When Our Children Suffer

It’s been many months that I’ve thought about what to write here. I have this desire inside to write out the formative happenings of my life, this internal prompting that always nudges me towards transparency, openness, and sharing. I mostly see it as good, a manifestation in me of God’s craftsmanship and I could fight it and try to live outside of it, or just embrace it as part of who I am.

I’ve landed on embracing it. Bring what it might.

But sometimes, the stories in our hearts need time to unfold, to bring the grief they bring, to be honored for the holy and hard work they will do. This story needed time.

I needed time.

I will tell you before I begin that my heart is so tender, my feelings raw, and my hope feels fragile. I feel an ache in sharing this that I won’t do justice to any of it and that my words, that often come so easy, will fail me. So I will just start typing and see where it takes us.

Let me start at the beginning.

When I was very little, my older sister began to notice that it was hard for me to keep up with my siblings. Among other things, we would head to Ocean City, Maryland for two weeks every July - my family’s annual beach vacation. After splashing in the waves day after day, my Mom would choose one night and she would take all of us to the boardwalk - all of my siblings burnt to a crisp, but me? Perfectly tan. Never burnt. I would head out with summer hair blowing behind me that my grandfather said looked like spun gold when the sun drenched it. And I would laugh that my siblings all looked like blond-haired lobsters and I was golden brown.

I got the good summer genes.

We’d walk two blocks from our condominium on 30th Street to 28th Street where the boardwalk began, and we’d walk all the way to the inlet - thirty-six blocks in total. My older sister noticed that after a few blocks, I would tire. I’d need to sit and rest my legs. Never much of a complainer, I’d rest a while, then pick back up and keep going. Rest. Walk. Rest. Walk.

This was how I spent much of my childhood. I didn’t think much of it. It was all I knew.

My parents decided when I was age nine that it was time to see why I was having trouble in the many situations that mirrored the scenario on the boardwalk, so my Mom and I began a series of doctor’s appointments that eventually led to a stumped pediatrician, baffled specialists at our local university hospital, and prompted my Mom to take me from our hometown in West Virginia to Johns Hopkins Hospital in Baltimore, MD for me to be evaluated by a team of medical professionals there. I went through a week-long series of tests and exams, and was diagnosed with a rare genetic orthopaedic condition that was causing my pain, inability to walk well, and fatigue. There was only one doctor in the world at the time who was treating patients with my condition, and he was based in Baltimore - but he had a year-long waitlist to see him.

So we waited.

One year later, when I was twelve years old, I had my appointment in Baltimore and it was there that I got the news that would change the trajectory of my life:

I would need surgery. Lots of it.

I would need double hip and knee reconstruction surgery over the course of many months (which subsequently turned into years), a full body cast for 12 weeks, many months of inpatient and outpatient physical therapy, and a whole lot of courage.

My family moved to Baltimore shortly after my diagnosis that also coincided with my parents divorce (which brought about many complications, trauma, and heartache) and I began my surgeries in 9th grade, when I was fifteen years old. Over the course of my high school years, I had more than ten different operations on my hips and knees, and three different 12-week stints in a body cast.

Here I am in my body cast in the hospital in 1990 with my sister, Cara, who came to visit me from Virginia Beach.

This wheelchair would become my second home throughout high school along with my hospital bed that was set up in the basement of our rented townhouse.

These were HARD years. I was, after all, a fifteen year-old girl full of life and dreams whose friends were skipping off to the pool, going to movies and the mall and out on dates and I was either confined to the basement or in the hospital. I couldn’t imagine that anyone would ever want me - wheelchair bound, can’t do things, can’t walk, can’t possibly be worthy of anyone’s affection. This is a recipe for teenage depression, deep sadness, and loss of hope.

But, isn’t it like God to take the ingredients of disaster and fashion them into a masterpiece of His choosing?

