The Mighty Logo

When I Questioned Where God Was After My Child's Rare Diagnosis

The most helpful emails in health
Browse our free newsletters

December 14th, 2011 my life forever changed, in the most unfair way. My child, just shy of his second birthday, was diagnosed with a life-threatening condition I’d never heard of.

Are you kidding me? We were just at Disney World last week. If only I had known, I wouldn’t have said no to the second Mickey bar. I’d have stayed and watched the fireworks show, instead of wanting to beat the crowd leaving the park. Take me back. I’ll do better. Wake me up. Someone please wake me up.

But I didn’t wake up. I was living a nightmare. I was numb. It’s an indescribable feeling only those who have been through it can understand. I am sharing below my original post discussing that time. I was still raw. And I can hear it in the words. But it is my example of turning a mess into a message.

People always talk about God. I was raised in a family that went to church, but wasn’t overly religious. I never really was forced to answer the age-old question, “Do you believe in God?” until December 14th, 2011.

That day is imprinted on my brain, like a song you can’t get out of your head. And not a good song, like old school Britney Spears or Journey. It was more like the “Barney” theme song. Make it stop. Please.

I remember every single detail and every single slow-moving second of that day. I remember what seemed like thousands of needle sticks it took to get one tube of blood from my screaming baby. I remember the hushed whispers and the unspoken sad glances. I remember the hours spent speculating, as to what could be causing my loving, playful boy to suddenly be fighting for his life.

The image of my precious baby laying in the bed in the pediatric intensive care unit with wires, tubes and monitors on him will haunt me forever.

I remember the looks on the doctor’s faces. The ones you see in the episodes of “Grey’s Anatomy” when the character is thinking, “This kid might not make it.” I remember the nurses preparing me for the worst. I remember hearing the nurses whisper at shift change, “If this blood transfusion doesn’t work, this boy probably won’t make it through the night.” But of all the things I remember, the most vivid memory I have is the sense of fear, confusion, and anger.

An oncologist? Why? Isn’t that cancer?

Someone come tell me what the hell is going on.

What’s hemoglobin? Blood transfusions?

I don’t understand. Someone make me understand.

Someone make this go away. Can I leave? Can we just leave and pretend this never happened? I want my mom. Someone please call my mom.

Wait – I am the mom now. This is my job. I need to fix this for him. Why can’t I hold him?

Why on Earth is no one telling me what is going on? I feel like I’ll hurt someone if they tell me, “The doctor will be in soon to give you peace of mind.” Screw peace of mind. Give me answers. And a hug.

On that day, my son, Parker was diagnosed with a rare blood condition. There is no cure. It rarely occurs in children, so there is hardly any information on it. When the attending doctor in the ER at Children’s hospital saw his hemoglobin level (2.9 at time of admittance) he couldn’t understand how my precious boy was not in a coma or experiencing heart failure. My life was changed in that second.

Now what? Now what happens? Over the next 11 days, Parker underwent blood transfusions, countless blood draws, massive amounts of medication, and hours of doctors and nurses coming in and out with no answers. “We just have to hope the blood transfusion helps. We will know more with tomorrow labs.”

I don’t want to spend one more night here. Fix him. Fix him now. God, where are you? Isn’t this your job? Do something. “He’s not responding as well as we hoped to treatment. We need to give him more steroids. More blood.”

I can’t watch them stick him one more time. I need to get out of here. I can’t be strong. I am not strong. “This looks like it is the chronic form. He will deal with this his whole life. It is not going away.”

Wait, you can’t fix it? What do you mean his whole life? Why? This is not fair. He didn’t do anything. What did I do wrong for God to punish him? Where the hell are you God? I’m still waiting for some answers.

I felt as I had lost all hope and faith in God. I questioned if there even was a God. If there was, he didn’t play fair. This isn’t right. No just God would do this to a baby. But through it all, I found my 2-year-old comforting me. I’d wait until I thought he was asleep, and I would just sob. Every time, as if he knew my fear, I’d feel his tiny hand on mine squeeze, as if to tell me, “It’s OK, Mommy.”

Have I questioned God’s purpose? Yes. Have I been angry with God? Yes. But even at the darkest of times when I have felt alone, I feel as though God has been there. I may not have felt it at the time, but looking back, I feel  it was God who got us through the tough times and still gets us through those times today.

I went through a period of complete bitterness. I felt that as a mom, I had let my son down. I couldn’t fix the hurt with a kiss or protect him from fear or pain. I had no control of the situation. I questioned God as to why he would allow a child, my child, to go through so much pain and sickness. Instead of praying, I argued. I wouldn’t go around other mothers who had healthy children. I grew more bitter when other people would boast and brag on how blessed they were. I distanced myself and wrapped myself around the negative, never looking for the “good” in Parker’s situation. To me, nothing good could come out of a situation where my son was having to fight for his life.

You know what? Good did come from Parker’s situation. We have been taught life lessons that can’t be found in textbooks or taught in a classroom. I have learned to be grateful, truly grateful for the little things. Not a day with him is taken for granted. Each day is a gift, one that I’ve feared we wouldn’t get to see. So when I randomly have emotional breakdowns, bare with me. I don’t take birthdays very lightly because I know that every year is a gift, and I feel it is God’s gift. I have watched my son fight to overcome so much, beating the odds, surviving, fighting back from setbacks and complications. I’ve never seen so much strength come out of such a little person.

I know that just because he may look OK on the outside, doesn’t mean everything is OK on the inside. We are never guaranteed that tomorrow we won’t be back to where we were that week in December and honestly, it scares me. This disease is rare and we know he can relapse at any time, but I also feel God knows what’s in store for Parker long before we do. On the night we were in the PICU, long after the family had gone home and Scott had fallen asleep, I laid in that hospital bed with my baby. I smiled, but I remember looking up and out that tiny window and whispering to myself, “God if you are there, show me. Give me a sign.”

Parker grabbed my hand almost instinctively and pointed it towards that same window. He held it there for what seemed like minutes, and then slowly rolled over and went back to sleep. I get chills thinking about that moment. It felt as though my son had seen God, and was reassuring me. My son has taught me more than I could ever have taught him about life.

So if you asked me today, “Do you believe in God?” I would be able to tell you just how much I do. I see his light in my son’s eyes each and every day.

Looking back, I am grateful for my struggles. My son still deals with his health conditions. We have bad days and we have setbacks. I am stronger because of this. I have learned how to be strong for others. I have learned being brave isn’t always for big, giant victories. Sometimes it’s just for getting through the day. And most importantly, regardless of your faith or beliefs, life is not fair, but it is a gift. It is not a guarantee. Nothing is promised to you. So, try and stop to see the scenery. Enjoy the fresh air. Enjoy the sunny bright days. Find happiness in the cloudy, rainy days. Weather our storms. Keep good company. Laugh. Laugh so much it hurts. Don’t waste your days away wishing for a different story or life or situation. Live. Live today.

We want to hear your story. Become a Mighty contributor here.

Originally published: November 2, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home