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A Special Balancing Act

Photo by Marianne Harte

By Marianne Harte

One of the first things I did upon coming home from the hospital was to go upstairs, lie down next to my sleeping oldest son, and apologize. I apologized for giving a broken brother to him, for shortchanging his little boy fantasy of being the oldest brother into one of becoming caretaker and chief protector from the harms of the world.

Having a child with Down Syndrome changed my life profoundly, but it also irrevocably altered the life of my eldest child. Yes, there are many positives to be taken into account, but there are many, many challenges that must be addressed and looked at and sometimes hated. Being the older brother of someone who will never catch up.. This is a burden I never willed onto my Mackenzie, but it is his and cannot ever be changed.

How must this affect him, I often wonder, especially when Riley is noticed and smiled at or reached for to give a little squeeze just because he is our Riley. I want to shout to the world "But this is our Mackenzie! Take his picture, notice him for who he is, tell him you see his uniqueness too!"

Instead, I give him nudges here and there, and share our bond of sarcasm and watchfulness from behind the scenes while his dad and his brother get the limelight. And most of the time, they deserve it, they work hard to make people laugh and relax. But sometimes, I want to exchange the slanted eyes of my youngest and make him look normal, to avoid grabbing all the attention just because he is disabled.

The guilt I feel that I might be favoring my oldest over my youngest is confounding. I would love Mackenzie to act up and be silly in the natural manner of his dad and brother but I never want him to change his personality just so I won't feel guilt.so how to make sure there is equal attention for both? I realize there never will be, and even if both had Down Syndrome, or Riley did not, there would still be this juggling act in my heart. Since I am the mother of 2 boys, and one of them has a disability, I will never know the particular heartaches of a parent who has typically developing children, and they will never know mine.

What I do understand is that deep down there are the same heights of joy in just looking at these wondrous children of mine. The guilt and the sadness are my own peculiar bags to carry, but I lighten that burden by letting my children know how cherished they will always be.

Mackenzie is a strong young man, rapidly growing into adulthood. And while his little brother looks up to him, imitates him and aggravates him, just like all brothers throughout the world, the big brother does the same.

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