‘I wish you did not have Down syndrome’

It had been a typical morning in our house—the kids waking up way too early to raid the freezer for frozen chocolate chip waffles before settling down to play Minecraft. I overheard their giggling. As siblings go, they are adversaries one moment and each other’s greatest champions and supporters the next.

During their game, Liam, 7, became upset with Maddy, 9. She was not following his rules and becoming too silly for him. Liam was losing his cool with her. “Just listen to me and do what I say. Maddy, don’t do that, don’t push that button!”  Maddy responded by giggling. All she wanted to do was play, without limits or rules. All he wanted to do was to have her play by his rules.

Provoked, Liam shouted at Maddy, “I wish you did not have Down syndrome.” He instantly looked up at Maddy, expecting her to respond, but she continued to play, giving no consideration to what was said.

He then looked at me and did what any 7-year-old would do: he ran away to his bedroom. He likely was upset with himself, but mostly he was anticipating the consequences.

Should there have been immediate consequences? The thought of one of your own children using such hurtful words, especially when directed at a sibling, is devastating. Admittedly, those words cut right through me because my daughter has a disability. But why? They were his feelings, and I certainly was not going to fault him for feeling what he was feeling in that moment with his sister.

Contrary to what Liam might have thought my reaction was going to be, I understood and empathized with him. Additionally, I was very proud of him. Do I believe that he wishes that she did not have Down syndrome? Yes, I do, for now. At times, I am certain that he feels a bit slighted.

He does not know it yet, but having a sister with a disability will positively shape him in ways that he cannot possibly imagine. He is embarrassed at times by his sister’s actions and behaviors. As he matures, this will allow him to grow to accept everything that makes her who she is.

He will have a broader perspective of what “normal” is than most of his peers. Hearing his own sister being referred to as the “R-word” will enable him to teach those around him that it is wrong to dehumanize others with such offensive language. He will remind people that his sister has the right to be valued, respected and accepted—just like anyone else. He will be courageous and strong and will not allow bullying to be tolerated.

He will recognize that the diagnosis, condition or illness does not define the individual. It is simply a part of what makes them unique.

He will examine and interpret the world differently. His eyes will see things in a way that others who do not have a sibling with a disability cannot.

He will learn to advocate for himself and stand up for others who he may believe are at a disadvantage. He will understand the difference between thinking about doing the right thing and actually doing the right thing.

He does not know it yet, but he is the boy others will look up to for his courage and values.

Later that morning, Liam eventually resumed playing Minecraft with Maddy. She welcomed him back saying with a huge grin on her face, “Hi Liam, no rules, OK?” Sibling love: the good, the bad and the ugly. I would not have it any other way.

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