The 'Blue Jell-O Days' I Experience as a Heart Mom

The support system that comes with being the parent of a heart warrior is a truly amazing thing to witness. When I found out about my son’s condition, I connected with people across the country on Facebook and Twitter who had been in my situation before and could give me advice. It’s single-handedly responsible for my sanity in the last few months of my pregnancy…when it was hard to not feel like the only person in the world who had ever given birth to a baby with health complications.

But all the sharing that comes with these close-knit communities also comes with a dose of sadness, and the fear that you’re glimpsing what may lie ahead.

A father asks for advice about the placement of a permanent G-tube for his son.

A mother of a child with heterotaxy posts the heartbreaking statement that her six-year-old son has taken his last breath.

A photo in the hallway of the cardiologist’s office shares a family picture, in which a family of three holds a photo of their departed fourth member.

I certainly cannot speak for any other parents out there, but each one of those is a like a punch in the gut and I tend to be on high alert for quite some time after.

There are some days where things feel almost normal. The days with games and giggles, tempers and tantrums, picky eating and a failure to nap. I live for those days.

As the parent of a child born with congenital heart defects, “normal” is an extraordinary feeling. It’s another milestone met. It’s the prize you get because your kid’s treatment went well. But then there are those days when you feel the weight of the burden you’ve been given. The days when, through no fault of your child, you can’t help but focus on that scar on his chest, the abnormal whoosh of his heartbeat when you pick him up. Every breath, every step is a reminder that something’s not quite right, and that things could turn south at any moment with no warning.

I call these days my “blue Jell-O days.”

One day shortly after we found out my son would soon be having his second open heart surgery, I heard my son fussing from my home office. He was with our in-home babysitter, and she had brought paints for him to make handprint art. He had apparently not been a happy camper about his hands being dirty. Many parents would probably not bat an eye at this discovery. Some might even be happy about it, thinking they’d have fewer mud pies to clean up down the road.

But as with everything else, my heart mom brain went into overdrive, immediately singling out that social media post I’d seen six months ago in which a heart family asked for advice for their school-aged child who was developmentally behind because of his poor health and multiple surgeries. I thought about a woman I know for whom everyday is a series of activities and therapies to improve the sensory skills of her four-year-old.

Is this the sign I feared would come? That something else is wrong with my kid? We have been so lucky that I find myself always waiting for the other shoe to drop.
So I did what perhaps any parent worried about the developmental skills of their toddler would do. I went to the store and purchased a box of blue raspberry Jell-O. I would make it, strip my son down to his diaper and let him go hog wild with the cake pan. He would be surprised, delighted and endlessly amused as he poked and squished and flung the stuff all over the place. I wasn’t wrong. He enjoyed the Jell-O, even though he preferred to prod it with a spoon and eat it rather than play with it.

The following day when I gave him another bowl as an after dinner treat, I was delighted when he plunged his hand into it, grabbed a handful and stuffed his face.
It was glorious. It was messy. And, for a second, it quelled all my fears about my kid having a sensory disorder — as if one incident could prove or disprove anything.

Clean-up was quite the adventure in itself. He had not only gotten it all over his hands and face; he had also dropped some in his lap, where it had promptly melted and dripped into his seat. The result was a mess of blue food coloring all over my son’s arms, legs and face that simply would not come off with soap and water. I joked to my husband that we’d be dealing with the food dye for a day or two and then thought nothing else of it.

Until 15 minutes later, when I was getting him ready for bed…the Jell-O long forgotten. As I pulled on his pajama shirt, blue fingertips reached through the sleeve toward me.

It felt like my stomach had done a summersault. Blue lips, fingers, and toes are one of the biggest red flags for anyone with a heart condition. It means that blood is not circulating properly, and the outcome can be very bad if not dealt with.

It took me about five solid seconds to realize that the Jell-O was responsible for my son’s blue hue, and that a trip to the emergency room was not imminent. But in those five seconds, I relived every surgery, procedure, hospitalization and worry that we had already been through. At the same time, I could visualize the ambulance ride, the oxygen masks, the doctors’ concerned faces and my son’s lifeless body. Even though my stomach returned to its normal place, my heart stopped racing and my breathing returned to normal, the images my cruel mind had imposed on me in those five seconds still have not left.

And until that blue dye finally washed completely away a couple of days later, I had moments of panic every time I glimpsed his way and saw blue. You see, I wasn’t really all that worried about my son having sensory issues. I was just worried. All the time. About everything. His dislike for touching gooey textures was just a place for me to place the anxiety I was already feeling.

For me, the “blue Jell-O days” come in clusters. I’ll have a few great days where things seem almost normal. Then I’ll go a week where every hiccup makes me worry about cardiac arrest. And the thing is, there’s nothing I can really do about it. Anti-anxiety medications won’t fix my son’s anatomy. You can only trick your brain so much with therapy. To a certain extent, you kind of just have to learn to live with it and find a way to mitigate the triggers while remaining vigilant because, of course, your anxiety is justified. It’s my job to worry about my child because the moment I stop worrying is the moment something bad really happens. At least, that’s how it feels.

OK, maybe it’s time to give therapy another shot. In the meantime, I think we’ll stick to strawberry Jell-O.