Special Needs Kids: Heart Defects & Brain Injury

I could barely look at the page she handed me. As soon as she pulled it out, my chest tightened and the skin in my face grew hot. I was pretty sure that meant blotches. How I hated being so easy to read.

She described all the benefits the equipment would provide to my daughter, then put it away. She sensed my discomfort, my unhappiness at the direction our conversation had taken.

“Just think about it for awhile, ok? If you decide you want to go ahead, I will help you get it approved.”

***

My daughter Ellie was born with such severe heart defects that the specialists didn’t think they could repair it. We braced for heart transplant, only to be told she didn’t have time to wait. We had no choice but to attempt repair.

The next morning, her heart stopped beating for 30 minutes, resulting in brain injury and severe cerebral palsy. This single event devastated her body far more than her heart condition did. Three weeks later, we authorized an open heart surgery we were told had only a 20% chance of succeeding. What choice did we have? Opting out of surgery had a 0% chance of survival.

For six terrifying weeks, we huddled by her bed in the cardiac intensive care unit while she fought for her life, body wracked by faulty heart rhythms and seizures. I pumped breast milk every three hours for months and learned to insert a feeding tube through her nose down her throat into her stomach. In her first three years, she revisited intensive care multiple times and underwent three more open-heart surgeries.

Occupational therapy began after the first surgery and continued uninterrupted for years. At the time of the above conversation, Ellie still couldn’t sit by herself, let alone prop up on her hands or crawl. She was tiny for her age, but she couldn’t help me carry her like a toddler does. She either collapsed against me like dead weight or lurched backwards, nearly pulling me down.

I was so tired I would fall asleep during her therapy sessions and had to slap myself to stay awake driving to and from the hospital. We weren’t allowed to let her sleep through the night until she was a year old because her body needed calories around the clock.

Ellie in her Kid Kart

Despite all this, I was still in denial about the CP and the permanence of her physical challenges. I told myself that many heart babies lived relatively normal lives (but they didn’t have brain injuries). I thought if I said words like “disability” I would be giving up on her. She might have seizures and be unable to drink from a straw or talk, she might be years behind developmentally, but I still hoped she could catch up.

Plus, wheelchairs were obvious signs of all that was broken inside. Everyone would know something was wrong, and they might treat her, and us, differently.

Into this mental climate, her physical therapist introduced the Kid Kart. This dear woman was a special needs mom too, and she had been through this with many other parents. She knew that bodies need certain kinds of support to learn balance and core strength. So she showed me the Kid Kart and described what it would do for Ellie.

I hated it. As much as they had done to stroller it up, I knew it was a wheelchair.

I left the flyer behind that afternoon, but every day for the next week I thought about what she’d shown me. As I tucked rolled-up towels around Ellie in a regular stroller so her head wouldn’t flop, I pictured the custom headrest on the Kid Kart. When she thrust her hips forward and nearly slid off the end of the stroller over and over again, I thought of the special straps and hip supports she could have.

I faced the truth, the real reasons I didn’t want to get her a wheelchair. It was me, my own hang-ups about it, not any factual objection based on concern about the best for her. Gently, God showed me that getting a piece of equipment to help her was the opposite of giving up.

The very next week, I told our therapist, “I want to order the Kid Kart.”

Of course, two months later when the therapist handed me a form to get a handicapped placard for our van, I slid into denial all over again. Park in handicapped spaces? No way. (Yes, I came around, but that one took awhile.)

***

Raising a child with special needs is like being deported to a foreign country. We don’t choose it, and we’re stuck. We have to learn a whole new language, way of doing things, and adjust our goals and expectations. We find a new normal, some of us kicking and screaming all the way, some of us more readily. Eventually, we learn to appreciate things about being there, though we often watch “normal” families wistfully and wish for that.

Our deportation changed two years ago when Ellie died at the age of eight. My youngest was also born with a serious heart defect, so we still live in a foreign country, just one without the physical disabilities Ellie had. We still live with all the tests, surgeries, medical bills, and uncertainty.

I am forever changed. Raising Ellie grew me up like nothing else ever has. It gave me a very different perspective on parenting and on what is really important.

I treasure each new skill my younger children master because I know how hard Ellie worked. Each milestone is a miracle not to be taken for granted.

When my son removes his poopy underwear, drops it on the deck out back, and comes swaggering in covered with poop while the dog is outside licking it, I’m a little bit more able to laugh about it. I know that it is a blessing that he has the motor skills to do that. I just wish he would apply those skills to sitting on the toilet.

When I meet parents raising children with special needs, whether they are overtly medical like my children’s heart defects, or invisible developmental disorders like autism and other delays, I know how tired and overwhelmed they are. I’m much more able to extend grace, expect the unexpected, and avoid the temptation to offer simplistic answers.

A tip to friends of moms like me — don’t offer suggestions or advice. You can be sure they’ve been there done that a long time ago. Listen to them, ask questions so you can understand better, and find ways to help carry their load with them, like housecleaning, babysitting other children, doing yard work, and bringing meals.

I have also seen 1 Corinthians 1:26-28 in living color. Brothers and sisters, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him.

In giving me Ellie, God showed me His upside-down kingdom where the weak and the lowly and the foolish are special to Him even as they are sidelined and forgotten by the world. Ellie shone God’s power far more eloquently than I in any of my achievements ever could. And for that, I am thankful.

