. While I love each and every one of you very much, I was not about to write a blog post at 3am. Sorry, Charlie. But now let’s talk about one of my favorite holidays and my traditions.
October 29, 2017–My Physical Therapy Routine:
Hi all! How are we doing the on this fine Sunday night? Are all you parents fed up with Halloween yet? And are all you non-parents getting pumped for Halloween? I know I am. I have three costumes, and I’ll probably only wear one or two…can never have enough options, am I right or am I right?!
Well, tonight I’ll be discussing my Physical Therapy (PT) routine. Over the years I have had many PTs. Off the top of my head, I can think of six…but there’s probably more! But my freshman year out here I did not have a PT because I was getting adjusted and was honestly was too stressed/too busy. When I went back and saw my Jersey PT, she said I had significantly lost strength and the ability to do things I had done in the past. For example, it was extremely hard for me to hold my phone (AKA my life!) in my bed and I could not pick it up from my lap where I could normally. When I came back for my sophomore, I made it a priority for me to find a PT.
During my first week or so back at school I found the Swimming and Diving PT/AT was interested. I met her along with my mom. We both loved her and thought it was a great decision to hire her. One of the reasons we loved her was because we knew that she was going to make me work for everything and not take it easy on me. Sometimes, people go easy on me because they think I’m weak and can’t handle it. Or for the simple fact that I don’t have the muscle mass. Well yes, I don’t have the muscle mass of the average 20-year-old, but that doesn’t mean you can’t push me to see what I’m capable of. So we hired Courtney Imnotgoingtotellyouherlastname!
I had my Jersey PT email her my Plan of Care, and she followed it for about two weeks. When I was home, I did the majority or my PT in my bed. Courtney (and I) did not see that as functional, so from then on, we did everything in my chair. She rotates days, so one day will be my “Strength and Conditioning” day (I’ll go more into that later), and the next will be “Range of Motion” (ROM). On my “Strength and Conditioning” days we have a variety of exercises that we do…sometimes she lets me pick! We will do anything to weight lighting using different muscles (I’m up to 3 lbs max for one exercise), picking up marbles and putting them in a cup, hand squeezes, twists, manipulating putty, and band work. I am sure I am missing like a million exercises, but I can’t think of them now (sorry Court!). I like “Strength and Conditioning” days because I can directly see the results, but on the other hand, it is a lot of work—so worth it though! On ROM days, it is all Courtney stretching muscles. In “Strength and Conditioning” days we focus on my upper limbs only (possibly some neck stuff), but on ROM days she stretches my legs and feet too. I’m going to real honest right now; I am never going to walk in the near future, so why waste my time (and hers) working something non-functional? I have contractures in my knees and feet. She keeps them from getting worse, but that is pretty much it. During ROM days she makes sure I can still stretch within normal ranges and make sure I don’t get contractures in my elbow or wrists.
I just have to take a minute to talk about Courtney as a person. First of all, you have to know is that is a Boston girl through and through. She is also absolutely obsessed with the New England Patriots…needless to say that I was EXTREMELY happy that they won cause she went easy on me the day after. I do not even want to know the chaos that would ensue if they lost. Neither do you…trust me. But underneath all of that craziness is a girl with the biggest heart with an even greater sense of humor. She comes midway through my day, so when things just aren’t going my way I complain to her, and vice versa. The amount of times we talked each other off the ledge is countless, but so is the amount of times that we break down and cry because we’re laughing so hard. She is my comic relief of the day, and I hope she is mine. This past weekend I had the honor of meeting her parents (and they are also VERY Boston!), and I can see where she gets her charm and sarcasm from. I also had the chance to get to know her adorable boyfriend. Don’t tell her I told you, but I DEFINITELY think he’s *the one*. Shhhh😜 Over the past year and a half we have grown very fond of one another, and we don’t have any secrets (her boyfriend’s words, not mine!). She is an all-around great gal, and I am very thankful for having met her.
*If you have specific questions about my PT routine, please ask me, and I’ll ask Courtney cause chances are I don’t know the answer*
Have an awesome week and tune in next week to see my Halloween traditions!
October 22, 2017–Fall Break:
Hi all! How are we doing tonight? If you are an Irish fan at all you’re doing pretty darn good 49-14 baby…against USC at that! We had a pretty great night last night and today I am just having a relaxing day before the craziness starts again.
Tonight, I am going to talk about my great (yet semi-boring) Fall Break, Game Day yesterday, and a surprise topic that my favorite thing ever. Fall Break was a much-needed break from everything school related, but by the end of the week I was bored and decided to finish my weeks worth of homework for the upcoming week. But more importantly than homework (who wants to read about that?!), I had a lot of downtime to myself. On Tuesday I went to my hairdresser (Karen at the Village Salon if anyone needs a recommendation) and I decided it was time for a MAJOR change. So ladies and gentlemen…I went RED!! Like, Debra Messing red. I absolutely love it and it’s is very fall like. The way they dye my hair is very unique. Karen puts foils in my hair like normal. However, she has to get a squirt bottle and rinse out every piece of my hair with water, which in turn makes it about a three-hour process…good thing Karen likes me!
October 15, 2017–Sunday Adventures:
Hi all! I am so sorry that I didn’t post last night, I completely forgot that it was Sunday. So, how are we all doing tonight? I am doing swimmingly, it’s fall break, and I haven’t looked at a book or written a paper all this time! I definitely needed a mental break. I took all of my homework with me to do, but the chances of that actually happening are slim to none.
Tonight, I am going to talk about my amazing day yesterday. It started off earlier than I would’ve liked at 815am, but it was for an extremely important cause. This was the first time in a few years that I could attend the Annual Walk (or Roll) For Wishes for Make-A-Wish. It was a bit foggy and rainy outside, but once we got there the rain stopped, and we got kicked off! The C.E.O. and President, Tom Weatherall, asked my dad and me to speak to the crowd. While I came up onstage with my dad, I let him speak for the both of us. After we talked, we walked (and rolled) for kids that cannot. It is one of my most favorite events, I absolutely love the Gala every May, but this event is extremely low-key and fun! I got to meet several different Wish Kids and families. They had bouncy tents (that my dad desperately wanted to go in and we had to tell him he was too old), face painting, balloon animals, and New Jersey 101.5 with my personal favorite, Bill Spadea.
So it just so happens that my mom bought tickets to see Dear Evan Hansen…at 300pm. So it was a quick turnaround. Tom Weatherall has a couch in his office that he offered to us to get changed on. I did a quick change from a cute athletic outfit into a cute fall for the city. I did my makeup and hair in the car (that’s fun for a bumpy ride on the Holland Tunnel). But we did it, and that’s all that matters! We had one other hiccup. The night before my mom tried to print the tickets. The key word there is “tried.” The handicapped tickets she got wouldn’t print. The other three non-handicap seats were completely fine…it was just those two handicapped seats. I felt so bad; she could barely sleep Saturday with the fear that someone else could have bought our tickets.
My mom was on the phone from the moment we left Make-A-Wish with the Box Office. She was on hold for 45 minutes (I hate Costumer Service sometimes!). When she finally got a hold of someone, they also put her on hold. Arghhh!!! We were literally passing Newark Airport when she finally got an answer. Apparently, the Box Office has moved our seats so it could be more convenient for me and my chair and the tickets are under my name! Well, that’s amazing, but could no one tell her this?! It would have been nice is all I’m saying. But, you know, at least the Box Office didn’t sell our tickets, and we had to go back all the way home.
Once we were in the city, we had to find a place to park, which is always an adventure. We have to find a spot not too far away from the theater (for emergency reasons) and enough room for my ramp (for the car). We found the perfect spot in between where everyone wanted to eat and the theater. We need to remember it for the next time we go into the city! Everyone (well, my brother mainly) wanted to eat at Shake Shack right in Time Square. They had a quick lunch then we headed straight to the Music Box Theater to make sure we actually did have the seats and got to them on time. Everything went off without a hitch!
While I was looking through Snapchat, I saw that my Little Sister from Ryan Hall was there too! I texted her, and she said she was in the front row, so cool! She came over during intermission, and we chatted a bit. During the most pivotal scene in the first act, my feeding pump went off, and my mom had to scrambled to turn it off. I’m sure no one heard it, but those theater people take things seriously, so we were a bit worried…but it got turned off, and it was just fine! The show was absolutely PHENOMENAL! I don’t want to give away any spoilers, but it was emotional, hilarious, and awkward. Ben Platt is a genius. Absolutely amazing.
Have an awesome week and tune in next week to hear what else I was up to this week during Fall Break!
October 8, 2017–Movies, TV Shows, and Music:
Hi all! How are we doing on this fine Sunday night/Monday morning? This is the last week before Fall Break, how is that possible?
***Warning longer post tonight!***
As you could probably tell from my major, I absolutely love movies! So I’ll name all of my favorites (on my Some of My Favorite Things page) and go into why I love all of them.
I first saw this movie on a lazy Sunday night at my beach house. My mom has seen it before, and she recommended that I watch it. We laid in my bed and watched it together. Through all of my tears, I told my mom “this is the best movie EVER.” And it was totally true. I am a true hopeless romantic at heart, and the epic love story of Noah and Allie is one that I look for in my life (maybe that’s why I don’t have a boyfriend…?). Plus Ryan Gosling isn’t hard to look at. I watch it at least twice a year or just when I am flipping channels and see that it is on.
I saw this a little before I probably should’ve. My mom and I were shopping at Target when I was browsing the movie section to look for a good flick. My mom said she thought I was old enough that I could watch Titanic. I did not know anything about the events this movie was based on. That afternoon my brother, John, mom, and I sat down to watch this movie. Conveniently, the phone rang when Jack is…ummm…drawing Rose. And her…you know whats…are exposed. John was about 11 or 12, so his eyes were glued to the TV while I was screaming “MOM!!! KATE WINSLET’S BOOBS ARE OUT, AND JOHN CAN’T STOP STARRING!!!” She promptly came in and PAUSED it right on that scene when she meant to fast forward…two completely different buttons Mom. But, minus that little mishap, I loved the story and the connection that Jack and Rose had. Again, I’m a complete hopeless romantic. I became so fascinated with the movie that I started researching the actual Titanic, and it was so interesting! I haven’t sat down and watched start to finish in a WHILE. Hmmm. Maybe a Fall Break thing to do…? Oh. And there was totally enough room for Jack on the door! Or at least switch! God, why does everyone have to die?!?
Well…what can I possibly say about this? The summer before I entered 6th grade we were at the beach, and I stumbled across this very familiar show called Friends. Hmm. I started watching it, and I became enthralled! I was so sad when it was only one episode that was on. Did Rachel have her baby?! (I started in the first half of the Season 8 finale.) My mom told me that when I was little, she used to let me stay up late with her and watch Friends…ahhh! That’s why! She immediately went on Amazon and brought me the first two complete series. I quickly finished those, and she proceeded to buy me the rest of the series. This was the first show I ever binged watch. I have no shame. A few notes on the show…they WERE on a break, but Ross was still wrong, #RoselForever #ButReallyMondlerAreGoals Friends will forever be my all time favorite show.
This show was always on ABCFamily at 11 am, so I really don’t know how I started watching it. Maybe I was home sick one day? But I definitely started before the final season aired (or what I thought was the final season), because I remember watching Season Seven on the CW (I was sooo cool). I absolutely loved Lauren Graham playing Lorelai Gilmore so much that I am going to be naming my first born daughter Lorelai (I just reallyyy liked that character). She is probably TV character mom ever. I felt like I could relate to her. She was driven, funny, and talked WAYYY too fast, which I am all three! I also loved both of the mother-daughter relationships. As you can imagine, I absolutely FLIPPED out when I saw that this was coming to Netflix in revival form! Ahh! I watched all six hours in one sitting. Some thoughts…Rory is meant to be with Jess, but Logan is a close second. She should’ve told Logan about the baby (if it was his). Sooo happy that Lorelai and Luke finally got married in a GORGEOUS ceremony.
One Tree Hill:
So this is a show that I never get tired of watching. My cousin, Nancy recommended it to me. I love everything about this show. Naley are absolute goals! I mean two complete opposite high school juniors who get married at the end of the first season who end up having two adorable children and life-fulfilling careers by the end of the show is not exactly realistic, but remember…I’m a hopeless romantic! Brooke Davis is the funniest and realist person on the show! When I grow up, I want to be Brooke Davis. She grew so much on that show it is unbelievable.
This is a new show that I have been watching since its start. I will admit, the only reason I started watching it was because I saw that Hilary Duff was starring in it. But it was so much more than that when I watched it! It’s only a half-hour, but it is set up like an hour-long drama. Very interesting. Sutton Foster is amazing in it as well. She plays a 40-year-old housewife pretending to be a 26-year-old working in publishing (ageism). Season Four just ended on a huge cliffhanger, so I cannot wait to see what happens. Also, for anyone who watches…#TeamJoshAllTheWay
The Real Housewives of NJ/NY:
So I know what many of you may be thinking, am I crazy?! Well yes, but not because I like these shows. You see, this is my one true guilty pleasure. Yes, I know it’s absolutely trashed and absolutely scripted, but I don’t care! The drama is just so memorizing! My favorite Jersey housewife is Melissa (used to be Teresa), and my favorite New York housewife is Bethany (love her bluntness)! Jersey just came back on, and Danielle is back…ohhhh, it’s going to be a good season!
That’s My Kinda Night–Luke Bryan:
The summer of my spine surgery Renae and Nancy were with me all the time. Nancy is the biggest country fan I know, and Renae is a close second. The new it boy in country music was Luke Bryan. So she introduced me to him, and I instantly feel in love. That November I watched the CMA’s, and Luke Bryan opened with That’s My Kinda Night with Florida Georgia Line Cruise (which I also loved). And that was it. The following January I saw him for the first time live, and it was AMAZING!
All-American Girl–Carrie Underwood:
I always loved Carrie Underwood, but this song speaks to me particularly because it reminds me of mine and my dad’s relationship. And I tend to think of myself as an All-American Girl. Plus Carrie can sure belt a tune!
Fight Song–Rachel Platon:
This song came out fairly recently, and when I heard it for the first time, it brought tears to my eyes. It is such an inspirational song and an “I can do anything” kind of a song. For those of me who know me or read my blog, you know that this is how I strive to live my life.
Katy Perry is my favorite Pop artist, but recently she’s kinda went off the deep end. Anyway, when this song came out I was in middle school (I hated middle school), and I was kinda down on myself, but I listened to this, and all of my worries went away. It’s very similar to Fight Song, but just more upbeat and easy to dance to!
What Dreams Are Made Of–Hilary Duff/Lizzie McGuire:
The Lizzie McGuire movie was the movie that was the icon of my generation. Every saw this when I was 5-6. It was the first “real” movie I saw in the theaters. When Hilary Duff came out in that epic outfit in the Colosseum, I instantly wanted her life. And What Dreams Are Made Of is an anthem of my generation. And to think of 14-year-old Lizzie could do that, well then I can do anything!
This song probably is the most meaningful song there is on the list. If you haven’t heard this already, please do. My dad used to sing this to me (badly) when I was a little girl and told me that I was God’s own creation. That I was a wonder. And that with love, patience, and faith, I’ll make my way. And I think I have…
Thank you all for reading this extremely long post! Have an awesome week and tune in next week to see what I’ll be up to during my Fall Break!
October 1, 2017–SURPRISE!
Hi all! How are we doing on this fine Monday night? I’m sorry I didn’t write last night, but I was up until 2am studying for my American Politics exam. It went well, I think! Just a few words about the tragedy that happened last night: Today, I woke up late for my American Politics exam. I was so flustered and stressed about my exam that I did not look at the news. After I was finished, I talked to my mom and she told me the horrible news. I am praying for the victims and their families. May God bring some comfort to them.
So, welcome to the SURPRISE edition of HighHeeledWheels! As some of you may know, this weekend we played Miami of Ohio (and totally kicked their asses!). But what you probably didn’t know was that Nancy and Renae (and Renae’s husband, Josh) went there for college. All of my extended family was in for the weekend, which was absolutely amazing. Including an almost 9-month pregnant Nancy. It was also the first visit for my Aunt Mary (Nancy’s mom), so it was very special for her too. Since all of our family and Nancy knows some of my friends, my mom and I decided to throw her a Surprise Baby Shower! But it wasn’t really a surprise because she knew, but didn’t know anything about it.
