Tuesday, June 22, 2010

a cub scout kind of day even though... I was numb

Yesterday I had a big scout den meeting planned.
I had all kinds of activities swirling around in my head.
It was a two hour Citizen & Outdoorsman pin earning frenzy!
But
It almost didn't happen.
You see-
Monday night-
Hailey was at her BF's house Tiff, up the street. She came home at 11:15PM, I was blogging & trent had just stumbled down the stairs to tell me he was still awake. I asked her how she was.. GReat! She immediately turned back around though- because she had forgotten something at Tiff's. I told her- hey, why don't you have trent walk up with you? NO way- Tiff is waiting for me, I'll be right back. I wasn't worried- tiff lives 5 houses up.
It was late & dark
so ya- I waited.
She didn't come
back.
I called her cell phone.
then called again & again.
darn that girl- never answers- I thought.
I headed out the door & saw a car & some kids standing just below our driveway- hailey was probably talking to them? I called tiff & said- is hailey still with you? (It had only been 15 minutes, but she said she would be right back?) Tiff said- she left, I've been watching her walk home & texting her all the way - but then she stopped replying- I can't see her now & she won't answer me.
I RAN OUTSIDE
to see that the car out front had stopped because she was lying in the street.
having a seizure.
I got to her.
She was on the pavement.
At first I thought maybe she had been hit by the car. Immediately police started driving up with sirens blaring. Next an ambulance- EMT's, police, questions, neighbors starting to crowd. I called brett & screamed Hailey's in the street! He had been asleep, but was there in a flash.
She came to- they wanted to take her to the hospital. WILL A NEUROLOGIST SEE HER?
no.
we didn't go
she stumbled in the house with the help of her dad, exhausted.
I dispersed the crowd.
She has conversion disorder!
we think
I mean that's what the therapists say....
she's on the list to see the pediatric neurologist-
damn list
I want another opinion.
I want answers!
I want her to be safe! well. my hailey!
We took turns checking on her through the night as she slept on the living room couch. That's as far as she could make it she was so tired.
brett got up early & started making phone calls.
Calling. He has a promise of an appointment on the horizon.
She had her monthly appointment at the U. with her phyciatrist. He gave us more leads, but says this is what conversion disorder does. He could put her on meds, but they will come back. Seizures from conversion disorders nearly always go away with therapy on their own. Holy hell- how much can she put up with!?
I like him though-
but yes- I want another opinion- more tests.
even if they all come back normal- again- I want them to do them- again.
--
I thought about canceling my scout day-
but what good would that do?
Cub scouts don't come late in the summer.
Especially with the promise of making fires & having lunch.

We talked about what it means to be a good citizen.
Like- stopping in the road to help someone who is hurt.

Brett - still home took a few minutes & showed them how to put up a tent.

oh- boys
don't break the tent!


We cooked outdoors, talked about the importance of cooking, eating & cleaning up together as a troop. It was fun- really.


then brett came back out

and showed them how to make a fire
tee pee
style

everyone got a turn to light a match in our non existent garden.
We have two puny tomato plants.
It's the most pitiful garden we have ever had.
but-
it's been a
you know,
hard spring.

We roasted marshmallows

talked lots more about safety & the proper way to put out a fire.
Then- they helped clean up & went home.
Hailey was now ready & we headed off for the 40 minute drive to the doctor.
I love our drives to the doctor.
we have such great discussions & she plays me all her favorite music on her IPod.
Her doctor (we seriously love him) is moving.
this was their last visit.
With tears in our eyes we thanked him. How do you thank someone who has helped your child so much? He really has- she has come a long way & is doing so much better. She is strong, confident, outgoing, smart, fun... she inspires others, and she still has seizures.

it's been a long day
my buddy max has followed me around, as usual all afternoon.

tonight after this day...
I'm only now slowly getting the dishes done.

5 comments:

Kristy said...

I am so glad you had scouts! I think that you need to keep things normal and keep going as much as possible!

I am so sorry about Hailey's seizures. I was so frustrated with Dr's with Brooklynn that I can see how people go crazy to get people's attention. I remember going 3 nights in a row to the ER trying to get a Neurologist to see us and FINALLY on the 3rd night they finally called on in after we said we would keep coming until we saw one! So hang in there things will get better!

The best advice I got once was from my pediatrician....He said that you are your child's best and only advocate and NEVER back down until you get what you want! After he told that I became the mother from HELL until I got what Brooklynn needed. I think some of the Drs' hated me but someone had to do it!!!

You guys are in our thoughts and prayers LOVE YA!! :)

michelle said...

Scary!! Holy hell is right. And I think Kristy is right on – who else will advocate for our children if we don't? It can be so frustrating, though. I am so glad you got that appointment.

And I am so impressed with that Scout activity! Man I wish you were Lucas's leader.

wende said...

i think hailey is so lucky to have you and brett in her corner fighting for her. and we are thinking and praying for her and you. i know it's going to be fine. i love you!

and michelle is right, you are the best scout leader ever. no one is going to be able to fill those shoes.

Jill said...

Oh my goodness, what a nightmare experience for your family, how terrifying! I'm so glad Hailey wasn't hurt.

Karrie said...

Ditto what everyone else said...you guys will get it all figured out...just have faith!