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How Spinal Muscular Atrophy Changed Our Childhood

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It’s always been me and my brother, Justin. Either us against the world, or as kids ― us against each other.

We’re only 11 months apart in age and I don’t know a day in my life where he doesn’t exist. That’s why this is not the way I planned it. Unexpected sickness has unfortunately been the norm in our family, but this time feels a little different. Justin has a cyst growing in his throat that can’t be removed safely and time may be running out for him.

The innocence of a child can be what saves you, but also what breaks you as an adult. As a kid, I would run down the hall to peek at the presents on Christmas morning, yelling for everyone to come see Justin walk. It was the only thing I had asked Santa for one year and then the next year I added a Nano-Baby Tamagotchi to my miracle request. I might have gotten the Nano Baby, but my brother didn’t walk as I had wished. I used to think that was all there was to it, and the only trouble was that Justin couldn’t walk.

I think that he and I both believed that for quite a long time… but the jarring truth of reality caught up with us when we became old enough to understand his disability.

I know I’m not “the sick one,” but I was always there. Watching the super down lows in between the wonderful highs takes a toll on a kid. I just wanted my brother to be OK. I didn’t want him to go away to the hospital. I didn’t want him to miss out on places that weren’t wheelchair accessible. I felt guilty playing sports because he couldn’t play. There was a one in four chance it could have been me to inherent two copies of the gene mutation causing spinal muscular atrophy. I luckily only inherited one copy, but if I have a child with another carrier, that haunting one in four statistic reappears. This is also the same chance my brother dies and I live ― it’s not fair.

One day, our aunt was carrying 5-year-old Justin up the stairs. Although he was a tiny little thing, she let him know that he was getting to be a big boy and too heavy to carry up all those steps. He responded to her with “That’s OK, because pretty soon I’m gonna be walking!” Justin and I waited and waited for that walking day, but unfortunately, that may not happen on this earth.

Earlier that same year, Justin’s lung collapsed on his 5th birthday. Moments before this happened, he kept saying to our mother, “Mommy, mommy, lift my legs! Lift my legs higher! Higher!” No matter how high she raised his legs, it wasn’t as high as he was requesting and not as high as where he was going. Justin called out, “Mommy where’s my angel?! Where’s my angel?” Mom told the nurses that she didn’t know what was going on and that he kept asking for his angel… then he flat-lined. The medical staff rushed into the hospital room. Mom looked to the edge of the room and saw the light of her deceased grandfather standing there — a guardian angel sent to protect them. She said he was there to let her know that no matter what, everything would be OK.

By the grace of God and a miracle, Justin survived that day. He was not meant to die a young boy. When he finally woke up, probably a few days later, he told our mom that he had walked up the golden stairs to Heaven and that he saw Jesus and Nana. We had lost Nana recently, and boy did she love her Justin more than anything. Jesus and Nana told him that it wasn’t his time and he returned back to us. That miracle series of events has given me hope time and time again. I know that Nana is waiting patiently and that someday my brother will be walking just as we’ve always dreamed.

Looking back on hundreds of hospital stays, a major spinal fusion surgery and countless other procedures, needles, tubes and wires, I realize how hard it’s been hard on all of us. It’s not fair to Justin and it’s not fair to our family who loves him. But despite his diagnosis, Justin has truly lived.

Justin has accomplished all the things people never thought he could. He finished high school, he almost finished his degree at UConn― he has only two classes to go if anyone can hook him up with that diploma. “A” for more than eight years of effort right? He has traveled ― like that time he partied in Vegas and drove his wheelchair through a taped off crime scene. He lives on his own. He was offered and began a job at Apple three years ago because of his extensive knowledge of Apple products and technology. He’s been promoted from Specialist to Expert, trained the team in opening a new store, and feels so much pride in his success. I can’t thank his Apple family enough for their unwavering support, love, respect and admiration for Justin.

Besides any Apple product, Justin’s “number one” in life is his niece, Hayden. She constantly gives him another reason to never give up. He also has amazing friends and family that see far past his illness, and he has lived a good life despite his genetic disease. One thing he hasn’t done yet is meet Tom Brady, so if anyone knows Tom, please tell him that Justin’s waiting on his invite and he’d really like a Super Bowl win this season, #FreeTomBrady.

Justin, I want to be strong for you. I want you to know that I will be OK. I have to take care of your beautiful niece, Hayden. She’s the light of our lives, isn’t she? She gives us hope despite the cards we were dealt as a family. She loves you and she always will. She’ll know that her future dance lessons are a gift from Uncle Justin. If she wants to play an instrument or lots of sports, she’ll think “good thing Uncle Justin loves me so much that he saved up just for me!” If she finds a boyfriend, she better hope Uncle Justin doesn’t haunt him. I know you’ll watch every moment of her growing up and we’ll remind her that her “Uhn-coe” is always with her. I’ll take care of our amazing mother, too. I’m selfish because I don’t want you to go, even though I know the disease is what’s dying and that you will be completely free. Your body is not your forever home. Soon (but not too soon) you will be able to walk and do everything on your own. You will be pain-free. I know these are positive things, I really do. But the pain for me is still there. It only hurts because I love you so much. You’re my other half and my best friend. I don’t know what my life will be without you.

Justin, I’ll remember that you said you feel at peace with your current circumstances. That peace will push me to find a way to make it through. You’ve accepted your fate and that in itself is brave, honorable and special. I look forward to the day we can walk side by side for the first time, as we’ve always wished for. Until then, we will enjoy God’s gift of the time that we have left.

I love you, Big Brother.

Love Always ― no matter what life throws at us,

Your Baby Sister

Originally published: September 2, 2016
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