Joy is a writer, mother of four, wife, amateur pediatric cardiologist by necessity, bereaved and seeking faith anyway. I’m so thankful that she took the time to share her story with us today. You can read more from Joy at her blog, Joy in This Journey.

Comments

  1. So well put. I related very much to your point about how getting the wheelchair was hard because it was the outward sign that your child wasn’t “normal” and how once you got over your own hangups, things fell into place a little more easily.

    I’m so sorry for the passing of Ellie.

    You may not feel like a hero, but please know that you are. Ellie, too.

    • Ellie was inspiring to everyone around her — truly a hero. She tolerated so much more, with a smile, than I could begin to imagine going through. Her bravery helped me be brave with her. Thank you, Cass.

  2. Oh, your words broke my heart and reminded me how much I’m holding it all together about my three with special needs. It really is like being deported to a foreign country. But I so understand that upside down kingdom idea too – it’s what makes every day worth getting up for! Thank you so much for your heart here! May God wrap His powerful presence around you in blessing this weekend, my friend!

    • Thank you, Laurie! And prayers for you as you are caring for three. It’s so difficult, yet you wouldn’t do anything less because you love them.

  3. Joy,

    My world is enlarged. All I knew about parents with special needs kids was that they were more loving than any parents I’d met. I understood that there was something about the experience that radically changed them and gave them super powers. Now I have a tiny glimpse behind the curtain. I’m grateful for that – and you. I’m so glad I ‘met’ you last night. Still digging through your archives if that’s ok.

    God Bless you and yours
    God Bless Elli(e) (she is beautiful) (the present tense is intentional)

    I thank both of you.

    • Super powers? I suppose, since they come from God. It is nothing in myself that got me through/is getting me through. When I was being me, I was upset about the whole situation and frustrated beyond words. But God helped me settle into that place and do what He asked of me, for the most part.

      Thank you for your kind words, Craig. You are an encouragement. And yes, dig away in the archives. :)

  4. Tricia jonson says:

    Joy,

    Thank you so much for this post. This was beautifuly written and something that our family can somewhat identify. Having two special needs children is not easy and it does feel like a foreign world at times. You feel all alone and you do find yourself looking at other families and wondering what that is like. I love my children and what a reminder of the blessings they really are to us. God really does grow us through difficult circumstances and I am forever grateful for that. I love you and your family. What a blessing you are to us.

    Tricia Jonson

  5. I remember feeling this way to, you grieve for the dreams you had for your child. Like you I know God blessed me with Livvy and I would do it all again tomorrow xxx

  6. I am humbled by Joy’s words. I am new to the special needs parent thing, and my daughter’s “needs” don’t seem that “special”. But what a big role denial plays in the whole process, and how much it is motivated by SELF and not LOVE.

    AND I am a new follower because I long ago gave up on perfect and am thrilled to find someone else who has as well! ;^]

  7. As an adult with CP (albeit much more mild than Ellie’s) I am glad that you shared this story. I was, however, struck by the fact that a lot of it had more to do with your own emotional hang ups about her wheelchair and parking permit than how she grew up. I know all too well what it’s like to feel different or be stared at, but I am glad that my parents didn’t let their own social anxieties stop them from taking advantage of any and every opportunity to help me become more independent — whether that meant encouraging me to use a walker, crutches after surgeries, or a walking stick in college — all of which set me apart from my peers. I would complain about that, but they patiently reminded me time and time again that these were the things that were helping me get out into the world on my own, which is what I wanted most of all. As I grew up and grew out of my insecurities, I came to see that they were right. (So, yes, I still have that parking permit). I am now married and live an ocean away from my parents — but as much as I miss them I am grateful that they were wise enough to see that everyone can be labeled ‘different’ for one reason or another and that I shouldn’t worry about what other people might think when they see me walk or how they might react if I ask for help. That’s what gave me the courage to go to college on my own, where I met my husband and discovered the passions I pursue today. When I go through an airport in a wheelchair and people stare at me, I just smile and let it go. Only a child does otherwise (and believe me, I know, I was that child).

    • Thank you SO MUCH for sharing your perspective, Valerie! Especially for those of us with children who cannot communicate, it is so helpful to hear from someone who has experienced life from a similar vantage point to our kids. I could never really tell what bothered Ellie and what didn’t — other than I know she hated stretching (but who loves it at age 8?). Anyway, your story is so encouraging to parents in the thick of it to persevere themselves and to keep encouraginge their children to keep working hard to achieve the independence they hope for. Thank you!

      • You’re welcome. To be honest, at first I wasn’t sure if I should comment, since, from what I’ve seen. everyone’s CP is different so everyone’s experience of CP is different as well. I am glad I didn’t come across the wrong way. My CP affects my legs, so my therapies were focused on stretching, walking and climbing stairs — ugh. (I would have much rather been left at my desk to read, which is mainly what I do now as a lazy grad student…..) Mom still reminds me that when I was little I used to distract my therapist by telling her stories when I first came in, so we’d spend the first ten or fifteen minutes of our session talking instead of stretching. ;) I could be a real pain, but I’m glad that my parents and therapist forced me to do all those exercises because, I have to admit, they did help!

  8. Joy, thank you so much for sharing your story. Ellie was a beautiful girl and I am so sorry for your loss.

  9. What an amazing story. Ellie was a beautiful girl. It’s very eye opening, reading these stories about families of kids with special needs. Thank you for sharing.

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