Things have been normal or something close to it at home for nearly a month. No difficult pregnancies, life-threatening illnesses, births, deaths or extended leaves from work. Just six people – half of them under the age of 3 – playing and laughing and eating and sometimes bickering and hardly sleeping. It’s been mostly glorious, the least eventful stretch my family has had in 3 years.
But now it’s time to pick a scab.
In Sept. 2010, my wife gave birth to 24-week twin girls, micropremies weighing 1 lb., 6 oz. each. Breley died two days later, absorbing the brunt of an in utero infection; Kailey survived, protected by her older sister.
Those kids, and so many others like them, are the inspirations behind Team Tiny Miracles. That’s the name we’ve given to the fundraiser we’ve started – rounding up friends, family and caring strangers annually to join us in the Sioux Falls Marathon/Half Marathon/Miracle 5K. This year – our third entry – the event will be held on Sept. 8. In conjunction with the race, we design and sell Team Tiny Miracles shirts at $20 a pop with $13 of that going to the endowment we have started at Children’s Miracle Network. The rest will cover the costs of the shirts. (We’re upping the ante on those, too, going with a lighter, more comfortable, vintage-style fabric in the hopes that people will wear them beyond race day.)
We began this endeavor with the hopes we could raise $10,000 – the cost of a full endowment – over 10 years. Incredibly, we have a shot to reach that goal this year. That means more help sooner for kids like Breley and Kailey.
Already since our last NICU stay (with our second set of twins – also premies, but not nearly as sick), there have been dramatic improvements – some of them specifically targeting brain bleeds, a major problem for Breley. That was one of the causes we spoke about when coming up with the idea for Team Tiny Miracles. To see it come to fruition was surreal.
The endowment will also provide help for kids like now 2-year-old Kailey – long-term patients and their families. She spent five months in the NICU and still eats through a g-tube. Obviously, having a child in the hospital and on the brink of death for an extended period can take an emotional, physical and financial toll on parents and siblings. CMN helps with that in a variety of ways such as purchasing medical equipment or covering gas money for commuters.
We were reminded of that this winter when Kailey spent a month in the hospital, time split between Sioux Falls and Minneapolis. She was on lifesupport for a week of that, her skinny little body pushed to the brink by human metapneumovirus, an often innocuous respiratory ailment. (Here’s a local TV story on her struggle.) That’s the thing about these fragile tykes – you can’t predict when things might turn.
And now? The only visible reminder of her narrow escape – the growing uncertainty on the face of her doctor clearly conveyed that – is a small scar on her upper right leg, leftover from a central line.
It’s astounding, really. And during that ordeal we were – for a second time – overwhelmed by support from people all over the country. That left us doubly determined to pay forward that generosity even though rehashing all of this can be unpleasant. Not that we are in danger of forgetting – reminders of Breley are abundant in our home. We even include her in our formal family pictures in the form of a small, diapered teddy bear she received in the NICU. It was a gift from CMN.
Here’s how you can help: Buy a shirt. Email your name and size to email@example.com. Sign up for the race – any distance – under the Team Tiny Miracles banner. Here’s the link. (The weather on race day has been incredible the last two years, for what that’s worth.) Or just send some positive thoughts/prayers in the direction of so many vulnerable little ones and their loved ones. Everything helps.
Thanks for considering. End sales pitch.