rock-proofed ?

[Guest guest]

>===== Original Message From ccrosby <ccrosby@...>

=====

I appreciate reading the many thoughtful responses on the topic of having

a child with a disability, a difference in the family. For me, it is always a

mix of feelings. There are the highs and there are the lows and I struggles

to stay somewhere in the middle, balanced. Some of what I have to say

you might not want to put in your book, but I think maybe the feelings are

realistic.

> Deep down I know that I will never

>get over>the pvl, the cp. When I heard the diagnosis, it felt like watching

those planes hitting those towers, one by one. I replayed the words over

and over again and saw my whole life crumple right in front of me.

Some say it gets easier but at times I just don't believe

>that. The emotional issues that do not go away entirely. I am

>lucky because my son Isaiah, (20 months) while he had tremendous

functional

>deficits, he is a straightforward baby and easy to take care of, amuse. He

>is very adoring and receptive child. He laughs all the time. He eats salad

>with blue cheese dressing amongst other things. He makes his share of

>noise and has a few words. So I am lucky. I say that because after

>receiving the devastating spastic quad cp diagnosis (January, 2002) I

>then very bravely took Isaiah to see a developmental ped. Just so I could

hear more bad news. The news was pretty heartbreaking. The doctor

looked at me and said I'd be lucky if Isaiah

>ever knew his name. He was wearing a Mickie Mouse tie and his last

name was Wolf. That goes to show you that doctors who wear Disney

ties are not necessarily kid-friendly. What he said turned out not at all to

be true. However I have had enough bad news to rebuild those towers. It

all continues to be

>shocking. I have come to just expect more bad news. That is

>what the New Years means to me. More bad news. Let's think. What

little wrapped treasure could it be ? If I am lucky I will be hit by an

uninsured motorist. The good news is that I am practically

>rock-proofed, although I have times when I just want to deteriorate - or

strangle someone.

>

>I am surrounded by triggers on a daily basis. For one I have two

teen-age

>stepsons. I contribute heavily to their tuitions. My job pays for the college

>tuition for one stepson. The other kid goes to a special school out in

>Idaho (CEDU) for kids with issues. It is an enormous privilege. And both

>my stepsons ski, hang gliders, do wilderness camping, roller blade, play

guitar and

>every other cool activity. My husband at one time was a professional

skier

>and our house was covered with trophies until recently. He reads every

>ski magazine out there. I am not remotely interested in sports. However it

>is my dream and continues to be that my son Isaiah would some day

>ride a bike. Am I a lunatic for having this fantasy ?

> The dream never entirely fades but it is not in keeping with

>the reality of the situation. The contrast is so jarring and painful. I

>recall

>last summer I took my son to a beach. I remember I felt like we were

>being stared at. I remember just feeling bad every time I watched

another

>child run around with a pail and shovel. I remember feeling like maybe I

>was wanting too much. Some days I feel like life is mocking me. With

>that comes the bunker mentality. Stay at home. To some extent it works.

>But I am resentful for that too. I feel like my husband is blessed because

>his parenting is more balanced. At least he understands and can relish

>the pleasure of taking his kids camping or coaching Little League. I feel

>like I get the short end of the stick. We have been trying to get a stander

>now for Isaiah for over 5 months. Despite all his apparent

developmental issues, I just cannot prove medical necessity. I feel like I

cannot provide him with what he needs. What kind of satisfaction is that ?

So I

>have all these rotten feelings.

>

> Occasionally I get wild bursts of inspiration to act on my rotten feelings.

>Recently I curbed the urge to send my obstetrician a nasty nasty

>Christmas card. The other alternative I considered would be to

bombard

>her office with faxes. Or hang out in her waiting room and stuff all the

>Baby Talk magazines full of the public record of all the malpractice suits

>she has been involved in - what you would never know until it happened

to

>you. I have even thought of throwing rocks through her living room

window ! I feel justified. I feel like I was betrayed by this practice that

I

placed all my trust

>in . I will never forget it. So yeah, I feel like I got jipped and it's

>hard to

>manage the vengeful urges.

Their offices, where my son was born is not far from where I live. I

>drive several blocks out of my way so that I never pass this office, this

>hospital. The contours of the hallways of the NICU, the ritual rinsing of

>hands before you enter, the breast pumping room, the beeping

monitors,

>are still fresh to me, deeply impressed within the vault of memory. Is that

>strange ? Am I nuts?

>

>

>I am now almost two years away from the NICU and no longer such a

rookie. In the beginning I believed I was going to find the cure for cp on the

internet. I surfed the internet relentlessly every night looking for medical

definitions, for research, for miracles. I could not believe what I read. I

never heard of children who don't walk or talk. That is, I feel the ultimate

cruelty.

What is

>more cruel for me today are the institutional hurdles.... the insurance

appeals,

>not having the stander Isaiah needs so badly, being denied

hippotherapy by

>the insurance carrier, then arguing over the IEPs, the IEPS not being

>carried out, putting him in a day care for special needs kids that won't

buy

>him adaptive toys, an adaptive swing, et, and then days where I feel

swept up in a web of do-gooders. The bureaucracy that serves

>these children is a killer. Some days I go to bed imagining I am involved

>in a Soviet-style conspiracy that is just determined that I am going to end

>up cutting my own throat.

I am very cynical. I perceive this life (and most everyone in it) pretty

pessimistically. Oddly, we can easily sacrifice Lott for racist remarks but

gladly receive Dr. Frist, the holy white Heal the Party- Senator. It does

not

seem to bother anyone that his documented wealth is at 40 million and

that all his money is stashed away in blind trusts. He is a shareholder in a

hospital corporation (an enterprise of his father and brother) that was

indicted for 1.7 billion dollars for medicare fraud. So he made a fortune in

health care fraud ! How sickening is that !

With all the cynicism, I have learned how important it is to keep my mouth

shut.

So I smolder and plot and advocate and research, throw rocks and

rock-proof, and appeal and re-appeal and litigate . I write letters to

people I don't even know and will probably never actually meet. That's

what I do.

Crosby, Philadelphia

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