The more time I spend in preemie land, the more I find this phrase to be utterly bogus. At least in micro preemie land. I am convinced that this phrase was made up by someone looking at little ones born at least above 32 weeks gestation. And certainly those without brain bleeds or other complications. Same rules don't apply to us.
As if you can magically, on the day of your 2nd birthday, outgrow your micro preemie beginnings.
As if by the age of 2, you will forget that your child spent his first four months in a hospital, had 8 surgeries, and life now revolves around feeding tubes, therapy, and doctors appointments. That, my friends, is real life two years after the NICU.
I don't want this to sound bitter... on the contrary. I am fully aware of the amazing miracle that Jack's life is. I am fully aware of how he has beaten his 2% chance (or whatever) of survival odds. Yes, I know all of this. But yesterday, as Jack was struggling with his migraine, I was reminded that for our precious boy, prematurity might be something he never grows out of.
Even on good days, when Jack is miraculously walking all over the house as happy as can be, I am reminded that catch up by 2 just does not apply. Take the morning routine: to get Jack fed, tubed some water, dressed, and his braces on, well, it's quite the feat. And leaving the house and getting anywhere? Add those extra minutes of packing our "leaving the house bag" (containing emergency g-tube kit, food, feeding tube, syringes, extra supplies) and it's amazing we show up anywhere!
Sure, there are certain things that are way easier. Jack no longer requires oxygen. He is eating. We have narrowed down his therapy schedule to twice a week. I'm convinced that more than half the battle is just getting used to navigating this crazy world of special needs parenting. Of growing into the role (or maybe being pushed in and having no other choice but to grow?). Of finding a good support system and fellow mama's that have been there or are going to be there with you through it. There's a whole lot of joy in that.
What I'm really convinced of? Catch up by 2 doesn't even matter. If I've learned anything, it's that Jack follows no one's timeline but his own. I have learned to let it be. Ahh... the weight of that one choice is truly liberating.
|feeling much better today|