How My Son’s Chronic Illness Steals Holiday Joy From His Life

How My Son’s Chronic Illness Steals Holiday Joy From His Life July 5, 2018

Every summer, as a child, I looked forward to the 4th of July.  The day was filled with parades, food, fireworks, and carnival rides. I imagined parenting my child the same way. However, my son was born with multiple chronic illnesses, which altered all of our plans.

My parents use to pack us up and take us to my grandparent’s cabin an hour north of our home. My cousins and I would climb trees, ride tractors and three-wheelers, swim, waterski, and run our way through the long weekend.

When I became a parent, I was so excited to make memories like these with my child. I imagined a child swimming until they could no longer move. Images of watching my child jump for glee as they watched fireworks filled my mind.

My heart exploded, thinking about the happiness my child would experience.

Unfortunately, I haven’t been able to make a lot of memories associated with the 4th of July or any holiday for that matter.

My son has been fighting an uphill battle with numerous chronic and debilitating illnesses. Many of these illnesses prohibit us from engaging in activities frequently associated with these holidays.

The day before the 4th of July, instead of prepping for a day away at the lake, my son was sitting in an MRI machine having his brain scanned.

Sitting in the white and stark MRI room, I realized that his imaging would likely mean something was wrong with his brain. We’ve been fighting with his hydrocephalus for months.

He sat there quiet and still, as a Thomas the Train movie played into his goggles. I bit my fingernails and cuticles as my anxiety increased.

After we finished the MRI, we went to the clinic. As I suspected, he was having issues associated with his shunt.

We would need to change his setting, for the 4th time in as many months. Our neurosurgeon remained hopeful the new configuration would improve his symptoms.

We left the appointment, and I immediately that the next day would be spent at home. He would be stuck at home feeling miserable and sick.

The next day we sat in our home, he was irritable, cranky, and wanted to lay down. His nurses and I attempted to occupy him by doing crafts. However, nothing we did made him happy.

Our day was not how I had envisioned, but it was like so many holidays we have faced in the course of his life.

We have never visited Santa, seen the Easter bunny, participated in an egg hunt, gone Christmas caroling, attended a 4th of July Parade, seen fireworks, exchanged valentines with classmates, or celebrated Halloween beyond a knocking on a few doors.

As a family, we try our best to make the holidays fun for him. However, his experience is vastly different than other children around him.

As a mother, I will admit, my heart breaks every holiday that marks the calendar. My little boy should be able to enjoy being a child rather than spending his time inside imagining machines, hospitals, and clinics.

Noise makes his head hurt. Social situations overwhelm him. He has a feeding tube. Therefore, holiday treats are not something he participates in or enjoys.

The heat of summer prohibits him from being outside for any length of time. In the winter, cold and flu season keep him at home rather than attending holiday events.

My child that I love with my whole heart spends so much of his life home and away from the fun that is going on in the world.

As a mother, I worry that his childhood memories will be from his hospital stays rather than celebrating holidays.

I worry that he will grow up to be angry, filled with post-traumatic stress, and ill-equipped to manage the social demands of teens and adults.

So, Another holiday came and went, and my son was inside the home, crying in pain.

While the children around us were lighting off sparklers, eating cotton candy, and watching fireworks, we were inside watching movies.

None of this seems fair to me. As much as I try to make sense of why this is happening, I’ve never come up with a valid reason for his suffering.

My grief cripples and suffocates me each time we enter a holiday season, knowing that there will be a disappointment, sadness, and another day, he’s not able to enjoy his childhood.

My heart sinks, and I get depressed, knowing that as much as I try to make things fun for him, it’s never the fun he wants to be having.

He doesn’t want to be home, laying in bed, wincing in pain, and passing the time on his Ipad.

In my heart, I know he would much rather be outside, playing with other children, having fun, and making memories to last a lifetime.

Holidays as much as I try, have never been able to be a fun experience for my son. One day I hope he will be able to sustain loud noises, handle large crowds, and be able to taste the foods, so many of us enjoy.

Until then, we will try to find ways to keep him happy and thriving at home.

I wish his childhood weren’t spent feeling sick and was spent having fun.

My only consolation on the days I struggle with these feelings the most is knowing that other families are going through the same situation.

I know I can reach out to my friends who understand how isolating this world can be, and I can feel connected, knowing that we are all doing our best for our children.

In the depth of my soul, though, I wish none of us had to go through this pain.

I wish all children could enjoy each holiday and be filled with happiness and joy.

The reality is there are far too many children who don’t have that luxury.

*Katie Joy is a columnist and hosts Without A Crystal Ball on Patheos Non-Religious Channel. She writes articles on parenting, disability advocacy, debunking pseudoscience, atheism, and crimes against women and children.

She co-hosts the YouTube show, “The Smoking Nun,” with Kyle Curtis. The show airs weekly and tackles pseudoscience, current events, and crime stories.

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