Minimizing Risk

This week, the cardiologist recommended that we all hunker in again, including keeping the kids home from school. With our daughter Ellie’s track record – three hospitalizations for pneumonia this summer alone – he thinks that the odds are not in her favor if she catches any respiratory virus and that she would likely need help from the hospital.

Our safety net, the children’s hospital, is full and they are understaffed and overwhelmed. COVID-19 cases are on the rise in Arkansas because of our low vaccination rate, and this summer of respiratory viruses has made things especially difficult.

I know what he is saying is true because the last time we were there – with a child who could not sustain life without oxygen support, an emergency by any standards – we still waited about 12 hours in the ER before we could be admitted. I saw the exhaustion on the faces of the staff and noticed the change in morale from when we had been inpatient before.

Last year at this time, we were all set to send our oldest son Jack to pre-K. We had to tell him that he couldn’t go because Ellie’s safety was taking priority. COVID was new and there weren’t a lot of answers for how a toddler with Down syndrome, heart disease and weak lungs would fare.

“I feel left out, Mama,” he has told me so many times since then. He sees other kids playing on the playground at schools when we drive by, and he desperately wants to go make friends.  

He asks that we drive by his new school every day. I took him to pick out a new backpack and lunchbox. He has a new pair of red running shoes that are fast and help him jump high. We have toured the school and met his principal. He feels ready to conquer kindergarten.

And now, again this year, I have to decide on whether or not I disappoint him.

I remember the day I learned the first vaccines were available. We were in the car and I heard it on the radio. I cried because it meant that we and the world could do our part to lessen the load on hospitals and we would finally be able to breathe a little easier. If the hospitals weren’t full anymore, we wouldn’t be afraid that Ellie would be turned away.

It’s like one of those dreams where you are trying to scream, but no noise will come out of your mouth. Nightmare is what most people call this, and I have them pretty often now that I have children. These nightmares always involve me witnessing something bad happening to my kids. I yell for help, but have no voice, eventually waking up drained and stressed, my throat hurting from trying to get someone to hear me.

I understand that it is impossible to know what life with a child who is medically fragile during a global pandemic is like unless you are actually living it. I also know there are a lot of people who are walking this same walk with me and feel the same way I do.

But, good grief, it feels lonely right now and it is becoming harder and harder for me to have tolerance for or faith in humanity. I am looking for the helpers, but the naysayers are yelling so loudly.  When it feels like so many are gambling and your baby is the one who will lose every time, it is hard to believe that there is enough good out there. This is not the person I want to be and this attitude is not one I want to pass on to my children.

“Minimize Her Risk” is the name of the game when it comes to Ellie. It is a constant, delicate balance of judgement calls that never have a clear answer and it began before she was born. The decisions are always made with a mix of science, gut and history, but the goal is to outrun the worst-case scenario. Guilt plays a huge part in the game because it is a card you must draw with every decision and it compounds, just growing bigger and bigger with every day.

I knew that one day minimizing her risk would probably become less about pros and cons for just her and more about weighing what is best for Jack versus Ellie versus Gus, and I feel like that day is here. Whose risk/benefit analysis comes first?

I took Jack to our family’s pediatrician. He just turned 5 years old and it was time for an annual checkup. We talked about this decision we have to make about letting Jack go to school, and it only underlined and highlighted that there is no answer.

“Is this just what parenting is? A series of opportunities to fail?” I asked him.

“There is no bad answer, here, Heather. I know that whatever you choose will be the best decision and we will be here to support you either way,” he said.

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3 Comments Add yours

  1. bosssybabe says:

    Heather, I just discovered your blog. While you and your family have a lot of heavy weight to bear, you also sound incredibly resilient. Your strength really shines through and gives me hope that anything I need to get through in my life should be a cakewalk! Thank you for sharing yourself with the world.

    Liked by 2 people

  2. It must be so hard. Everyone is older in our family, so we can do everything online. We don’t have to go out. Katie does online school and I work from home.

    Maybe I would have more opportunities if Katie were never born. But I am okay with it. Looking back over the past year, I wouldn’t do anything differently. If I have to sacrifice for her safety, it’s worth it. I love her and I would never want to put her in danger.

    Choosing between two children’s education and one child’s health and safety is not an easy choice. But in case it helps to hear, my brother and I are happy to wait it out to protect our sister. Her safety comes first. If I took an unnecessary risk and something awful happened to her, I’d spend the rest of my life wondering… I’m putting my life on hold a little and that’s okay with me.

    So that’s how it feels for me as a sister of someone with Down syndrome. Of course, I can’t speak for your kids and their feelings. You have to make all these little and big decisions and of course it’ll be tiring. I guess what I’m saying is that if you want to err on the side of caution, your kids might be more understanding, now or in the future.

    It’s a scary time. Keep doing your best.

    Liked by 1 person

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