When You Become Numb to Disability, A Caregivers Warning

I was thrust into the pediatric therapy world when Nathan was an infant. He was still in the NICU, when I got a tour of the therapy gym at the children’s hospital. I suddenly burst into tears in front of his then therapist. She gently touched me and said, “This is the right response.” She looked around and said, “I’ve become numb to all this.”

Six years later and I’ve become numb too. Now instead of having a tiny baby in a carrier, I have a six-year-old in a wheelchair. Now, I am that mom I saw who effortlessly wheeled her child around the hospital therapy gym, as seamless as if they were leaving the library. That woman I saw in the summer of 2013 who nearly brought me to my knees is now…me. This is my life.

An Outsider’s Perspective

My sister reminds me what is obvious to her, but not to me–that almost everything I do involves caring for someone else. From being room mom to Nathan’s pseudo-nurse.

This time last year I began to see what she saw. I was tired and lost and looking for a way to get back to who I was six years ago before Nathan, nine years ago before I became a mom. Though that person no longer exists, pieces of her do and I am in a recreating and reassembling season. What parts are old me and what parts are new me? How can I reconcile all the parts of me so that I can feel them and not be like a robot mom going through the motions. 

How to Feel Again

Nathan hasn’t always been a son to me, but a patient with many therapy goals to strive for and many medical procedures to administer again and again and again. Caring for him has become a job for me. I miss delighting in him as a mother enjoys her child’s cuddles and coos. Instead I’ve been striving and working hard to accomplish what I see as the therapy/medical/developmental goal. (There are a lot of goals.)

All of this has made me numb.

I’m tempted to argue against any form of surrender or trying something new. But I’m slowly letting go. Surrendering. 

Simon answered and said, “Master, we worked hard all night and caught nothing, but I will do as You say and let down the nets.” – Luke 5:5

I work hard all day and don’t see many results. But, I will do as Jesus says. Surrender. I am willing, even as I wrestle with the obedience required of me, trusting that this is the right way. The way back to Jesus. The one who can touch my heart and my emotions. 

Less Doing and More Being

Obedience in this season looks like resting (for me and for Nathan), searching for joy in little things, and telling others the hard stuff. The stuff that I bury because it isn’t always seen as acceptable or appropriate. It also means continuing to offer Nathan therapies and experiences so that he will have his best shot at developing, but leaving the results up to God. 

I’m beginning to see, not results blossom, but hope. I’ve been astonished the way Peter was when he obediently let down the nets and caught more fish that the nets could hold.

Isn’t that the way it is with God? He gives us not always what we expect, but it is truly goodness overflowing. Nathan is not yet walking independently or eating solid foods, but my heart is softer. Spring time came. What was once frozen, has thawed. What is numb has feeling again, as I again open up to all God has for me. It’s summer time in my heart. 

I suspect this post must read very abstractly, but the bottom line of what I’ve learned this year is I am more–much more–than a caregiver. When I surrender to all He has for me, I know who I am. 

I am…

a caregiver, but also a wife, mother, teacher, friend, advocate, neighbor, helper, lover of beautiful things, writer, researcher, feminine being, sensitive being, learner, forgiven, strengthened, and redeemed. I am afraid, but brave anyway. I am a child of God. 

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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