Now and then, someone will ask me a question that opens me up a bit and gets me talking outside normal bounds about what exactly it is that my husband and I do each day to meet my eldest's needs.
Lately, one need has required more attention than usual. And that is Elsa's need for sensory input.
What in the world does that mean? Elsa has been going to extreme lengths to receive "input" from the world around her - tangible information about her environment that lets her know where she is in space.
Touch. Pressure. Impact. Sound. The more, the better.
For going on three months, in order to get sensory input Elsa has been hitting herself with a lot of force. Her preference: In the head. With her knuckles. It has created bruises on her temples and has led us to put stabilizers on her arms for hours a day, so that she can't bend them and make contact with her head.
When we limit Elsa's arm movements, she's still unsatisfied because she's not getting input. So she knocks her knee caps with her knuckles. More bruises.
To address it, we've been to her pediatrician, her neurologist, her physiatrist. We've consulted with OT, PT and Elsa's school team. All signs pointed to sensory. Rather than continually diverting her movements, we've had to get serious about meeting her needs.
Sometimes we can work sensory stimulation into our activities, like swinging on our recent trip to a water park...
But more often than not, it's required regular intervention: body massage, scalp massage, joint compressions, arm splints, wrist splints, a sensory vest.
It's so hard, as a parent, to know that what Elsa wants most is to feel these extreme feelings. Naturally, we'll do anything to keep her from inflicting pain on herself. The good news is, I think we are finally turning a corner. Things with Elsa tend to go in phases, and this stint with extreme sensory seeking seems to be running its course.
When Elsa's in the midst of an extreme motor pattern, it seems it will never end. But it always does. And it's only then that I can look back and see how intense and all-encompassing our efforts to deal with it have been.
I recently returned from a vacation with my mom and sisters. It was so wonderful. The time away, coupled with the knowledge that Dan had everything 100 percent under control, allowed me to REST. RELAX. RECHARGE.
Just as I returned home, I learned that a Chicagoland girl with Wolf-Hirschhorn (the same syndrome as Elsa) passed away. I cannot imagine her parents' heartbreak. With all her challenges, Elsa is strong and quite healthy. I seldom think of her passing in her youth as a possibility. But it is.
Every day with her is a gift. And I thank GOD for giving her to us and for being our strength, through every trial, every season and every moment of this life.
2 Corinthians 4:7 - We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves.