A Sibling’s Perspective on Life With SMA
On April 10, the United States will celebrate Siblings Day, a day to honor and appreciate the bond we share with our siblings. I happen to have the best one around, so I asked if he’d do an interview with me to share his perspective on living with SMA as the sibling. SMA has profoundly impacted our lives, and I’m excited to introduce you to the guy who has carried me through it all. Meet my remarkable brother, Adam.
Alyssa: Tell me about when you learned I had SMA.
Adam: I’m not sure I really remember learning you had SMA. I was too young when you were diagnosed to understand what the disease truly meant. I guess it started to sink in that our lives were different when I went to kindergarten and I saw that other kids didn’t have little sisters with wheelchairs or breathing machines, or that were rushed to the hospital in the middle of the night.
What has your role as “big brother” meant in regards to SMA?
To me, the older sibling role has taken on many forms. I can remember being very young, 5 or 6, and wanting to help take care of you, out of love for you but also to help Mom and Dad. Mom used to let me help strap on your foot braces [ankle-foot orthoses] back then or do other little tasks to help me stay involved.
I also have always felt the need to be your protector. Whether that was holding your hand during Spinraza procedures, cheering you up when you were sick and hospitalized, or finding ways to make sure you were always incorporated in social activities throughout our lives.
Ultimately, I think our favorite song lyric really sums it up: “Don’t be afraid, [Alyssa], I’m the satellite/ And you’re the sky.”
Did you ever feel envious when Mom and Dad had to focus on my needs more?
No, and that is more of a testament to them than to me. They always did a very good job of being there for me, guiding me, and keeping me involved in sports and other social activities, no matter what was going on in our lives as far as your health was concerned. During the times that they weren’t really around because they were with you in the hospital, I was always more concerned about your recovery than what was going on with me.
What’s something SMA has taught you?
I would say the value of life, and to cherish every moment, even when things aren’t exactly how you envisioned them. Mom, Dad, and I have had to go to sleep not knowing if you would still be here in the morning more times than I care to remember, but doing that has led me to cherish each time we are together, to cherish every holiday and birthday.
That doesn’t just apply to cherishing them with you, though. I’ve also come to cherish those moments with all my loved ones because I’ve seen how easily life could be taken away. Every Christmas, every Easter, every Arbor Day, I thank God to have my loved ones here with me.
Maybe I’m biased, but you are the most selfless, loving, faithful person I’ve met. Has SMA influenced who you are today?
I think you’re definitely a bit biased because I don’t see myself that way. It has probably played a part in who I am, though. As I’ve said, it has caused me to really appreciate life and cherish the moments with my loved ones, no matter the circumstances.
It probably has also affected me subconsciously as far as thinking of others and looking out for them because of my experiences doing that for you all our lives. From a faith standpoint, it definitely has influenced me as well. We’ve been blessed to see God’s presence in our lives many times because of SMA.
What one piece of advice would you give to other SMA siblings?
Make the best of every moment with your family and always be there for your siblings. Find ways to always keep them involved, and never let them feel as though they are any different from everyone else because, in reality, they are not. Treat them with love and respect and realize that they are probably the strongest and most inspirational person you will encounter during your life.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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