The shower was pink and yellow themed, but much more specifically Lulu Lemon themed. You see, Nancy has been obsessed with eating lemons throughout her pregnancy. Yes, just whole lemons. And she’s having a girl so pink was an obvious go-to color! It turns out that pink and yellow look extremely cute together. Which is weird because I hate yellow, it reminds me of pee and vomit (sorry for the visual and if your favorite color is yellow. We decorated the whole house in pink and yellow tulle and “It’s a Girl” signs and utensils. It looked very cute if I do say so myself. And if you’re looking for something to dazzle your party up, I highly recommend the tissue paper balls (I don’t actually know the names of them, but you probably know what I mean)!
I had a LuLu Lemon cake and cupcake. It looked adorable! I even had “Reilly Grace” put in yellow at the cake base. A photo-booth was set up using crepe paper and “It’s a Girl” signs and I bought props for people to hold. It was a special experience, especially since I was unable to attend her other one in NC. I cannot wait to meet my newest little niece, hold her, snuggle with her, give tons of kisses and hugs, but I especially cannot wait to see what she grows up to be. Nancy should be induced within the next two weeks and I will for sure be sharing all the adorable pictures with you!
Have an awesome week and tune in next week to see what I like to do in my free time such as my favorite movies, music and TV shows. I realize this is on my Some Of My Favorite Things page, but I will go more in depth next week.
September 24, 2017–Section Olympics!
Hi all! How are we tonight? I cannot believe that I am entering into my sixth week of classes! I had a nice relaxing weekend, without football, so that is always nice:) I have my first exam on Tuesday so that’s sad…
Well, yesterday Ryan Hall had our very first Annual Section Olympics! It was super duper fun, except it was 95 degrees out and I had plastic green pants on with a green tutu. That kind of pants have no room to breathe! Plus the tutu was not the smartest idea either. Now, you’re probably wondering why I was wearing such a silly outfit? Good question readers. Because the award for best spirit was being given out. It is very rare that I win anything for actual sports ability (because duh…) so I was over the moon when I found out that the most spirited person wins something too! I could and did totally kick a** in that contest.Section Olympics was organized by the section in our dorms. Every section was assigned to a color, hence green everything. It was spectacular fun! I love to dress up in silly costumes and look a tiny bit ridiculous. The event started out at 2pm with a warmup exercise. We needed to find a partner of either 2, 3, 4, or 5. If you didn’t have a partner you were out! I was out within two rounds…like I said sports isn’t really my thing.
Then we went out to the back to our basketball courts to play the rest of the games. The first game was Tug-Of-War. It was on the grass, or else I totally would’ve played AND kicked some serious butt…cause a 500 lbs wheelchair. Then we moved into the sun…not a great idea. At all. We played a game of filling a bucket with water. Electricity and water don’t exactly mix. So I also stayed out of that one too. Next was a mind game. This was my time to shine! Except the first category was fruits! I don’t eat…but I made it through the first round. Then, I lost. It was fine! I had fun and that’s all that matters. The next competition was corn-hole and knockout. FYI, knockout is not where you hit people and get them out. As you would suspect, I cheered for my section on the sidelines. The next event was water balloon toss. It was sooo extraordinarily hot so I sat in the shade. After this event, it was way too hot so my nurse and I went to get something to eat (for them) then went back to my dorm to get cool. 2A won the whole thing, but they had the most people soooo was that really fair? I’m not entirely sure! But all in all it was tons of fun, but I would advise that next year they do it when it is cool, but South Bend weather is totally unpredictable.
Have an awesome week and tune in next week for a SURPRISE edition of HighHeeledWheels!
September 17, 2017–Why I Chose My Majors:
Hi all! How are we tonight? I cannot believe that I am entering into my fifth week of classes! How is that even possible?! I had a nice relaxing weekend, without football, so that is always nice:)
Like any other incoming college freshman, I had no idea what I wanted to do with my life. I thought maybe I’d major in a basic liberal arts education in Communications degree. Well being the fancy pants school Notre Dame is, it did not have that specific degree. So when I committed to come here, I had to research what I wanted to major in. Not because I had to decide right away, but because I like to be prepared (those who know me, will completely understand!). So, I went to work. I made a list of my likes and dislikes. I knew I wanted absolutely nothing to do with business or science (because like ew, math and weird scientific words). But I liked to watch TV and movies.
When I stumbled upon FTT as a major I felt that it was the perfect match for me. My first semester of freshman year I took the intro class and fell in love. I declared FTT as a major the end of my freshman year. I wanted to concentrate in TV because I feel like you get so much more in-depth with a TV show than a movie or play. I would rather invest my time in watching a certain TV show than a movie. The middle of my first semester of sophomore year, I declared that my concentration would be in Television.
I was doing some math (shocker, I know!) and I was figuring that I would be completely done with all of my university and major requirements by the time I was halfway through my first semester as a junior. So I started doing some more research on another major I could pick up. I talked to an upperclassman about the possibility of majoring in American Studies. Once I talked to her and researched the classes more, I was hooked. So now I am in three American Studies classes and one FTT class and am projected to graduate with all of my credits and on time. I am loving American Studies more and more each week.
I am thankful that I found not one, but two majors that I absolutely love. I would not change my majors now, it is a great feeling. You may am what I want to do with my life after graduation? Well, I’ve touched on this before (so go back and read!), but also I have absolutely no idea…so stay tuned!
Have an awesome week and tune in next week to see what a really fun event in my dorm is–Section Olympics!
September 10, 2017–In Loving Memory of All We Lost:
Hi World! How are we tonight? It has been a long week and we had an Irish Lost, but oh well! Still a good week! I know I was supposed to write about why I picked Film, Television, and Theatre (concentrating in Television) and American Studies as majors, well I’m going to save that for next week because something slipped my mind last week…
People my age tend to not remember the tragedy that occurred in this country on September 11, 2001. The day after 9/11 is one I’ll never forget; it was the first time I understood what it meant to be an American. I was only four years old, so I did not understand exactly what happened, but I knew that something bad must have happened. My dad was home from work, and my brother was home from Pre-K–something that never happened. I asked my dad why he was home, and he explained the magnitude of the tragedy as best as he could to someone who was a child. I remember him saying that bad people had done mean things and he was home to make sure our family was okay. The next day all the kids of our neighborhood walked down to our driveway. We used sidewalk chalk to draw an American flag with the words “God Bless America” underneath it. Community. Togetherness. Solidarity. From that day forward, that is what being an American meant to me. I see where I am today, and I see where my dad was at my age, and I see a true manifestation of the American dream, of what it means to be an American.
I think that for everyone, patriotism means something different. For me, it means the pride that comes from being an American and the refusal to shy away from it. Growing up, my parents raised me to honor America and its sacred traditions. When the Pledge of Allegiance or National Anthem played, I was taught to stop what I was doing, place my hand over my heart, listen, and recite. I do not do these things because I feel like I have to. I do not do it to follow the status quo. I do it because I honor this country. When that National Anthem plays, I am reminded that we are the home of the brave, and I am reminded of the men and women who died to give these rights to me. I am reminded that of the 241 years that our flag has still been there. Patriotism is more than drinks, fireworks, and long weekends on the Fourth of July; it is respect for our founders, for our Constitution, for our soldiers (fallen and otherwise), for all the men and women who built us, and for our history.
My dad grew up in large part without a father, and today he is the greatest example of a real father; that is the embodiment of the American dream. His father was a police officer and a marine, that served his country and taught my dad what it means to be an American; he passed away at a still young age, leaving my father when he was seven years old. My dad was motivated to push and pay his way through college at Georgetown University. He did not stop there. He then immediately went on to University of Notre Dame Law School. After practicing law in Indianapolis for a few years, he went on to Harvard Business School. He was a successful businessman, but things all changed when my brother and I were diagnosed with Pompe Disease. He was not happy with the prognosis. The doctor told my parents to take Patrick and me home, and enjoy the time we had left. My dad dropped everything to find a way to change that prognosis. Based on the fact that I am here writing this paper, you can assume he was successful. After 9/11, my dad was commissioned to serve in the United States Navy as an Intelligence Officer. Today, he is the C.E.O. of Amicus Therapeutics, a biotech company that focuses on fighting rare genetic diseases, such as Pompe. I believe that America is the only place where you can start from nothing and eventually have your own multi-billion dollar company, start from a fragmented family and eventually establish a complete one.
My dad has done many remarkable things throughout his life, one of them was being served in the Navy. Within weeks of terror striking our country in 2001, my dad recommissioned in the United States Navy Reserves as an Intelligence Officer. At that moment, men and women came together as a nation to defend it and he was a part of that. He was gone for six months, sacrificing time with his family for his country. We could only see him during some weekends and he had to travel back and forth from Norfolk, VA to our home in Princeton, NJ. During one of my dad’s three-month deployments to Afghanistan, my mom and I were on the phone with him when we heard a “BOOM” in the background. My dad frantically said he had to go, and then hung up the phone. Those couple hours waiting to hear back from him were agonizing. There was another instance where my dad was supposed to be on a helicopter but was ordered home a week early. His replacement along with his comrades were on that helicopter; the helicopter was shot down, killing everyone in it. My dad was asked to go to Washington to receive the remains and to mourn with their families. I do not know a lot of what my dad did in the military, but I know why he did it. He did it for love of his country; he did it so that you and I could sleep in peace at night.
I met some of the truest Americans on my visit to Washington. Some of them were President Trump, First Lady Melania Trump, Vice President Mike Pence, Second Lady Karen Pence, Kellyanne Conway, the wife of US Supreme Court Justice Antonin Scalia, and Carryn Owens. Of everyone that I met that day, Carryn Owens left the largest impact on me. To me, she and her husband are true Americans in every sense of the word. Her husband, Navy SEAL William “Ryan” Owens, was killed in a raid on an Al-Qaeda stronghold in Yemen. President Trump honored not only him but his entire family. He called him an American hero. Carryn was unable to compose herself when the President honored. After the speech, my dad and I introduced ourselves to Carryn, and I told her how I appreciated her husband’s sacrifice and that she and her family were in my prayers. We also talked about how Ryan’s favorite football team was the Fighting Irish. My dad is in contact with Carryn so that her family can come to a game this season. It is an American’s dream to meet their President, and I was blessed to have the opportunity. But, I feel I was even more blessed to have the opportunity to meet Carryn Owens.
I see where I am today, and I see where my dad was at my age, and I see a true manifestation of the American dream, of what it means to be an American. I am proud to be an American; it is an innate part of who I am. There are some parts of America that could be improved, but I still believe it’s the greatest country in the world. I am blessed to live here and have grown up here. I am blessed to have had so many people in my life fight for what matters, fight for American values and the American way of life. I believe I know what it means to be a true American because I have met and know true Americans like my dad, Carryn Owens, and President Trump. “Cause there ain’t no doubt I love this land. God bless the USA.”
9/11 is something I do not remember, but it will always be with me…no matter where I am or what I am doing. I believe that I am a true American and I could not possibly be a true American without acknowledging the terrors of our history, especially 9/11.
#GodBlessAmerica #RIPOfEveryoneWhoSacrificedTheirLife #16Years
“At this moment 13 years ago, millions of Americans went to bed quietly, with no thought that the next morning their world would change forever. That night hundreds packed flight bags they would not live to open. Thousands slept with loved ones for the last time. One never knows what a new day has in store. Let us live each day to the fullest, and never miss a chance to let those dearest to us know of our love for them. So tonight if you have someone in your life that you love, tell them…”
I love you Mom, Dad, Patrick, John, and everyone else in this amazing life of mine!
Football Weekends at Notre Dame:
Hi everybody! First off, let me extend my sincerest apologies. School has gotten into full swing, and between Game Day and homework I had barely had time for anything other than sleep! I hope you can forgive me.
As some of you know, I really don’t like and cannot appreciate the act of playing or watching sports. But I go to Notre Dame, and football is like a religion around here. So what do I do you may ask? Good question readers! Well, like any college student I like the social aspect of the entire weekend. Every home football game my parent’s house (which is less than a mile away from campus) is full with family and friends. On Game Day, we have a huge tailgate next to the stadium, and all of my friends stop by. This past Game Day, I had to work a shift in our mail room, so I was a bit late, but I was not too late. My mom has everything catered, and we have everything that has ND on it imaginable. I think it is a fantastic time!
Recently, my dad invested in his own golf cart. When I say it is the most ridiculous, but awesome thing I’ve ever seen, I’m telling the honest truth. He got it street legal so he can drive it everywhere. It has six seats, is hunter green, has ND monogrammed into the headrests, a Bluetooth stereo, and a horn (no it does not play the Victory March, much to his dismay). When I first saw it, I thought it was just ridiculous, but it has grown on me. And let me tell you, he has never been more in love with an inanimate object. But, I have to admit, it is kind of cool. So cool, that I told my dad I want a pink handicapped one (can you believe he didn’t get this one handicapped accessible?! #Rude)! Who knows if he listened to me, but I had to try at least.
I go into the game about a half hour before it starts. All four years, I sit in the same spot…in front of the senior section behind the 50-yard line (I believe, my football knowledge is not that good). This year is the first year they had a Jumbotron and P.S.A. it is A LOT easier to know what is going on when there is 96ft X 54ft to the right of you. But somehow this past week I missed every time Temple scored. That has nothing to do with me being on my phone more than 50% of the time. Absolutely nothing! But I never missed when we scored…that is until I left at halftime and missed every single one after that!
I always leave at halftime because well, to be honest; I get bored very quickly. And I don’t like sports. Especially football. But this time I went and saw my parent’s new fancy box. It is absolutely gorgeous. I loved it! But then everyone wanted to watch the game, so I left and went to my room and watch Bachelor in Paradise. It was nice. But, I always keep up with the score on my phone and WE WONNNN!!! #49-16Baby
Have an awesome week and tune in next week to see why I picked Film, Television, and Theatre (concentrating in Television) and American Studies as majors.
August 27, 2017–First Week As a Junior:
Hi all! How are we tonight? I am already DRAINED from my first week of classes. How is that even possible?!
On Monday night (classes started Tuesday) I was all calm, cool, and collected. I had dinner with my parents, a few family members, and a few of my parent’s friends. I knew I had to go to bed early because I would get about seven fewer hours of sleep than in the summer. Plus, I have new nurses who take a little extra time to get me ready. Boy, was I tired! But I was excited. Then I remembered that school=no sleep. So I had to readjust the first few days. It was not bad at all.
My first class on Tuesday was Witnessing the 60’s. It looks like a super cool class. We will talk about anything from film, to music, to politics, to social movements. I really do not know anything about the core of the 60’s, just the typical sex, drugs, and rock and roll–not exactly what the 60’s was all about. It is nice too because I have three papers and participation. No exams…yay!
Next for Tuesday was my Disney class…Walt Disney in Film and Culture. This is going to be my most favorite class ever! Every Wednesday evenings we watch a Disney movie, anything from Beauty and the Beast to High School Musical. Sooo cool! In this class, I’ll have three exams and a final project. Not too bad, especially since my final project can be anything I want it to be, any format, any topic. AMAZING!
That is it for Tuesday’s, but I am signed up for a one credit class every Tuesday (starts this week) until my fall break called CST and Addressing Drug Addiction. Should be extremely interesting!
My first class on Wednesday is a bit earlier, but just by 30 minutes. The first class is American Politics, although I don’t post about it too much on here, I love politics. This is going to be an interesting class, and I am excited to see which way it leans (right or left…or the middle). The grading consists of three exams and two papers. Not too shabby. But also, tons of reading, not my favorite.
Next, on Wednesday I have Introduction to American Studies, my new major! Yay! Since it is an intro class, there is a lot of freshmen in the class, but oh well. This is American History, but more social and political than normal. Cool! This class has five quizzes, a midterm exam, two papers, two response papers, and a final project. Not too bad! I can do papers like no one’s business!
Wednesday’s are also my shower days (as well as Monday and Friday’s), and they take about an hour and a half start to finish with my nurse and nursing assistant. I have to plan my showers because it takes a lot to coordinate and effort. But I don’t mind!
Wednesday evenings I also have my Walt Disney in Film and Culture lab where we watch the movies! And every day except for Friday’s and Saturday’s I also have tutors. So I have a pretty jam packed schedule, but I love it!!!
Have an awesome week and tune in next week to see how I tailgate and I do football games!
Augest 20th, 2017–First Few Days Back at School:
Hi all! How are we tonight? I am EXHAUSTED from Welcome Weekend and moving the freshmen in. But I am excited to get to know all of the new Wildkittens in Ryan Hall!
