When You Feel Helpless as Your Child Faces Severe Medical Issues

This is something I’ve thought about writing down a million times. I usually stop myself because I’m not sure I can get through the details. I usually try to make my posts fun and relatable, but the reality of my life feels like it is anything but relatable.

I assume that the general consensus is that being a parent is hard work. When you watch your child sleep at night, it really is like looking at a piece of your soul right before your eyes. You imagine the life they will have, you make plans for school, you try to teach them to make friends, to be fair, to help them hone and develop the skills that will allow them to be the kind of individual who can positively impact the world and those around them. All the while you have a front row seat to their happiness, as well as to their hardships. Watching your child struggle physically, emotionally, mentally and otherwise can be a painful and helpless feeling.

woman hugging newborn baby
Kasey and her son Robert as a newborn.

Before Robert was born, we knew there was a chance he would have some medical issues. We could not know how severe they would be until he was born. The seedlings of fear and worry set in early.

This month he turned 3. He is a phenomenal little boy. He is funny, clever, a great learner and the best little companion. He has also had three major surgeries (as well as many minor surgeries), countless infections, hospital admissions, therapy, doctor’s visits, sick days and has never eaten a piece of chocolate cake. He had a feeding tube placed when he was 1 year old and continues to rely on it 100 percent.

It is really difficult.

There are many, however brief, moments when I feel as though I have clarity. I can say to myself — and believe — that it is going to be OK. I can look around and feel blessed and gracious for the life we have. I can watch him play and not think about what his future holds. These are very precious to me. I hold on to them so dearly. I keep them in my pocket to grab on to whenever I forget. But sometimes I forget. And that’s OK.

For much of the past few years, I’ve felt as though I’m treading water. I’m in the middle of the vast ocean. There are storms that come and go, and all the while I’m desperately trying to keep my head above water. And I do. And it’s hard, but I do it. Some days I see a small island. I swim to it. I lay down and feel the extraordinary relief that comes with the realization of how exhausted I’ve been. It gives me hope, and I am revitalized to swim again.

I believe our lives are meant to try us — to bend, manipulate and work us into the best version of ourselves. This is an uncomfortable experience. If you were to ask me how my life has changed the most since having Robbie, I would say this:

Before Robbie, I was looking at life through a telescope. I would constantly think about my (me, me, me) future. Get to A to get to B to get to C. Far-reaching, but very narrow.

In loving and caring for Robbie, I’ve learned what it means to survive, emotionally and physically. I now feel like I can navigate life in the same way you would navigate a forest with a compass. I am aware of all directions, but I know that to continue heading north, I can only take a few steps at a time before I have to stop and re-examine. For me, this has proven to be a much more manageable and hopeful path.

I think if we let it, life can make us feel that everything is dire. I can’t believe that is how it is supposed to be. We are supposed to know happiness, to know joy, to laugh and to laugh often. The heavy challenges we bear may not disappear, may not become less important, but they can be lightened. And I believe they can be through an honest quest for joy.

So when you make it to your island, have a piña colada. There will be plenty of time to swim later.

woman smiling at blonde toddler boy sitting
Kasey and her son, Robert.

Follow this journey on So There’s That.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with (or with a loved one with) a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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