Wednesday, June 13, 2012

Catch Up By Two?

I hear it all the time, the mantra, "catch up by 2." I'm sure it's in the preemie bible somewhere. It's one of those phrases you cling to as you watch your child struggle to reach milestones that come naturally to typical kids. It also has the tendency to become a sore spot.

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

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Becky Price said...

I have said it before, you AMAZE me! I love this post! I am so glad I found your blog when Bella was born. I agree that there is preemie and then there is micro preemie and there is a huge difference between the two. Go Jack!

gemgemmum said...

Looks like Jack is doing brilliantly,what an amazing wee boy!
Catch up by 2 is a frustrating to hear! My little girl was 650g and born at 28+2. Was she magically going to sprout in weight and height overnight at 2.grrrr,a few friends have said it and I just grit my teeth. She is doing brilliantly and was 2 in May and we have learned she will do everything in her own time and only when she is ready.

Mr. and Mrs. Bouchard ♥ said...

I couldn't agree more! Micro preemies are definitely in a league of their own, and I really dislike the comparisons that are made with later term babies. The same thing was drilled into our heads during our NICU stay, and it did help give me hope that one day things wouldn't be so difficult for Bella. But now that we are at 14 mos, I know what a load that was. But I am okay with that, and I know that Bella is the boss...and she will get there on her own time and in her own way. Love this post! Jack has accomplished so much in his little life, and brought so much joy to your family! He is the definition of a miracle!

Anonymous said...

Thank you, I really needed this today. Today we met a little boy at the local bookstore. He was 2 days older than my daughter but was full term. Normally I try my very best not to compare my daughter to other children, but the differences between the two were very obvious. Your blog reminded me that she will do things on "Abby time" and the "Abby way". Thank you for sharing Jack's story, he's truly an inspiration.

Michelle Beebe said...

I think way too much focus and attention is put on achieving "accepted" benchmarks for all children, especially those with special needs. Each child is unique and develops at their own individual pace, and needs to be allowed that freedom without pressure and judgement. We all want our children to be their own person, so I really don't understand wanting them to be all the same in their development.

Brandi said...

I love that, "follow no one's timeline but his own." Perfectly said!

Julia said...

I read your post as I was getting ready to feed Colin in the car with help of my hubby. We are currently out of state on vacation and packing for a special needs kid is tough!!! Packed suringes and extra mic key kit and extra of everything!! Second day of vacation he pulled the tube out!! Fun!! I totally don't think that micro preemies catch up by two.. Like you said, brain bleeds, g tubes and all the other surgeries and infections.... I don't think it really applies!!! Maybe by 3 and even then!!! Who knows!!!!!

Chelsea said...

Very moving ... You are a truly inspirational mother

ClaraW said...

Our hospital acknowledged the general "catch up by 2" thing, but they actually told us that for every month our daughter was born early, they give her a year to catch up. For her, that's 3, but for Jack that's almost 4 1/2. BUT you're totally right when you say that even that doesn't really count when it comes to brain bleeds and complications. I think all of it is really helpful to hear when you're in the NICU and need some light at the end of the tunnel, but it doesn't take long to figure out that it may not apply once you're out in the real world of raising your micropreemie. Jack is a miracle in every sense of the word, but even miracles are hard work! But based on your blog, he must be worth every minute of it!