Raising one-abled bodied child and one physically disabled child was tough. Everything is different. While both children were learning to be independent, what that looked like was different—and changing. From dressing to preparing meals to hosting friends over, we had to think through things and help our kids. It wasn’t easy, and I don’t think we always thought through things well.
A humorous story we often recite is about the time we were lecturing our son when he came home from high school, demanding that he get into his bedroom and finish his homework. It needed to be done well, and it needed to be complete. He was not to come out until then. Next, we went into Kelsie’s room and encouraged her to come out and watch some TV. “You don’t always have to finish everything,” we said. “Let some things slide.” Why? Because one child (our son) was intent on having fun, while our daughter was focused on completing everything, ignoring enjoying life and others.
Sometimes people would listen as we talked about our struggles and say something like, “Well, as parents, we’re all in the same boat.” I would think, “Thank you for your empathy through your cold, calloused words. Yes, life is hard. Yes, parenting is hard. But it is difficult dealing with disability, both for us and my daughter!”
So, when someone says, “We’re all in the same boat,” I just shake my head. No, we’re not…not really. Same lake, maybe, but different boat.
Like most parents, we still do that comparison thing.
“Well, at least our kids don’t _____. At least our daughter’s disability isn’t as bad as ________.”
Yes, we still do that. Isn’t it silly? Of course. We realize that, and yet we still do it. After 27 years, we’re still not immune to the temptations of wondering what-if.
Looking in the rearview mirror, we can see how God has blessed us.
It hasn’t been easy. My beautiful daughter is still hampered by the limitations of that nasty cerebral palsy. And I still occasionally dream of flying through the jungle again.
Broken dreams are tough, especially for parents. I’m so thankful that we have a relationship with a loving Father who listens, loves, and weeps with us.
Why did God allow Kelsie to have cerebral palsy? I don’t know. As one president said, “That’s above my paygrade.”
I will never have a clear picture of the big picture until I sit down and have a face-to-face with God. Have we seen God bless us, our daughter, and our whole family through her disability? Yes, numerous times. Kelsie’s disability has opened many doors for ministry for us and for her, specifically.
Does that make it all worthwhile? No! We still look at other families and situations and we “what if” about any number of things. We don’t like the brokenness of this world.
How do we respond? We love.
We love our great God and how He has carried us through the hard times.
We love our kids – our abled bodied son in Atlanta and our disabled daughter here.
We love each other and have seen our marriage grow as we lean on one another and on our great God.
We love those parents and kids struggling with disability in their lives and, in some ways, we can relate.
We’re also aware that others without disability in their families are struggling, too. We look for ways to speak into their lives and encourage them.
When we go through difficult times (isn’t that what parenting is all about?) we need to run to our Heavenly Father. We need to be aware that we need His help.
For me, one of the positive things about dealing with disability is the rapid awareness of our limitations, and our need to turn to God immediately for help.
I mean, we were never meant to do this on our own anyway, right?
For more information about dealing with disability in your family, friendships, and church, I highly recommend Same Lake, Different Boat by Stephanie Hubach.