an honest look at special needs parenting: and why you can do it too.

December 17, 2013, Michaela Evanow, 28 Comments

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.

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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.

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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.”

Deep breath.

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.

Philippians 4

28 Comments

  • Reply Tracy November 5, 2015 at 9:20 AM

    Thank you for this beautiful story.
    I have two children with special needs
    I believe they were angels that came here to experience unconditional love.
    I wonder why God chose me. I realized the other day after talking with a friend who was down that because of my children I am able to lead people to Jesus. There are hard days but I know he is always there

  • Reply alicia December 19, 2013 at 9:45 PM

    Your writing captures beautifully your time with your baby girl. If only all babies were blessed to be born into such love.

    • Reply Michaela. December 20, 2013 at 10:33 AM

      Alicia, if only the world received this love, that comes in the form of a child…

  • Reply cc December 18, 2013 at 1:44 PM

    just came across your blog. your story is so heart wrenching. i’m originally from BC

  • Reply Katrina December 18, 2013 at 9:18 AM

    I loved reading your post. I parent a special needs daughter who is almost 14. she has angelmann’s syndrome and a variety of other disabilities. her world is complicated at points. I have found in my journey with Jesus that Steph has been a key maturing factor for me. Many times we have hit challenges and I say, “I just can’t do this one. I just don’t have it in me.” And then I turn and see Jesus with me saying, “My grace is sufficient, sweet one. My power is seen perfectly in your weakness. Let’s do it together.” this whole experience is a faith experiment in weakness. I am still ashamed to say that I would never have picked this life, but the rich life I have found here with steph is something I would NEVER exchange. be blessed, mama, knowing that you are not alone. Jesus will sustain you in ways you thought impossible to care for you sweet child who He loves deeply. thanks for sharing!

    • Reply Michaela. December 18, 2013 at 4:42 PM

      Katrina, it’s so nice to hear from you. Thank you for writing and sharing your story of your daughter. Thank you for your honesty and vulnerability too!

  • Reply Steve Peifer December 17, 2013 at 4:52 PM

    I am struck by the power of His grace. I went through a bit of what you are going through, but when I look back, I cannot explain how we got through except for His grace. My prayer is that you will continue to find Him.

    • Reply Michaela. December 18, 2013 at 4:47 PM

      Hello Steve, thank you for visiting and for your words!

  • Reply Lisa December 17, 2013 at 4:06 PM

    oh this is a beautiful post. michaela the walk and the peace and the authority and the gentleness amidst your raw authenticity is breath-taking. truly. i wept as your mama danced beside me on Sunday singing out over the waves…i will keep my eyes on You…and i thought, these women know that they know, and it is amazing and humbling and inspiring and beautiful.

    • Reply Michaela. December 17, 2013 at 4:59 PM

      Lisa, it’s a painful journey to that place of knowing…but it’s worth it. Thank you for blessing me with your words.

  • Reply Danielle December 17, 2013 at 3:22 PM

    Again your words bring me to tears….you’re one amazing woman I lift up to God in prayer and look up to you in awe of your strength in Him. I really hope one day Elmo does come to surprise Flo. That would be the greatest joy to see her smile so big her eyes almost close:) much love from our family to yours. We pray for you often and dance to “roar” telling my eldest it’s “Florence’s” song. xo

    • Reply Michaela. December 17, 2013 at 3:40 PM

      Danielle, wouldn’t that be the loveliest? We are actually going to see the Elmo and friends live show this weekend. It’s a big, brave step for us, but this kid has to see Elmo!

      • Reply Danielle December 17, 2013 at 9:03 PM

        AMAZING!!!! She really does will be praying for you all that it goes well!

  • Reply Anne-Marie Heckt December 17, 2013 at 3:01 PM

    So lovely, Michaela! In the midst of the difficulty, what stands out to me is your joy. Love love love the image of you dancing around the living room together, and blowing bubbles!

    • Reply Michaela. December 17, 2013 at 3:41 PM

      Thanks Anne Marie! She brings me so much joy. xo

  • Reply Teresa December 17, 2013 at 1:06 PM

    Hi Michaela,
    I’m so touched by your story. I follow along as Dayna calls for prayer on Facebook and as other common friends like your blog posts.
    I am a pediatric nurse at Children’s hospital right now. It is a privilege to be in my line of work caring for children who need extra help and care. It is so good to read about your experiences, struggles, joys, sorrows – it is good for all of us to catch a glimpse.
    Thanks so much for being vulnerable. You and your family are in my prayers. I know that if I met you I would be surprised by how young you are because your writing, thoughts and insights are so very wise.
    I hope that Christmas is sweet for you all this year. Peace out- Teresa

    • Reply Michaela. December 17, 2013 at 2:40 PM

      Hello Teresa, thank you for stopping by and introducing yourself! What a special, incredible job you have at Children’s. And thank you for praying. xo

  • Reply Sophie December 17, 2013 at 11:43 AM

    But he knows the way that I take; when he has tried me, I shall come out as gold.
    (Job 23:10)

    I saw this video and thought of you ~ I thought I’d share:
    It’s called: “A Letter from Dad”

    Praising God for you and your family!