This week has been insane; I can only imagine how the freshmen feel. We got here on Tuesday night or Wednesday morning, and the freshmen moved in on Friday morning. The Welcome Weekend Ambassadors are in charge or making sure that the new freshmen feel welcome and interact with one or another as well as other dorms around campus. So far so good!
Each day we have a list of activities to do with them. Normally we have one activity that is just Ryan then do all of the other programming with other dorms. I always say it is more fun to work it than to be a freshmen…and a tiny bit less exhausting! We also have these pretty rad t-shirts that say “Welcome to the Pack” in mint green. Every dorm has two shirts, one for the Ambassadors and one for the freshmen. That way we can identify what dorms are coming at us so we can do cheers at them and prove that Wildcats (our mascots) are the best. We also serenade the other dorms…this year we remixed it to Breaking Free (High School Musical) and All-Star (Sherk), we’re pretty fabulous if I do say so myself!
On Friday all of our programming was in the dorm, we taught cheers and serenades, introduced ourselves and broke up into smaller groups and just talked about the day. These groups are called “Packs”. We are kind of their mentors throughout the first few weeks of school and beyond. Saturday we had Trivia, Ice Skating, and then the infamous DOMERFEST (Notre Dame, Saint Mary’s and Holy Cross freshmen all move in the same weekend so during the orientation activities they have a big event for all of the incoming freshmen…DOMERFEST)! Either you love it or hate it. Mine is the latter. Then tonight (the last night thank God) we had a bonfire and scavenger hunt. Then all of the freshmen had a class trip to the Grotto.
Now my duties are over and I have tomorrow night to prepare for my first day as a college junior…ahhh! Where did the time go!?
Have an awesome week and tune in next week to see how my first week of classes went!
For anyone interested below are our cheers and serenades:
We’re roaring Ryan
There’s not a dorm at ND that we can’t beat
Yeah we’re Ryan
So we’re baking treats
We know the world can see us, because of how cool and fun we are
Coming home to Ryan, yeah that’s where it starts
But my pack is where it’s at and everyone can see
We’re roaring Ryan
There’s not a dorm at ND that we can’t beat
Yeah we’re Ryan and we’re glad to be
WHAT TEAM? WILDCATS
WHAT TEAM? WILDCATS
WIILDCATS GETCHA HEAD IN THE GAME!
Somebody once told me West Quad was pretty lonely
Until Ryan Hall came around
We were feelin’ pretty fine when we showed up in ’09
The sound of our roar shook the ground
The years start comin’ and they don’t stop comin’
Started FJs and we hit the ground runnin’
Didn’t make sense not to live for fun
At ND we’re number one
So much to do, so much to see Ryan Hall is the best place to be
So come on down to the 2-4
You’ll never soar if you don’t roar
Hey now, you’re a Wildcat getcha game on go play
Hey now, you’re a Wildcat put the show on we’ll say
Reppin’ blue and gold
Our pawprints break the mold
Ain’t No Party Like a Wildcat Party:
Ain’t no party like a wildcat party cuz a wildcat party don’t stop! HUH
Double up, uh uh 7-up cchhhh Saddle up, YEE-HAW
Ain’t no party like a wildcat party cuz a wildcat party don’t stop! HUH
Double up, uh uh 7-up cchhhh Saddle up, YEE-HAW
Shoulda Lived in Ryan:
W-I-L-D W-I-L-D C-A-T-S C-A-T-S
Shoulda lived in Ryan
GO RYAN GO RYAN GO
Should live in Ryan
GO RYAN GO RYAN GO
R-Y-A-N Better pay attention
We’re Wildcats yeah yeah we’re wildcats WHOOOO
R-Y-A-N Better pay attention
We’re Wildcats yeah yeah we’re wildcats RAWR (cat noise…)
We are Ryan:
A Side: We are Ryan We We Are Ryan
B Side: WEEEEEEEEE ARE RYAN
Go Cats Go:
Go ‘Cats go
Go ‘Cats go
Hey Ryan whadda say
The ‘Cats are gonna win today
August 13, 2017–Why this Year is a Transition Year for Me:
Hi everybody! How are we all doing tonight? I am so sad that this weekend is my last weekend at home until October. I leave Tuesday at 4:00pm.
You might be confused by the title because it is my junior year and I should be settled in at school and everything else. Well, you are right. I am settled at school (and cannot wait to go back) and everything else. But, two very important people are not going to be there this year. My two cousins/nurses/best friends in the world, Renae and Nancy. Renae is going back to Cincinnati, OH to raise her children and so that Addison (my niece) can start preschool. Nancy is starting a family of her own. She is due with her first child on October 29th, a girl to be named Reilly Grace.
Renae and Nancy have been my rock through so many things. Renae moved out to South Bend with me to help with my first two years at school, including being my nurse and being the family member out there in case of emergency. What she doesn’t know is that she was my saving grace out there my first complete year. I had an extremely hard time transitioning to the whole college experience and everything that comes with it. I will be forever grateful for her and her husband, Josh’s sacrifice to move out there with me and their daughter and have a son, Lucas, in South Bend.
Nancy was in the midst of finishing nursing school at Duke when I started Notre Dame, but she agreed to come out and be my nurse one weekend a month. She graduated in December and once again come out two weeks a month to once again be my nurse. She would do that until last semester when she found out she was pregnant. Nancy and I have been through just about everything together and just because we’re not going to see each other all the time does not mean that is going to change. I cannot wait to meet Reilly Grace either, if she is anything like her mother, well then…good luck Nance!
So yes, without Renae and Nancy I may not know what to do, but, since they are leaving I had to hire two new nurses. We spent the last few months of last semester so the first week Renae will be with me to be the “in case” person and she’ll be back once a month to check on things and to work with me a few days…after all Cincinnati is only four hours away. Nancy will come the second week to do the same thing, but this is the last time she’ll come to South Bend (except for a game at the end of September). It’ll be quite the adjustment, but that is why Facetime was invented…right? (Just go along with it.) I’ll miss our conversations, I’ll miss them waking me up in the morning, I’ll miss skipping class with them (shhhh, I didn’t say that), I’ll miss the voices of Addie and Luke in the mornings when Rae didn’t have a sitter, but most of all, I’ll miss your company and laughing with you. What keeps me happy through all of this, is knowing you are happy and that we are never truly are going to be without each other. You guys are my everything!
Good luck Rae and Nance–you both deserve the world! I love you!
Have an awesome week and tune in next week to see how I am settling in at school!
August 6, 2017–My Favorite Summer Vacation Memories:
Hi World! How are you doing tonight? We celebrated my Poppy’s 75th birthday tonight; it was great family fun. I am just enjoying my last full week of summer and packing for South Bend!
Every year for about 10 years, we took a family vacation to Ocean City, NJ. We as a family loved every minute of it–sometimes it was just the five of us (plus the on duty nurse), other times it was a full house of family and/or friends. It was like a revolving door for two weeks. For those who have been to OC, you know it is an extremely family friendly town…and that is why we went there every summer. We even went there during the year.
We had a house right at the very end of the boardwalk. I could even run up and down the boardwalk ramp without any adult supervision, of course, my parent and/or nurse would watch me from the balcony, but it still felt free and liberating. My friends and I used to share little secrets in the gazebo at the edge of the boardwalk. Two of my very best friends and I put on a concert at that little gazebo one night…someone other than our parents even came!
Patrick and I could not go on the beach because our wheelchairs are not sand capable. However, we definitely made up for it in other activities. One of my favorite past times was to go to downtown OC and go shopping on the main strip. One of my all time favorite shops was called Ta-Dah! It was a cheap, but cute store with everything. I loved it, and we became friends with the owners, and their daughter would sometimes babysit my cousins and I. I miss them and the store. There were many other stores that I loved and would shop till I dropped!
At night it was boardwalk galore! At the other end of where our house was so some of us would drive, and some of us would walk. There was an arcade, rides, sand art, spin art, henna tattoos, and hair braiding! The latter two was my last night traditions of our vacations. I had my hair braid in until it became a literal rats nest and my mom had to cut my hair. I thought I looked so cool…it really was though.
Ocean City was like a second home to me. I grew up there. I had heartbreak there. But I also had the best memories there. When I have kids someday I for sure, want to take them there and show them my favorite games, rides, stores, arts, and secret hiding spots. I cannot wait. I hope to go there again soon…there is truly nothing like the Jersey Shore.
Have an awesome week and tune in next week to find out why this is a big transition semester for me!
Annie–Freshman Year Nursing Assistant
Claire–Sophomore Year Nursing Assistant
July 30, 2017–Finding Nursing Assistant at College:
Hi World! How are you doing tonight? I’m doing alright, just soaking up every last bit of summer!
Before entering college I never had a nursing assistant because my parents were always around, but that was not the case anymore. I needed someone to help get me ready in the morning, showering, transfers, and an all around friend.
I am going to tell you how I got my very first nursing assistant. The summer before my freshman year I had no idea how to find a nursing assistant, nor how to “manage” one on my own. Previously, my family had found me, nurses, to help, but never nursing assistants. The summer before my freshman year my cousin, Nancy, had an internship at Duke Hospital (she was a nursing student). Her first day there everyone was introducing themselves, including one shy girl from Saint Mary’s College in South Bend, Indiana. You know what else is in South Bend, Indiana? Yep!! Notre Dame!
Nancy immediately texted me she found someone to work for me, and she was so cute. Before we even met the girl, we were looking her up on Facebook and decided she looked cute, how harmful could she be? At the next break, Nancy introduced herself to this lovely young woman. She learned her name was Annie. Nancy explained my situation and asked her if she might be interested and suggested that she fly out to meet my family. At first, she was a bit wary (why wouldn’t she be?), but then she called her parents (who freaked out, undoubtedly), but then decided to take a chance and hop on a plane. Soon after, she flew out for the weekend so I could meet her along with my parents.
She was the absolute sweetest person I’ve ever met. We hit it off right away. The only downfall was the fact that she was a senior and we would have to find another nursing assistant in just one short year. Annie and I grew to be really close and loved every minute of our time together. It was a sad time when I had to search for her replacement for my sophomore year. Thankfully, the nursing major at Saint Mary’s is not that big, so Annie simply suggested a new young lady for me. We have decided that it was good to have a rising senior so they have at least a bit of nursing experience (they only have nursing classes junior and senior years). When I went home for the summer, Annie and I had an extremely teary goodbye. But we still keep in touch, and now she comes and be my actual nurse from time to time.
I met Claire in mid-March of my freshman year so she could start training, our meeting was not nearly as dramatic as my first meeting with Annie. Nor was it as funny! Again, we hit it off right away. And again, we grew to be really close and loved every minute of our time together. Hard to believe we have had a year together already. She has come on weekend trips with my family to be my nurse and even came to NC for a few days. Both Annie and Claire are incredible, and I would not have had the experiences I’ve had the past two years without them.
My nursing assistants are different from my nurses in several different ways. 1) Until they are knowledgeable and comfortable, they do not do anything truly medical. 2) They do not give me meds, unless they want to learn of course. 3) They are required to help with trach changes once a week. 4) They are never to be left alone with me unless they have gone through proper training. My nursing assistant job is really what they want it to be. If they strictly want it to be to help get me ready in the morning, showering, and transfers, cool. If they want to learn and maybe pick up a shift once a month, awesome! So far my experience has been incredible, and I am looking forward to getting to know my new nursing assistants this coming semester!
One of my jobs while working with the MDA this summer was to create an online portal for people to find nursing assistants. Check out their tips (that I created!) for finding and hiring nursing assistants (including sample ads and interview questions) here! One way is to stalk a complete stranger like I did (with your cousins help). Or you can put an ad in the local newspaper (in the town where you’re going to attend college) or other online job forums (Indeed, Career Builder, etc.). You can also reach out to your local nursing agencies. Perhaps there is a nursing or physical therapy school nearby. An acquaintance at your school might be a good fit too. However, I try my hardest to let my friends be my friends and my nurses be my nurses. If you are really lucky, you’ll find some people who are both!
Have a great week and tune in next week to see my favorite summer vacation memories!
July 23, 2017–Rest of Summer and Semester Plans:
Hi World! How are you doing tonight? I’m sorry that I am a day late again, but we had a house full of guest all weekend and they didn’t leave until today. I am now just trying to relax and do my homework.
Tonight I am going to tell you what I am going to be doing the rest of my summer. I am still taking my online course through Notre Dame (Robot Ethics), but this week is my last week so I only have two response papers and one five page paper left! I really like this class, but it is still annoying having to take a class during the summer. The reason why I am taking a class this summer (and last) is because I only take four classes every semester (five is just too much to handle) and want to graduate on time in May 2019. I sometimes prefer this than the whole semester of class with more work. You should try it! I “have class” two nights a week via Skype for two hours, not bad!
As for the rest of the summer I am just relaxing, having fun with family/friends, getting stuff together for my trip back to South Bend. I am just going to try to enjoy my summer, not do anything, watching corny movies, and SLEEPING! I go back to school in three weeks.
Back, at sch, ol I have A TON of stuff going on this semester, more than ever before! First, I am helping run Welcome Weekend where I am in charge of Trivia, so that should be fun! Next, I am of course continuing my term as President of the Make-A-Wish Club on Notre Dame’s campus. I am also in charge of the Big/Little Commission for my dorm. One of things I am most excited about is applying to be a RA for my senior year. It is a really competitive application, but I hope I get it!
Oh! I almost forgot, I also have four classes…oopsie! I picked up another major at the end of last semester. It’s American Studies…I cannot wait to get started! My classes are:
- Introduction to American Studies
- American Politics
- Witnessing the Sixties
- Walt Disney in Film and Culture
Have a great week and tune in next week to see how I find nursing assistants for my school year and what they do differently from my regular nurses!
July 16, 2017–Traveling:
Hi World! I hope you had a nice week! I have to apologize for not posting this late, I saw Luke Bryan last night and he was shaking it at me!
A lot of you have been asking me about how I travel. Well first, let me explain to you what it takes for me to travel. In recent years I’ve traveled a lot more than before so we (I and all of my nurses) so we are used to it by now. Thankfully, we have a list of everything that I need to bring with me and all my nurses need to do is put in the quantity in and add an extra of each. I have pink bins that all of my equipment and medicine goes in. In addition, my nurses have to check that all of my equipment is working. We can do all of that in two days, or a month. The fastest we’ve packed was when I found out I was going to be a guest at The State of The Union. And we’ve planned vacations up to a year in advance.
Once we get the packing settled we need to decide on a means of transportation. If it is a quick overnight trip a few hours away I will take my little handicapped Ford Explorer. Albeit, there is barely any room for anything else with my medical equipment and medicine, not to mention all of my personal stuff I need. If it is a longer period time with a long drive, I would take the Mercedes Sprinter. It is big and luxurious with plenty of room for my medical equipment, medicine, my personal stuff, and people! It comes equipped with a big flat screen TV!
Funny story about the Sprinter, we bought it right before my junior prom and my dad promised me that I could pack it with a bunch of 17-year-olds. Well, the morning of my prom the Sprinter was nowhere in sight. My dad promised me it’ll be there by the time I needed to leave. That afternoon, after I got home from my hair appointment there was a big black handicapped van in the driveway…it was the Sprinter. It definitely wasn’t what I had in mind, but it was there! While I was getting dressed and doing my makeup my parents were getting a tutorial. A few hundred pictures later my dad drove me and about 12 teenagers to our junior prom…what a night to remember!
Back to traveling! If I go to a hotel for a few nights then I’ll use the hotel bed (which is SUPER comfortable!), but if I go somewhere a few weeks and staying in a house or condo (like Raleigh), I order a hospital bed (for the sake of my nurses back). It’s fine, but I love the big, fluffy, comfy bed!
That is all I can think of in terms of travel. I never stay at a friends house (not handicap accessible and too much of a hassle) and I have never been overseas. If you have any questions about travel, please let me know!
Oh! I almost forgot. My dream destinations are:
Have a great week and tune in next week to see what my plans for the rest of the summer are and what next semester is shaping up to be!
