Monday, August 15, 2016

And on and on and on and on and...

So far this year, although cardiology discharged us, we've had the saga of Acorn randomly passing out (apparently it's not epilepsy, the reigning theory is vaso-vagal weirdness), Leaf's hives from hell that lasted a month the first time, and then came back 3 or 4 more times for a few days at a time, Hand Foot and Mouth disease (resulting in a febrile seizure for Leaf), and Leaf falling down the stairs and cutting open her cheek bone.

That last one is killing me - it's not healing nicely, even after 6 hours in the ER to get it stitched up (they wanted to be sure her skull and brain were intact, and there were 3 pediatric trauma calls after we got there, and at least 1 just 20 minutes before us). In fact, the cut is still wide and gappy a week later, after it took us 2 days to get the scabs melted enough to get the stitches out. The pediatrician suggested taking her back to the ER so they could drug her (again) to get the sutures out, but we were not real keen on yet another visit.

As if 2 ER visits in one weekend wasn't enough trauma for all of us. That's actually a new record.....shortest time between ER visits.  Even RSV with 2 complex kids couldn't manage that.

People keep saying it's not a big deal, but the truth is, it's a huge deal. Of all her scars, this is one she can't easily cover. This is one that will be in every photograph for the foreseeable future. "If it bothers her" seems like a senseless thing to say, because of all the scars, this is the one people are going to ask about.

People comment on how beautiful she is. And I can see that coming to a screeching halt when she turns and they see this gash. Being cute has gotten my kids a lot further than they would otherwise get, because people respond to cute, and want to be near and help cute.

And even if we did take her to a plastic surgeon.....that's a whole nother round of trauma. More doctors, more surgery, more hospitals....

This never-ending cycle is exhausting.

Monday, May 2, 2016

Mom in the Middle

I know I said I was going to write more. Follow-through has not been my strong point lately.

There's a post over on The Mighty about being the mom in the middle - about not quite fitting into various parenting categories.

I find, these days, that there are so many middles to be in the middle of. 

I'm no longer a 'medically fragile' mom...but we're still more complicated, medically, than most kids. 

I'm now officially an 'autism' mom....but actually don't identify with the perspectives of many vocal autism parents. 

I'm a cerebral palsy mom....but my kids walk and eat and run and climb. 

I've been a heart mom...but everyone was discharged from cardiology in February, for good, with totally normal hearts.

I sometimes think that we're too busy drawing lines....and forgetting to treat each other as moms, each of whom has challenges - some big, some little, but all important....

And I wish that we'd all think about that more often. Every mom is important. Every child is important. One's challenges may be bigger than another....but a small challenge can need just as much support from our communities as a big one, depending on the circumstances.