As heart families we connect over the internet, normally through our blogs, sometimes on Facebook, and occasionally in person if the family happens to have the same medical team as you do. So technically, many of us have never actually met, we don't know the ins and outs of one another's lives or who's best friends with whom and so forth. But we do know things about each other better than some or most of our family members, we hear the words PICU, Norwood, TOF, CHD and we know that we're related whether by blood or not. As families of the heart community, we share our own language and celebrate our victories and really weather our losses.
This morning I feel like a little bit of me is in multiple places of the country. In Boston Brooklyn is struggling after some complications during her Glenn and I've been following her blog over the last couple of days trying to stay up to date with her progress and now fight for life.
Here at home we have a little buddy struggling after his Fontan. His story one of the very first ones that I read while I was still pregnant with Liv - even a little famous since he was featured in the hospital newsletter at just a few weeks old rocking an "Ilbawi Alumni" onesie. Now I'm checking his mom's Facebook wall to get status updates hoping that his kidneys will perk back up and he'll be able to diurese (pee) on his own.
Last night Liv had a bad dream of some sort and woke up just as I was getting into bed and normally I would have huffed and puffed about trying to get a few hours of sleep before heading into work but we sat in the glider together and she tried relax and I loved it. Sure, it was about 90 degrees outside and AC can only do so much with a heavy sleepy little girl on your shoulder, but I'd rather be sleep deprived any day of the week than the alternative. Olivia's fellow heart warriors Travis, Wyatt and Charli are sort of the three musketeers now that give me a gut check about life from time to time. I think whenever I'm losing perspective one of those three little angels pulls a shenanigan to remind me again of what's really important.