There are people who seek out fear. People who jump out of airplanes. People who free climb on and swing off of mountains.
No one chooses to parent a medically fragile child for the adrenaline high.
My son Zack has a rare genetic condition with a long, weird name you probably wouldn’t recognize. We call it GA1 for short. Here’s a link if you are one of those curious types. The main gist is that his body doesn’t properly digest protein. What this means for everyday life is that he follows an extremely strict low-protein diet.
Life with Zack
I thought I knew all about diets until I was handed this one. He has a low amount of protein he can eat every day. At 5 years old, he eats about 15 grams of protein per day. (That’s the amount of protein in two eggs and a slice of whole wheat bread.) So what does he eat? Fruits, vegetables, some carbs, and special low protein foods. We weigh, measure, estimate, calculate, and make it work. He drinks a metabolic formula that covers the rest of his nutrition and probably will for the rest of his life.
The real issue with GA1 is the danger for Zack when he gets sick. When any person get sick, especially fever or when we go without calories for a period of time, our bodies start to break down protein from our muscles. Normally this is a great thing God has designed into our bodies to keep us functioning. For Zack it can be so harmful or even deadly. This situation can lead to a metabolic crisis, which is similar to a stroke. Kids who have had a metabolic crisis usually need a wheelchair, a g-tube, and have many other complex issues.
When Zack was 11 months old, we first discovered he had GA1. At this point we were still his foster parents. Mike and I and his case worker went to the doctor appointment to learn about this illness. We knew the news was very, very bad, but we had no idea the complexities we were facing. The appointment took over 4 hours as the nurses, dietitian, and doctors explained the condition, the diet, and the emergency protocol to us.
The nurse explained illness with GA1 to us. They gave us an emergency letter we carry with Zack at all times so the Emergency Room team knows how to treat him when we get there. The illness is rare and we often know more about it than the doctors who are treating Zack. There are times in life when it’s fun to be in the know, but this is not one of them. We are not to wait in the waiting room when we get there, either. It’s too dangerous to wait.
At the initial appointment, I remember the nurse saying, “If Zack throws up once, you are on the phone with us. If he throws up twice, you are in the car on the way to the Emergency Room calling us on your cell phone.” I wanted to throw up hearing her talk about it. What toddler doesn’t throw up from time to time?
I felt like the bottom had dropped out of my entire life. In some ways it had.
I remember distinctly two conversations from those first few days. So much from that time in my life is hazy. I was in full-blown parental grief.
The first conversation was with Mike the night after we met with the doctors about Zack’s diagnosis. We knew at that point we would adopt him if we could, and adoption was looking likely given the way the case was moving with his birth parents. I looked at Mike and asked him, “Are you sure you want to go through with this? This is going to change the lives of our whole family, you know.”
Mike looked at me and said, “I want to adopt him. He’s our son. I can’t imagine not having him in our family.”
I said, “I’m in if you are.”
That was that.
The second conversation was in our kitchen a few days later. Our case worker from Denver County was sitting with me along with our case worker from Lutheran Family Services. Denver County case workers get a bum rap (and some deserve it), but we had some fantastic ones. She was a gem. We were talking about Zack’s case and his medical care. I started crying and couldn’t finish the conversation. (If you read this blog on a regular basis, you’ll notice I spend a good portion of my time crying.)
I loved her next words. She said, “Sara, you are giving Zack a gift by grieving this diagnosis. I worked with another family where the dad could not accept his son’s medical condition. He kept living in denial that his son was sick. He eventually lost his parental rights because he refused to get his son any medical care. Your grief shows me you love Zack and you know what a big deal this is. Your grief is a gift to him.”
Her care was a gift to me that day.
Let’s Talk About the Fear.
Now, let’s talk about the fear.
Every single time Zack gets sick, it sends jolts of panic through me.
I live with low-level fear about illness with Zack all the time. It’s a constant worry that never goes away.
Every parent carries fear. Letting your kids ride in a car brings risk. Sending them to school brings risk. This blasted metabolic illness just ramps up the fear rate by 1,000.
My other kids worry too. They come over to Zack with extra hugs and kisses and bottles of Gatorade. They adjust his sheets and ask me if he still has a fever. I want to promise them that he will be fine, but I can’t. They would know I’m lying anyway, and I don’t lie to my kids.
There’s this interesting phenomenon in the community of parents of kids with metabolic conditions. It’s probably a microcosm of parenting in general, but I’m not going to attempt researching it. (I’m proud enough of myself just for using the word “microcosm” considering the lack of sleep I’ve had over the last couple nights.)
There are parents who choose to try to prevent illness at all costs. In the case of GA1 the risk of metabolic crisis is most high from birth through age 6, although it technically continues on after that. These parents rarely leave their homes before their children are 6 years old. They homeschool. They don’t go to church. They don’t go out in the community, especially during the winter when the risk of germs is the greatest. They rarely interact with other children.
We’ve chosen to lean more to the other side of the parenting equation. Partly because Zack is the youngest of 5 kids, partly from Mike’s job as a pastor, and partly because of our personalities, we have decided to live more of a typical life. Zack went to preschool and then to school. We go to church and to the store. Especially when Zack was younger and the risk was highest, I cleaned the house more. We used a lot of hand sanitizer.
Overall, we followed the principle of living a mostly normal life, and when Zack got sick, we were on it quick as a flash, calling the doctor immediately. He was hospitalized 7 or 8 times the first couple years of his life. He has not had a metabolic crisis. We were blessed.
Did we make the right choices? I’m not here to say my choices are the right ones and someone else’s are less. We each live as we feel called. I read what the Bible says to me here:
“For God has not given us a spirit of fear, but of power and of love and of a sound mind.”
2 Timothy 1:7
I want my life to reflect power and love — not my love, and not my power. It’s a reflection of God’s love and God’s power. This gives me courage and takes away fear. This gives me a sound mind and a gentle yet strong sense of peace.
I guide my family believing in the One who gives us a spirit of power.
Then I pray like crazy. I remember God loves this child more than I do. When Zack is sleeping, I lay my hands on him and pray for him with hope.
My Hope Rock
One of the times Zack was in the hospital, a chaplain came in to visit with me. At that time we had not yet adopted Zack, and his diagnosis was relatively new. She brought with her a small basket of stones. Each had a word written on it, like “faith” or “friendship” or “peace.”
She asked me to choose a stone and what it meant to me. I chose one that said, “hope.” Through tears I told her how much I needed hope in that moment. Hope that Zack would be safe. Hope that we would be able to adopt him. Hope that God would protect Zack — and my heart — through it all.
I still have my hope rock.
I have hope, and hope does not disappoint.
“And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.”
Update 9/20/2016 — Zack is 7 years old, in 2nd grade, no metabolic crisis, and doing great! He has developmental delays and some behavior issues but we are unsure if these are related to GA1.
If you are a parent of a child with GA1, please see this post: Glutaric Acidemia Type 1: Hope and Help for Parents
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