“All three of your children are just beautiful,” complimented a family friend over the brunch table at a party.
“Thank you so much!” I respond in as humble a way as possible. “We like them a lot.”
“Now, which one is the sick one?” she questions. Immediately, my moment of mom glory is abolished. I feel anxiety twist my stomach, but I keep a grin plastered across my face. It hides the dread I feel when discussing my girls’ health with someone who, while he/she may have the best intentions, asks insensitive questions, makes unwittingly offensive remarks, or just sticks her foot so far into her respective mouth that she is tickling her tonsils with her toes.
“Well, both girls have Long QT Syndrome and bradycardia,” I inform her.
“BOTH girls have it? Oh my God, that must be so horrible!” she proclaims.
Actually, Lady, my daughters are awesome, and I am grateful to have them. They do not make my life horrible, thank you very much. Yes, it is scary, and I am sometimes horribly anxious, but I don’t regret my daughters.
“Now, what is it again? Long…something with their hearts, rights? What does it do to them?” she inquires. We’re surrounded by family, friends, acquaintances… and our three children, ages 5, 3, and 7 months. How do I explain this complicated health issue concisely and without horrifying everyone in the room, including my children?
I blurt my standard response: “Long QT syndrome is a Sudden Arrhythmia Death Syndrome (btw, we have about the worst acronym ever for a family of syndromes – SADS). The QT measurement is a part of the wave on an ECG.” On cue, my husband rolls up the sleeve of his shirt and displays our visual aid, the tattoo he had done to honor our Cecily. It incorporates a section from one of her first ECGS, taken when she was a newborn. “In people with Long QT, this measurement can be too long and the heart’s rhythm compromised. If adrenalin were to rush our hearts, it could cause a chaotic rate that, if it continues for long, could cause sudden death.” At this point, every eye and every ear in the room is focused on us. I can only guess at the dark images being concocted in their heads.
“But there has to be some sort of cure… some treatment… right? I mean, how can you live like that, just…never knowing?” she pleads.
Don’t you think that if there were a cure or a treatment, something to protect them, that we would give it to them immediately? That we would fight tooth and nail to give it to them?
“Most people with Long QT can take beta blockers for protection from adrenaline, but my girls, because they are also bradycardic…” Curious looks all around. “They have slow heart rates.” Understanding nods, as if they’ve always known the definition of bradycardia. “Because the meds would slow their already slow heart rates, the girls can’t take them. So, we carry AEDs (Automatic External Defibrillators) with us, in case one of them arrests.”
“That must be so hard. So, they are completely unprotected? You must be just terrified!”
Well, yes, I am. Thank you so much for reminding me.
“We see the best pediatric electrophysiologist in the country. They’re receiving great care,” I remind myself aloud.
At this point I am so desperate to escape this literal pity party, I may just force a fart and claim that the baby has a dirty diaper.
“You know, I think I heard a story about a girl with that Long QT on the news…Yes, I did. She was swimming in the state championships and, just as she won the race, she dropped dead in the pool,” she stares at me with a wide grin, as if she’s just made a great revelation. “I thought of you when I heard that.”
Seriously? What the mother-of-hell am I supposed to say in response to that? Ok, calm down. What she was attempting to communicate is, “I know that your family is dealing with a difficult situation, and I want to acknowledge that struggle.” Epic fail, lady.
“Uh…Thank you.” I nervously reply.
“I have this friend-of-a-friend whose daughter was born with a heart condition. Poor baby spent six months in the NICU. Died never having gone home. I can connect you with them?”
Just what I want to do, become personally entangled with the grieving mother of a child who has died so that I can more vividly imagine my own children similarly dying a tragic death… Alright, reframe this offer. She’s trying to help. Best of intentions.
“Thank you, but we plan on our daughters living long lives. If, God forbid, the worst were to happen, we might, then, want to connect with that family,” I say gently.
“Oh… oh, of course. I’m sorry. I’m sure they’ll both be just fine. They’ll probably grow out of it,” she reassures me.
I wish, with every ounce of mommy love in my heart, that this would be true. And, while there is a good chance that my girls will be fine, they will not grow out of it. But I get it. It’s awkward talking to a mom about the life threatening conditions from which her kids “suffer”. What I wish she’d asked me: “How are you all?” or “How’s your family?” or “How are your girls?” These sentiments are a lovely way to tell us that you are thinking of us, that you care about our children’s welfare. And, those are the kindest and best of intentions realized.