    • Reply Michaela. December 17, 2013 at 2:39 PM

      I’ve watched that before and bawled my eyes out. Thanks for the scripture too, Sophie! xo

  • Reply Bethany Olsen December 17, 2013 at 11:42 AM

    I don’t have words… except to say that you are amazing. Keep on writing, girl. I’m honored to know you.

    • Reply Michaela. December 17, 2013 at 2:38 PM

      Bethany, I’m so honoured to have you in my life! Thank you friend.

  • Reply Jennifer Gorman December 17, 2013 at 11:26 AM

    I was blessed to journey through miscarriage, and then through almost miscarrying my two living children. I then had gestational diabetes with each of them. When my son was born he was late in smiling. Something just turned in my heart. I could see something was wrong. He finally smiled for the first time weeks later on a family camping trip, and my camera just happened to be in my hand. But the rest of his childhood was spent missing milestones, with the doctors and experts saying, “He’s just a little behind, he’ll catch up.” I fought for him, and fought my own autoimmune disease at the same time. He was a joyful, wondrous challenge. He was finally labeled with High Functioning Autism and an Anxiety disorder at eight years old, as well as mild cerebral palsy and ADHD, as well as being Gifted. He is now 16, and his older sister is 21. We now fight with severe depression in the mix as well. But he is a wonder. He is so very deep, so intelligent, so creative, so sensitive. He writes poetry that amazes everyone. He speaks in our church, and brings people to tears and motivates them with his words. Those words from God, that this child has more purpose then just fulfilling my motherhood, were a kick in the pants for me too today. This has been a very difficult week with his anger issues. I needed to see the bigger picture today. God has a huge purpose for this child. Sometimes it feels like by 16, I should be done with the messy stuff, the in the trenches hard stuff of motherhood. He should be getting this stuff by now, the hygiene, the getting homework done, the organization, etc. I have no idea how he is going to ever live on his own, ever be independent. I remember those early days, the never getting out of pajamas.

    • Reply Michaela. December 17, 2013 at 2:37 PM

      Jennifer, I appreciate your words so much. Thank you for taking the time to write out a piece of your heart. Your son sounds like a beautiful wonder. Many blessings to you and yours. xo

    • Reply Gillie Ruth December 17, 2013 at 6:30 PM

      Jennifer, don’t give up, and don’t panic. I’m here to tell you that children with these disorders DO make it, but the journey is long, and for a life time.i have a 25yo and a 23yo. Both dreadful asthmatics. And within six.months of each other, both nearly ‘went home’ early with attacks that had one in an induced coma for a week, and the other in ICU with anaphylaxis. One has ADHD, autism, high anxiety disorder, is gifted with brilliant poetry writing, and a hard road we had, but great joy, he is now woth the postal service and had two promotions in five years. The other has ADD, minor brain damage, high functioning autism and anxiety. He has been a security guard for five years, and is now nearly through an application for a police related job. Fighting the unbelief of the church and school about the realities of these disorders has made us all strong, and God Has kindly used me to spend countless hours with other kids and mums in the same boat. I teach, and this experience even comes in with our neighbours son who is severely Aspbergers…he too, is making it through life…and I get to help, how good is that? I look at my sons every day, and think. I did that, I made these boys…wow! We have had many lost you g friends brought home by my then young sons…they can stay cant they mum? Then I hear a sad tale of strife. So yes!! Anyone can stay, in the fitted up garage, in the house, on the floor, wherever. What a reason to live!!!! It’s all worth it. We lost my younger sons twin by miscarriage, but all up, my pain is strong for those who lose their children, but you can’t understand, or help u less you have been there….can, and you can help others too 🙂

      • Reply Jennifer Gorman December 18, 2013 at 10:52 PM

        Thank you so much for your encouragement. Today was a good day. He was asked by his youth pastor to write poetry on the Fragility of Humanity for church on Sunday, and then read it. And he had a good attitude all day on top of it, and wasn’t over stimulated. So I am just so thankful for the baby steps in each day with him sometimes. That is wonderful that you can reach out to others so much. That is a huge blessing both to you and to the lives you are touching. Thanks, Jen.

        • Reply Michaela. December 20, 2013 at 10:34 AM

          Jennifer, I am thankful for the baby steps in your journey too! Rejoicing with you. Thank you. xo

  • Reply Sarah Bessey (@sarahbessey) December 17, 2013 at 8:57 AM

    I’m just so glad to know you. Beautifully written because it’s beautifully lived and felt and understood. xo

    • Reply Michaela. December 17, 2013 at 9:30 AM

      Oh Sarah, your words are so very kind and precious. Thank you. Much love to you. xo

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