I was desperately lonely, but God lit a small flame in my heart and a flicker of hope began to take root. I began to believe something I had always been taught about Him: He would never leave me. I wasn’t alone. I learned to talk to Him in the dark night of my basement life when I heard the swift pounding footsteps of real life going on above me. I learned during those many years of solitude that we call this prayer - an open conversation we get to have with the God of Heaven who sees us, loves us, and wants to be close to us. He offers his presence wherever we are.

These were the years that God formed, fortified and forged my faith. I learned to trust Him in my loneliness, in my pain, and in my deep sorrow and loss. I saw His faithfulness to me firsthand, in the fresh baked Portuguese bread my best friend Sandra’s grandmother baked for me. I experienced His goodness in the hours my sister Anna would play Mario Brothers with me and in the brief evening minutes when the sun would cast beams of light through the basement windows.

It was during those long, lonely days when I wondered if anyone cared that I was alone that I began what would become a lifelong hobby of hunting for joy in little things - because I could not find it in the big ones. I couldn’t walk. I couldn’t turn over. I couldn’t go out with my friends. Did I even still have friends? I couldn’t do anything physically, but lay there.

But.

I could delight in the prisms the sunlight brought through the window. I could savor every bite of the toast and jelly my sister made me after school. I could refuse to be defined by a situation I hadn’t chosen, but that was mine nonetheless. I began to dream about life outside of my suffering and I didn’t know what it would look like. But I knew I wanted God - my late night listener, my true friend, my confidant - with me when I broke free.

God drew me close and revealed himself to me - this young girl who needed a Comforter for her broken, lonely heart. But he gave me what he knew I needed more - a Savior for my soul.

He saved me in my darkest night.

It was in those months in my body cast that God became my constant companion. If you know me and read my words from time to time, you’ve likely met him here. His name is Jesus. We are tight. He’s never let me go.

That was thirty-one years ago. And there is much more to that story. But, I’ve lived a lot of life since those days in the basement. I had double hip replacements when I was in my mid-twenties and I married Jason, who has only ever seen the scars that cover my legs as evidence of God’s faithfulness to bring me through suffering. And I’m a mama now - to five beautiful souls who are pure joy to me - such undeserved gifts of God’s grace and mercy on my life.

And this is where today’s story begins. Me, as a mama. 

About a year ago, we began to notice that Lincoln, our third son, was having trouble walking. He complained of knee pain and would often feel stiff and sore and would have trouble keeping up with his siblings. I took him to his pediatrician, only to be told that he likely was experiencing growing pains typical of boys in their early teens.

You know how mamas know when something isn’t right?

I knew.

I researched and googled and called places and took him to an orthopaedic specialist here in Raleigh and it was the sunniest day in March when I heard the gut-wrenching words that would rock me to the core:

“Lincoln has a rare genetic orthopaedic condition. It is the same one you have.”

I felt gut-punched. Crushed. When I was pregnant with my first son, Jack, seventeen years ago, I had genetic testing done to see if my condition could be passed on to my children. I was told no.

So, how? 

Lord, HOW?

And how did I not know? What didn’t I see? I could feel hot tears making their way to my eyes but I looked at Lincoln and I saw he was looking at me...

Lord, make me brave. Give me courage. I just cannot do this.

I shoved deep down and away my feelings of panic and fear and put on a plastic face of “It’ll be ok.”

It wasn’t ok. I wasn’t ok. Was my boy ok? 

We were referred to a pediatric orthopedist at Duke who specializes in this condition. And then we went home and I avoided talking about it, even when Jason tried to engage me.

Lincoln’s appointment with the pediatric orthopedist was two weeks later and the doctor came into the room with Lincoln’s x-rays and began to speak.

I knew what was coming. But I didn’t want him to say it.

Please Lord, don’t let him say it.

“Lincoln will need hip and knee surgery on both legs over the course of the next year. We need to begin as soon as possible.”

I looked out the window to try to will the heartache rising within me to stay put. I could not look at Jason. I knew that would be my undoing. His heart is entwined with mine and I knew his was breaking, too. So I put my hand on Lincoln’s leg and told him we’d get through whatever was ahead.

I didn’t believe it. I just said it. It’s what mamas do.

