A few years back, I penned an article about my youngest child, Liam (then 7) and his older sister, Maddy (then 10). The heart of the article was that Liam was angry that Maddy had Down syndrome.
Fast forward three years. Their sibling relationship has never been better. They share intimate secrets with one another that only loving and devoted siblings share. They never argue, they never provoke one another with name calling and that whole, “I wish my sister did not have Down syndrome” is no longer an issue.
This is all fantasy.
Three years later, Maddy still has Down syndrome and Liam is still trying to figure out his feelings surrounding their brother-sister relationship. There are days he confesses he “does not love her” and days when he tells me that he “does not like her.” To be fair, Maddy has expressed similar sentiments toward Liam.
Liam does show affection, tenderness and joy towards Maddy. He just does not love that she has Down syndrome or all the “stuff” that comes with it. Although my heart aches to hear him admit how he feels, I cannot fault him.
His ability to remain open in discussing what he is not getting from Maddy and the challenges that come with having her as a sister continue to amaze me.
Throughout the years, there have been many rays of sunshine between them. They play together. They have real conversations with one another. They unite and come together when it suits both of their needs.
They jump on the trampoline together without any yelling, screaming or tears. Liam will tell Maddy to “hop on” his electric scooter to give her a ride to the neighborhood playground. Liam will read Maddy her favorite book, Pinkalicious, at bedtime while reminding her to “never, ever go into my room and touch my stuff…or else.”
When I am preoccupied and pretending not to have eyes in the back of my head (like all moms do), I am able to see and hear the best versions of their sibling bond. I see Liam sneak Maddy an additional piece of chocolate during the day or slide her an additional slice of pizza during dinner, while whispering, “don’t tell Mom.” I overhear him teaching her addition and subtraction and I hear them playing Connect Four and UNO. He performs these small acts of kindness because he knows it will make Maddy happy.
I no longer feel the need to step in and engineer their sibling relationship. I realize that if Liam truly did not enjoy being Maddy’s brother, he would not go out of his way to make her happy.
I have watched Liam mature over the years. He has grown to accept everything that makes Maddy who she is. Creating meaningful moments between the two of them requires fortitude, resolve and a lot of patience. It also requires friendship and devotion. Fortunately, Liam embraces those qualities and is fulfilled by being the brother that can provide Maddy with those memorable moments.
In addition to beginning to accept her for who she is, Liam also wants Maddy to be the best she can be.
Recently, Liam “blocked” Maddy from walking up the stairs until she spelled her own name aloud. “Maddy Grace Gillespie is all you have to say if you want to walk up the steps. Just do it, Maddy.”
After a few moments of non-compliance and ear-piercing screaming, she did it. She spelled her name for him. He told her he was proud of her for doing it and said, “just because you have Down syndrome does not mean that you cannot spell your own name.”
What ultimately matters to Liam is that Down syndrome will not be an impediment to Maddy’s learning and being successful.
In an act of defiance, though, Maddy stuck her tongue out at him.
Sibling love: the good, the bad and the ugly. I would not have it any other way.
This article appeared in the summer issue of Special Parent. Read the rest of the issue.