Michele W - Re: New to the group

[Guest guest]

Michele-

This is just beautiful and oh so very very true.

Thank you for giving form to the experience-

love,

yuka

RE: New to the group

-

I remember that feeling that I would never have a " real " life again. When

Aubrie was born, my older child was 6 and just starting full-day

kindergarten. That was a blessing for my sanity. I can't imagine having a

child with CHARGE and another little child at home. Without this list, I'd

have felt alone as well. It helped so much to connect with people who

understood. My friends and family tried, but you just can't get it til you

live it.

Eventually, I got " myself " back as Aubrie got well and more stable. I'm

still surprised at all the medical appointments and interventions she needs.

She's quite good medically for CHARGE - no aspirations, no lung problems,

feeding problems done by age 1.5 or 2 yrs, etc. But it seems there's always

something. And the medical decisions - as well as the social and

educational stuff - continue to challenge us.

But I do feel more competent to manage it now. I'm rested and have time to

do things for myself that keep me saner. In the early years, I could never

catch a break - to sleep, to read, to do anything to center myself.

I remember feeling that there was no light at the end of the tunnel. It was

such a feeling of despair and weightiness. But then I realized there is a

light at the end of the tunnel. But it's a winding tunnel so we can't see

the light til we get past several curves ahead. Hang in there. Either the

situation will really get better or you will become better at handling it.

Either way, it seems better with time.

You also learn to prioritize. There's no way humanly possible to do

everything that would help our kids. No way. We're dealing with too many

issues simultaneously. So we have to deal with the pot that's boiling over

and try to get it under control before the next boils over. And then we

can't look back thinking " if only I'd stirred that one sooner " . No - you

can only do what you can do. Don't look back. Don't regret. Do the best

you can with what resources you have at each moment, be grateful for doing

it, and give yourself a break for not being a super-mom and doing it all.

Still, I think we are all hit by pangs of pain, confusion, weariness. just

when we least expect it. After that happens a few times, you learn not to

panic thinking it's going to stay forever. You realize - ah, here's that

crap again - and you know it'll pass just as unexpectedly as it popped up.

The trick is to wait it out without freaking out. You know. don't let it

get a hold of you and imbed itself in you. Just watch it come, let it pass.

I hope you will soon find some relief for the stress that you're feeling.

Just when I think I'm gonna lose it, something gives and I make it through.

I hope that is true for you.

Michele W

mom to Aubrie 8 yrs CHaRgE and 14 yrs, wife to DJ