FAQ:

dont-let-anyone-dull-your-sparkle.png

  • Why are you in a wheelchair and on a ventilator?
    • Pompe makes my muscles extremely weak that I cannot move my legs to the extent that I would need to walk, I can only swing them a little bit. Because lungs and diaphragms are muscles too, I need a ventilator to breathe. Some people only are on a ventilator a few hours a day, or at night, however, I am on the ventilator 24/7. If I become disconnected from it, I cannot even take a breath on my own, that is the main reason why I have nurses 24/7.
  • Why do you have a speech impediment?
    • Because I received my tracheostomy at such a young age, I hadn’t learned to speak normally. Due to this, my voice sounds like I am underwater. Not only that but my jaw muscles are also weak, and I can only open my mouth about 3-4 centimeters. This may seem like it is impossible to converse or understand me, but all you have to do is listen carefully and get to know me better to make conversing easy. I am always up for repeating too, plus I have a nurse who understands me too!
  • Does it bother you that you have eyes/ears on you constantly?
    • I have never in my life been out of eye/earshot of my parents or a nurse. That means I have zero privacy…ever. Most of you will probably want to shoot yourself when you read that. Honestly, because I grew up like that I am completely accustomed to it and I think that it is partly why I am so open. With that being said, I, of course, sometimes want to slam my door and scream into a pillow about various things, but I don’t. My nurses are pretty good at knowing when I am in one of my “moods” and leave me alone as much as they can. So, no it doesn’t really bother me at all that I have eyes/ears on me constantly–it actually freaks me out of the thought of being alone.
  • If you could not have Pompe, would you?
    • The answer to that is easy. Absolutely not. Most people think that’s undeniably insane. But to me, it is truly a blessing in disguise. If I did not have Pompe, I would not know anyone in my life at this moment besides my family. I would not know the amazing doctors or nurses that I have come to call family. I mean, if you think about it, I spend a minimum of 36 hours a week with each one of my nurses. They know everything you can ever imagine about me. I wouldn’t change a single thing about it. I would also never have met a lot of other people or done some of the amazing things I’ve done. Such as attending my own family’s book signing or movie premiere, met Harrison Ford, go on two Disney trips, or attend The University of Notre Dame–all amazing things!
  • Does anyone else in your extended family have Pompe?
    • Nope! Patrick and I are the only lucky ones:)
  • Have you met anybody else with Pompe (aside from Patrick)?
    • Yes! Tons of people I have connected with through Pompe. My family and I are close to several Pompe families, and I am on 2-3 Facebook Pompe pages discussing various aspects of the disease. I love meeting new Pompe people/families, it is fascinating how we are all different yet the same.
  • Do you want a family?
    • Since I was a little girl, 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 baby for almost a whole year. When I got old enough to learn that I could biologically have children, but that the process is not safe for me, I started researching surrogacy and adoption. To this day, I have my heart set on having two biological children and two adopted children.
  • Does Pompe affect your brain?
    • I’m a sophomore at Notre Dame, what do you think?
  • Is it contagious?
    • Not that we know of;)
    • No, it’s a recessive gene and no one can “catch” it
  • Have I ever walked/crawled?
    • Unfortunately not, but I never say never!

19 thoughts on “FAQ:

  1. JULIE ANN MASICK says:

    MEGAN…YOU ARE TRULY AN AMAZING GIRL!! I AM A FRIEND OF YOUR GRANDMOTHER BARBARA FROM BERGENFIED NJ … WE WEREN’T “BFF’S” (SO TO SPEAK) IN HIGH SCHOOL, BUT KIND OF RE-CONNECTED AT OUR CLASS REUNION IN OCTOBER. WE’VE BOTH HAD SOME TRAGEDY IN OUR LIVES, AND IT WAS VERY GOOD TO BE ABLE TO TALK TO SOMEONE WHO TRULY UNDERSTANDS. I ALSO LIVE IN FLORIDA…SO WE HAVE MADE SOME PLANS TO GET TOGETHER WITH A FEW “NORTHERN” FRIENDS WHEN THEY COME DOWN FOR THE WINTER. I HAVE A GOOD FRIEND WHOSE DAUGHTER GRADUATED FROM ND LAST YEAR…HER LAST NAME IS CORRISTON. I WILL KEEP UP WITH YOU AND YOUR GREAT EXPECTATIONS AT ND…AND REMEMBER: WHEN LIFE GIVES YOU LEMONS – YOU MAKE LEMONADE! YOU HAVE ALREADY MADE MORE LEMONADE THAN ANYONE I KNOW. STAY POSITIVE AND STUDY HARD. PS. I AM ALSO THE BIGGEST SHOPAHOLIC….THAT’ WHY I LIKE YOU. GREAT SHOPPERS THINK ALIKE! JULIE MASICK

