What Parenting my Chronically Ill Child Taught Me About Choosing Joy

I am often told things like, “I love that you are always smiling, even though you have so much on your plate,” or “I admire how happy you are despite your own demands.”

If you are new to my blog, let me give you a little background information. *Feel free to skip ahead if you already know David’s story.* My son, David (now 9 years old), was diagnosed with a rare form of epilepsy (FIRES) when he was 6. Since then, he has been put into several medically induced comas, endured collapsed lungs while coming out of the comas, and gone through drug withdrawals due to said comas as well as high doses of medication. Since he’s been home, we’ve been on and off multiple anti-seizure medications trying to find the right cocktail of drugs. In David’s case, we need seizure control without the behavioral and cognitive side effects of the medication. So far we’ve achieved seizure control (minus the occasional seizure he gets from contracting any sort of school-yard virus like the common cold), but unfortunately, due to the high doses of medication he’s on, we still have some unwanted behavioral and cognitive side effects. For David, he has a really hard time controlling and moving past his emotions, and because most of his seizures start in the frontal lobe, reading and comprehension are adversely affected. He’s been in and out of the hospital more times than I can count, and recently had surgery to help control the seizures.

Now you have the past two and a half years of my life (and his) in a nutshell.

The thing is that, I’m not always happy. But I do choose to have joy.

The days that David has a perfectly amazing day are few and far between. Yes, sometimes they do happen. Like the day a couple of weeks ago when David had an awesome attitude AND was participating in class. I was proud of him, his teacher was proud of him, and his classmates were even proud of him. Obviously, I hoped the awesome-day streak would continue, but it was important for me to acknowledge that it might not, and be thankful for the day that did happen. 

When joyful moments do happen, cling to them. Remember them. Recall and retell them often.

The most important thing though, is to realize that joyful moments don’t always happen organically.

Bad days are a given. Sometimes we even have bad weeks. But if we let it, a bad week can turn into a bad two weeks. Instead of allowing THAT to happen, sometimes we need to set the spark of joy ourselves. In our case, we will have a family game night with ice cream, make homemade cookies, or maybe go to the movies. Anything that will lift our spirits after the day, or even week we’ve had. Often times, that spark of joy is just a choice away.

It’s been a little over two years since David’s diagnosis. Last year, at his one year anniversary, I was very emotional. I couldn’t believe that we were still living this nightmare. I had a hard time accepting that every day would be challenging. I was redefining my role as David’s mom, as I was still new to the “parenting a chronically ill child” thing. But this year, my husband and I decided to do something different. Instead of letting the looming date get us down, we chose to throw a party and celebrate! We celebrated David’s life, the friends and family who have walked this journey with us, and how far God has brought us. We enjoyed the celebration so much, that we forgot to take pictures! I only have pre-party photos.

Y’all, choosing joy isn’t always the easiest decision, but the results sure makes life easier.

I’ll leave you with this passage from Romans 15:13- May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.