As a special needs mom, I want results, and I want them now. When my son was younger there were many hopes and dreams I had for him: eating by mouth, talking with a trach, and walking. I pushed him hard at times. We went to physical, occupational, and speech therapy outside of our home AND had therapists coming to our house for years. I was trying to make him better.
Not all of that was bad. He did learn to talk and eat by mouth. Both of which took years to accomplish, and it’s not perfect even now. Somewhere along the way, I had to give up the dream of walking. We worked with a therapist and a walker and braces from foot to hip for several years, before a doctor finally said in essence that his energy may be better spent elsewhere than using a walker and bulky braces to get around.
I was heartbroken because I mistakenly believed that walking = a better quality of life.
It doesn’t.
Last summer we had Jennifer Dukes Lee on our podcast. She talked about her book Growing Slow. How often do we rail against the slow growth in ourselves and our kids?
Consider these quotes from her book:
“Do I hustle and push because I have to fill in perceived gaps in God’s plans for my life? Do I value external growth more than the work God is doing inside of me?”
“Some nights, I have been awakened from my sleep by shame – shame for not being able to shield my child from pain, shame for not knowing the answers to questions people ask, shame for feeling shame when I know better. The physical healing came slowly. The emotional healing has been even slower. And let me be frank: we don’t want to “grow slow” in this. We want fast progress. But some seasons don’t pass quickly, so we have to sit in the mourning and weeping, believing with all that is in us that we would see restoration.”
No, Jennifer is not a special needs mom, but she did experience some major health issues with her daughter, as alluded to in the quote just above.
I think we all feel this. As special needs moms, we’re always comparing and afraid of how our kids are slipping further and further behind their peers. These fears are certainly legitimate, and there is nothing wrong with PT, OT, and SLT. But as I read Jennifer’s book, I realize that growing slowly is okay. There are times we have to sit in the grief, the mourning and weeping, and wait for God to do his amazing work below the surface.
Do you identify with similar feelings: frustration because you can’t fix it, shame because you feel like you should do more, have all the answers, and try to fill in the perceived gaps not only in your kids but also in yourself?
I do.
Emotional healing for all of us I think is the part that can be maddeningly frustrating. I’ve been seeing a counselor for awhile now, and we are just scratching the surface of my false beliefs about God’s love for me and why he allowed my son to be medically fragile. But I know it’s a worthy, slow, good work.
The truth is we probably aren’t going to experience full healing on this side of heaven, but I firmly believe we will see it one day—in our kids and in ourselves. In the meantime, let’s do the good work of growing slowly, taking our fears to God when they arise, listening to an encouraging podcast, looking our children in the eyes, caring for our child’s needs, and seeing a good counselor.
But above all, trusting God with our kids and our future. Above all, taking one small step each day to fall deeper in love with Jesus is the best work. It’s slow. It might not seem like we will see great results, but one day, we will. Our hearts may ache with the heaviness of caregiving and, sometimes, yes, the burden of lost hopes and dreams, but slowly, as we mourn and lament, let us see that Jesus is enough. He deeply loves us, and as we share in his sufferings, we are being sanctified to look more and more like Him.
“I also desire to know deeply that everything I have is because of him and all that I have is more than I deserve. I am certain that I’ll know, when I get to heaven, how true it is: Jesus really is enough. But I don’t want to wait until I’m standing before my Savior to believe it with my whole heart.”
Carrie M. Holt 
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