The longest relationship any of us will ever have is the relationship we have with our siblings.
In our family, we have a healthy, typically developing daughter born in between our two sons, both of whom have medical and cognitive disabilities. Kiersten is 9, and along with the standard drama, trials and tribulations that accompany a pre-tween, our little lady faces the added daily stress of living with and worrying about siblings with serious issues.
Kiersten is one of the most amazing, beautiful and fierce individuals I know. And unfortunately, she’s 9 going on 18. That’s what happens when you have brothers with disabilities. You grow up a lot faster.
When she was 3, her younger brother, Ethan, underwent five major surgeries in 14 months. And so we lived in and out of hospitals for more than a year. And Kiersten began to act out, did not sleep well and became an emotional wreck. She thought her mom and dad loved her brothers more than her because more time was spent with them rather than with her. It bothered my wife and me terribly that we essentially backburnered Kiersten during this time. When her therapist cued us in to how Kiersten was feeling, I lost it. It wasn’t the fact that we weren’t around much; it was that Kiersten’s thoughts and feelings weren’t being recognized.
After trying unsuccessfully to resolve Kiersten’s obvious — and warranted — frustrations on our own, we enlisted the services of a child therapist and play therapy. This strategy helped. Kiersten was able to identify her feelings and understand that it was completely OK to be angry with us or mad at her brothers. Over the next several months, she learned steps to better manage her feelings, including sharing more with my wife and me. And at the same time, my wife and I met with the therapist to learn how to incorporate Kiersten’s wants and needs and protect her time with us too.
We then transitioned into sibshops, a sibling support group (hers meets monthly) for children that have a sibling with disabilities which has been hugely beneficial. (Check out our directory to find local sibshops.) She’s found kids she can relate to, kids living with similar realities, which makes her feel less alone in her struggles, frustrations and just day-to-day life. She’s able to share and talk to a group that empathizes with her.
Outside of support groups, we’ve nurtured something that is just Kiersten’s: her passion for dance, a great expressive outlet for her. We enrolled her in a dance company a few years ago. Today, she’s on the dance team. Dance makes her so happy, and it allows us as a family — including her brothers — to support her by attending performances, recitals and competitions and watch her thrive doing something she loves.
And we’ve thought about her future. We want Kiersten to grow and experience life on her own. So in setting up guardianship papers for the boys, we took this to heart. Should something happen to my wife and me before Kiersten turns 28, my sister will be Ethan and Nick’s guardian. My wife and I want Kiersten to graduate from college and establish herself as an adult. At 28, she can then decide what’s best for her and how to best support her brothers at that point. We’re not mandating that her brothers then live with her.
When you’re the parent of a child with special needs, it’s very easy to get wrapped up in your child’s daily struggles and battles, like the war we’re currently waging to ensure Nick’s continued care beyond his 22nd birthday in October. (I wrote an article about it last month, but it has to do with the STAR program.) But we can’t forget about our typical children too. Yes, they will feel anger, frustration and stress at times, but it’s important to recognize their feelings and support them wholeheartedly — whether that’s through support groups, therapy, hobbies and interests or a combination of things. They deserve the same tireless love and support we devote to our other children’s needs. Because even though our typical child might be wise beyond her years, we need to remember that she is still just a child.
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