Living Dangerously: Cringe-worthy moments in the life and times of a heart mom

Margaret King is a talented writer who volunteers to cover a variety of topics for the Pediatric Congenital Heart Association. We are so thankful for her, as we are of all our volunteers. Lend your own talent to make a difference, volunteer with us today!

Being a heart parent requires leaps of faith every day. All parents walk the balance between protecting their children and allowing them to experience the outer world. Some days pass relatively smoothly, whereas others require a great deal of restraint. On those tougher days, I often find myself inwardly cringing, while outwardly keeping a smile on my face because my son is having such a great time being a “normal kid.” Here are unadulterated snapshots of some of my most mortifying heart mom moments in all their cringe-worthy humor — and thank you to my family for agreeing to let me share them!

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Did a little spit, dirt, and hair ever hurt anyone?

All children go through a phase of picking things up off the ground and putting them in their mouths. As heart parents, the importance of keeping our children as healthy as possible is drilled into us. A simple virus can set our heart kids back weeks, if not more, and other contagious illnesses can have serious health consequences for our children. Yet, we also know that our children need to explore their world, and build up their immune system like any other child. And so, I resolved not to freak out when Kieran put his mouth on the handlebar of a shopping cart, or chewed on the edge of a grocery store counter during checkout. But the biggest cringe-worthy moment I experienced in this department was when my son picked up someone’s discarded, half-eaten lollipop from the sidewalk, decided it was a serendipitous find, and before I could react, stuck it in his own mouth. Luckily, his own horror matched mine when he found the texture gritty, and pulling it out of his mouth to inspect it, found it was covered in dirt and strands of hair. “We could bring it home and wash it off,” he suggested hopefully, before I convinced him to chuck it as far away from human civilization as possible.

Clean Freak/Obsessive Mom

Do a lot of heart parents appear obsessive much to their social circle? No, not us (cue the sarcastic font)! When Kieran started kindergarten, I grilled his teacher about the availability of hand sanitizer, hand wipes, and disinfecting wipes in the classroom.

“Do you need me to come in and wipe down tables and toys?” I inquired hopefully. I was told that really wasn’t necessary, as the school custodian took care of cleaning the classroom, but that they would be more than happy to let me provide hand and disinfecting wipes.

I ran to the local big box store within ten minutes and filled my cart with industrial-sized tubs of cleaning wipes, and dropped them off that day with a note to let me know when they needed more. They must have lasted a long time, because I never got a request for more. Then again…maybe I scared them a bit with my apparent germophobia?

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85-year old kindergartner

My son has a cyanotic heart defect, which means his blood is deprived of full amounts of oxygen. One result of cyanosis is getting cold easily, and for most of the year (especially in spring, when others are perhaps overeager to cast off heavier clothes), my son dresses as if it’s 10-20 degrees colder than it really is. In March and April, he will be bundled up and beg to wear long underwear, a winter coat, and woolen hat when other kids his age are trying to get away with shorts or sandals. On a couple occasions, other moms have even peered at us and pointed out, as I’m wrapping layer after layer onto my son, “it’s really not that cold out.” Yes, well, tell that to my son while he’s screeching over a waft of fresh air from a cracked-open window–and tell that to my dear 85-year old Grandmother, while you’re at it!

Anti-Social Events

Social events have often required some degree of internal negotiation and planning for us. Whether its considering the weather (how hot it is outside, the risk of contagious illness during cold and flu season), parking issues (how far our son would have to walk for an event – festivals and professional sporting events are especially problematic), social concerns (how understanding friends and family are of my child’s limitations), or a myriad of other factors that run like a litany through our minds, sometimes I worry we come off as anti-social.

When my son was on Coumadin, we had the added concern of keeping our extremely active but uncoordinated toddler from major falls and head bumps. I recall the summer of his Fontan operation, the third of the 3-stage open-heart surgeries for his heart defect, when we were still supposed to keep him from doing heavy physical activities. His sternum was still healing, and the Coumadin left him prone to serious bruising. We were invited to a nearby church picnic, and as this church had been very supportive during our hospital stay, we wanted to go to say thank you to as many people as we possibly could. We also thought it would be a nice, family-friendly, safe atmosphere for Kieran to have some summer fun.

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When we got there, however, I knew we were in for big trouble. There was a large bounce house at the picnic, swarming with kids who were at least three times Kieran’s size. The larger kids were monopolizing the bounce house, and I watched with sinking dread as first one, then another small child emerged sobbing from the bounce house. Kieran saw the bounce house, and was overjoyed. The poor kid, cooped up in a hospital bed and then at home for much of the summer, must have thought he had hit the jackpot!

“Oh, no,” I said. “No way. NO. WAY!”

Cue total meltdown at the church family picnic, and the resultant heads turning with their eyes upon me and my husband, who were trying to calm and reason with our post-surgical young son.

We let him go in for “two minutes,” but unsurprisingly, he wouldn’t come out after a couple minutes of rough, wild body-slamming. I watched as he bellyflopped for the second time on his newly-stitched sternum, and imagined what cardiology might be saying to me right now. I watched further as 12 year-old kids shot through the air like ballistic missiles, narrowly missing my son.

“Get him!!! Go in there!!!” I hissed at my husband, who bravely entered the fray and dragged our son out.

Cue second meltdown.

In the end, we left after 20 minutes with a screaming child, hanging our heads as if we were the meanest parents in the world.

Epic Fail

However, the cringe-worthy moment that stands out the most involves our pre-op instructions before the Fontan, our son’s third open-heart surgery. Kieran’s Fontan was scheduled for a Monday, which meant that our pre-op day was the Friday beforehand. After a long day of appointments, meetings, and blood draws, our son was given “blood bands,” which were hospital ID bracelets that prepared him for surgical intake and patient identification. We were given strict instructions not to lose the blood bands or let them come off at any time during the weekend. Of all the instructions we were given that day, other than the NPO guidelines (ie, no food by mouth), the blood band instructions were the most important. “If you lose them, we’ll have to reschedule the surgery and do the lab work all over again,” we were told. No one wanted that, especially Kieran, who can name about 1,000 things he’d rather do than get blood draws.

However, we quickly learned that it wasn’t so easy to keep loose-fitting, plastic ID bracelets on a 3-year old boy. Not only did they keep slipping off, but the fact that it was finally summer in WI, and the fact that we weren’t certain how much of the summer our son would be able to enjoy, made us give in to his request to play with his water table at his grandparents’ house over the weekend. Surely there could be no harm in that, right?

My well-meaning parents sprayed sunscreen on my son, and he happily went over to the water table and splashed around. It wasn’t until later that we realized the combination of spray-on sunscreen and water had made all the writing on the blood band bracelets slide right off. Instead of identification bands, our son now had two completely white plastic bracelets that barely stayed on his arms.

We crossed our fingers and hoped for the best. On Monday morning, we sheepishly reported to surgery, hoping no one would notice, but right before the first oral sedative was administered, the nurse peered at the blood bands in consternation. We knew the gig was up, and confessed everything.

“Oh, no,” she muttered. “Oh, dear.”

One of the blood bands was completely illegible, and the other had only the faintest outlines of the print that once was. As she squinted, we waited nervously, afraid that after all this, the surgery would have to be rescheduled and the painful, traumatic blood draws redone. Finally, the nurse said she was able to make out some of the original print on the bracelet, and Kieran had his Fontan surgery as planned.

And this still remains … my biggest cringe-worthy heart parent moment yet.


Margaret King bioMargaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.