Healing hearts - a short story about Kawasaki disease, and how my son overcame it

Usually, my blog posts are rich in pictures, and not so rich on text.

But today, I would like to share with you a short story I wrote about my middle son Lukas, who almost died six years ago.  I am sharing this to give hope to the people who are dealing with similar challenges, and to celebrate Lukas.

Here we go.

Healing Hearts

by Corina Sahlin

My husband and I sat on the hospital bed where our five-year-old son Luke lay very still, his face as white as the sheets on the bed.  My newborn daughter started fussing, just as the team of doctors walked in to give the results of my son's echo cardiogram.  I put the baby on my breast to start nursing, so I could give my full attention to the experts, and without any preambles, they told us that Luke had three coronary aneurysms.  What I remember most about the seconds after this verdict is that my milk would not let down, and that my little daughter started wailing.  I didn't wail then, but cried later in the bathroom with a wash cloth stuffed in my mouth,  so my son wouldn't hear me cry and get scared. 

I had never heard of Kawasaki Disease before.  It's a disease that causes inflammation in the tissues of a child's body, and for some reason, the coronary arteries are particularly vulnerable. 20 percent of children have some coronary complications with this disease. 

My son was one of the unlucky ones.  When the doctors told us the test results, we didn't know exactly what it meant, but we knew it was bad.  Luke was a very active kid, raised and homeschooled with a two-year-older brother on our homestead in the wilderness.  Heart aneurysms seemed like a death sentence to me.  

A week after the diagnosis and treatment, my son came home from the hospital.  We were armed with more knowledge about the disease and its consequences and felt like war veterans, PTSD included.  As we drove home on the interstate, with our son still weak and uncharacteristically quiet in the backseat, I caught a glimpse of Mount Baker to the East, a 10,800 feet glacier-covered icon in our region.  It has tremendous significance to me – not only because of its beauty, but because I have spent many hours admiring it from different angles on many hikes.  Some of my most treasured memories come from camping on its slopes.

When I saw this mountain on our drive home from the hospital, something shifted inside of me.  For the first time in a week, I felt hope.  A vision of Luke came over me: I saw him climbing Mount Baker, with a strong body and a healthy heart. I saw his calf muscles contracting and expanding, contracting and expanding, as he scaled the mountain, and I saw his heart muscle doing the same, strong and rhythmically.  It was then that I felt in my bones that he would be fine.  I turned my head to look at his pale face and smiled.

In the next three years, we became intimately acquainted with hospitals, blood labs and medical procedures.  Luke had to have his blood drawn once a week to measure his blood thickness and had to take the blood thinner Coumadin and one baby Aspirin every day to ensure his blood stayed thin.  His blood needed to be thin so it wouldn't pool around his aneurysms, like an eddy in a river.  If it pooled, it could produce a clot and heart attack.  He had regular echo cardiograms, angiograms and EKG's.

The medication made him a bleeder.  I worried about him falling off a bike or tree and dying of internal bleeding.  I worried about him not being allowed to play contact sports because I didn't want him to be different in his friends' eyes, worried about his older brother being too rough with him, worried about the medication and all the x-rays and MRI's being bad for him.

My husband and I made a choice: We wanted to continue our lives as usual.  We homestead in the wilderness, with lots of exercise, fresh air, clean water and healthy food.  Our kids were used to mucking out the goat barn, weeding the garden, picking apples and blueberries.  They were strong bicyclists and hikers and could outrun all their friends.  We decided not to coddle Luke.  We figured that a strong heart needed lots of exercise, fresh air, clean water and healthy food.

I took my boys on mother-and-sons-only backpacking trips in the Cascade Mountains where we lugged heavy packs up steep passes to camp on windswept ridges and watched the sun set in the West while the full moon rose in the East on top of Skyline Divide, a ridge close enough to touch Mount Baker.

The real victory took place on a volcanic peak in Southern Arizona.  Since we are a home schooling family, we are not bound by vacation schedules.  So in January 2013, we packed our small RV and fled our rainforest home in search of sun, nature and adventure.  We hiked in the Redwood Forest and walked wild beaches at Big Sur.  We struggled through snowy trails in Yosemite.  We got pricked by Cholla Cactus in Joshua Tree National park.  We trekked half way down the Grand Canyon and up again in one day.   We mountain biked on massive red rocks in Sedona.  

One day, while my other two kids stayed at the campsite with their Dad, Luke and I hiked up Picacho Peak, a 22- million-year old volcanic mountain.  A sign at the beginning of the trailhead warned about the difficulty of this hike: Only children older than 12 were advised to hike there, and only when accompanied by an adult.  My eight-year-old son winked at me and told me he could do it.  We labored up the steep trail, exposed by the Arizona sun.  After two hours of Luke charging up the mountain while I sweated and cursed behind him, the trail changed.  It now involved climbing up an exposed cliff while hanging on to a steel cable.  My heart dropped.  I looked at my excited son.  

“I think we should turn around now,” I said.

“Mom.  We can do this.”

I watched a vein on his sweaty forehead, pulsing with the beat of his heart.  My brave son.  Who was I to cheat him out of this experience?

Carefully, he led the way, climbing up a steel rope ladder.  Right behind him, I watched his calf muscles contract and expand, contract and expand, as my heart beat to the same rhythm.

Later, when we both stood on top of the peak, triumphant, the wind rushing in our ears, letting out screams of joy, I realized that this had been my vision years earlier: My son leading the way up a mountain, healthy, strong, fearless.  As we mothers know, being a mother is like having your own heart walking around in another body.  But on that day, on that mountain top, I realized that being a mother is also feeling your child's heart beat in your own heart as you let him follow his own courage and healing.

Four years after his bout with Kawasaki disease, the doctors took Luke off the Coumadin.  And if you were to spend a day with him, you would never believe that this active, vibrant, energetic kid ever stood at the brink of death.

Here is the blog entry I wrote about this hike.

And here's the one where I announce a miracle.