an honest look at special needs parenting: and why you can do it too.
This post came to be after a few pregnant readers told me that they were no longer afraid of something, of anything, going wrong in their pregnancies. I think that’s a bit miraculous, considering all the lamenting I’ve done over the past year.
But I have hope, and always will have hope. Life is never perfect, and diseases and conditions should never come to be. Florence should be whole and healthy. This is not what I want for her. I understand there are many different needs out there, so don’t take offence: I’m not saying your child isn’t perfect. I’m saying that life is unpredictable and sometimes it’s really hard. Instead of telling you why it’s so hard, I’m here to tell you that you can walk through this season. Whatever season it is.
My faith in Jesus ties me to this earth, even when it’s spinning hard and I’m sick from the motions. I have learned a lot over the past year. 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.
In a perfect world, sickness and disease, death and birth defects would be eradicated.
This world is far from perfect.
You are not unique or sinful or 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 Florence, a dream that she was born healthy before we knew there was anything wrong. I was so scared that I would have a child with special needs or a handicap, 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 counselling. 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. It worked for us, and I felt so blessed.
We refused genetic testing, the screenings. We shrugged our shoulders at the midwife’s suggestions: this child is ours, no matter what.
It was the best decision ever.
It doesn’t mean that I was prepared for what would come.
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.
I thought mothers of kids with special needs, cancer or other 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 thought about special needs, I pictured sweat pants, 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: somedays I still do.
I also assumed strangers would treat us differently. They would stare and say: I don’t know how you do it! My assumptions were right.
Now, I see the child that was once a wee 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 were strong enough to face this unkind world, if only for a moment. Each one is precious enough to deserve life.
No one wants their child to be living on borrowed time, as the medical community so graciously puts it. It’s not easy somedays, 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 in BC 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, 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 mum.
I simply danced her around the living room, toes twisting into the carpet, her legs flopping up and down. I danced and she watched the ceiling spin, and we were glad.
Yesterday, I couldn’t help but notice that her fingers seem to be getting weaker. On days like this, we walk around the edges of our vibrant neighbourhood, where the trees hide us in the quiet. I inhale the cold air, grab a cup of decaf, and suddenly it feels like the best day ever. She watches the sky and smiles. It’s okay mama, she seems to say, it’s okay. Other days she watches movies all day and I don’t get out of my pyjamas until 3:00pm, and then someone drops a meal off and it feels like the greatest gift.
All is grace, in every season.
I’m reading a book right now called A Dream So Big by Steven Peifer. Their journey started when they lost their third son to Trisomy 13, eight days after his birth. God told the mother that her son “has more purpose than just fulfilling your motherhood.”
She goes on to say that she felt selfish and explains that she was “worried about my son, of course, but I was more worried about me—how sad I was, how sad I would be to have a son with disabilities, how sad I was my son would probably die early…”
This family went on to do missionary work in Kenya, the mama’s lifelong dream fulfilled after a season of weeping. They feed 20,000 Kenyan school children a day. In 2007, they were awarded the CNN Heroes Award for Championing Children. For them, the death of their child thrust them into a whole new world, one they never thought they would enter.
“After one life was lost, tens of thousands were saved.”
Sometimes, life comes in the form of a child, and it tastes like heartache, loss, revelation and joy.
Sometimes, life leads us to the places that no one really wants to go to: the fringes, the hospices, the sterile hospital rooms.
Sometimes, the world is changed when life is birthed in the hard, unthinkable places.