Monday, October 26, 2009

Re: [epilepsy] simply why

 

Julia,

I live in So. Calif. If you lived close, I would be happy to watch your kids
so you could have a break. My son is 13 with seizures, and 4 of my 5 kids
are special needs. (I'm an RN). Do you live in California? You sound like
you have not had a break in a while and could really use some time to
yourself. Wish I could help more.

Jennifer
You are welcome to email anytime you need an ear.
academyofthepossible@gmail.com
On Mon, Oct 26, 2009 at 5:15 PM, Wendy Baur <wendy.sue@gmail.com> wrote:

>
>
> Ok so I am one of the parents here. Julia born with a brain tumor and
> now uncontrollable seizures. I am so tired of watching seizures then
> Julia goes to sleep, wake up siezure go back to sleep...get our
> pattern here. It's no wonder that she will be 2 next month and still
> a 6 - 8 month old developmentally her darn brain won't let her
> develop! I am simply having a poor me WTF kind of day. I just went
> and got a handicap plackard for the car it's getting kinda hard to get
> Julia to and from the car when idot people park too close. I have had
> to open the back hatch of my tahoe and put her in that way before. I
> really don't understand what did I do to deserve this hell that I am
> in. Yes I consider watching thousands of seizures and fighting for
> every inch of development I get out of Julia hell. The
> seizures...well it's like watching her die and I am tired of it. Then
> I have these people with "perfect" kids that look at me and Julia like
> we're the plague. I have 2 normal kids too and I try to make life
> normal when our lives are FAR from normal. Then I have these parents
> who can't even move their feet out of my way when I walk into the
> gymnastics waiting room pushing Julia (2 yo) and caring Kiley (10
> months). I don't expect pity or expect people to get up and help with
> the door I don't expect anything simply GET THE F OUT OF MY WAY!!! I
> mean really simply move your feet so the wheels of the stroller won't
> hit your feet honestly is that too much to ask. Then when the class
> is over why the heck do I need to wait for your kid to tell your
> friend about their costume, then struggle to put her shoes on, then
> watch you stop and chat on the way out the door. SIMPLY GET OUT OF MY
> WAY!!!! I didn't ask for a special needs kid and God should know I
> don't want a special needs kid so, if I hear one more person say, "
> you handle all this so well" I am going to SCREAM!!!! I just want to
> say well you idot I don't have a choice and I really wish it was you
> and not me!!!!!
>
>

[Non-text portions of this message have been removed]

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