I decided to be bold today and take Sienna, my child with special needs and Ben, my 12 month old, to their brother, Sean’s, soccer game. My husband is the coach and we usually miss the games because of Ben’s nap time. I guess most of the boys on Sean’s team have never met Sienna. Sienna has Smith-Magenis Syndrome, a rare chromosomal disorder that results in global developmental delay, cognitive delay, a sleep disorder, and behavior issues that most often include self-injury and frequent meltdowns. Sienna is 9 years old but she requires constant, around-the- clock supervision. In spite of these things, Sienna is extremely friendly and she absolutely loves people.
At the soccer field, I watched stares and whispers as Sienna tried to drink out of the other kids’ water bottles and hug them as they ran across the field. I saw the sideways glances when she threw her arms around the waist of the coach on the opposite team and asked him (entirely too loudly), & “How old are you?”
It always makes me uncomfortable. Not so much her behavior (although that can definitely do it), but the looks and the reactions that sometimes result. What I didn’t appreciate today until after the game was that Sean was witnessing it all, too. When it was over, he ran up to me as soon as we were a safe distance from everyone else. He told me that the kids were saying mean stuff about Sienna. He didn’t look sad or angry. He looked mortified.
I get it. I get embarrassed sometimes, too. The first thought that popped into my head was that I just won’t bring her to the games anymore. It would probably be better that way. I didn’t say much to him, at first. I let him talk. He followed me into the bathroom while I gave Ben a bath. And he finally said what I had been thinking, “Mom, maybe Sienna should just stay home for my soccer games from now on.”
This whole time I was searching hard for the right thing to say to him. I want so badly to protect all of my kids from the cruelty and pain that is out there. But, I cannot shield them from it. I cannot, nor should I, keep Sienna away from the outside world and the judgment that exists in it.
So, I told him that it’s okay if sometimes we are embarrassed or sad or angry. That it can be tough having a sister who is different from everyone else. I told him that I am walking this road with him. But, that Sienna has the right to do what everyone else is doing and to go where everyone else is going.
I asked him to have courage with me – that we can be courageous together. That together we can teach people about who Sienna is and what it looks like to be kind and loving. I told him that once people really understand Sienna, they love her and so we need to give people the chance to get to know her.
It took me a long time to get myself straight with Sienna’s diagnosis and, even still, I have days when I struggle. Now, I am just beginning this journey of acceptance with my boys and honestly, it scares me to bits. But, I have to do the best I can to practice what I preach. I have to have courage.