July 9, 2017–Charlie Gard:
Hi World! How are we tonight? I’m feeling a little sad that it is my last week here in Raleigh, but oh well! I know I was supposed to write about how I travel, well I’m going to save that for next week because something else is on my mind tonight…
So, many of you have undoubtedly been reading the story about the little boy in London, Charlie Gard, who is suffering from a rare genetic mitochondrial disease and who the courts and his doctors have decided should die. While I do not know how brutally painful this is for everyone involved, I can certainly imagine and empathize with them. I feel the need to speak upon this topic. In some respects, it’s not too different from what my parents went through when I was 18 months old. It was about six months after my Pompe diagnosis. I developed pneumonia and almost died. I was put on life-support (ventilator). My parents were told early that morning that I would only live a few more hours. At that point, my mom and dad were allowed in the PICU. I was completely paralyzed (from the anesthesia) and had a breathing tube inserted in my mouth that was attached to a ventilator. The only thing I could move then was my eyes. In the book about our family “The Cure” the author Geeta Anand writes that upon entering the PICU my eyes locked on my moms and dads. My parents immediately burst into tears. So did I, they say. My mom and dad were expecting to come in to see me alive for the very last time and to say their tearful goodbyes. Geeta wrote, however, that my Dad said that I had a fierce look of determination in my eyes. My dad and mom later recounted that in their minds they thought the same thing “Okay. If you want to fight Megan, we will fight, too.”
I realize that Charlie’s situation is perhaps even more dire than mine was, given his brain damage. But it seems that he still wants to fight. And his parents certainly want to fight for him. I very much share the same view that my father wrote in a LinkedIn post this past week. Please read that post pasted below. Tomorrow is a really important day for Charlie’s family as the court in London hears this case yet again. I wholeheartedly agree with my dad that only Charlie’s parents can be the ones to decide his fate. God Bless and protect this sweet and innocent fighter of a baby boy. And may the voices of mercy, love, and compassion prevail. God bless.
NO GOVERNMENT CAN SUBSTITUTE ITS JUDGMENT FOR THAT OF PARENTS IN DECIDING THE FATE OF THE LIFE OF A CHILD WITH A RARE DISEASE…I read this weekend this story of little 10-month old Charlie Gard in London. He suffers from a severe mitochondrial genetic disorder. Charlie needs a ventilator to breathe and a feeding tube to eat. The extent of his brain damage is unknown. What is known is that his parents do not want him to die without one last chance for a treatment. Many parents would come to a different decision here. Each decision is gut wrenching to the core. I do not believe, though, that any government anywhere should ever overrule the decision of a child’s parents in such a situation. Once this power to decide is taken away from parents of children with devastating rare diseases, where do we stop? How can anyone be better situated than a mother and father to decide what is best for their child? Charlie’s parents must be allowed to decide the extent to which they would push his life sustaining treatments. They wore this weekend t-shirts that said: “If he’s still fighting, we’re still fighting.” Keep fighting Charlie. And keep fighting, Mom and Dad. We will be judged by history by how well we care for the weakest among us.
#SaveCharlie #KeepFighting #YoureGoingToWinAfterAll
I hope you agree with this post, if not I hope you at least understand why I felt compelled to write about little Charlie and his parents. I try not to be political on my blog, but I just felt the overwhelming need to bring this to light.
Have a great week and tune in next week to see what it takes for me to take a trip!
July 2, 2017–Update From Raleigh:
Hi World! How has the beginning of your holiday weekend been? Mine has been very uneventful, but I am going to see fireworks on Tuesday!
Tonight’s post is going to be a tad shorter than my average posts due to the topic. But don’t worry I have some juicy details for you! Plus, I’m tired tonight, but again fear not! I am forever grateful for all of you and will not give up on telling you a story.
I have had three full weeks here in Raleigh and at my job. I absolutely love it (mom, dad…I HATE it). Let me tell you a little about my job. As you know, I am interning at the Muscular Dystrophy Association, but the interesting part is that I work out of my bosses apartment. She has a form of muscular dystrophy and is part of the national office and is technically working remote out of Raleigh. Her apartment is downtown and gorgeous. She has this big wrap around patio that we sometimes work out of. I have been working on revamping the young adult website, specifically the independent living section, even more specifically, the Personal Care Assistant (PCA). I have compiled tons of information, laid out in a logical way and made a few tools for people. I am now working on a PPT (PowerPoint Presentation) to present to my boss and people higher up in the company. I am nervous, however, I am also very excited to share my work I have been doing all summer.
During my time here I am getting the time to explore some of Raleigh. But the most important thing I’ve done is visit my Auntie Am. Auntie Am is my grandmother’s sister and the sweetest person ever. She has dementia and lives in a home. I, along with my cousins, visit her at least twice a week. She does still remembers me and everyone she loves, however, cannot remember what she had for breakfast…who cares? I love visiting her. Other fun things I’ve done here is to go shopping at different boutiques, go to the movies, and go to the UNC Planetarium! This town, along with the surrounding areas is great. I am loving my time here and I definitely cannot wait to come back.
For those of you who saw my article on Notre Dame’s website, thank you for your overwhelming support. For those who didn’t here it is:
Have a great celebration of America’s birth and tune in next week to see what it takes for me to take a trip!
June 25th, 2017–My First Concert Ever!
Hi World! How has your week been? I went home this weekend for a whirlwind trip back home for my great Uncle Jim’s 70th birthday party/family reunion!
Well, it’s summertime and summertime=concerts! I thought I would share my first concert experience with you all. Like all of the things in my life, it’s kinda a funny story. At the end of my second-grade year, we had an assignment to write and illustrate a book. I wanted to do it as a surprise for my dad. I wanted to call it The Concert: A Special Outing I Had With My Daddy. A lifelong dream of mine at the ripe old age of nine was to go to see Hilary Duff in concert. In writing this book, I hoped that somehow my dad would somehow know this secret and make my book become a reality! I do not know exactly what I was thinking, but now you know what my nine-year-old head was at!
The plot of my incredibly well-written book was that Hilary Duff was coming to NYC and I wanted to see her with all of my friends and my dad surprised me with tickets. When my dad finally told me (in the book) all and my friends just had to go shopping to get new outfits (because duh!), we wanted to look “cool like Hilary Duff.” My dad surprised me with getting my friends and me a limo (again, in the book). Then, again in the book, we got to meet the real live Hilary Duff! Unfortunately, only half of my book came true…purely by happenstance.
I did not get to meet Hilary Duff, but my dad had no idea I was writing this book (he knew I was writing a book but I wouldn’t tell him the plot) until he came to our second-grade “book signing.” Unbeknownst to me, he really did he got me tickets and a limo to see Hilary Duff at MetLife Stadium later that summer! I was so excited I was jumping out of my skin! It was the most exhilarating time of my life (again, my nine-year-old self).
The concert was the absolute best time ever; we had our own private box and had an amazing view of the stage. One of the reasons I love (present tense) is because she has such inspirational songs. A few of my favorites are Fly, What Dreams Are Made Of (Lizzie McGuire Movie), and Wake Up. My absolute favorite song is Why Not:
Take a crazy chance
Do a crazy dance
If you lose the moment
You may lose a lot
So why not
It really spoke to me when I was younger and still does. If I think I can’t do something or someone tells me no, I just think “why not”! It was a once in a lifetime moment, and I’ll never forget it. But I still never got to meet her. But I still follow her even today; I love the show Younger that she co-stars in.
Have a great week and tune in next week to see how my internship at the MDA is going and what I am doing for them!
June 18th, 2017–My Experience With Spine Surgery Four Years Ago!
Hi World! How has your week been? Mine has been great! Still loving Raleigh, my job, and family!
***Warning longer post tonight!***
Because of Pompe, I can’t sit up straight on my own, so over time I developed scoliosis. A 95-degree curve to be exact. My parents took me to a doctor when I was eleven or twelve (I can’t remember exactly) to discuss the potential of my having corrective spinal surgery. However, at this age, I was adamantly against it. I was a happy and comfortable pre teen. Why would I want to change that? My parents did not force the issue because I was still growing and would need to have multiple surgeries at that time.
In February of 2013, my parents found the number one pediatric orthopedic surgeon who specialized in corrective spinal surgery, Dr. David Roye, at Morgan Stanley Children’s Hospital at Columbia Medical Center in New York City. He explained everything I needed to know in order to make my decision including that I had a 95-degree curve and that it eventually would collapse one of my lungs. Mind you, when I rolled into that appointment, I was dead set against having the surgery. However, after hearing his explanation for why I should have the surgery, I was probably around 50/50 on having the surgery at that point. His description included 1) the ease of my breathing would significantly increase, 2) I would be taller, 3) my life overall would be better. The one thing that always stuck out in my mind, however, was at the end of his explanation, Dr. Roye informed me that I would have a 10-15% chance of not surviving the operation. I took about a week to decide if I actually wanted the surgery or not. However, in the end, the benefits greatly outweighed the risks (except for the dying thing).
When I went to my parents’ room to tell them that I wanted the surgery, I only had three stipulations: 1) I wanted to schedule my surgery around my final exams so I would get out of taking them, 2) I had to custom make my own hospital gown (no way was I wearing that ugly polyester gown, just no), and 3) absolutely NO PICTURES. My parents agreed to this, because I needed at least eight weeks of recovery, and they didn’t want me to go into the operating room right after my last final exam. And they promised me that my cousin/nurse/best friend, Renae, would take me shopping and figure out what exactly we can do about the whole gown situation. So, my surgery was scheduled on June 19, 2013.
The weekend before my surgery, Nancy, Maggie, Maura, and Renae all came into town and all of my friends had a party for me. My cousins took me shopping, to the movies, Six Flags, and to get a tattoo (ok, it was henna, but still a tattoo nonetheless). It was the best weekend I could’ve asked for.
A couple days before my scheduled surgery, I got a phone call from Dr. Roye saying that he was going to change up my surgery plan. Originally, it was supposed to be a one-time surgery that went on twelve hours-fourteen. However, he wanted to break it up into two different surgeries. With the first surgery, he would correct my spine and put me into halo traction, and then with the second surgery, he would take the halo traction off and put titanium steel rods into my spine. OK, fine, no biggie.
I went in the night before with my tiara and princess wand Nancy got me, so the PICU staff knew who was in charge. AKA, ME! That night I watched Ted. I needed a good laugh.
My first surgery went perfectly fine. I went into the OR at about 8:00 am with my parents holding my hand the whole time. They switched me to the hospital ventilator, and I did not like it at all (all vents are a bit different)! But with some meds to finally help me relax I adjusted and then slowly drifted off with the anesthesia as my parents held my hand. After the surgery, I had a different trache so I couldn’t talk. That was the most frustrating part. I kept mouthing one word that we could not figure out. My parents kept trying to figure it out. Finally, my mom lifted the bed sheet and asked me to spell with my fingers in sign language. I then slowly, but clearly spelled in sign language “R-E-N-A-E”. I wanted to see Renae.
The next week and a half had their ups and lows, but the one major low was that July 1. I had a doctor come in who was 22 years old and looked much younger. Starched new white doctor coat. When my dad saw his young face (he made Doogie Howser look like the Surgeon General) he recalled that July 1 is the nationwide start of new medical residents programs. Yup, that was Day One. This nice fellow, an MD, had earned his medical degree no more than a month ago. He came in with his clipboard-armed with lots and lots of (extremely basic) questions. My dad and I were patient, to a point. It was clear that I was the very first patient he would see in his brand new medical career. I’ll spare you the details of how the conversation went, but let’s just say how would you like to be a brand new doctor and the very first patient you have to question and examine is me? And the very first Dad of a patient you have to deal with is mine Let’s just say I’m pretty sure this doc will never forget his first exam and patient interview!
The high was when hospital volunteers brought in a hospital therapy dog! I absolutely loved it. The pup took right to me. I said that the puppy in her arms was the best pain medicine she’s had…seriously!
July 5th came, the day of my second surgery. It did not go so well. When Dr. Roye put in one of the rods, he thought he paralyzed me. They had to wake me up to see if I could move any of my extremities. So, Dr. Roye had to take the rods out. Dr. Roye did not feel it was safe to complete the surgery. He said in all of his years of surgery (he was 64) that he has not had a patient who lost all motor function in arms and legs on both sides. This scared the ever living daylights out of my parents. I, however, had no recollection of this until my mom and dad explained to me what had happened the following day when I was finally conscious enough to comprehend what had happened. I needed to undergo another horrific surgery. For about a minute, I “refused” to have another surgery. However, after my “tantrum,” I decided that I was going to have the next surgery (not that I really had a choice). Meanwhile, I had to have multiple C-Scans and MRIs to make sure everything was in the right place.
They scheduled my third for exactly a week later. The third and final surgery was finally a success. Dr. Roye said it went “excellent” and could not have been better. No complications. Titanium rods are set and the fusion across all thoracic and lumbar vertebrae is complete. However, when I came back to the PICU, I was coming out of anesthesia sooner than expected and my pain meds had not been delivered from the hospital pharmacy. As I grew more awake, the post-surgical pain grew in intensity. For more than 30 minutes, I was in great pain. My dad finally went out onto PICU floor and physically grabbed the young resident (remember Doogie Howser…yeah he’s my favorite) and walked him by the arm back to his desk and had him write a stat order for morphine. I was much better after that!
I was healing nicely so they weaned me off of the IV pain meds (which took a few days because I had “breakthrough pain”. On July 15th, I got one of my IVs taken out by my favorite resident, Doogie Howser. He was “in charge” of taking out one of my larger IV lines in her right bicep. The most painful part of that was all of the tape was on my arm. Well, Doogie forgot to use adhesive remover to assist with that (must have been absent that day in medical school) and began to just rip away. At which point Megan yelled a big “Ouch!” and the hospital nurse stepped in to handle. I then shot Doogie a look that was intense and said in her my strong voice very clearly (from opening my lungs during straightening my spine, “You have absolutely no freaking idea what you are doing. None. You are NEVER to touch me again. Get the f*ck out of my room. And DON’T come back!” Doogie was counting the days until we left…my Dad physically assaults him, then the little chip off the block hits him with a verbal assault that was no less humiliating.
Two days later, I finally went home on a boatload of pain medication (Dilaudid, methadone, and oxycodone) on July 19.
In order to come to this decision, I had to make it completely on my own. I had to actually want to do it and not be pressured into doing something that I, myself, was completely against. This was a difficult decision for me, but at the end of the day, I am happy with my decision and wouldn’t change anything about it. The things that I would change are not in my power; no matter how hard I try, it could not have been in up to me to change the circumstances that happened to me when I was in the PICU.
Oh, and the picture at the top is days after my first surgery. Remember my third stipulation? My parents promised me that they would not take any pictures of me during my hospital stay, but my mom could not help herself. I wanted my hand held 24/7, it was comforting for me to know that they were always there. My mom took this picture at 5:00 am as the sun was coming up, my dad had been sitting with me through the night…he’s an awesome Dad, Happy Father’s Day Daddy!
Have a great week and tune in next week to see what my first concert ever was and the story behind it!
June 11, 2017–My Travels to the Great City of Raleigh, North Carolina!
Hi world! How was your weekend? I hope it was as good as mine!
My mom, nurse (Debbi), and I arrived at my aunt and uncles house late Friday night (9:30 pm). Right after we got to the house, Nancy (my cousin/nurse) took me to Target to get the essentials. Once we got back to the house, my cousins (Maggie, Maura, and Nancy), Aunt Mary, my mom, and I sat around the fire in our PJ’s and talked for hours. Nancy was my night nurse that night so while I was asleep, she organized my medical equipment and clothes. Saturday I slept forever, but when I woke up, my mom took me back to Target to get a few more items.
Saturday night my mom left to go home, so that was sad. After she had left, us girls went to go get ice cream down the street. Then I was officially indoctrinated into the Reilly household by watching My Cousin Vinny (which I’ve never seen). I absolutely loved it, friggin hysterical! It was a great night all around! Today, we visited my great Auntie Am (no, I do not like The Wizard of Oz) in her memory care nursing home. I was fully expecting her not to remember me (she has really declined in the past 6 months), but when I rolled in, she knew exactly who I was. Then whenever I was out of her sight, she forgot I was there, so she was just as surprised as the first time. It was funny, but also extremely sad.
Tonight I had dinner with them and my cousin, Maggie, helped me take a shower along with my nurse, Kc. It has been a great start so far and cannot wait to continue the journey tomorrow at my first day at work with the MDA!
For those wondering how I travel, here it is! I am fortunate and blessed enough to have two vehicles. One is my everyday car which is a handicap Ford Explorer. It is the first car I’ve had that I absolutely love and it looks like an actual car, however, it can be tight sometimes. The second is for long car rides which is the Sprinter by Mercedes-Benz. Maggie drove the Explorer down with all of my medical equipment then we followed in the Sprinter. If you want to look more in depth into my two vehicles I’ve added two links after my sign off that has good information!
*For anyone who emailed me ever, please forgive me! I will finish the rest this week.*
Have a great week and tune in next week to see my experience with spine surgery four years ago!