I was so mad at this doctor sitting in front of us for not giving us different news. Wasn’t there another way? Surely medicine is more advanced now. Wasn't there another way?  

Is there anything as desperate as the internal pleading of a mother’s love?

Jason and I rode home mostly in silence. Lincoln wanted a treat, which is what kids in big families always want when out alone with their parents because they’re used to having to share everything and well, big canisters of oatmeal are cheaper than Cocoa Pebbles so they milk you for junk when you’re out. It’s a whole thing.

I was in agony. I wanted to cry and I wanted to make it go away. I wanted to turn around and tell him that the treat wouldn’t fix this and that it is going to be a horrible and hard road for him and he doesn’t even know how much it’s gonna hurt. I sat in silence instead. I knew I’d regret anything I said and hated the thoughts I was thinking anyway. Lincoln happily drank a Chick-fil-A milkshake and seemed unbothered by any of it. He was so brave. I was so heartbroken. 

Only my pillow knows the grief I experienced over the next several days. Only God knows the heartache I felt, the memories and trauma that came flooding back in those late night hours - the basement windows and the bed sores and the loneliness and my parents divorce and how mom wasn’t around much to help me and the confinement of my body and heart. The relentless beeping of hospital machines for weeks on end and the horrible smell of anesthesia and the nausea and the pain. So much physical pain.

I cried so many tears. I wanted to run away. I would go to sleep and then wake up in the middle of the night and remember that laying upstairs was my son who had no idea what was ahead of him and I’d start crying again at the thought of him suffering and Jason would reach over but I didn’t want Jason. I didn’t want anybody. I wanted to run away. I wanted this fixed. I wanted to go back to life before Lincoln was in pain every day and he could run in the yard with his brothers.

I was absolutely grief-stricken.

Why was God asking this of my child? Wasn’t asking it of me enough?

For all of my life, I have never begrudged God asking this physical suffering of me. I have never shaken my fists at him for asking me to suffer or spend my teenage years staring blankly at the wall and alone in a cast or for giving me a life where walking is hard for me sometimes. I accepted it. I was at peace with it.

But this? Now my child?

No.
No. 
I won’t accept it.

I cry instant tears now when I think back to those early days of getting the news about Lincoln's surgeries and the road we're on because I remember how I felt then.

I felt it all.

I let myself grieve. And boy, did I grieve. I sobbed. I gave my heart permission to cry out in agony. I made myself wrestle with the good God that I love. I knew that He could handle all of my pain, all of my disappointment and fear and heartache and well, so He should, I thought. He, after all, allowed this to be. I was so angry with him.

But it was this grieving, the permission to feel it all with absolute abandon that created a tear-stained pathway for where I am today.

My tears and wrestling? They pointed me back to what I learned as a young teen in my own suffering, to what I know is true about God: He will never leave.

Over the weeks that followed, God drew near, just as he had those thirty years ago. My heart began to rally. I could feel hope welling up in me and it was as fierce as the grief it was replacing. I called my sisters and I finally reached out to my tight community and I told them. I told them what was ahead for my boy and for me and my family and that I was heartbroken and grieving and so deeply sad. Just stating it in all of its cold truth felt simultaneously like a relief and like a fresh new wound. Each conversation held a new wave of grief. I will never forget how they cried and carried this with me. They promised to be here for me, to be here for us and the gift of not feeling alone in it anymore fanned the flames of hope within me. They spoke truth to me...and I believed them. They told me I’d never be alone in this, and that Lincoln would never suffer in a basement alone. They told me I was his mama - the perfect one to care for him and love him. That no one was better equipped, better chosen, better worthy of the calling God was giving me to walk through this with my boy. His story would be different. 

I believed them. And God used them to comfort my heart from the initial blow of such hard news and to fortify it for the journey I’m embarking on. I will never forget their words of hope and care and love for me.

So here I am. Sharing it with you, my beloved friends and family from all over. I wanted to write this out for me, because it’s how I best process my feelings, but also for you - because you are somehow, in some way, part of our family’s unfolding story, too.

