JOURNAL

Do you have a 'very Special Child'?
Then you might be interested in my
TAILS!!


I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.

Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.

Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!

I have done this for 2 years, to every shirt she has, and it's very easy!!!

For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.

Click here for DETAILS and PICTURES.


http://www.babyjellybeans.com/web/do/site/photo?ID=723096





   

   
   

updates September 07, 2011
School started!!! ya-hoo  yip-dee-doo wink_smile
We got all 3 girls back to school this week.
I'm usually not so excited - I'm usually one of those moms who really loves having the munchkins around all summer.........
but, honestly, I was very happy to wave good bye to Suzy for 3 hours each morning.

She needs to be in school. She likes it. And I love it. It wears her out. It gives her something fun to do. And it gives this Mom a much needed break.

We are VERY blessed to have her back in the SAME class with the SAME AMAZING teachers that she had last year. I'm SO excited about that. We LOVE LOVE Miss Beth and Miss Kim.heart

She goes to school from 8:30-11:45, comes home for lunch and then goes to therapy @ 1:00 4 afternoons a week.
It's great to be back into a routine.
Gracie started 7th grade and Maggie headed off to 4th grade.

Our family DID end up getting to take our vacation. The hurricane didn't stop us. We flew south a day early and then heading over to the bahamas on Sat. and stayed for a week. We had an awesome time. It was so nice being together and just enjoying the days. We had NO therapies for a week. (we did no standing, no stretching, no AFO's or splints of any kind, no mouth exercises.......nothing!!) Just a whole lot of floating in the pool. Suzy loved it!!
Here's 'Murphy's Law' - I bought Suzyy 3 different floaty things for the water. I even paid $18.00 extra to have one floaty rush delivered so it would be here before we left for the trip.
I also stuck in my suitcase a couple of basic float rings from the Dollar Store.  So,, guess which one she liked best? Yep - the $1.00 ring. She DID NOT like the other 3. But she LOVED the $1.00 ring. She was supported perfectly in it. I slipped it up under her arms. She layed her head back, and floated for HOURS!!!!!!!! When it was super sunny Chris or Maggie followed her around the pools holding an umbrella over her eyes. (She doesn't like the bright sun). After all - she IS the princess!!!

So now we're back to the routine of home, and I'm lovin' it.
I'm not sure what alternative therapies I'm going to do with her this fall.........Medek or ABM or HBOT or CHIRO or ?.....
I'll figure it out as time goes by.

I hope all of your kiddos got back to school happily and that they all have really nice teachers!!!!!

I added pics under PHOTOS-Aug. 2011

peace,butterfly_pink
Whitney






boo, hiss, whaaaa... August 25, 2011
This stinks!
Our family of 5 is scheduled to fly out of here Sat. morning for a week for our first vacation since Suzy was born (over 4 years ago). No therapies! No treatments! Just our little family having some fun in the sun.beachball

Problem #1 - the place we are going to was just pummeled by the hurricane!
Problem #2 - the place we are leaving from (virginia Beach) is supposed to be getting slammed by the hurricane on Sat. morning. Probably won't have flights out.tounge_smile

Sometimes I feel like the stars are stacked against me.star_red

One thing is for sure -
No matter where I land up on Sat. evening
(a. my house with no electricity OR
b. tropical paradise)-
all 3 girls will be in bathing suits and
Chris & I will be sucking down frozen fruity adult beverages.wink_smile


If you are in the hurricane's path I pray that you are safe!
Peace



August 09, 2011
Our family is leaving tomorrow for NY, NY.
Suzy is doing ABM Therapy with Marcy Lindheimer and the rest of us are going to rock the Big Apple.
Suzy will get 8 therapy 'lessons' with the beloved Marcy.
I'm excited for her.
And the girls are SUPER excited to get back to the city.

I can't help but wonder......
What am I chasing?

3 years later and I'm still on this "quest".
I made it my mission to restore my daughter.

But I'm forced to evaluate this mission.
I KNOW I'm not going to make her 'normal' again......
but am I making her 'enough better' to justify the cost?
Because she's barely better.
oh yes - - she's better - but you must get out a microscope to see it.
force myself to get out that microscope and look and I force myself to see the good things that have happened.......
 
And the answer is - I don't know.
I don't know when the mission stops (if ever).
I don't know how much 'better' she can become (if any).

But for now,,,,,I will pack my bags and continue on.

I agree with what my friend Mayia said:
 "We mothers of 'special kiddos' are just trying hard to help our children experience life as a playground instead of as a jailhouse".

We're going to have a great family trip this week - and if Suzy learns a few new ways to move her body than it's a WIN WIN. 

 Peace.




 
When? August 04, 2011

When?

When am I going to stop seeing little girls who are Suzy's age and think,
"That's what Suzy SHOULD be doing."
"That's how she would be acting if she hadn't gotten brain damage."

You would think I was over this by now.
It's been 3.5 years since she was my normal baby girl.
She's been THIS way a lot longer than she's been THE OTHER way.

Usually I am just fine. This is my life and I LOVE my life.
Usually I am happy and content and used to this 'new normal' that God has entrusted me with.

But every once in a while I get sucker-punched right in the gut.

Like this morning.
I was at Food Lion.
I was doing my usual 'push-Suzy's-wheelchair-with-my-right-hand-and-drag-the-shopping-cart-with-my-left-hand."

And behind me I heard a small voice say,"mommy, what's this green thing?" (it was a honeydew melon).
I turned around to look and my heart skipped a beat.
The air was sucked from my chest.
The child speaking looked exactly like Suzy. It was surreal. It seemed like Suzy had gotten up from her wheelchair and was walking around and asking questions.
I walked away - but I just didn't feel the same.
I suddenly felt so sad - so sad for my sweet soul who will never get to run around a grocery store. It took all my power not to cry in the middle of the produce section.
I wanted to shout, "It's not fair!!!!"

But I didn't.
Instead - I pulled up my Big Girl Panties,
leaned down to kiss my girl and pop an M&M in her mouth,
thanked God that she was here with me and that she could even EAT M&M's,
and strolled on to pick out my cucumbers.

I hope I eventually 'outgrow' this.
I don't like experiencing these episodes of total saddness.
I pray that when she's 21 I'm not looking at other girls in their 20's thinking, "Suzy should be driving, and dating, and going to college, etc........"


 
"I am what I am and that's all that I am" - Suzy's probably saying to me.
And I should be answering back,, "Yes, baby girl, that's right, and that's good enough for me!"heart











   
July 20, 2011
You make beautiful things out of dust - thanks God!     heart_pink