It is true that my boys take up most of my time and energy. So much so, that I sometimes forget to look at my daughter and her achievements—and the struggles she faces every day as a sibling of two boys with disabilities.
Our daughter, Kiersten, is 11 years old and is smack in the middle of her brothers. She has been a sibling of individuals with disabilities her entire short life. The silver lining is that she does not know anything different.
I think I honestly try to avoid the emotional side of supporting her because it scares me. I know the social situations she has to deal with just plain stink.
Kiersten has had a great experience attaining friendships, but maintaining them has proven a little more difficult.
She’s had a few friends over to spend the night, but it’s always been just the one time. Her friends are a little freaked out by everything involved with supporting the boys. To start, our older son has around-the-clock care. It even took me awhile to be comfortable going to sleep knowing there was a stranger walking around our house.
Then there are the sounds of all the machines going—oxygen concentrators, IV pumps, nebulizers, CPT and suction machines. It doesn’t allow you to have much peace and quiet.
Then there is dealing with a seizure or having an ambulance arrive at your house on a regular basis. (There is a time I remember vividly, when she was about 7 or 8, that Nick was not doing well, and we had to call 911 again. They arrived, and she opened the door and greeted them with, “Hello, firemen. Nick is over there.”)
The fact that this is my daughter’s normal breaks my heart.
Siblings like Kiersten are in the lives of individuals with disabilities the longest, and we need to support these siblings’ needs as well as prepare them for their future, which will likely look different from most people’s.
When it comes to dating, I am not too concerned. I have already shared with her my rules: When a guy comes to pick her up, he must come in and sit on the couch between her brothers for a little while. If he can survive this, then he can have the privilege of taking her out.
Then there’s graduating high school and going to college. Will she want to run as far away as she can because she is tired of dealing with her brothers?
We try to keep her from worrying about the future, but she does. She has already asked if her brothers will have to live with her forever. Absolutely not, we shared with her. She will be responsible for looking out for them and their needs, but they do not have to live with her and her future family. We shared that her responsibility will set in long after college, when she is an adult. This seems to have eased some of the stressors that shouldn’t even be a problem for a preteen.
But despite all that—or because of it—Kiersten is darn amazing. Sometimes people do not give her the chance to show how fantastic she really is. My wife and I are doing everything we can to support her growth into a young woman.
She is on a dance team and is at the studio Monday through Thursday right after school until 7:30–8:00. She is able to put some of her emotions and feelings into her dancing. It is her escape. It’s important to provide her this opportunity. If adults need ways to escape the day-to-day challenges, then our kids need it more.
She also participates in a program called Sibshops through HEROES, where she is able to share her feelings and have them validated. She is surrounded by students who get her and understand the greatness that can come with being a sibling of an individual with disabilities.
With support, kids like Kiersten can grow up to be more resilient, self-sufficient and strong.
She shows such great love and empathy for her brothers, and it carries over to the community she is in. She is kind and smart and loving. She is strong-willed and knows what she likes.
She is fantastic. She is my girl.