As I faced my worst fears as a mother, I learned to trust God

By Carrie M. Holt

Carrie Holt

My husband and I were startled awake in the early morning hours as we heard our 5-year-old son’s night nurse calling. An anxious feeling grew in my stomach. Something was wrong with our son, Toby. 

In a matter of minutes I was on my feet and acknowledging one of my worst fears: Toby was having his first seizure. This wasn’t our first trip to the hospital in an ambulance. We were more familiar than most with the walls of the hospital in Columbus, Ohio.

In late 2006, Toby was born with a condition called Spina Bifida. He was born with an open hole in his back when the bones of the spinal column didn’t close around his spinal cord, causing damaged nerves, muscles, and paralysis. 

Two weeks later, his situation worsened when he went into respiratory failure, the result of complications due to a malformation in his brain. 

Two months later we brought home a medically fragile baby, with a tracheostomy, a ventilator, a feeding tube, and home nursing care. This was rare for our son’s condition, but not completely unexpected.

Carrie Holt’s family.

Facing my worst fear

Carrie Holt and her son, Toby, who has Spina Bifida.

Five years later, we had been through some pretty scary medical scenarios, but I feared seizures the most.

Maybe it was my lack of control, medications used to treat them, or trepidation over it hurting our son mentally, but seizures were scary.

Most people have a bucket list. I, as a special needs mom, have an “unbucket” list, events I never wanted my son, Toby, then five years old, to experience. Seizures were on that list.

After we arrived at the hospital, his second seizure began. It lasted four to six hours, leaving doctors puzzled at how to stop it. His body became so fatigued it couldn’t shake anymore, even though he was convulsively seizing. I was devastated.

I began to wonder if God had missed this. He had to have been looking the other way. We had been completely blindsided.

I felt forsaken and alone. Didn’t God know that we had already been through so much? Shouldn’t we get a free pass on future suffering? 

After all, my husband and I had already proven we were faithful to Him. We went to church, led a Bible study, sent our kids to Christian school.

We weren’t angry about what life had dealt us the previous five years. Hadn’t we proven our faithfulness, so nothing bad should happen to us anymore? 

Then the fear set in. I feared Toby wouldn’t wake up. I feared he wouldn’t be the same mentally. 

Toby lost the ability to speak when he was six weeks old with his tracheotomy surgery.

I didn’t hear him say the word “Mama” until he was almost three. I feared he wouldn’t be able to tell me he loved me. 

I put my trust in God

I felt sick and decided to go for a walk.

As I walked the sidewalks outside the children’s hospital, I prayed. I cried. I ranted. I grieved. Then I checked my phone. There it was the encouragement I needed through the texts of friends.

      God knew this was going to happen.

      He prepared us for this moment.

      He is with us now.

     He never left. 

It still took some time to fight the fears and questions of what was happening, but I kept going back to read those truths.

Just because our circumstances had changed didn’t mean God’s character had. He was still the same loving, trustworthy, Heavenly Father who had a purpose, a plan, and would walk through this with us. I breathed deeply, cried, prayed some more and chose to focus on the moment in front of me. 

The next afternoon, as a nurse was caring for Toby, his eyes began to flutter open. I rushed to his bedside. As we asked him questions, he shook his head no, even though he could barely hold his head up, and he tried to smile.

I was relieved, grateful, and then joyous. He was going to recover. 

It’s now 2021, and our son is fourteen years old. Over his lifetime, he’s experienced nearly 60 surgeries. His seizure episode impacted my life in particular because I learned that just because I had been through previous hardships, trials are still going to come.

Past difficulties don’t negate future walks of sorrow. Each time they wheel Toby’s bed into yet another surgery, I face similar fears. 

My son and I always pause in the hospital hallway to hug tightly and share words of comfort. Each time I wonder: Is this it? Will he wake up from this one? 

Then Toby reminds me, using the voice he was blessed to gain at age three.

“God’s got me. He’s with me, mom.”

Carrie M. Holt is a writer, speaker, and podcaster. She is passionate about encouraging mothers of special needs children to identify, accept, and thrive in the grieving cycle that is part of the special needs journey. She co-hosts a podcast entitled, Take Heart, speaks to various groups about “Dwelling in Hope,” and volunteers at her local children’s hospital speaking on the topic of Family Centered Care. She wrote a chapter in the book Your Next 30 Days of Relationships, on what to do when your child suffers. She can be found online at her website: www.carriemholt.com, on Instagram @carriemholt, and Facebook @carriemholtwriter. Her podcast, Take Heart, and is found on all major podcast stations and at www.takeheartspecialmoms.com.