I wouldn't change a thing - Not even 1 chromosome!
Mom writes about the blessings of her child with Down syndrome
My older son Ethan and I were having a conversation one day about William. He was asking questions, etc. He said, “Mom, if you could make William NOT have Down syndrome, would you do it?” I said without hesitation, “No, I would not change him.” He said, “But mom, things would be easier on him.” My response was this:
“I don’t see how that could be possible. You see, William doesn’t know the difference. You think it would be easier because you are comparing him to a typically developing child. But to William, life is good. As he becomes older, sure he will see some differences, but that doesn’t mean it will be easier for him, you can’t predict the future and you are not him. I think what you mean is that it would be easier for you, me – anyone in his life. It would make things normal or typical for everyone else – And besides, have you seen normal lately – how scary can that be?”
William has changed people’s lives. He has made a difference in the 10 short years that he has been here. I’ve watched him soften people’s hearts, who before knowing him would have never embraced a mentally challenged child. I’ve watched him change people’s perceptions of children with disabilities. I had a helper for one semester, picking up William from school at Kinderfrogs, taking him to child care, and then staying with him. In one short semester, Susan changed her entire college plan. She was no longer going to go to University of Texas for journalism, but now she attends UT and changed her major to special education with a minor in deaf education. She had learned sign language with William and wanted to pursue working with special needs children and sign language.
I’ve watched William teach his brother and sister’s compassion, patience, and various life lessons that most parents only dream of ever helping their children experience or learn. He has made his siblings better teenagers, and given them the forethought to be better adults. They in turn impact those around them and change other’s perceptions. I challenge you to find a day that William didn’t positively impact someone, somewhere. He changes the world, one day at time, one person at a time. If William didn’t have DS, then he wouldn’t be William and I want my William; the good, the defiant, the hard-headed, jovial, the loving twerp that I have embraced since day one. To change him, would require undoing ALL the good he has done. To change that single chromosome would alter his identity. Who am I to decide to undo all the incredible things he has done and will do? I’ll take the hard work, I’ll take the nay-sayers, and I’ll take the medical risks (even leukemia). It’s all worth it to me. I was blessed to be given the opportunity to be William’s mom and my personal thought – God doesn’t make mistakes – even when we do.
I believe in these children, in our children. I believe that they are very much needed in our society and in our lives. Their spirit is contagious. Their presence is needed to put life into perspective more than we care to admit. Simply taking a moment to look past the disability allows us to see all the value and worth they hold inside and what each one of them brings to life. These children are incredible. (Sometimes I really wonder who truly has the “disability.”)
So, to answer the question asked by my oldest son and by others, would I take away that one extra chromosome? Absolutely, positively not! William is perfect the way he is. He is William and I love him.
My name is Barbi Beard-Wolfe and I am incredibly proud to be William’s mom! and I love his extra chromosome!
About the author
Barbi Beard-Wolfe is the Parents as Partners coordinator for Family Services at Cook Children's. Parents as Partners program is a family-centered care initiative, designed to work with families who are being cared for at Cook Children's. This program provides support to patients and families and strives to improve the safety and quality of the care provided. Learn more about the program here.