Extraordinary Life: A Mother’s Journey Through Chronic Illness

extraordinary life moms Moms are superheroes. All of them. I truly believe that the day you are entrusted with another life, be it through birth, adoption, or marriage, is the day you become a real superhero. There are so many unknowns, so many terrifying situations that arise, and we just plow through them. None of us are perfect, but somehow we manage to get it all done. You hear the stories about the moms who lift entire cars off of their children, moms who can hear their child crying from miles away when they’re in trouble, moms who find impossible strength when their child needs them to. I believe every single one of those stories to be true, because I know what it means to be a mom.

But there is a subsection of superhero moms that I believe deserve special recognition, a group I didn’t want to join, but found myself in, unexpectedly. Medical moms.

These are the moms whose children have chronic illnesses, or God forbid, terminal illnesses. I am so incredibly lucky not to fall into the second category, but I know mamas who do, and they far surpass Wonder Woman in my eyes. But today, I’m going to focus on the chronic illness moms, because that’s what I know and can speak to.

We knew long before we got an official diagnosis (or two or three…. medical moms know that where there is smoke, fire is close by) that something was wrong. What we didn’t know at the time was that our son would deal with his diagnoses for years to come at a minimum and quite possibly, for his entire life. At four years old, my son is my hero. It took us three of these past four years to get to the bottom of everything. Tests, hospitals, surgeries, blood draws and doctor appointments replaced any semblance of normal toddler years for him. And I was angry.

Every doctor’s appointment felt like torture we were inflicting on him and guilt colored every decision I made.

As a working mom, I often felt torn between needing to be at work and needing to be with him. I spent so much time taking off work to take him to appointments that I stopped having any time to truly just be with him at home and enjoy his babyhood with him.

Doctors go to school for years to learn all of the medical terms and to understand the ins and outs of the human body and the various processes it goes through… I learned these things in months as doctor after doctor poured information into my head that I had to somehow remember, not to mention the hours spent researching everything we were being told.

While I was making a point to learn about every possible facet of what my son was dealing with, I was also scheduling doctor appointments and therapy appointments, learning how to administer different medications and understand what each one did, teaching my babysitter what to look for, and texting her approximately every twenty minutes to check in. I became almost a machine- I could rattle off the spellings of each medication, the dosages, the side effects; I could hold ten upcoming appointment dates in my head and tell you what each one was for; and I could do it all while still maintaining my full time day job.

I stepped into my new role as a medical mom as I imagine most others do: completely unaware I was doing it.

The day I finally broke down was the day I made the decision to give into a feeding tube. Doctors had talked about it for months, but I fought it. I didn’t want to make the decision. I was scared. What if I was making the wrong decision? What if I was putting him through yet another surgery for no reason? What if everyone was wrong? Spoiler alert: they weren’t wrong. It was the right decision, and I know that now, over a year later.

But that day, the day I said yes to the tube, was the day I allowed myself to fall apart. I cried until I swore my head would explode. For three years, I had kept it together and filled my head with all of the information I could possibly find so that I didn’t have to address the feelings lurking there. But that day, I stood in the shower, sobbing where no one could hear me, and grieving heavily for the childhood he would never have, for the picture of motherhood that I felt had been shattered. Then I got out of the shower, dried myself off, and went back to my family and all of the responsibilities waiting for me.

Becoming a member of the medical moms group was never an honor I wanted; but I am honored nonetheless.

This journey has taught me strength I never knew I was capable of. It has taught me that things don’t have to be what we pictured them to be in order for them to be great. It has given me the opportunity to see that children are incredibly resilient and that we, as adults, have so much to learn from them. When I look through my son’s eyes, I see the world for what it is: wondrous and amazing. There is nothing he can’t do, nothing he can’t overcome… I’ve witnessed it. As a parent, that’s what we want, right? We want to know that our children will be ok, that they have the strength to rise above the obstacles in their lives. I am lucky, because at just four years old, I’ve seen him do all of this and more.

I won’t say it’s not still hard. Being a medical mom means feeling very alone most of the time. It means walking around with the weight of the world on your shoulders – or, at least, the weight of your child’s world. It means being consumed with “what-ifs” and making decisions you don’t feel qualified to make knowing that they will have very large repercussions for your child. You feel scared a lot of the time, and you continually grieve the loss of what you perceive as normalcy for both you and for your child, and truly, for your entire family. But it’s in all of that that the beauty lies.

It’s in the loss of ordinary that you gain the extraordinary.

I wish I could give him the world, I wish every day that I could make his life easier, that I could ease his little mind from the worries he shouldn’t have to have at such young age… but I wouldn’t change the strength it’s given him, the person it’s making him. He is my extraordinary little boy, and this is our extraordinary life.

For more essays on parenting, be sure to check out our entire Parent Life series.