Some of you brought me flowers and cards and candy baskets and balloons in the hospital when I was going through my own surgeries as a young teenager. You went to church with me and you wrote me cards of encouragement and I still have them. I still have all of them. Your words were life to me in the darkest season of my life.

Some of you are my high school and college friends and you pushed my wheelchair or carried my backpack or walked slower for me on the way to class. You signed oversized cards at the lunch table at school and sent them to me and you called my hospital room and you took me to Chi-Chi’s in my reclined wheelchair. Your kindnesses were never unnoticed and I will always be grateful.

Some of you are my mom friends, that I met in a hundred different ways from a hundred places. You have parented your babies alongside me from Baltimore to Michigan to Raleigh and you’ve read my blog and made my recipes and you’ve always cheered for my kids and for me in every season. You and your children have suffered in some of the most difficult, heartbreaking ways and you have lifted me up with your example of faith and with your encouragement and sharing of your own lives. Your comments on my posts have fed my soul and helped me feel loved this year when I sat behind my computer or phone with tears falling and wondered how I could ever do any of this, if I could ever write or share about it. I am so grateful for a larger community that loves me and my family.

Whoever you are, however you’re getting here to read this, I need your courage and I ask for your prayers. Please keep cheering for my family. Please keep cheering for my Lincoln. Please keep cheering for my other kids, who must sacrifice as they watch their brother go through something so difficult and painful. They are the tightest pack of kids - best friends who are fiercely protective of one another. They feel this all so deeply for their brother.

Speaking of my other kids, I am so wildly proud of them. They have rallied for their brother, come alongside him and protected him and encouraged him and both Jason and I see compassion and empathy taking root in their hearts in the most beautiful way. They are being molded into people who are seeing suffering and pain firsthand, and are tender hearted because of it. Lincoln is giving them an unspeakable gift.

And Lincoln? I asked him if I could share this with all of you and he quickly repsonded, "Of course, Mom." I don't have words for the courageous way he has walked through all of this. I am in awe of him. What a gift that I get to be his mother and love and care for him through this. He will never suffer a lack of love.

I have asked myself this same question over and over these last few months:

Would I will out of God’s hands for Lincoln the very thing He used to draw me to Him those many years ago?

No.
And yes.
No.
I don’t know.

Would I take away from Lincoln the very thing that drew someone like Jason to me - a man of compassion and kindness and tender care?

Would I remove this suffering from Lincoln’s life - the very suffering that has tethered my heart to the heart of Jesus?

Would I fix it all with my own solutions if I could? I actually know how that goes so that’s a big no. I am a horrible fixer.

I can’t answer those questions with any depth of honesty right now. But, I know they are good questions to ask. My heart is fragile and I don’t need to know the answers, but to trust the God that never leaves as I’m walking out this hard road with my child and family. I do know that He will never leave me or my boy. I know this because when I laid there in my own cast, He never left me. He was always there. Faithful. True. Present.

It is no accident that underneath the layers of plaster of my own casts God was building in my heart the faith and resolve and courage to face the casts that await my son. In that dreary basement, he was forging truth in me that would help me bear the heartbreak of watching my child suffer.

Suffering is a good and faithful teacher. OH, how I wish that wasn't so.

Lincoln has his first set of surgeries in a couple of weeks. He will come home from the hospital with a hip to toe cast for six weeks. We will find our way together, and I will get to be the mom he needs, the one I didn’t have. We will cheer for him, care for him, celebrate him, dote on him, and love him with all we’ve got. And we’ll keep doing that until he has more surgery in late winter and then we’ll do it all over again.

He will never walk through a single bit of it alone. He will never live alone in a dark basement. He will never wonder if he’s getting dinner or if he’s loved. He will always know love.

I keep clinging to this verse:

“We have this hope as an anchor for the soul, firm and secure…” Hebrews 6:19

The anchor will hold. Though the storms rage and batter the vessel...

The anchor will hold.

Thank you for cheering for us, for loving us, and for praying for our boy.

And his mama.