I recently asked my brother, Adam, what his earliest memories of SMA are. At the time of my diagnosis, he was only 2, but his sharp memory has served as a powerful tool whenever we’re reminiscing about our childhood. Adam has always been like that.
Growing up, he always got straight A’s in school and absorbed everything around him like a sponge, and to this day he can still recount vivid details of our past. I, on the other hand, barely remember what I had for lunch yesterday. So, from the perspective of your average sibling rivalry, I’ve always envied this about him. When I asked Adam of his earliest childhood memory, I wasn’t at all surprised at how distant the recollection was. However, I was taken aback by the story itself and the feelings of sadness Adam must have had.
I had been in the hospital for about a month, and doctors had grown less hopeful of my chances for survival. It was recommended that my parents say their goodbyes, and with heavy hearts, they had to deliver the news to my brother, who had been staying with our grandparents. Our cousin brought him into the hospital, as Adam recalled. “Mom and Dad were already in the room,” Adam said, “and they were crying. I tried to smile to make them feel better, and then I went over to the bed and gave you a hug and a kiss through the tubes and wires.”
I was a little over 1 year old in that hospital bed. Adam was only 4. At first, I was crushed upon hearing this. How heartbreaking to think my big brother’s first memory of my disease was of his baby sister dying. But the moment passed, and then I grew angry when I thought about the implication SMA has had on my loved ones — especially my brother. No child should have to endure that. No child should have to feel the grief in goodbye after learning their baby sister was going to die of an incurable disease.
But Adam did.
After learning of Adam’s earliest experience with SMA, I started collecting snippets of memories in my head of all the times he was put in a position where SMA had the upper hand. I ended up losing count, but there was one pattern I recognized throughout: Adam’s unwavering love for me. He didn’t shy away from the destructiveness SMA tried to cause. He didn’t see me as some helpless creature who robbed him of normalcy in his childhood. He simply saw me in spite of my disease and chose to shower me with the most love, anyway.
This past week, the U.S. celebrated National Siblings Day, a day when people hop on social media to show a little love for their brothers and sisters, so I’d be foolish to not take it one step further with this column. After all, I am the first to recognize how rare brothers like Adam are and the first to proclaim how blessed I am to have a sibling like him. This story I’ve shared with you is just a fraction of what he has endured with SMA. Yet, it’s a true testament to the fact that no matter what battle we face, Adam will always be there armed with his indestructible love and strength to protect his little sister.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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