Thursday, October 30, 2014

Preemie Power

Steve and I recently worked to create a superhero story of JAM's life for the annual Hand to Hold Preemie Power contest. I'll post it here when the contest is over (tomorrow) but for now, go and check it out here:

Do my words seem too light-hearted? Do I seem ignorant of the heroic feats he has suffered? Yes and yes, which is likely why I won't win the contest. But these words are the ones I want to leave him - the way I want him to recreate his preemie past. He can be proud of his scars, and the pain of them need not scar him any longer. Again, read our recreation here.

Monday, October 6, 2014

Post-NICU rollercoaster - A How-To

Hand to Hold just published a piece on surviving the post-NICU rollercoaster.

I wrote it. So if you want to see what advice I'd give on surviving all the medical complexities that can come AFTER the NICU, read here

P.S. If I haven't said it before --  I think "NICU rollercoaster" is a terrible term. Read the post to see why, and to see my alternative analogy.

I've started a one-woman campaign to get the nurses to stop saying "It's just all a part of the roller-coaster ride" and get them to be a bit more honest. "Yep, it feels like you're being jerked around. Because you are. It's hard. Just think of it like you're a giant yo-yo. See, isn't that fun? Oh, it's just disorienting and kind of mean? Yeah. That's the NICU."  A bit of honesty. The campaign's not working, but I have had small victories. Like two years ago when I got the nurses to stop using the roller-coaster analogy on me for a good two weeks. I think a wise NICU nurse wrote it in my charts. "NO roller-coaster analogies! TRUST me!"  Ranting here is just frosting on that cake.

Thursday, October 2, 2014

The Blessing of Terrible Twos

Tonight, in the midst of a normal two-year-old meltdown (we were feeding him too slowly), the following came out of Steve's mouth:

"Jonathan, it sure would be nice if while you're the SIZE of a ONE year old, you'd ACT like a one year old.  And then, once you're the size of a TWO year old, you'll look around and say, 'well, I'm THREE now, so I'll just act like a three year old.'"

It is very very good to see JAM getting upset about preferences, like the absence of favorite toys, or the fact that "HIS" spot on his parent's lap is occupied by his sister -- and NOT crying just because of pain or exhaustion or hunger.

When he was intubated in the NICU, we longed to hear him cry, to hear him tell us how he felt.

When he was lethargic from failure to thrive, we were glad when he'd cry out and tell us he was upset. It seemed like it took so much for him to complain, and we wanted to be there for him.

So while Steve jokes that it'd be nice if Jonathan would skip the "Terrible Twos," and while sometimes I wish that he'd wait until I'd had at least one cup of coffee before he began his morning meltdown, we are delighted to see him complain.

It's good to have a kid that's healthy and happy enough to have a temper-tantrum. 

It's good for us to cry out and mourn. It's when we do so that we are comforted.