June 4th, 2017–My Travels to Boston:
Hi world! How was your week? I hope it was a good one! I just want to take a minute to say thank you to my followers; it means so much to me that you continue to read about my life’s journey. You’re awesome!
On Thursday, my parents, John Jr., and I shipped up to Boston (name that song!) for my dads 20th reunion from Harvard Business School. They have reunions every 5 years. So, to put it in perspective every year ending in a 2 or 7 was there. Man, I thought 20th-year reunions were getting, but no lie they were people there for their 70th reunions! Wow!
It was such a nice weekend. It was so nice to see my parent’s old friends and the apartment I came home in. For those who don’t know I was born in Boston during my dad’s finals week in his last year of school (Dec. 16, 1996). My dad and I went to two lectures on Friday. One was a top astronomer and astrophysicist who spoke about how we cannot possibly be alone in this universe. He said within the next 20-30 years we will know for sure. The other one was a top scientist who studies the brain and the idea of how we, as humans, have prolonged our lifespan and whether that is ethical or not. Truly fascinating topics and I felt super-duper smart sitting in a lecture filled with HBS graduates.
As far as nursing goes, I had nurse extraordinaire/cousin Renae and her beautiful family for days and recently graduated nursing assistant turned nurse Claire for nights. Friday night Renae, her family, John Jr., Claire, and I went for a quick bite to eat in Harvard Square. Then Claire and I walked/toured around for a while. I found out that Cambridge/Boston is made up of bricks, which is not very handicap friendly town. But sa la vie! I finished the night watching a movie in the hotel room.
Saturday was more relaxing. My dad was asked to give one of six TED Talks, so my mom, John Jr., Josh (Renae’s husband), and I saw him speak. Which was, of course, amazing (like his head isn’t big enough). Then we went back to the hotel, and I watched Beauty and The Beast (the new one) with my beautiful niece, Addison. Saturday night we went to John Harvard’s (I guess really famous/good)! Once the kids were in bed, Renae, Josh, Claire, and I watched The Proposal (I don’t think Josh appreciated that choice, but hey majority rules! Sorry Josh…). We returned home around 5:45 pm tonight.
It was a truly wonderful weekend, and I can’t wait until his 25th reunion in five years…I’ll be 25, wow!
*For anyone who emailed me ever, please forgive me! I will finish the rest this week*
Have a great week and tune in next week to see my travels to the great city of Raleigh, North Carolina!
May 28th, 2017–My Deepest Darkest Fears:
Hi World! Are you all enjoying Memorial Day Weekend? I am having a nice relaxing weekend with the family!
Everyone has their fears, and I am no different. I am afraid of the usual things, snakes, spiders, all things nature. It’s true; I am scared of all of those things (who wouldn’t be?!). I actually think I have ophidiophobia (fear of snakes). My hands get clammy, I start to shake, and rarely I start to cry. But I am alright so as long as I don’t see one, there’s not one in a movie, or pretty much in my line of sight. I just hate those creatures.
Let me tell you a story of why I am petrified of snakes. While I was on my Disney trip in February 2015, everyone wanted to go on the Jungle Cruise. Well, first of all, I don’t like boats (I can’t swim, I hope the rest is self-explanatory) so I was not too happy about this ride. On this particular ride, I was up on a pedestal away from my dad, Nancy, and my two nurses. So we go off into the wilderness (yay…?), and we turn all of a sudden I see a giant snake right above my head. Now albeit it was fake, but I didn’t know that! So, naturally, I threw my magical light up wand across the boat and screamed like a little girl. Then all of a sudden, we came into a cave of thousands of snakes were creeping crawling all over the place. And then I continued to absolutely lose my shit. I could not get off that friggin boat fast enough. We finally got off the God-forsaken boat–I just wanted to leave the area. But my dad wanted to “talk,” so then I proceed to lose my shit all over again. Needless to say, I absolutely hate snakes.
I guess my fear of snakes also maybe has to do with my neighbor when I was little older sister had a pet snake that I wouldn’t go near…either way. I hate snakes!
But the fear that I have, most people don’t. In my mind, I ask myself, what if my nurse drops dead in the middle of the night? That is probably the most freighting aspects of my disease. Can you imagine waking up and needing something and not being able to get it yourself? Me either. But it does scare me every night before I shut my eyes. I’ve learned to overcome it (partially), but it is always in the back of my mind.
But like anything else, I do not let that stop me from doing anything in my life. I do believe that fears can be deliberating, but just like anything you just have to move past it and move forward with your life! As I mentioned before and also sort of a theme of this blog, I am a big proponent of not letting anything, or one, stop you from living out your dream!
*For anyone who emailed me ever, please forgive me! I will finish the rest this week*
Have a great week and tune in next week to see my travels to the city of my birth!
May 21, 2017–My Summer Plans:
I will be leaving NJ the night of June 9th and coming back for a short weekend in late June then coming back for good on July 15th. Just shy of six weeks…perfect amount of time!
Another fun, well let’s just say another “thing” I will be doing this summer is taking an online class. The class is entitled “Robot Ethics”. It is two times a week for eight weeks. The class counts for my second philosophy credit. We will discuss the ethics behind artificial intelligence. I genuinely cannot wait to start this class, albeit annoying to take a summer class, this is the best and most interesting class I can take.
This is going to be an awesome summer and I cannot wait to get it started! I cannot believe once the summer is over I’m going to be a college junior!
May 14, 2017–Happy Mother’s Day!
Hi World! How are we doing tonight? I am officially done with school! I am a rising junior, wow that’s hard to believe!
Well, without further ado, Happy Mother’s Day to this amazing mommy who still looks awesome 17+ years later! I’m pretty sure this was back in my sassy days…oh wait! I’m still in my sassy days…duh! Thanks for putting up with all my sass from Day One!!! I am so thankful for everything you’ve done and continue to do for and with me! I would not be the woman I am today without you by my side each and every step of the way. Your strength never ceases to amaze me (because damn, CrossFit mad you strong!). I love the times that you are all mine and can go shopping, get our nails done, or watch a chick flick. I’m so glad all three of your kids were able to be under one roof for this special day.
For those who don’t know, my mom is My beautiful mother was born to Martin (“Poppy”) and Kathy Holleran (“Nana”) and older brother Martin John (Uncle Marty) on February 27, 1968, in Eatontown, NJ on an Army base. Because my Poppy worked for General Electric, they had to move every two years. My mom always joked that she was never an Army Brat, but a “GE Brat”. This was difficult to my mom, always moving to a new house, being the new kid and starting a new school. However, my mom always seemed to prevail and be the most popular girl in school, I always admired that about her. When she was a junior in high school, she met the person that would change her life forever…my father, but tonight is not about him.
Let’s fast forward a long time to about two and a half years ago…
One of my favorite stories of my mom of when I was in my bed relaxing watching ABC Family’s (or now Freeform’s) Baby Daddy. And this particular scene had Derek Theler shirtless. My mom stops dead in her tracks because he was on screen…”Wow…who’s that…he’s cute…he’s really cute!” Then she walked away. Little moments like that I absolutely love. When my mom isn’t pretending or acting like SuperMom (which is 99.9% of the time, cause she’s rocking) is when I love her the mostest. And…I have to agree, he is pretty fine! Now that I am older, we can enjoy more moments like this (not to my dad’s liking, I’m sure)! As I always say, I love my mom the mostest and to the moon and back times infinity, wouldn’t want any other mom!
If yall don’t know who Derek Theler is…you’re welcome.
May 7, 2017–My Crazy Dogs!
Hi World! I hope your week is going to be better than mine, or at least Monday-Wednesday (ew finals)! But I’m going HOME Thursday afternoon. Yay!
I have two crazy Irish Jack Russell named Annie (12) and Little Bear (10). I absolutely love them. Anyone who knows me knows I am a tiny bit obsessed with dogs and scream with excitement every time I see one of my furry friends! Annie is the sweet one, and Little Bear is…let’s just say the rambunctious one. The interesting feature about Annie is she has a brown spot on her back shaped perfectly like a heart. Little Bear’s special feature is that he looks more like a corgi than an Irish Jack Russell.
I’m going to give parents of any kind some advice right now…you cannot just go “look” at puppies with three young kids. You just can’t…trust me. Right now you’re probably saying “well, duh,” yeah well try telling that to both of my parents.
The story of how we got Annie is pretty entertaining. We were looking at getting a dog for a while; we were debating to get a service dog or a family dog. My mom was researching for weeks and then she found a lady who breeds Irish Jacks imported directly from Ireland in upstate NJ. One Saturday, while my dad was on a boys trip to Colorado (for once in his life), she decided to take all of us and a nurse just to go “look.” My dad knew, and he said “you can go, but please don’t let them guilt you. We’re not ready for a puppy.” My mom blew him off and promise we’re not coming home with a puppy. Welllllll, that certainly didn’t happen. As soon as we pulled up about 10 puppies came charging at us like adorable little angels. One of them my brother, Patrick, took an instant liking to. Her name was Mira (the name of our housekeeper), had a heart on her back, was born on the Fourth of July in Galway, Ireland (where my mom’s family is from). How can we not get her? So we did.
On our way home my dad called my mom’s phone, and I answered, “Hi Daddy, guess what we did today?” He immediately knew what we did by the way my voice sounded, “I don’t know, went skydiving?” “Nooooo, WE GOT A PUPPY!” “Ah. That’s nice Megs. Say, how long do we get to keep it?” My naive 8-year-old self-replied, “Uh, I don’t know, but I think until she dies…?” That is the story of how we got our beloved Annie. My dad eventually grew to love her and now when my mom’s away he even lets her sleep in bed with him!The story of how we got Little Bear is surprisingly similar. My mom was on vacation after getting over a scary sickness (she’s just fine now and hasn’t had any issues since) and my dad wanted to do something nice for her. We have been talking about getting Annie a companion. So up we went to back up to upstate NJ and “looked” at dogs. Welllllll, that certainly didn’t happen…again. As soon as we pulled up about 10 puppies came charging at us like adorable little angels. One of them I took an instant liking to. His name was Pounce, how stinking cute is that?! He was also the runt of the litter. I absolutely loved him! Sooooo we got him. And my mom was less than pleased, a puppy was the last thing she needed at that time. But, we kept him and named him Little Bear. He definitely has his own personality. He also comes with all sorts of medical problem including allergies to grass, mold, dust, and flowers, two torn ACL’s, and pancreatitis. But that doesn’t even cover the half of it.
We love our dogs, and our family would not be complete without them, no matter how crazy they may be!
And a lesson to parents…do not take your kids to go “look” at puppies if you are not prepared to take one home, cause whether or not you are…you will be coming home with one.
April 30, 2017–Extracurricular Activities:
Hi World! How was your week? I have one week of classes left, then finals, then, HOME! I cannot wait!
Contrary to popular belief, while at Notre Dame, not all I do is study or do homework or do projects. I can have fun as well! I am involved in a number of things here at college. I am happiest when I’m doing said things. It is pretty unbelievable to know what you are doing is making a difference in someone’s life.
The first and most important extracurricular activity I am involved in is the Make-A-Wish Club here on campus. I am actually the president! I started my duties this time last year. It has been great. We have raised almost enough money to give a kid a fully funded Wish! The club has put on several fundraisers over the course of the last year including a Superhero 5K (which wasn’t really a 5K, more like a 2.2 mile run), a concession stand during the Notre Dame-Duke game, a Variety Show, and a vase fundraiser. It has truly been a great experience, and while stressful at times, it has been the most rewarding!
Another activity I am involved in is within Ryan Hall. This past year I was the Commissioner for Relay for Life. This meant so much to me because one of my aunts and my mom’s closest friend had breast cancer. I wanted to give back because they gave so much to me when I was growing up. Thankfully, my aunt is in remission, but my mom’s friend passed away a few years ago. I wanted to make people, in particular women, aware of this horrible disease. I wanted to organize events to go along with that. So I applied to be commissioner! This year they started phasing out Relay for Life on campus due to lack of interest/popularity. This year when the application came out, I decided to apply to be the Big/Little Commissioner, and I GOT IT!!! This is going to be an amazing year for the Big/Little community. If you don’t know what that is, every freshman gets an older peer who can help you navigate the entire process of the first year experience! I am in charge of all of the events and reveal for that next year, I am beyond excited!
Of course, Notre Dame’s football games are like a national holiday weekend so, during those times, I (along with the whole student body) don’t do anything from about Thursday evening-Sunday midday. It’s a thing here that I didn’t really get but accepted. And to be totally honest, still don’t entirely get, but the parties are fun!
April 23, 2017–Academic Interests and Challenges:
Hi World! How was your week? I’m counting down the days until SUMMER! Are you?
While growing up, I was never into the math or science classes and often struggled the most with those. So when I came to Notre Dame, I was scared that I wouldn’t have been able to keep up with my 12 credits of math and science I was required to take. My first semester, I took both a math and science class. I dropped the math class. It was because of a combination of things; 1) it wasn’t the right class for me, 2) I was overloading myself with credits, and 3) it was my first semester, and I was just overwhelmed. So the lesson? I learned that it is alright to take 13 credits instead of the regular 16. This just means I have to take a summer class each summer to graduate on time, not a bad gig!
Let’s now move on to my major(s)! My first major that I declared as soon as I could is Film, Television, and Theatre (FTT) with a concentration in television. FTT offers both a scholarly and a creative context for the liberal arts student. My second, very new major, is American Studies. American Studies focuses on one big question: What does it mean to be an American? American Studies examines those cultures, societies, and politics from multiple perspectives. I chose these majors based upon my general interest and what I hope to accomplish in my lifetime.
Now I cannot be this successful without the help of many people. First being the Office of Disabilities. They helped me with everything having to do with note takers and tutors. While I can and do take my own notes in class, I am also provided with a note taker for each one of my classes (since I write slowly it’s a nice addition). I also have a tutor for all of my classes, sometimes for helping me understand the content, but really to assist me to finish assignments in a timely fashioned. What would take an average person two hours to complete, takes me four-five hours to complete. It really for writing papers on time or making presentations. There has been that one occasion where I was too sick to complete my paper, and I had to turn it in late. My professor was so understanding and willing to work with me on a new due date. That’s the one thing I have to say, the professors here are amazing and readiness to be there for every student.
I really don’t have many challenges while here academically speaking. But my tutors are a huge part of that.
Have a great week and tune in next week to see what extracurricular activities I am involved it!
April 16th, 2017– Navigating Through The World in a Motorized Wheelchair:
Hi World! Happy Easter! I hope you all had and are having a new long weekend; I know I am!
Well, as some can imagine the world was not made for the wheelchair bound. It was not done as smooth as I would like. And it certainly was not done step-less. It was however made for the “walkers,” who have absolutely no issue going wherever they please. Well, not me.
The worst navigating experience for me was my uncle’s wedding. I was the best flower girl he could’ve asked for; I was ready for my shining moment. When my parents and I arrived at the church, we looked up at 15+ steps with no other entrance. My mom was absolutely livid and made all the groomsmen and plus some other muscular cousins carry my 500+ wheelchair up the steps while she carried me, and my nurse carried my vent. It was a long process, but I made it for my shining moment, and my uncle and aunt had beautiful flower petals along the aisle. That’s all that truly matters!
On a cousins-only trip, after a long night, we decided to go shopping in So-Ho. We quickly realized that SoHo was not the most handicapped accessible town. NYC is pretty accessible except for the extraordinarily big bumps now and then, but every blessed store had 1-2 steps, and some had up to 5. Back then I was disappointed but understand. Now, I am older and wiser; I see that this is an issue that lies on a bigger scale. The ADA (Americans with Disabilities) Act of 1990–one of the most significant discrepancies I see is that access to public services. Every public location must be ADA compliant, sadly that is not true.
When I was growing up, I could never “go to my friend’s house and play” because I could never get in their house. Whenever I found a house, I could get into I was ecstatic! That was maybe 1-2 friends over the course of my 13 years of education. I’m OK with not getting into my friends or family friends houses, what I do have a problem with is public locations, rides, etc. not being accessible.
