An Honest Look at Special Needs Parenting and Why You Can Do It, Too
In my time as a medical mama, I have seen countless mothers and fathers from all walks of life care for children with extraordinary needs.
It has changed me. It has uprooted my belief, my “I can’t do this” mantra. I can do this, and if you happen to walk a similar road, you can do it, too.
When you were pregnant, maybe you hummed these words under your breath:
I just want everything to go well.
I don’t want gestational diabetes, I don’t want a breech baby, a baby born still.
I don’t want a miscarriage, I don’t want an emergency C-section.
I’m pretty sure I couldn’t handle a sick baby, one with special needs, one with demanding medical needs.
I don’t care if it’s a boy or a girl, as long as it’s healthy.
I don’t want these things, because I don’t want pain in my life. Pain is bad, and it makes me vulnerable, it makes me hurt. I am afraid.
In a perfect world, sickness and disease, death and severe birth defects would be eradicated.
This world is far from perfect.
You are not a bad person if you think you can’t handle a child with special needs.
But you should probably let that go.
We actually have room in our hearts for sick children, for children with special needs. We have room for grief and the challenges associated with medical conditions. We have the capacity to hold far more than we are holding now. Don’t be afraid. I don’t want you to experience pain, I really don’t, but if you do, remember, you can walk through the hard places.
I had a dream about my daughter, Florence — a dream that she was born healthy before we knew there was anything wrong. I was so scared I would have a child with special needs or a disability because the world never talks about these things. People are given options. But my dream put my fears to rest. I prayed, like most mothers do, for the health of my child, and then I let it go and fell into a place of trust.
We found out she was breech at 36 weeks, and I cried so hard, I thought I might need counseling. I didn’t want a C-section! I didn’t want any more scars on my body, any more surgeries.
She was manually turned in my womb, and it was settled. It worked for us, and I felt so blessed. Done, done, done. We made it over our bump in the road.
I thought that was it.
I didn’t want a life that was hard or held seasons of grief (don’t we all?). I was scared of my plans getting messed up by something much bigger than me.
But let me tell you — it’s in the messing that we are made.
I thought mothers of kids with special needs or terminal diseases were somehow used to the pain — they were superheroes, right? I thought they could handle it because, well, they have a child with such extraordinary needs. They must be extraordinary, too. Handpicked. Special.
When I would think about special needs, I pictured wheelchairs, handicapped parking passes, feeding tubes, developmental delays, drool, twisted feet.
I thought of myself, and my inability to deal with that kind of stuff. Let me tell you a secret: I still do. It is hard, but I’m doing it.
Now, when I think of special needs, I really see the child who was once a wee, sweet baby. I see the vast expanse of sea where love lives, and it never runs dry. I see hope and room for miracles.
I see the heart-wrenching beauty, and my mouth drops open in wonder. Each one of these children was strong enough to face this unkind world, if only for a moment.
No one wants their child to be living on borrowed time, as the medical community so graciously puts it. It’s not easy some days, but there is grace.
Handpicked grace, for every season.
Last week, I turned up the dial on the radio when I heard about a little boy with terminal cancer. He wanted a full-blown carnival and he needed it soon. The Make-a-Wish Foundation made it happen in four days with caramel apples and ferris wheels. I turned the volume up and I cried and I felt and the mundane tasks of my day got pushed aside. I loved on Florence all day long. I sat by the couch and held her sweaty little hand. We didn’t do much of anything but babble to each other, have a bath and exchange eskimo kisses. I traced her belly button and kissed her tummy. She giggled and I blew her bubbles. I thought about how if we could make a wish, we’d invite Elmo over to our house and he would sing to her for hours.
I didn’t get to push her down a slide or have a play date with another toddler and mom.
I simply danced her around the living room, my toes twisting into the carpet, her legs flopping up and down. I danced and she watched the ceiling spin, and we were glad.
Sometimes, life comes in the form of a child, and it looks like heartache, loss, revelation and joy.
Sometimes, life leads us to the places no one really wants to go to: the fringes, the hospices, the sterile hospital rooms.
But we are here, and we are doing it.
The world is changed when life is birthed in the hard, unthinkable places. So, we will continue on, because love endures all things.
Read more from Michaela at Michaelaevanow.com.