What It's Like To Live With Anxiety When Your Child Has Chronic Conditions

by Jennifer McCue
Originally Published: 
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When your child first gets diagnosed with a life-altering condition, the world kind of spins out of control for a bit, especially when they’ve always been otherwise healthy. When you get two life-altering diagnoses in six months, you stop for a second or two and wonder what on earth is going on.

When you’re dealt these blows and you already live with anxiety and depression, you may wonder to yourself how you’re going to come out on the other side of this, how you’re going to find a way to function, how will you teach your child not to be a victim when you totally feel like one, and how you will do the least possible damage to the affected child and their sibling.

Welcome to my life. This is what 2016 was for me – a year of sickness, both physical and mental.

In April and May of that year, my younger son began experiencing bouts of sleep apnea – something we are well-versed in, as my husband has been sleeping with a c-pap for over a decade now. I was living in a constant sleep-deprived state, because I only dozed so that I would hear O and reposition him as necessary. I was also in grad school at night, doing research and reading and writing during the day while I also had a 4-year-old and 3-year-old running around the house.

In other words, it was a mayhem around here.

In the midst of this, my husband started seeing symptoms of type 1 diabetes in my older son. I found excuses for every symptom, not wanting to believe what my eyes were also seeing, because I could not remotely face that reality. He’s drinking more? It must be because he had a growth spurt and could finally reach the sink by himself, so he’s asserting his independence.

He’s wetting the bed all of a sudden? Every single night? It must be anxiety because I was so anxious over O’s condition. He’s eating like a bottomless pit? Well, look at how much energy he’s expending every day. (I also didn’t realize yet that his hundreds of laps around the floor plan of the house was abnormal, but thanks ADHD.)

The first week of June, just days after his third birthday, O had surgery to remove his tonsils and adenoids. I was a wreck, with fears of his throat bleeding, of the boys roughhousing and O having complications. Anxiety doesn’t care about what’s real, what’s actually going on. Anxiety preys on your irrational fears–and I was afraid of everything. The only good thing was that post-surgery, O’s sleep apnea disappeared almost immediately. His healing process was speedy and uneventful, too, thank the heavens. But…

Eleven days after O’s surgery, we had an incident with D at bedtime, where he’d asked for his 3,000th drink of the night, and I completely lost it, yelling at him to go to sleep. And then my son broke my heart and started sobbing. “Why Mommy? Why can’t I have a drink? I need a drink. What did I do wrong? Why can’t I have water? Mommy? I need water, Mommy.”

I will spare you the rest of it, but the following day was Saturday and we took an unannounced trip to the pediatrician, who saw us, looked at D, and after he’d tested D’s urine for ketones, turned the color of ash. Our life as we knew it was completely changed in a single moment – but that’s how it always changes, right? I can visualize it as if it were this morning.

Those first few months were an anxiety-fest. I was scared, terrified really. How could I have ignored the symptoms for so long? I knew better! What if he went low in his sleep? People die like this. How would I ever sleep again? How would we afford all this? How would I send him to school in September? Nobody could take care of him as well as I would! Was it going to happen to O also?

I’m talking severe sleep deprivation from waking every 2-3 hours to check on him. Not eating properly. Worrying about everything there was to worry about. Still taking classes, accepting an internship, and trying to keep cool on the outside so that nobody really knew just how much of a mess I was, because “fake it ’til ya make it,” amiright? Act like I’ve got it under control and eventually I might? If you laugh (however awkwardly) at everything, it might all turn out okay… or something like that.

Along comes October, and D gets an unofficial Asperger’s diagnosis, leading eventually to an autism diagnosis, with ADHD, sensory issues, and more. So, my beautiful perfect boy with type 1 diabetes is also autistic? What?

Rational me said, “Wow, this makes so much sense,” and “How do we know what help he will need?”

Anxious me beat myself up, again, for delaying a diagnosis, and wondering how we missed it, and asking so many “what if” questions.

All of this chaos resulted in my having a prolonged physical breakdown. It was awful for all of us. I had two severe allergic reactions in two months’ time. I’m talking head-to-toe rash, chills, exhaustion, inability to eat or focus… and the end result was that I found my way back into a therapist’s office, and she saved my life and my family and my relationships. With her help, I gained perspective, got medicated, and was able to pull myself together. She helped me find my self-worth, find faith in my abilities as a wife and mother, and rediscover my sense of humor, which makes all of our lives so much less stressful.

Is the fear still there? Well, yes. I’m not going to lie. But I don’t let it limit us, which is what’s important.

D is positively thriving despite having so many challenges. He’s the happiest kid who tells the worst jokes and, though he doesn’t like having diabetes, at 6 and a half, he is beginning to assert himself in terms of managing the diabetes. I wouldn’t trust him to be independent with it, at least not now, but we think – we hope – he will be able to care for himself independently in the future. That’s big.

O, on the other hand, is a super-star little brother, and we walk a fine line of teaching him about D’s issues without giving him responsibility over them. And there is no joke O won’t make; he will stand on his head on a scooter if he thinks it will get someone to laugh, and this causes me more anxiety. Laugh or cry, laugh or cry, right?

I live with my anxiety, and (mostly) function fairly well. We’re not victims, and we’re not raising victims. We work hard to ensure that, and to advocate for others in our shoes. In the meantime, we embrace the madness and laugh our way through it all as much as possible. Luckily for us, they are seriously funny little dudes. Lots of coffee, meds, and laughter – that’s what gets this mama through.

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