I wanted to talk a bit about something that my son said to me last year. This surely stuck out in my mind as important to share here. I’m sure a large number of readers are parents or caregivers of a loved one with a creatine deficiency. Some parents may have more than one child. And given that every family dynamic is different and each affected child is unique, this is just our own family’s experience that led to this topic.

I have 4 children, 2 girls, and 2 boys. My second-born child, Spiro, is 10 years old and has CTD and Autism. His brother is 9 years old which makes them 11 months apart in age. One would think that brothers less than a year apart would be as thick as thieves, but this couldn’t be further from the truth.

As parents, we have those bedtime chats with our kids. One-on-one time where they share stuff they may not share in any other situation. One night last year, my typical 9-year-old was in bed telling me about some of his school friends. He went on to say, “I wish I could be like ‘Paul’ or ‘Michael’. They are so lucky, they have a brother. I wish I had a brother.” During the pause that followed, as I was trying to think of something profound to say, my heart silently broke. For a moment all I could think of was how much this hurt my feelings, and how it deeply saddened me. Suddenly, my perspective changed. I needed to hear my son. What does he mean by saying this? I quickly realized that this was not the time to try to correct what he said or to point out that he did, in fact, have a brother. He knows that, obviously. But it wasn’t about that. It’s more about the fact that in the last 9 years they have not developed a bond that some brothers typically have. He sees sibling relationships when he visits a friend and he knows he’s never had that relationship with Spiro. A sibling with who he can interact with, play a game or sport with, or get into mischief together.

Spiro is not a part of his social circle and they attend different schools. CTD and autism have created a great rift, one we have yet to bridge. Their interests and personalities vastly differ, and there’s no one to blame.  My son has the right to voice his point of view as it’s his reality and perspective. What I would like for him to feel about his siblings, although important for me to teach and model, is not necessarily how he views things, and that moment was not the proper place to insert those sentiments.

My son, at times, feels like he is without a brother and is jealous of those who have typical sibling relationships. Over the years it’s been few and far between that they’ve shared an activity, interest, or played together. It’s not that my typical son doesn’t try, he does, it just doesn’t work. I can’t change Spiro. He is who he is.

There have been times that Spiro has embarrassed him. I can’t tell him he’s wrong for feeling that way. The more I think about it, the more I imagine how lonely it is for him to have Spiro as a brother and me as a mom. I’m demanded and required to give so much of my attention to Spiro, and I hadn’t thought about it until he said that sentence to me. So when I hear him say, “I wish I had a brother,” I know he’s not trying to be mean. He feels that void and recognizes it’s there. He knows Spiro can’t give him what he wants, a brother. The brother he imagines.

Spiro came in a different package and as many years it’s taken me to accept that as an adult, imagine being 9 years old and trying to understand.

Those words… Not meant to be hurtful, just truthful. Hanging forever in my mind and reminding me constantly of what he’s missing. Those words, spilling out into a space and a reality that I know I can’t change for him.

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