Monday, September 29, 2008

the whole story

when milo was born six weeks early we were told that he would probably stay in the nicu for a couple of weeks so that he could get the whole "suck, swallow & breath" thing figured out...he had some respiratory distress during labor, but no one knew that he had any damage to his brain until months later when the seizures began (although there were signs that things were off, such as his super fussiness and feeding difficulties).

they discovered pvl when he had a cat scan at the emergency room....when they told me that milo had periventricular leukomalacia i of course had no idea what it was. they gave me a little write up about it and said to find a neurologist...then sent us on our way. on our way home from the hospital i read the piece of paper not knowing how big this news talked about a possibility of vision impairment, a possibility of cerebral palsy, a possibility of mental retardation...i immediately went into denial. i didn't want to know anything about pvl. i didn't look it up online, i didn't want to talk about it, i didn't want to think about it, i just wanted it to go away. milo was just a preemie and he was just behind but he would catch up and that's what i told myself for about a month and a half. milo's doctor at the time didn't seem too concerned about the pvl...and we couldn't get into see a neurologist for about two months, so it was pretty easy for me to just pretend like it wasnt happening.

then one night jesse was at work and milo was sleeping and i hesitantly started to look up information about pvl. it was like i opened the flood gates....i couldn't stop. i was pvl obsessed. it was very emotional...i was google searching and sobbing simultaneously. i was hit especially hard by the pvl yahoo i was reading the posts written by parents my denial was forever gone. and then i started to realize things that i had never allowed myself to realize before. i realized milo couldn't really see, and i realized that milo had cerebral palsy.

for weeks my free time was spent researching and crying. although it was alot easier being in denial milo needed me to advocate for him and so i did. i became pretty familiar with the other stages of grief...but as time went on i began to heal...and im still healing.

i have my bad days and moments where i begin to cry out of the blue. i have a hard time watching little boys run around and play, and i avoid looking at pictures of my friends kids on there myspace and facebook just still feels too bitter and i feel bad about not wanting to see my friends beautiful children who they are as proud of as i am of milo....but i cant help it, its how i feel. but my good days and my good moments far outweigh the bad ones. i adore milo. he is the love of my life...i am so proud of him constantly, and every time he does something new it is so exciting and we have so much fun together...especially now that hes starting to get past the super fussiness...and i'm finally at a place where instead of feeling sad for all the things that milo might not be able to do, i'm taking it day by day and celebrating what he can do and all of his accomplishments. the dust is settling.


Mommy07 said...

I can totally relate on the whole internet google obsession, and how unhealthy is can be.

I spent my entire maternity leave googling neonatal seizures and reading all the horribly depressing studies out there on them. Every bit of info was negative and I clung to those statistics and sunk into a deep depression. I even went as far as getting copies of Noah's abnormal EEG and trying to "decode" it from internet medical journals... I am a social worker not a doctor and finally had to come to this realization!!!

I am glad that the happiness is now outweighing the sadness and that you are entering a new, more enjoyable chapter in your life.

Jacolyn said...

I just found your blog through Caleigh's Corner. I too have a child with PVL and CP. I also live in Dallas. You can check us out out It gets better, I promise.

S/K/O said...

Time... it seems as though, although the tears and the pain never go away, time makes it all easier - less scary, more manageable. We've only been at it 14 months, so are by no means seasoned, but time has helped me so much. Be proud of Milo! My goodness, he will continue to delight, surprise you and certainly make you proud. Our kiddos, who have longs lists of things stacked against them, are so special. Their achievements are not always measured early on by words, steps... They are measured by their strength to beat the odds, one small step at a time. It can be hard to have the patience sometimes for such a process, but I think it teaches us to better parents and better people. Hang in there! You have many mamas who are "there" with you!

therextras said...

I can't speak from personal experience, but from knowing lots of moms. To read more encouraging words, stop by my place on Monday. Barbara