Matilyn

It was a total surprise to us when my little angel, Matilyn, was born with webbed fingers. At least that’s what we thought at first was wrong with her left hand. The Doctors rushed her out of the O.R.quickly to reserve her intestines that were protruding out of her abdominal wall. Matilyn was diagnosed with gastroschisis when I was only 12 weeks pregnant, during my first sonogram. I had a cesarean section to prevent the intestines from pulling anymore so when they yanked her out and showed her to Matthew, that’s what he responded with.”Shelby, she has a hand defect, they’re webbed.” Not knowing that there was no hand at all. We knew she’d be in NICU for a week or two but had no idea what the doctors would say to us scared, young new parents next. On day two of her life she had the surgery to put her insides back in place. As we sat there staring at this perfect innocent life, hooked to a ventilator, so drugged up she barely looked alive, this tall, stalky dark skinned man Dr. Perez came to tell us the most confusing thing I had ever heard. He told us in a thick Spanish accent, “Your child has a rare syndrome called Moebius. This means that she’ll never smile and probably never have a normal life. She’ll need a g-tube to eat for her.” I think I was mostly shocked because I let him walk away without asking any questions except how to spell it. I was thinking about how wrong the doctor was for the next few days while watching my beautiful daughter not make any funny baby faces. Just still and doll like, or even frozen. I fought the doctors with the g-tube telling them that we can just squeeze her checks together to help her suction onto the bottle. The day that the doctor came in to ask my grandma what drugs I had done was the day that we finally told them that she’s going home us and we don’t care if they say no. I was determined to make this little girl grow without another surgery that would set her back in life. Today, Matilyn is so healthy and she does live a normal life. AND! She does smile. Luckily Moebius only affects the left side of her face so on the right there is a huge upright smile when she’s happy. She’s wearing a 4T and she’s only three. 🙂 She talks clear and loves reading books, doing puzzles and watching Disney movies. If I could change her, I wouldn’t. She wouldn’t be Matilyn without Moebius and I probably wouldn’t be me. I am glad of Moebius because I have the opportunity to educate people about something they have never heard or thought of.

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