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A Letter to My 3-Year-Old With Nemaline Myopathy

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Photo above by Living in the Light.


I still can’t believe that three years ago, I became your mother. I’ve watched you grow from this tiny, beautiful and fragile little baby to this larger-than-life little boy.

I remember holding your tiny little body, not even 24 hours old, on my chest and feeling overwhelmed with so many emotions. Nervousness, learning to take care of a little baby. Uncharted territory. Exhaustion because, little one, that delivery was one hell of a ride. And complete happiness that you, beautiful baby boy, were mine.

mom holding infant

I stared at you in wonder, your heart-shaped mouth, your 10 tiny fingers and toes. I felt this all-consuming and indescribable love for you and for your daddy. We went from a couple to a family overnight. I finally knew what they meant when they said that having a child was like forever having your heart go walking outside of your body. My heart was now lying on top of my chest in the form of this little miracle. You were so much a part of me, of your daddy, of everything I loved, and I never wanted to stop holding you, breathing in your yummy baby scent.

A little over a week later I all of a sudden couldn’t hold you because my heart was now lying in a hospital crib connected to tubes and lines and sensors. We didn’t know what was going on and why your body was failing you, but I have never felt such anguish. I couldn’t hold you when you needed me most, and one day I cried until your nurse let me hold you. They were scared to move you with all your tubes and lines, but I promised (more like tearfully insisted) we would be extra careful. When I finally had you back in my arms, you fit like a missing puzzle piece.

For a while, I had this irrational fear that you wouldn’t know I was your mommy. There were so many doctors and nurses coming and going, and our bonding time was interrupted with the daily routines of the pediatric ICU. You taught me just how strong the bond between a parent and child is, as of course you never forgot me or your daddy. We lived for the moments we could hold and rock you. We still do.

We spent every day at your bedside, and every night that I walked away from your sleeping little self in the PICU and walked back to our Easter Seal’s room, I struggled with the knowledge that you would wake up and find us not there. I am forever in debt to the nurses who comforted you on those nights.

I’ll never forget the moment your doctor and team brought us into this little, windowless room off the PICU. The picture they painted of your future felt bleak. We had spent our whole experience prior to this optimistic and naive, believing this was all just something you would outgrow. I felt my heart drop to the floor as I listened to your doctor explain your long term situation. I remember thinking to myself, I’m going to quit my job and dedicate my everything to you. I felt the dream I had of what our life would be like starting to drift away as I began to imagine what our new path would be like. A different path but just as special. We weren’t sure what to expect, no one did, as the reoccurring phrase heard from your doctors was, “We will just have to wait and see.”

Last night, your daddy and I were looking back on our past three years with you, and he said the one thing that has always stayed constant has been your spirit, your love and your strength. Whether it be a good day, a bad day, through countless appointments and tests, you make it impossible to not feel optimistic about the future. No matter what happens, it’s going to end up OK. You’re going to succeed with whatever is thrown your way.

I hope you remember that always.

Look at how far you’ve already come. You’re splashing through puddles in your new power chair and driving over your grandparents’ garden. I’ve never been so proud of your mischief! You’re spelling words, “cat, dog, fish, Ethan…” and trying to mimic us when we speak. You’re learning to speak through an AAC app and learning more sign language words than I can count. (We suspect you’re creeping up to 100 words!) You learn things so quickly, and your memory is incredible. Your daddy and I love listening to you hum along to your favorite show tunes and love seeing your curious, funny and sweet personality shine through. You have us wrapped around your little adorable finger.

family of 3

It was heartbreaking to learn that the severe congenital form of nemaline myopathy had devastating statistics, with up to 66 percent mortality rates before the age of 2. Yet, here you are, 3 years old. We treasure every single day with you, and each birthday is precious. You’re still here, still fighting and still showing us love unconditionally. Navigating the rare disease world hasn’t always been easy, but loving you always has.

“Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body. ” ― Elizabeth Stone

By contributing to research and bringing awareness to nemaline myopathy, we can actually help. I can’t stress this enough. There could be treatments for Ethan and others living with NM within his lifetime. Please consider donating toward A Foundation Building Strength to directly support NM specific research and Ethan’s chances of finding a potentially life saving treatment.

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Originally published: December 7, 2016
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