Friday, April 4, 2008

Warning: i'm venting here. you don't have to read this post if you don't want to.

very rough evening last night.

ed and i sat down with a couple people who still don't understand asher's stuff, and i explained his "issues" to them. i mean, i explained all of asher's issues. all of them. it took over an hour. we covered:
  • the basics of HLHS
  • congestive heart failure
  • the upcoming open heart surgery
  • the problems with the pulmonary veins, the Glenn and the PAs
  • kidneys
  • his immune system (or lack thereof)
  • his stomach, throat and GI tract
  • his reflux

basically, it was Everything You Wanted to Know About Asher But Were Too Afraid to Ask. my mom took the kids out, and we sat down and talked. i drew pictures (such as they were). these people have always looked away, distracted themselves (esp one of them) and never really listened when we talked about it all. last night, there was nothing to distract them. they had nothing else to look at or listen to other than me and Asher's wonky physiology. and it wasn't nice, either. i had to use phrases like "without warning" and "slow and painful" and "this is the last resort" and "he might not make it."

they cried.

and i think it was the most draining evening i've had in a llllllooooonnnnnnnggggggggg time.

it was the first time recently that i've had to face alol of asher's issues at once, too. the beauty of specialists is that they really only know their thing. i can spend all day with cardiology, listening to them talking quietly, trying to figure stuff out, and then giving bad news. but they only know their thing, so i'm only dealing with heart stuff. when we see nephrology, we're only dealing with the kidneys. with GI, it's only stomach. OT/SLP, only swallowing and development. my life, and asher's issues, become very compartmentalized, only thinking about one at a time, and not looking at how they fit together, and certainly never thinking about how very many ways asher could die in the next few weeks.

it was exhausting. i'm so tired this morning. on the other hand, this morning, asher is playful and happy. he has spent the last hour playing with blithe and bram and reading and getting into trouble and just being the sweetest toddler you've ever seen.

balance. that's what i need. yeah, it sucks, but he's cute, so i can deal. sorry for venting. i needed an outlet, i guess. talk to you later!

1 comment:

Annie said...

Can I cry too... {{{HUGS}}}