Deciding where to go to college had a lot of factors, but one of the biggest was accessibility. Notre Dame was the top notch. Indiana is in the midwest, so the campus is extremely flat. Also, my dorm room is 100% accessible and up to my specifications. This was a big deciding factor in my choice and me ultimately I made the right choice academically and accessibility wise. This doesn’t mean that every single building here is accessible. Like most dorms are not. One time my cousin was visiting, and she knew a guy that went here, and we got invited to a party. His dorm happened to be the furthest dorms from mine, but I made the trek. I made the trek just to find out that I couldn’t get to the 3rd floor, which was where the party was. So I made my cousin stay and have fun while I turned around to go to my dorm. I’m not going to lie, I felt sorry for myself, but after a few minutes, I picked myself up and had a disco dance party with my nurse, Kc (I may or may not have gotten that from Grey’s Anatomy, but man does it make you feel better!). I felt much better and continued with my life, cause that what I do!
One of the best places regarding accessibility is Disney World (shouldn’t be a surprise). Although, one particular ride was almost too small for me. The Finding Nemo ride, which was supposed to be completely handicapped accessible. I was directed by one of the cast members to the handicapped section of the ride. In the sweet typical Disney happy voice, the lady told me to follow her toward the handicapped seashell, while directing my family and nurses to “stay behind the yellow line, please.” She guided me toward the ride, where she had to pull down a ramp so I could get on the seashell. I wheeled onto the ramp, and the cast member pushed the ramp into the seashell. The first attempt was unsuccessful so I along with everyone else who was with me thought that I could not ride the ride. No big deal, I used to the disappointment. However, the Cast Member had another tactic in mind. She slowly and calmly pulled the ramp back out and then pushed with all of her might the ramp back into the seashell with one foul swoop. If you have difficulty picturing this, imagine someone pushing on a file cabinet draw back in with all her power. I thought I was going to go out of the other side of the seashell. She then calmly turns around and motions everyone to board the ride with her sweet Disney voice, “Ok, come on.” Other than this, my experiences have been nothing but magical.
Being in a wheelchair, can cause great happiness (like with tickets, getting to meet famous people, and not having to play sports), but it can also be the source of a lot of disappointments (not being able to sleepover at someone else’s house (like not being able to get into some stores, not being able to go to some colleges, and not getting into some dorms).
Again, I would not change my life for anything!
Have a great week and tune in next week to see my academic interests and challenges!
April 9th, 2017–Happy 50th Birthday Dad!
Hi World! How are we all doing this week? I had a busy first half of the week with having two exams, but after Tuesday at 11 am I was free like a bird (not really, but I wasn’t studying 24/7).
My apologies for being late to update. Well, I was already at 10 pm last night, but iMovie decided not to allow to me to upload the video here, so I had to download it to YouTube which took all night…and this is my first opportunity to get on my computer. Please accept my apologies!
Well, on Friday, April 7th my father officially became an old man by turning 50, yes…50! Wow! That’s like half a century! He doesn’t look a day over 37. He is just an amazing man who has done such inspiring things with his life. This might sound cliche, but I don’t care, he is my one true role model, and I aspire to be like him the older I get. With that being said…I still have a right and a duty to make fun of him whenever possible.
Words really cannot describe how much he means to me, my family, his friends, or anyone else. For his 50th I wanted to throw him a party, but he threatened my life if I were to do that. I was still completely down for the party, but my mom said no…sooo that brilliantly fun idea got nixed. So, in replacement, I asked all of his friends, family, coworkers, and generally, people who love him to record a 30-second video that includes why they love him, what he means to them, their favorite memory of him, or all of the above. Well, every single person who I asked got back to me within days! I compiled them into a video and showed it to him last night when he landed in South Bend. The video is as follows…enjoy!
Have a great week and tune in next week to see how I navigate through the world in a motorized wheelchair!
April 2, 2017–Saint Mary’s College Dance Marathon:
Hi everybody! How was your week? Mine was exceptional, especially yesterday! This week’s post is going to be a bit short because I have 2 exams I am studying for and need to keep studying for…yuck.
As some of you know by my annoying Facebook/Instagram posts, emails, texts, and/or phone calls this year I participated in Saint Mary’s Dance Marathon for the second year in a row. SMCDM benefits Riley Children’s Hospital and works to spread awareness of all the truly amazing kids in Riley’s care. My nurse’s assistant from last year, Annie, was in charge of it last year, and Claire continued the tradition this year! I had an epically awesome time yesterday!
The day of the marathon (yesterday), I danced on my wheels (for 12 hours), played games, learned an eight-minute dance, and interacted with the wonderful kids from Riley who came as guests, including my favorite man Randall. I was involved with it this year too. Since I am the President of Make-A-Wish of Notre Dame, I spoke about the foundation. Randall’s mom spoke not only about Riley but also their experience with Make-A-Wish. I was honored to be a part of SMC Dance Marathon, and can’t wait to continue the tradition next year.
Any amount of money that people donated went straight to Riley Children’s Hospital to improving their care and saving lives. Thank you to anyone who supported my fundraising efforts for Riley Hospital for Children!
Ready for how much they raised? DRUMROLL PLEASE!!!!!! $133,363.12!!!!!!!!! Is that AMAZING or WHAT??? I am so incredibly proud of the whole SMC team and honored to be a part of it!!!!
Have a great week and tune in next week to see a very special message to a very special person!
March 26, 2017–Where I Hope My Wheels Will Take Me:
Hi world! How are we all doing tonight? I’m doing just dandy! I could not be happier everyone is still reading:)
I have many hopes and dreams for my future, just as any other college sophomore may have. I am already thinking about life after graduation from Notre Dame. I would like to relocate to an area near Raleigh, NC to be closer to Nancy, my best friend, cousin, a partner in crime, and nurse. It will also put me closer to my dream jobs. The first of my two dream jobs is to become President of Make-A-Wish North Carolina and maybe eventually the President of Make-A-Wish America, located in Phoenix Arizona. My second dream job I would love have is to counsel newly diagnosed Pompe patients at Duke University Medical Center.
Any job that I may hold in the future, I want to meet the man of my dreams (I have no idea who this lucky man may be, but I have no doubt he will be amazing!). I also dream of having children with this wonderful man I have yet to meet (I think). A lot of people just assume because of my condition that I cannot have children one day. Since I was a little girl, however, I have always wanted to be a mother. I had a baby doll that I used to carry around and pretend that it was a real live baby for almost a whole year. I had all the accessories you could ever imagine, even a (used) Pack “N” Play! When I got old enough, I learned that I could have biological children, but that the process is not safe for me. I then started researching adoption ( I did not know what surrogacy was at the time). I loved the idea of adoption, but I still wanted my own biological children. When I found out about surrogacy, I had my heart then set on having two biological children. But then I realized how many kids, especially kids with disabilities, need to be adopted. So I think what I want is two adopted children with a disability–thus, making two biological children and two adopted children who I want to call mine/ours (ideally two girls and two boys). Of course, I’ll have to run it by my future, (still unknown!) husband, but this life goal has been my dream for many years, and I hope and pray that it will come true. Whether this may be through adoption, surrogacy, or both, I always knew I wanted to become a mother someday.
No matter where I settle down in my life, I want to build a completely handicap accessible house that an able bodied person could live in as well. I would want the house to have absolutely no stairs but instead have a spiraled ramp staircase. I want my kids’ rooms either to be sparkly pink with chandeliers (for the girls) or have airplanes, trucks, and Legos (for the boys). You can definitely say that I want a Pinterest style home, with organization and really cute signs.
Another one of my dreams is to travel the world and see different countries. I am currently planning my graduation trip to Italy, England, France and hopefully Ireland! This will probably be the only time that I will go out of the country (due to the nurses, the difficulty of getting equipment [medical and otherwise] out there, etc.) so I am super duper excited about this trip and can’t wait to actually do it! My one dream country/destination to visit, though I may never get the chance, is to go to Australia. It looks absolutely beautiful and captivating (plus Australian men are extremely attractive).
All my future dreams and goals go along with my desire to die with absolutely no regrets and in peace–a very, very long time from now. I plan to live my life to the fullest, as any able-bodied person would do. I even one day hope to go swimming with the dolphins. (Dad’s going to have to come up with some seriously great new medicines for that…but there’s always hope).
Have a great week and tune in next week to see why I am so passionate about dancing for Dance Marathon and how I got involved (if you want to donate, the link is below)!
March 19, 2017–Nurses:
Hi World! How was your week? I just got back to the bend and am ready to finish out this semester!
This week I’m going to tell you a bit about each of my nurses and some of my favorite stories. Hopefully, by the end of it, you can see, they’re not just my nurses, but family.
Yvonne: Yvonne is one of my oldest nurses that I have. I’m not talking about her age, but the time that she has been my nurse. She first came when I was released from the hospital when I was 20 months old…can you imagine? That’s a long time to put up with each other! But she is the one who knows most about Patrick and me. Unfortunately, she stayed in NJ to take care of Patrick, but she comes out here when Patrick does, and I see her when I’m home. One of my favorite stories between Yvonne and I is I don’t exactly have the, uh, prettiest, singing voice in the world…so she made a rule, no singing after 8 pm (she’s night shift). As you can imagine I break the “rule” all the time. But I think she secretly likes it. Yvonne is truly amazing, and I love her very much and can’t imagine life without her.
Kelly: Kelly has been my nurse since February of 2010. She is from Canada and that have been a source of an inside joke in our relationship. I always tease her about having an accent, and she teases me about being from Jersey…it’s kind of our thing! One of my favorite stories is when I was vacationing in Maine, and we went to play Lazer Tag. Well, it was two stories, but it had a (maybe slightly steep) ramp, and I just charged up and down it like I was going to win! We laughed soooo hard, and we ended up kicking ass big time! We are each such fun-loving gals that we just clicked.
Kc: Kc has worked for me for about 3 years now. Kc is also from Canada (seriously, what is with all the Canadians in my life?!), but moved to the good ole US of A when she was only a toddler. We definitely have a unique relationship! She is just as sarcastic and witty as I am, so we are in competition with who can outwit the other or be more sarcastic (don’t worry, I almost always win). I have been helping her plan her June wedding, super exciting! My favorite story from Kc and I is nothing specific, but whenever we watch The Bachelor/ette/Bachelor in Paradise she makes the funniest color commentary you would ever hear!
Ryan: Ryan (she’s a girl, not a guy)and Kc actually started working at exactly the same time! When she first interviewed, I was a bit nervous. She was a tiny little thing (I mean that in the nicest/most endearing way possible), but when she lifted me for the first time I was pleasantly surprised! She is strong like bull! In the last three years, she has been through a lifetime, I’ve dreamed about. Getting married to her true love and having a beautiful baby girl. I have been blessed enough to watch that, but I am blessed to know her as well. My favorite story of ours is when we were bored and looking for something to do, we decided to make a fun little video entitled “Fun With Tubes.”
Shanta: Shanta started a few weeks after Ryan and Kc. She is one of the sweetest people I’ve ever met. And! She isn’t from Canada, yay! One of our favorite stories is when we wanted to completely redo my closet and jewelry drawer. We are very particular and OCD so it took almost the whole summer to get it just right. Buying and returning things to Amazon, measuring things, spray paint. It was like heaven for both of us! By the end of the summer, it looked phenomenal!
Debbi: Debbi began when I came to Notre Dame. She can be quite hyper at times but has the sweetest heart of anyone I know. She is also 1/4 Canadain (seriously, though, what is with all the Canadians in my life?!)! One of our favorite stories is when she was putting my futon together, and something fell off from the ceiling and the scream that came out of that woman! I turned around, and she was on the floor in a ball either screaming or laughing…not sure which. She thought a bug fell on her, nope, it was a piece of fuzz. Granted, I would’ve done the same thing, so I can’t blame her. I never laughed so hard in my life!
Annie: Annie was my nurses assistant last year and now is my full-fledged nurse. She is this cute little St. Mary’s girl, but can definitely keep track of me. She now works in a hospital in Chicago but picks up shifts even now and then with her favorite patient (that’s me!!). One of our favorite stories is before we even met. She met my cousin, Nancy, at Duke for an internship. Nancy asked if she wanted a job…the next thing I know she’s hopping on a plane to meet my family. We could’ve been crazy people for all she knew! But we instantly took a liking to each other and was hired on the spot. She is also not to be confused with my dog, Annie.
Jordan: Jordan started after I came to Notre Dame. She worked in the ER for years, so this was definitely a change of pace for her…and she LOVES us! She can sing any song that comes to mind, especially if it’s from the 80’s. One of our favorite stories is when we went to the mall and went to Sephora and tried on everything in the store. We looked like queens!
Claire: Claire is actually Annie’s replacement and started the beginning of this year as my nurses assistant. She is also from St. Mary’s, but originally from 10 minutes away from Mall of America (how cool is that?!). One of our favorite stories is from right after we first met. She was a helper for Dance Marathon, and we danced all night long together, and it was an absolute blast!
Giovanna: Giovanna is my newest nurse, we just hired her a month ago! She is so cute and used to be a cosmetologist (perfect for my roots and nails), her husband is an ND Double Domer, and a mother. I really don’t have a favorite memory with her yet, but she has this adorable puppy named (a Yorkie Poo), Thor. I can’t wait to make some memories with her and Thor.
This post may seem like a list of my best friends, but it’s not. Each and every one of these people has taken extraordinary care of Patrick and/or I. Each, and every one of these people has saved Patrick and/I life. Each and every one of these people has made me laugh until I was crying. Each and every one of these people I consider family.
Have a great week and tune in next week to see where I hope my wheels will take me!
March 12, 2017–Communication:
Hi world! How was your week? My classes finished up, and I flew home Thursday afternoon for my spring break. Ironically, I came home to the snow…I was not amused.
Due to Pompe and my poor respiratory health, I received my tracheostomy at such a young age (18 months), I hadn’t learned to speak normally yet. Because of this, my voice sounds like I am underwater. Another thing that makes it hard to understand me at first is the fact that my jaw muscles are also weak. Therefore I can only open my mouth about 1-2 centimeters. Knowing these facts, it may seem like it is impossible to converse or understand me, but all you have to do is listen carefully, but it mainly helps to get to know me to make conversing easy.
The good-non-threatening thing about talking to me is I always have a nurse and/or parent with me that understands 97% (approximately, I’m not too good with the whole math thing…). If someone doesn’t understand me at first and they’ll repeat it until they/we know a) you’re going to be a constant in my life and will be interacting with me on a consistent basis, or b) you start answering me with confidence. Now, I will say, I’m a Jersey girl, so I talk fast especially when I’m excited, passionate, mad, annoyed, frustrated, happy, and pretty much every other emotion, but I try to give you a three-month grace period.
You know what the best invention EVER is? TEXTING! Yes, I’m a millennial, and I might be addicted to my phone, but hear (or read) me out. Texting is my main source of communication for family and friends. Can I call them? Of course! But you think it’s hard to understand me face-to-face, it is extremely hard to understand me on the phone. Really, only my parents and a few other select people (holla Nancy and Renae) can truly have a conversation with me via phone. The other greatest invention? FACETIME! This is how I talk to my parents and grandparents the majority of the time as well as my high school friends. The key to understanding me is to read my lips and listen…eventually, you won’t even need to read my lips, just listen. It’s honestly not too hard.
Some might think that I email a lot as another way to communicate, well not too often actually. I do email my professors and everyone at school, doctors, work (in the summers), my dad on occasion, and of course my amazing blog followers. Other than that, I rarely email unless it’s a blast email or tickets for something.
If I am giving a presentation or speaking in class and/or public I will have someone (either my nurse or trusted friend) to repeat after me to clarify what specifically I’m saying. I recently had to figure that one out, but there’s no mountain I can’t climb!
I know some devices will speak for me, and I’ve tried them. However, I hate the way it sounds, so automatic and monotoned, not me. I opted out of them and sign language at a very young age…my parents just think I like hearing myself talk (they’re not entirely wrong). Plus, the devices doesn’t speak Jersey like I do so I can’t have that!
Communicating with me isn’t hard as long you have an open mind and concentrate, and if no one understands a word or phrase, that’s when I whip out my phone and type it. Easy as that!!
Have a great week and tune in next week to see all of my amazing nurses who take care of me 24/7 and stories about them–there’s about 12!
March 5, 2017–The White House!
Hi World! As you may or may not know, I was invited to have a meeting with Mr. President, Mrs. Trump, Mr. & Mrs. Pence and to join Mrs. Trump in the Executive Gallery. Here are my thoughts and perspectives. My parents are the greatest.
My parents are the greatest.
I know many kids often say that about their moms and dads, but in my case, they really are something special. When my brother and I were born, we were soon diagnosed with a medical condition that not many people knew about. It’s called Pompe disease, and very simply, it causes the body to stop breaking down certain types of sugars. With Pompe and a group of conditions collectively called lysosomal storage disorders, these sugars build up and cause muscles to die.