    Liked by 1 person

  2. Carol Whitfield says:

    Megan, you are amazing! God has such great things for you in your life, you are just getting started. Our daughter who is 5 years old was diagnosed with Pompe’s disease when she was a newborn, she is the 2nd one in the northwest to have pompe’s. We are foster parents & they needed a home for this precious little one. We met her and fell in love with her, we did not know at the time we would adopt her, but two years later we adopted her. She is 5 now and she does walk, but falls a lot, she has hearing aids, she is getting a service dog & a wheelchair soon to help with her walking long distance. She is smart and funny, she loves people! reading your blog helps us understand what her future can look like. We want to make sure we are giving her the best. She will start kindergarten this next year and we really do not know what that is going to look like for her, she can learn she just can’t write, we are trying to figure out what all she is going to need to help her. She needs help sometimes with her clothing because she is weak and does not have the strength to get her pants up or shirt on. I look forward to you writing about your kindergarten years, I think it will be helpful for us to read how it looked for you. Were you in a regular kindergarten class room?

    Like

  3. Olga says:

    Dear Megan,

    I have found out about you from Tim Ferriss’ show, and your father is amazing man. Tim and him held very inspiring conversation which influenced the way I think a lot!
    You must be an amazing outstanding human, though I don’t know you in person, I wish you TOOOOOONNNNS of health and I hope one day you’ll be steadily standing on your amazing two 😉

    You are so positive, this is so coooooool! And thank your dad from me please, his talk was wonderful!

    All the best,
    Olga.

    Like

  4. Patti Clevenson says:

    I listened to Tim Ferriss’s podcast and it was the first I’d heard of Pompe. You have made a blog that is so educational and inspiring. I am in awe of your accomplishments and positivity.
    I work in the healthcare field but have never seen a ventilator or some of the other medical equipment you put on your website. So that is unique and rare to see some of the equipment you use everyday. Keep writing. You will have a wide audience.

    Like

    • mcrowley96 says:

      Hi Patti!

      It’s funny, the equipment is rare to you (even in the medical world), but ordinary to me. Thank you so much for supporting me. I am so appreciative that you are now following me!

      XOXO,
      Megan

      Like

  5. Joshua Osterman says:

    I love your spirit. Thank you. You are a reminder of how powerfully a loving family can impact the world. Thank you for sharing your life so openly. I loved picking up on your sense of humor through your use of parenthesis to reveal your concealed, honest opinions. Please keep that up, you are really funny! I look forward to learning more about you and sharing in life’s journey.

    Like

    • mcrowley96 says:

      Hi Josh!

      Thank you so much for supporting me. I told myself before doing this that I couldn’t do without being 100% open, I think I have done a good job at it so far! I am so appreciative that you are now following me!

      XOXO,
      Megan

      Like

  6. Smaggie says:

    I wish you the best, always for you and your family !
    I loved learning about your family’s story and about pompei ! I listened to the podcast of your dad and Tim.
    I’m happy that you have such a great point of view and outlook in life I wish everyone did. Good luck and I wish you much success with this blog !

    Like

    • mcrowley96 says:

      Hi Maggie!

      Thank you so much for your support, I really appreciate it! The goal is for people to forget I have Pompe and see the real me! I’m also trying to spread good thoughts!

      XOXO,
      Megan

      Like

  7. Ivan says:

    Hi Megan!

    Your story is truly amazing! I have endless appreciation for your attitude towards life. The way you think and what you write is how everybody should cherish life and every second of it. Life is a gift and we should love all and every second of it! Keep sharing your story and the world will be a better place, people will be happier and will have a greater appreciation for life! A huge thank you from Russia! Looking forward to more blog posts!

    Ivan

    Like

  8. Debbie Clemo says:

    Megan,

    Although we have never met I have followed your journey from almost the beginning. I live in Baltimore Maryland. My husband an myself knew your Uncle Joe. We have a auto shop and on several occasions your uncle brought your parents cars to us for body repairs. I was so sorry to hear of his passing.

    In 2006 we were blessed with a beautiful granddaughter. At the age of 9 months she was diagnosed with CMD. My daughter got your dads book. After reading it she contacted him via email. His response and support of my daughter was overwhelming. It is thru watching you that I have great hopes for my granddaughter to have a full and happy life. You are an amazing young woman that all of us could learn so much from. As my granddaughter grows (soon to be 11) I will have her following you as a role model.

    Keep wheeling those high heels girl. You are an inspiration to so many facing life’s challenges. I wish you all the success and happiness that life has to offer.

    Much love to you and your family.

    Debbie

    Like

  9. esther says:

    Megan! I am reading your Dad’s book for nursing school and I was so excited to find your blog and website! Now I can directly say hello to you and let you know how I was caring for you in the book…I feel like I know you!

    I work in a camp for children with chronic and genetic disorders so I appreciate your story deeply.

    I want to wish you many more happy and healthy years!

    -Esther

    Like

    • mcrowley96 says:

      Hi Esther!

      I’m so glad you found my blog. I try to make it for everyone with or without disabilities and people of all ages.

      Thank you for your support! I’m glad you’re enjoying it!

      If you ever need a job, hit me up!

      God bless

      XOXO,
      Megan

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s