Sunday, July 12, 2009

thinking about the future makes me cranky

the closer we get to milo's second birthday the more scared i become....scared about his progress, scared he is still not sitting, scared that he isn't even close to being able to sit, scared that he still cannot hold his head up on his own, or roll over, or clasp objects in his hands for longer than a minute. i am scared about the future, and what they say about turning two...if a child with cerebral palsy isn't sitting by two they probably won't walk...that is really, really scary to me.

if he were to turn two today then according to the chart he would be in the level five classification of cerebral palsy, the most severe....the most severe? i can't even wrap my head around it, because to me he is this bright, charming, funny little boy who's body won't let him move correctly...i know he is developmentally way behind, i don't like to be around other kids his age because i don't like to start thinking about the stuff he should be doing at this age, i don't like comparing...it makes me sad and i avoid it, and now i really don't like looking at the cp chart...

i hate that i am dreading his birthday, birthdays are supposed to be happy days you look forward to, and all i see is a deadline....milo needs to learn to roll over and have better head control by sept 27 or else he will be at the fifth level....as if it even worked that way, milo goes at his own pace and will roll over when he is ready. i try to stay positive...but sometimes it is really hard to keep a positive attitude when your just so pissed off at the whole situation, it's not fair...why milo? why anyone's child? i effing hate cerebral palsy.

but i love this guy....

13 comments:

caryanne said...

Jamie - you put it all out there in this post. I am awed by your honesty. But you're right, Milo will roll-over when he's ready and not before.

Thinking of you and your handsome boy,
Cary

jocalyn said...

oooh, I feel your pain. I won't look at that chart. Who cares? Milo will develop at his own pace. Just look at some of the blogs of kids who are a little older. They all started doing things when they were ready.

I don't like to be around other kids either. I still cringe when I see little girls Kendall's age running from their parents. My heart cracks each time.

That's why we have to get that play date re-scheduled! Milo will fit right in with Calleigh, Jude, and Kendall!

Hang in there.

S/K/O said...

oh, jamie. i can't tell you how much understand, so well, it i ache for you. owen turns two tomorrow. they stamped him with "class v" cp LONG ago. we've watched elliot, who is now 5 months old, totally surpass owen's physical abilities. elliot sits up, grasps objects, etc, etc. there are no magic words to make your pain go away or to make milo "better" but i want you to know that you are an amazing mama and milo, an amazing soul. please know you all are in our thoughts - i only wish we lived closer. i think we'd have a lot to laugh, cry and talk about.

S/K/O said...

sorry about that mucked up first sentence. you probably understood what i was trying to say. using my iphone, juggling two kids, trying to wake up on a cloudy, lazy sunday.

Holly said...

Ahhh..Jamie, I feel ya. Caleigh will be 2 on Aug. 15th and there is so much that she hasn't done, but there is so much that she has too.

I've talked with other moms of children with PVL and they say that unlike a bleed or stroke, everything takes even longer with PVL. Like crawling at 4 and walking at 7, etc. It will happen and don't give up hope just because some so called 'expert with a chart' tells you it won't.

We really do all need to get together. We have a great time and there is no judgment between all of us....no matter what our kids can do.

Don't forget to subtract prematurity and hospitalizations from that time table too. No kid makes it through that without some delay. So technically Milo has lots of extra time on his hands to figure it all out.

Stay positive and keep the Hope, I know you can...

Candace said...

Milo is soooo cute. It's nice to meet other parents in such an isolating world. My name is Candace and my daughter, Faith, has spastic diplegic cp, dxed at 5 months old. Faith was 20 months old before she sat on her own w/o anyone holding on to her. But she is 5 now and is "hopping" on her own. You can see her on my blog. Nice to meet you, may I add you to our fav. list?
http://livingwithfaith04.blogspot.com/

jamie said...

jocalyn & holly, we really, really do need to get together soon! stacy...i knew what you meant :) candace, of course you can! everyone, thanks, it always makes me feel better to know that there are other people out there that truly undersand.

Kelly said...

drake's therapist always talk about the value of intelligence and drive. if you are smart and motivated, like milo is, then you can lead a very full, interesting life even if your body is hard to control. i know thinking about the future can be tough to swallow, but the power of the brain is amazing, and like you mentioned, milo is charming and social and also smart! and that will get him a long way in life.

Lisa/Nanny said...

jamie
i know that this has been hard for you, and sad
but, milo, couldn't be a more blessed little boy to have a mom that loves him as much as you do
and, he will progress at his own pace, those charts are not always the end all, be all
you hang in there, you are doing an amazing, incredible job!!!
love, Lisa (Nanny)

Nicole said...

Mom, is right. He is SO lucky to have you. You have done and continue to do an amazing job. One I don't know I could handle. Can't wait to see you and to snuggle that little guy up. You are in my thoughts daily and I hope you know that as far away as we all are we are here for you for ANYTHING!

I love you.

Katy said...

You know, Barbara from therextras pointed out to me that that chart is about ten years old, which means that they had to study kids before that and then come up with the chart. There are so many more things that they do these days with kids like ours, so the chart is fine and all, but it's just a reference--not a commandment.

Keri said...

I have to say this.... piss on charts! After all, it's just a lousy piece of paper. Really, that's it. I completely understand that it's way simpler to say it, but pay no mind to the waste of a good tree. Seriously, those 'charts' are only good in attempts to drag you down. Those papers don't define Milo or any kiddo with cp for that matter.

Not so long ago, Logan was classified as a class 5 on that stupid gross motor classification system for cerebral palsy (i've not bothered to remember the correct name, no need). Supposedly he's not suppose to be able to do this and that and at that time, it was true. He wasn't able to do much, but Logan had to developed in his own time.

I have to say.... that whole spiel about a kid with cp unable to walk if not sitting up by age two... BS!!! Logan was no where close to sitting up at age two. In fact, he learned to sit up at 3 1/2 and has made huge strides since. I don't doubt that Logan will someday walk and talk, but only on his time and no one elses. It's a waiting game, and a crappy one to have to play.

Even though Logan has cp, I have to remember that he is globally developmentally delayed as well. He will develop on his terms, not according to the charts.

I don't mean to drag this out and be repetitious, but trying to stress the insignificance of charts. I've come to learn they aren't worth the heart ache.

BTW, I effin hate cerebral palsy too! With a passion.

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