On October 30, 2009, my son Silas was born.  I will share the birth story another time–the story of how I became his mama and watched him make his beautiful entrance into the world which would forever change mine.  Little did I know he had a genetic disease that would slowly emerge over the next nine months of his life and cause his brain to stop growing, his muscles to become limp, and his little body to fail over and over again until his breath stopped entirely.  At first he was like every little baby, beautiful, bald, and full of baby smells and sighs. I cherished those early months together, when I held all these dreams for him in my heart, dreams of what he would grow up to be, how he would look, and all of the beautiful stories we would make together.

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At his nine-month checkup with the pediatrician, the doctor became concerned because he was slightly behind on some of his developmental skills.  He couldn’t sit up well.  His head control still wavered.  He was developing muscle tone, but not fast enough. He needed an MRI, she said.  It was at that point I realized there was a significant problem.

This can’t be happening.

I tried to hold it together, to push back the pain, but the tears leaked from my eyes like a dam holding back the ocean.  

I loved my son.  I loved him so much.  How could there be something wrong with him?

I was hoping by some small miracle he would escape a bad diagnosis, that everything would turn out okay after all.  I’ve never forgotten a rabbi’s comment I once read in a book:

“Everyone wants their child to be normal.  Normal, but not average.”

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I just wanted my son to be healthy, the thing that every parent prays for before their child is born.  I didn’t want him to be sick in the hospital or end up in a wheelchair. I knew what the Land of the Sick looked like.  I had visited that place during my husband’s cancer; I did not want to go back. So I prayed,

Please God, let my son be okay. Please let it be something curable.

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During the MRI they drugged him and then pushed his body into a giant cavernous rocket ship where his tiny toes stuck out from a paper blanket.  He looked so small beneath the giant machine that pinged and rattled and clanged.

In the past three months we sold our home, packed everything we owned and prepared for our home closing, scheduled the next day.  We left the hospital hoping nothing would come from those brain images and we could get past this little bump in the road and focus on our move.

After Sam’s cancer, I’ve learned that doctors never call quickly if a test result is normal.  So when the phone rang a few hours later, I knew.  I closed the door of my bedroom, sat down on the edge of the bed and waited.  The doctor informed me there were dark spots on Silas’ brain called acute necrosis encephalomyelopathy. I didn’t understand what this meant, except for the word necrosis, which meant living tissue that has died.  This dying tissue was on his brain.  These black spots, according to the doctor, were consistent with Leigh’s disease.

The doctor had never seen a patient with it before.  She didn’t even know exactly what the disease was.  She recommended we see a pediatric neurologist the next day for a confirmation of the diagnosis–the same day as our house closing.

The timing couldn’t be worse.

I hung up and looked up Leigh’s Disease online.  I began to read through some very confusing information.  It was rare.  It was a genetic disease.  It affects the brain.  The mitochondria, necessary for human life, are dying.   There is no cure.

Life expectancy: Two or three years.

I read those words and felt physically crushed inside.  The overwhelming wave of panic and fear felt something like the moment right before you vomit.

Over the next few days, I cried all over our packing boxes.  I cried as I threw the last of my kitchen stuff into the boxes.  I cried as we stacked and sorted.  At one point, my husband told me that I needed to pull myself together because I had been crying so much, the children were rattled.  In an attempt to comfort me, my daughter said,

“It’s okay mama, it’s not like Silas is going to die.”

Except that he was. And I couldn’t even say it.  Instead I covered the boxes with my tears, drops staining the brown cardboard like rain.

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We went to the neurologist the next day. I hoped the diagnosis was wrong, that there was a mistake in reading the MRI.  I held on to this hope until this doctor confirmed my fears:  Silas had Leigh’s Disease.  He saw my face fall at the news.  Then he smiled and said, “Stay strong, mama,”  and walked out of the room.

Stay strong?  This guy just gave my son a death sentence and he wants me to cheer up and pretend like nothing was wrong?

We went to our home closing and signed papers, our minds in a fog.  I scribbled my signature on each paper like a machine.  What did it matter anyway?   If I had signed my life away, I would not have cared.

The next day arrived and we had no energy, no excitement, none of the things that help you get through the rigors of moving.  We put one foot in front of another and moved with the help of friends and family who gave up their Saturday to do what they could in light of bad news.  I have never forgotten the generosity of those who showed up during a very dark time in our lives, who showed us love when we weren’t very lovable, and who encouraged us just by being there.

Little did I know that this was just the start of our journey.   Many would pour themselves out for us over the next few years.  They would babysit Silas so I could go to church, the grocery store, or on a date. They watched our daughter during the weeks we spent in the hospital.  They would clean our house and buy us groceries.  They would show up during our dark days, would pray for us in the middle of the night and lift us up when we could not stand.  But I did not know that yet.

I only knew about the little boy I loved so much and the uncertain future before us.    This was the beginning of my begging, my pleading at the feet of God saying,

Please God, don’t let my child die.

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This was the beginning of the tears.  The beginning of wishing life was somehow different, that my child was healthy, that we were just a “normal” family, that I could go back to life before the diagnosis.

Yet God didn’t choose us for that.  He chose us to parent a broken child, to struggle through the heartache and the loss. He chose us for something I didn’t feel qualified for or strong enough to endure.  Over the years I realized that because I felt so inept, so weak, I would rely on God’s strength even more.

God sometimes gives us more than we can handle, so we learn to lean on Him.

I felt alone.  Terribly alone at times.   Few people had been down this path of watching their child die.  During those days I held on to the fact that this illness was no surprise for God.  He knew about it when Silas was being formed. He shared in my suffering, even when I cried out, Too much, Lord, too much!  He understood what it was like to watch your own son die.  I might be wavering, staggering even, but none of this shook God.  Because He takes the dead things of this life–the hopeless news, the broken bodies, the sick at heart–and turns them into something whole again.  I glanced at my fireplace, full of dark ashes and soot, remnants of what they used to be, a living tree, burned to nothing but this fragile debris.

This feels like my life. Yet His promise was there, even in the black dust:

He gives us beauty for ashes.

How would my son’s life, my life even, be turned from ashes into beauty?   I could not understand it.  But I held his promises close to my heart like I held my son as he slept.  He would help me mother a broken child.  I could embrace the brokenness of this life and somehow make it beautiful.

Somehow.

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Sara

5 Comments on The Beauty of the Broken: The Story of My Son’s Diagnosis

  1. I long for normal, seek it, ….lack of pain, lack of heartbreak, yet it in these moments I see God’s character fully and others see mine. Your pain breaks my heart, brings me to my knees in prayer for you. I rejoice for the promised hope you have for Silas, yet cry for the pain that lingers in your heart. Know that you continue to be lifted up. Your words inspire and encourage those who are walking through pain to continue on with hope. Bless you!

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