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 school 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 email@example.com Thank you so much for all your love and support!