My brother Patrick and I were really just babies when we were diagnosed. And the doctor told my parents we wouldn’t live to see the age of 5. Some thought we might not see Christmas.
My parents were devastated, to say the least. But my dad, at the time, worked for a big company that discovered medicines, and with the support of my mom, pledged to do something extraordinary: to find something that would stop Pompe in its tracks, and allow his kids, and all kids with Pompe, to live.
More than 15 years later, we are still here. That’s because my dad and his team of scientists discovered a first-generation therapy that treated our Pompe disease. It’s not a cure, but it did halt the disease’s progress. Today, I’m proud to say that I attend my dad’s alma mater, Notre Dame, and I am living life to the fullest–despite the Pompe.
All parents want to do what is best for their children. They want their kids to have better lives than they did. My dad and mom are no different: they made sacrifices so that my brother and I and thousands of others who live with these diseases can live longer and see their quality of life improved.
On Tuesday of this past week, our family met with the President, the First Family and others in the administration to talk about how to move the battle against rare diseases forward. I was pleased and honored that the President took time from his busy schedule to meet with us and that he is committed to helping us advance medicines for so many. We talked about how important it is to ensure an environment in which patients, scientists, and companies can keep working toward finding new, cutting-edge therapies and treatments, and yes, cures.
We talked about how important it was to work together with regulators to maintain the highest levels of patient safety while also making sure the development process moves to get treatments to patients as quickly as possible.
And we talked about how all of this will benefit the 30 million Americans diagnosed with any of the 7,000 rare diseases.
The political pundits are all on TV and the Internet talking about whether the President won or lost Tuesday night, and I will leave all of that political talk to them. Because for me, this isn’t about politics: it’s personal. Really personal. People like me who live with these medical conditions can only win when we raise awareness, raise money for research and raise our voices in unison about the importance of finding treatments for rare diseases, which by the way aren’t really all that rare. Most people who agree that a problem that impacts one in ten Americans is a really big problem. But it is a problem that can only be tackled one disease at a time.
My dad and mom entered this fight with the goal of finding a cure for Pompe. My dad’s company, Amicus Therapeutics, is leading the charge for three rare diseases (so far): Pompe, Fabry, and Epidermolysis Bullosa, or EB. If you aren’t familiar with EB, Google it, and you will see that it’s a devastating disease no child should have to endure.
And while Amicus isn’t there yet, I and thousands of others hope to see the day when the dream of a cure comes true. The same goes for the families of those living with the 7,000 known rare and orphan diseases throughout the world. The biotechnology industry, where my dad works, is committed to that fight. And now that the White House is on our side, I believe that the rare disease community has plenty to be optimistic about.
I’m especially optimistic because my parents have never given up hope. Every time I look at my mom’s face or hear her voice, I sense that same hope. Every time I talk to my dad about the work he’s doing with his team, I get inspired. He’s a bundle of energy, my dad. Even when I think he can’t keep up with me, he does. He talks about the science and clinical trial design and listening to patients–people my age, people his age, and younger or older people: it doesn’t matter, he listens to all of them. He never ceases to amaze me, and when he says things like “By finding cures, I want to make our company obsolete,” I don’t doubt him. And like most other kids, I also roll my eyes at him. A lot. His jokes aren’t that funny. And his dance moves are um, very, um, retro…? There’s an embarrassing video that may show up on YouTube the next time we argue about my allowance!
But when it comes to fighting for new treatments and cures, rare disease has met its match. I guess that’s why some people call him the CEO of hope. To me, he is just my dad.
In both my parents, I see the promise they made to my brother and me a long time ago. Mom and dad, and now the White House are taking the fight to rare diseases, and I believe they’ll win.
They really are the greatest.
Have a great week and tune in next week to see what I have to see how I communicate.
February 26, 2017–My Favorite Wish Story:
Hi world! Are you watching the Oscars? I’m glad you’re still reading…please continue to!
I have such a deep connection to the Make-A-Wish, specifically the New Jersey Chapter, since I have been on both sides of it, well, I have been on all three. I have been a volunteer, the daughter of the National Chairman and board member, and a Wish Kid. I’m sure if you know Make-A-Wish, you have a favorite Wish story…here’s mine.
The first time I heard of little Gracie West, it was a dreary Saturday afternoon in November of 2014. I was plugging away at my college essays that were due in less than a month and a half. I was taking a short break and surfing the web. This is when I first saw the news story on her. I was moved…
Gracie was diagnosed with Stage-4 High-Risk Neuroblastoma, a cancer of nerve cells, a little less than a year ago. This year alone she had 9 (yes, you read that correctly, 9) rounds of chemotherapy. Already, she had a special place in my heart and prayers. Nobody should have to go through that kind of pain, let alone an 11-year-old. Immediately, I thought of Make-A-Wish. I guess I should’ve read the article further because it said that in December she would go to Rome, Italy to meet Pope Francis.
The first thought I had was, “hey, if I had terminal cancer and I had one wish I’m skipping everyone and headed right for top guy…the Pope.” After I had read Gracie’s story, I forgot about her, until a cold night the following December.
Ever since my dad became the National Chairman and board member in October 2014, we had been going to a lot of MAWNJ events. On a cold December night, we went to the President’s Reception, which is a thank you to the donors. This was the first time meeting Chris Greicius—the first Wish Kid, mother, Linda. Every year during this event, Mr. Weatherall, the Make-A-Wish New Jersey President, presents the crowd with a particularly special wish. This year it was Gracie West.
As Mr. Weatherall was discussing her wish I started to feel emotional. Yes, I’m Catholic. Yes, I know (somewhat) the pain she’s in. And yes, I know what it is like to have that one question, “if you had one wish, what would it be” asked. But that’s not why I felt emotional. You see, Mr. Weatherall was trying to get funding for her wish in one week on December 16th—my 18th birthday. I turned to my dad and asked him if that could be my gift—to give Gracie her wish to meet Pope Francis. He said yes.
Fast forward six months later. It was MAWNJ Gala. I was off bidding for some fun auction items when my Dad came to get me—he had someone he wanted me to meet. Her name was Sharon West—Gracie’s mom. She wanted to thank me for my generous gift to her daughter. I wanted to thank her for her daughter’s courage. What she said next almost brought me to tears, “tell her yourself…” That was the first time meeting Gracie…she was absolutely beautiful.
Mrs. West and Gracie informed me that when she came back from Italy, she was 100% cancer free. The most remarkable part? They couldn’t find any medical reason as to why…goes to show what one little wish can do.
Last spring, Gracie presented my Dad and me with the Strong, Happy, Positive award. While I may never know why all I did was give her the Wish of her dreams, I will always always have a special place in my heart for this truly amazing girl! I’m blessed to know Grace and the whole West family.
Have a great week and tune in next week to see what I have to say about Global Rare Disease Day coming up on Tuesday—and the needs for all of us who are in the community.
February 19th, 2017–Make-A-Wish:
Hi world! How are we doing tonight? I’m glad you’re still reading…please continue to!
My one charitable organization that I am most passionate about is the Make-A-Wish Foundation. First and foremost as to why I am passionate about this is because that I was a Wish Kid. About two years before my first infusion, I wished to go to Disney World. I can honestly say that it was the best vacation of my life. While I was too young to know what was going with me (medically speaking), my parents did, and they always said that they forgot about everything: from doctor appointments to our bedtime. It was kind of a restart button for them. You guys knew that though, I told you three weeks ago!
But what you didn’t know was that two years after I received my Wish, Patrick got his own wish. This trip was about a year and a half after we got our life-saving treatment. This time it was, even more, fun and relaxing because Patrick and I were so much healthier and stronger than our last trip to Disney. I also remember this trip better, too, maybe because I was older, perhaps because I was healthier and stronger…I don’t really know. Make-A-Wish has been a constant presence in my life ever since my Wish. Once I was old enough, my parents started taking me to the annual Make-A-Wish Gala—this moment is where I fell in love with the organization, for other reasons, not selfish reasons. Kids who are much worse than Patrick and me are who need wishes and get them and miraculously are better, kids who work for Make-A-Wish years after their Wish was granted, and of course the kids who had their dying wish. I wanted to help any way possible…
Instead of gifts for my 14th and 16th birthdays, I asked for people to donate to Make-A-Wish. For the past three summers, I have interned for them and planning to do so again this summer. My hope is to one-day work full time with them after I graduate.
Kids with a life-threatening illness deserve to have hope within them and Make-A-Wish can provide at least a little of that hope for them: even if it is just to rejuvenate their spirit. Even if I give a glimmer of hope to one kid (and their family), that would be enough for me.
One of the nicest things that Make-A-Wish has done for me is presented in the picture above. I had a 6-week stint in the PICU in the summer of 2013 (A LOT more detail at a later date) for my spine surgery. On one of my last nights the President & C.E.O., Tom Weatherall lit up the castle up in pink in honor of me and my favorite color…I LOVED it!
My to dream jobs is to become President of Make-A-Wish North Carolina and maybe eventually the President of Make-A-Wish America, located in Phoenix Arizona.
***If you want to learn more about Make-A-Wish, how it started, and the little boy who made it all possible, please look at the following video to watch a story better than I could ever write it***
God bless every Wish Kid…
Have a great week and tune in next week to see my all-time favorite Make-A-Wish story…
February 12th, 2017–Ryan’s Quest:
Hello World! Wow! I had a what whirlwind of a weekend, I went home for an event extremely near and dear to my heart–Ryan’s Quest Valentines Day Ball.
One day when I was in 7th grade, my dad asked me if I wanted to attend a fundraiser with him for another not-for-profit organization. This request was not an unusual thing for him to ask of me, and it would mean I would have to look presentable and not watch Hallmark or Lifetime movies. But, I surrendered and got dressed up to be my Dad’s date for the evening. I had no idea how much of an impact that night would have on me even to this day. That night I met David and Maria Shultz, the founders of Ryan’s Quest for the very first time.
Ryan’s Quest is a foundation to benefit Duchenne Muscular Dystrophy—another rare genetic neuromuscular disease (only affecting boys) that has no treatment or cure. When I first met the Shultz’s, this was the devastating truth. Still today, there is no cure and no approved treatment. Dave and Maria’s young son, Ryan, is affected with this horrific disease. I had never heard of Duchenne before that night in 2010, but I was about to learn. I found out that Duchenne Muscular Dystrophy has a 100% fatality rate.
David and Maria remind me very much of my parents. Both have a child with a rare genetic disorder with no treatment or cure. Both have no medical background (David and Maria are a cop and a teacher, respectively). Both are doing everything in their power to save their child. Ever since that night, I have become close with the family including Ryan. His big brown eyes and contagious smile warm my heart and everyone who meets him. He lives life with a smile on his face and happiness in his heart each day, kind of reminds me of myself in some way and lots of other kids with muscular dystrophy. Ryan’s Quest hopes that their efforts will further assist those who are dedicated to finding a treatment or cure before this disease is able to take the sparkle out of Ryan’s eyes and song out of his laughter. They have raised more than $2 million over nine years.
Ryan is now 11 and is still not using a wheelchair (the doctors told him by 10 he would need one), he is defying every odd. But he is also in a new clinical trial that is doing wonders for him and other Duchenne boys. He dreams of attending Princeton University (don’t worry, when he visits ND next fall he’ll get right off that train) just like any other kid. This is all thanks to David and Maria and so many other parents like them.
Over the past seven years, I have done everything I can to help Ryan’s Quest such to raise money and run a 5K every year. I also make a basket for their Valentines Day Ball every year and attend it. About 2-3 times a year I hang out with the Shultz family and catch up on life. I will do anything I can for that family, especially for Ryan.
God bless the Shultz’s, every boy with Duchenne Muscular Dystrophy, but most importantly God bless Ryan.
Have a great week and tune in next week to see what Make-A-Wish is all about and how I am involved!
February 5th, 2017–Growing Up With Two Disabled Brothers:
Hi world! Well, I have had this blog for a month now, and people are still reading it–yay! Love that you all are loving it!
Both of my brothers have disabilities, whether learning or physical. My older brother (by one year and 360 days), John was always an energetic kid but was always somewhat shy. As the months/years went on my parents realized that John was not quite on track for his age. By the time he was one, he wasn’t even trying to speak. He didn’t speak until he was a little over three. Later in his life, around 7, John was diagnosed with a whole slew of developmental disabilities, including ADD, ADHD, dyslexia, and Asperger’s. The most prominent of these is Asperger’s. Because of this diagnosis, John never had the social skills appropriate for his age. Because of this, it was also difficult for him to make friends. For awhile, he went to a private school in Princeton that focuses on his disabilities. After a while, though, my parents thought he would strive more in public school. So when he was in 4th grade, he joined Patrick and me at Johnston Park Elementary School. John did like public school better, so he stayed there until he graduated from Princeton High School in 2014. John wasn’t quite ready for college, so he took two gap years and then in December of 2015 he got accepted to Holy Cross College (yes, the one right across the street from Notre Dame…yay!). When he got accepted to Holy Cross College I was so incredibly proud of him, but also nervous. But he proved me, and everyone else wrong, when he finished his first semester! Now onto this semester!
Because Pompe is genetic (my parents are both “silent carriers” so there is no family history of Pompe) my parents decided to get Patrick tested when I got diagnosed when he was only 7 days old (March 13th, 1998). On June 8th, 1998, they got the news they prayed they wouldn’t. Patrick had Pompe too. Patrick also received a permanent tracheostomy when he was a little over a year old and cannot walk. He is also a lot weaker than I am and therefore cannot use a motorized wheelchair like me. Patrick has a sharp sense of humor, he can say anything outrageously inappropriate with a straight face, which can make you second-guess what he said (he has the same speech impairment as I do but worse and he definitely uses that to his advantage). Because he cannot be as mobile as I am, Patrick often stays in his bed because that is where he is most comfortable. He cannot do move anything, but his thumbs, so he has a specialty computer and boy can he use it! Patrick does not like large crowds as I do so getting him to attend a family function is like pulling teeth. He’s the baby, so he gets what he wants most of the time, but oh that 1%…you don’t want to be on his bad side for that. With that, Patrick is also the kindest soul you’ll ever meet, he truly does love with all of his heart and nothing less.
These are not necessarily “disabilities,” but the way God has made them. Both Patrick and John are amazing human beings despite their disabilities. Quoting from Lady Gaga’s Halftime Show tonight, “I’m beautiful in my way ‘Cause God makes no mistakes I’m on the right track, baby I was born this way Don’t hide yourself in regret Just love yourself, and you’re set I’m on the right track, baby I was born this way.”
Growing up with two brothers who were disabled was hard, but I wouldn’t change them, just like I wouldn’t change my life. I love my brothers with all my heart, even when they’re pain in the asses. I would do anything for them, I would do anything to protect them–they are my whole world, and I couldn’t love them more.
Thank God I never had a sister, could you imagine two of me?! Not to mention I am THE ONLY princess in my family.
Have a great week and tune in next week to see what local charity I am most passionate about!
January 29, 2017–Favorite Vacations:
Hi world! Thanks for checking in again this week, I hope you are liking getting to know me and my story!
***Warning longer post tonight!***
We as a family have been many incredible places (Colorado, Florida, North Carolina, D.C., and Oregan). I love traveling, but it is a lot of work and preparation. My room but here and Princeton, NJ is set up like an ICU (but way prettier). Imagine taking that on the road for several days or ever weeks–a lotta work! In planning a trip, we (I say we like I have something to do with it, nope, but thanks to all my nurses!) have to plan months in advance.
One of my favorite vacations was February of my senior year of high school, my dad was going to Orlando for a business trip. I asked him if I could tag along with him. His response was a typical dad response, “Don’t you have school or something?” My response was a typical eighteen-year-old with senioritis response, “Dad I have a 3.67 GPA and its second semester in my senior year, and I’m already in college!” Needless to say, my dad gave in and let me accompany him to Orlando. Now all I had to do was contact my trusted sidekick to see if she wanted to go to Disney. Nancy, my very best friend in the world, (third) cousin and nurse, would never give up and opportunity to go to Disney with me! So, my dad, Nancy and two of my trusted nurses hopped a plane to Orlando the second week of February of 2015.
When we landed, we headed to our hotel, and then we hopped in a car to go to Epcot. We were so excited to be there on the first night. Our first stop was the Finding Nemo ride, which was completely handicapped accessible…yay! We were directed by one of the “Cast Members” to the handicapped section of the ride. In the sweet typical Disney happy voice, the lady told me to follow her toward the handicapped seashell, while directing my family and nurses to “stay behind the yellow line, please.” She guided me toward the ride, where she had to pull down a ramp so I could get on the seashell (I was no more than 10 feet away from my dad and nurses). I wheeled onto the ramp, and the “Cast Member” pushed the ramp into the seashell. The first attempt was unsuccessful so I, along with everyone else, thought that I could not ride the ride. No big deal, I used to the disappointment. However, the Cast Member had another tactic in mind. She slowly and calmly pulled the ramp back out and then pushed with all of her might the ramp back into the seashell with one foul swoop. If you have difficulty picturing this, imagine someone pushing on a file cabinet draw back in with all her power. I thought I was going to go out of the other side of the seashell! She then calmly turns around and motions everyone to board the ride with her sweet Disney voice, “Ok, come along.” Even though I could’ve snapped my neck and cracked my suction canister (both bad), it was hysterical! I even loved the ride.
After the extremely joyful experience of the Nemo ride, I had a close encounter with a typical tourist family in matching white polo tee shirts and matching khakis. As the gang and I headed toward our next destination, I rounded a corner a little on the fast side, I apparently scared the life out of “tourist dad “ who felt the lives of his family were severely in danger. He quickly huddled his family under his arms and ducked down low as if being attacked by a bear. I managed to avoid laughing in their faces while I passed them by a few feet. I quickly stopped and turned around to see my gang’s reaction to the near miss. All of us were laughing at the overly protective father’s moves.
After a long afternoon at Epcot, we headed to find a place to watch the fireworks. Because it had become very dark (duh, because you can’t see fireworks in the daylight), I could not see where I was going, and people kept bumping into me. My dad thought it would be a good idea to buy a lighted wand so I could see and be seen. Little did he know that would be the worst idea of his life. Literally worst. Because of my mischievous nature (to put it nicely), I decided to use the lighted wand as a weapon to keep people out of my way. Nancy tried to stop this behavior, so I decided to hit her with the wand. She quickly snatched it way from me and began hitting me with it. My dad decided to stir the pot a little and encouraged me to defend myself by buying another wand. This was turning into a battle royal between Nancy and me in the middle of Epcot. I was so engaged in this battle that I didn’t know what the people around us were thinking. I can imagine that they thought Nancy was the most heartless person in the world because she was hitting “the poor girl in the wheelchair.” Little did they know that I started it. Although there was no “official winner,” I totally won that battle.
Another one of my favorite vacations also has to do with Disney, but much earlier in my life. I am a Wish Kid. My favorite charitable organization that I am most passionate about is the Make-A-Wish Foundation. About two years before my first infusion, I wished to go to Disney World. I can honestly say that it was the best vacation of my life. While I was too young to know what was going with me (medically speaking), my parents did, and they always said that they forgot about everything: from doctor appointments to our bedtime. It was kind of a restart button for them. We stayed at Give Kids the World, ate ice cream, rode every ride twice, and got a kiss from Cinderella. I did not my face for the entire week because of that kiss, it was on my left cheek, it was the best kiss of my life (I’m sure my dad will appreciate that).
My very best vacation of my life was during my sophomore year of high school spring break. Nancy and Renae (my other very best friend in the world, (third) cousin and nurse,) decided to have a girls night in NYC. This would be the first time that I had gone overnight somewhere without any of my nurses or parents, and I couldn’t have been more excited! When March 30th, 2013, rolled around I could not contain my excitement. Renae and Nancy packed up all the medical equipment that I would need for next twenty-four hours and all of our luggage (and if you know us at all is a lot more than the average person) into the car. We were ready to go on our adventure. We checked in to the Hilton a block away from the theater where we would see Rock of Ages. We got all glammed up for our big night out. I always forget how amazing a Broadway show can be until I see one again. Rock of Ages definitely did not disappoint. It was undoubtedly the best show we have ever seen (and we have seen a lot). The best part of the show was handicapped seat were in the first row. When we got back to the hotel room, we stayed up half the night talking about everything we could ever imagine. We gossiped and had a lot of questions answered about family and life (I cannot share those stories, sorry!). I could not have asked for a better night.
The next morning, we woke up early, and we were off to SoHo. We quickly realized that SoHo was not the most handicapped accessible town. But don’t worry us girls found street vendors that had knock offs of our favorite brands. Where there is a will, there is a way…to shop! After our shopping escapade, we made our way down toward Ground Zero It was the most powerful experience I had in a long time. I had known about 9/11, but to actually be at the place where it happened with my two best friends made it an experience I will never forget.
These are just a few of my vacations and stories to go along with it! I love traveling and hope to go aboard soon!
Have a great week and tune in next week to see what it like living (or used to live) with a brother with Pompe and a brother with Aspergers.
January 22nd, 2017–Obstacles From K-12:
Hi world! Thanks for checking in again this week, I hope you are liking my writing style and storytelling so far!
I went to kindergarten through my senior year in the Princeton Public School System. I started at Johnston Park Elementary School in September 2002. I wasn’t nervous to start school for a few different reasons: 1) the teacher who was assigned to me, Mr. Flechter, came to my house every day the summer before and get to know me and understand me, 2) I was almost excited to go to school and start learning (that didn’t really quite last that long), and 3) because of my parents. My parents always told me that I could be and do whatever my heart desired, so I did just that. Like any kindergartner, I definitely had my apprehensions, but when I walked in the classroom, two kids came running up to me, Carly and Sophie. We instantly became best friends. That early on, I only went half day, so I went home at noon. On Monday, January 7th, 2002 I said my goodbyes to the class for the week because I was off to my very first infusion. A couple hours after I started my infusion the phone in the hospital room rang. It was my entire kindergarten class calling to say hello! I talked to everyone in my class, after 45 minutes my parents had to tell me to hang-up…typical!
The rest of elementary school was smooth sailing from there, I had a graduation party for my entire class in 5th grade, it was a Luau themed. Then came middle school, I attended John Witherspoon Middle School. Around this was the time where most girls my age begin their catty stages, I was blessed enough to surround myself with amazing friends who are still my best friends today. I was in the 6th grade Talent Show with three of my friends dancing and lip syncing to 7 Things by Miley Cyrus–it was certainly a sight to see.
High school was the same story, different day, but I was a part of the Prom Committee, Fashion Club, and a particular political club that shall remain nameless. My tutor in high school believed I couldn’t finish in the allotted time, she wanted me to finish in 5 years. When I told her “no”, she quit. So I had to do it on my own with different tutors every year, but I did it! We didn’t have a class rank in my high school, so I don’t know where I placed in the class, but I’m a sophomore at Notre Dame so I gotta assume I was pretty high on that list. I graduated in June 2015, that is definitely one of my top ten days…ever.
I’m going to type a little bit about what kind of accommodations that I received all throughout school, even now. First, I have 100% extra time on quizzes/tests/exams since it does take me longer to write/type. Which brings me to my next accommodation, on any quizzes/tests/exams I can type essay questions on my computer. The reason for this is because my handwriting is pretty bad and so my hand doesn’t hurt. Other than that, I do my assignments the same way the rest of my peer with the exception of having tutors help do things in a timely matter. As far as tutoring goes, they help me do anything from writing thesis statements, to writing papers, to helping me study for exams.
All throughout school I had my own bathroom in case I needed to use or if I just needed to take a breather. Both the Princeton Public School System and Notre Dame are phenomenal at giving me exactly what I need, I could not be more blessed.
Have a great week and tune in next week to see what my favorite vacations have been and the funny stories to go along with that!
January 15th, 2017–Life at Notre Dame:
Hello World! Hope you had a great week!
This blog post comes at a perfect time because I am writing this as I sit in my dorm room getting ready for class on Tuesday. I just got in a few hours ago and had to bring all of my bags in (but in all fairness two were medical, one was my purse, one was my computer bag, and another was my PT bag, so really I only had one bag of clothes). But now I am in my PJ’s ready to write for all of you!
My life here at ND is really no different from mine at home, except it is completely different! The one big change that I had to get used to is the weather (if you don’t live in the midwest or Canada you don’t know what cold is)! It is freezing out here, life -5 kinda freezing. And there’s this thing called “lake effect snow” that I learned about last year, it’s just not fair. But that also means I have some really cute winter wear! So I guess that’s an even trade.
Another aspect that I had to get used to was the fact I had to have every minute planned in my life. At home, my mom was always around if I needed a transfer or a shower (I need two people to help transfer me), but now I need to schedule people. Thankfully I have a nurses aid from St. Mary’s come to help shower me and do a few transfers (thanks, Annie and Claire!). However, their schedules and mine don’t always match up, so I have to rely on Ryan Hall’s staff (we have six RA’s, two AR’s [Assistant Rectors], and one rector) for transfers and they have been more than willing to help out whenever necessary. I try to make a schedule for transfers, but sometimes I need to lay down and stretch. When that happens, I send out a massive group text to see if anyone is around. 99.9% of the time someone is around, but once last year there wasn’t. Luckily, one of my very good friends lived across the hall from me, and she graciously agreed to help (thanks, Kristen!)
But those are all kind of boring, let’s move on to more exciting things about life at Notre Dame! I think I’ve mentioned before that I’ve been to all of the home football games, but I don’t really enjoy the game itself. I love the music, people watching, and parties. Plus our house here in South Bend is always filled with family/friends. But I really enjoy the basketball games, unfortunately, that sport is not as big of a deal as football, but I still have fun anyway!
Ryan Hall is probably the best out of everything here (even the classes–imagine that!). It is right on the edge of campus and right next to the bookstore (Dad isn’t too happy about that). Every Wednesday we have Waffle Wednesday Mass in our Chaple of St. Anne’s with our live-in priest Father Joe Carey (or as we like to call him, FJ). It’s a great way to come together as a community at peace for a half hour in the middle of the week. Ryan Hall was built to be 100% ADA compliant. Now, some people (like my father) says that I have the best dorm room in America. Well, he’s not wrong! I have two bedrooms, a living room, and a bathroom all to myself. This room was meant for four people, but since I have a bunch of medical equipment (and clothes…) they let me have it to myself! I don’t feel like I am missing out on the “roommate experience” (I hear it can be bad), I just leave my door open and meet tons of people. Plus I would feel very bad for that poor unfortunate soul.
I guess I have to talk a little about academics, huh? Well alright. I take 13 credits every semester (four 3 credits and one 1 credit classes). While I take my own notes in class, I am also provided with a note taker for each one of my classes (since I write sort of slow it’s a nice addition). I also have a tutor for all of my classes, not for helping me understand the content (except for math and science, totally don’t get that stuff), but to help me finish assignments in a timely fashioned. What would take an average person two hours to complete, takes me four-five hours to complete. It really for writing papers on time. I’ll end with saying that my favorite class of the year and a half I’ve been attending Notre Dame was my Freshmen Seminar with the previous President of the University Father Monk Malloy–it was absolutely fascinating!
Oh, and I got to tour the football locker room a few times and go on the field (hence the picture)!😜
Have a great week and tune in next week to see how I got through kindergarten through my senior year of high school!
January 8th, 2017–Life With Pompe:
Hello World! How has your week been?
Thank you for your overwhelming response from last week’s post, I so appreciated it! I got a ton of positive feedback, and I could not be more thankful to have such amazing and supportive people in my life. This week, I am going to discuss a little more about what it is like to live with a rare genetic disease (in my case, Pompe, #Duh).
I live my life as normal as possible, but sometimes that is difficult. As I discuss in my FAQs section, I have never been out eye/earshot of another capable human. Since I grew up this way, it honestly doesn’t bother me much at all. In fact, I tell every one of my nurses that they are not just my nurses, they’re my family. I have a special and unique relationship with each of my nurses. While I do wish that sometimes I could sneak out sometimes and do something reckless, I wouldn’t change it for the world. With that being said, the thought of someone not being within earshot from me scares the daylights out of me. Why you ask? What if I became disconnected from my vent? Well…30-45 seconds before I change color…45-60 seconds I would pass out…3 minutes I’m brain dead. So yeah, I do not like the idea of me being alone. When I was younger, I had dreams of my nurses dropping dead. I have since grown out of that dream, but it is always in the back of my mind. But, luckily that has yet to happen, and hopefully, it’ll never happen!
Since Pompe profoundly affects the muscles I cannot take anything by mouth. The way I get the nutrients necessary I have a G-Tube that gives me all of my food, water, and medicine. It is a little balloon in my stomach connected to a longer tube on the outside of my stomach. When my nurses have to change the little balloon in my stomach (every six months), it is the most painful thing I go through on a routine basis, but it only hurts for a few minutes then it goes away! To me, having a G-Tube is one of the best things ever! I don’t have to waste all that time eating and drinking, but it becomes a problem when my nurses get hangry…but I get them food and all is good!
Speaking of pain, I really don’t have any daily or chronic pain (thank God!), the only thing that would come close is my spine/entire back (that’s a whole other post I’ll do on the fourth anniversary in June). Pain is a horrible, horrible thing, but I am blessed to have none on a daily basis.
Having Pompe comes with a lot of therapies, luckily I have grown out of most, in fact, all but one. I have PT every weekday for one hour. PT helps with the extension of my joints and keeping my muscles as strong as they can. When I was little, I used to hate PT, but now I actually tend to enjoy it–it’s like my own version of CrossFit!
As you can probably guess, I like to see myself as a normal 20-year-old girl. Having Pompe and all the challenges that come with it does not bother me in the slightest and I would hope that anyone else with Pompe feels the same.
Have a great week and tune in next week to see how life is at Notre Dame!
January 1st, 2017–Introduction-About Me:
Hello World! Welcome to the first post on High Heeled Wheels!
*If you want to know the beginnings of my life and how it came to be, please go to the About Me page at the top*
First of all, I want to say thank you for visiting my blog and taking the time to read it. I have wanted to write this for a while, and I finally decided to do it! I hope this reaches many people beyond my close friends and acquaintances–so please share away!
This post is going to be an introduction to me as of today. Let’s start with the obvious, I HAVE POMPE DISEASE (IN A WHEELCHAIR AND ON A VENT), BUT THAT DOESN’T STOP ME! (For more information on that exactly is, please go to the Pompe page at the top.)
Now that is out of the way, let’s get into some more specifics. Because of Pompe, I cannot eat, drink, walk, or breathe (on my own). So because of this limitations, I have to rely on some amazing technology such as a G-Tube, a motorized wheelchair, and a vent. I do not remember not having any of these so I honestly sometimes kinda forget (not really, but it is just second nature to me). But what I can do outweighs what I cannot do, and that is live life to the fullest!
As some of you know, I am a sophomore at The University of Notre Dame majoring in Film, Television, and Theatre with a concentration in television. I absolutely love it! Some of you might be thinking that I am not the biggest football fan–you are exactly right! But it’s still fun to watch the Irish come out and sing along to the fight song–for the first half anyway. What some people may not know is that I enjoy basketball a lot more! I can’t wait to go to some games (men’s and women’s) once I get back on campus. I do have other activities at school other than homework and sports games. One of my favorite things that I’m involved in is the Make-A-Wish Club on campus. I am actually the President, so I am a lot involved in that, and I love it–it is just so rewarding! Another activity that I am involved in is I am the commissioner of Relay for Life for my dorm, Ryan Hall (if you go to ND, just admit, it’s the best dorm on campus…thank you!). I also host TGIT in my room every Thursday, it’s the best. So you see, it’s not alllll work!
Anyone who knows me knows that I a shopaholic. I absolutely love rolling into the mall with no bags and rolling out with something. Yes, that might hurt my Amex, but hey, my Dad gave it to me, right? So maybe I’m not a shopaholic I’m just helping the economy! Yep, let’s just go with that.My favorite stores are…all of them? OK, OK, OK, if I had to pick it’ll be: the ND Bookstore, VS, Sephora, Lucky, Buckle, Lulu, and Lilly! It’s funny, whenever my cousin (also my nurse [sometimes]), Nancy, is with me my Dad’s Amex bill always seems to go up…hmm. Oh well, he’ll live!
This is a little sneak peak into my life, and what my life consists of as of now, ND and shopping sounds about right. I am blessed to have been born into such a loving and caring family who would (literally) do anything for me, and I can’t thank them enough. But don’t be fooled, they are crazy too, I’m sure I’ll have a whole post about that!!!
Thank you so much for visiting, and I hope you come back next Sunday to read more about my life with Pompe, how it really doesn’t bother me, and the struggles people don’t realize I have! If you have any suggestions about how I can make this blog better or have a question, please don’t hesitate to comment/email me at firstname.lastname@example.org Thank you so much for all your love and support!