Ugh, and double ugh.

Yesterday we got THE phone call.

I was expecting it.

I  was dreading it.

It came anyway.

Gianna's next surgery is April 11th.

Which means house arrest begins in March.

We just got over 3 weeks of being sick and one week of Snowmaggedon for crying out loud!!!

Now this.

And I'm a little blue.

I just HATE IT for her. 

I just wish my sweet little girl didn't have to endure surgery after surgery, day after day in pain leading up to surgery and then recovery after recovery where we hold our breath and pray for no infection.

And then exhale in praise and gratitude four weeks after surgery when she is infection free.

But alas, it is her lot in life.

And ours.

So I will try to look past the dread and be thankful for the life-saving surgeries that help my daughter grow and breathe and live.

But honestly, it's hard.

AND.....

Celia is having eye surgery next week. It's necessary, and all that good stuff, but to think of her having to have surgery just being home a few short months, makes me sick to my stomach.
Greg and I have decided the best thing for her and Sofia is for him to go to surgery. I hate not being there for our baby.
It is, however the best decision for all involved, so I have to put my personal anguish aside.

AND.....

Celia just LOVES her "Go, Go GO!" The one that they ordered for her is much different and much harder. They want it hard for her to have to work to walk. It will be extra-hard because she has gotten used to scooting with ease all over the house. In the CP world, making her life hard is my job. I hate that, but I cannot do for her, what she can try to do for herself. (even if it takes her 45 minutes to eat/roll to me/ etc.)

I got the idea to buy another one (insurance would never cover two gait trainers) like she has on loan so that she could go outside and "ride" her bike like her sisters.

After all, it's a glorified trike, for Pete's sake.

So I looked online. Whatcha think an little "Go, GO GO" might cost??
Any guesses?
I was thinking $500-$800 to give her the sheer bliss of feeling like a big girl.
(I was secretly hoping it was $250.)
Oh gosh no!
The joy of independence for our little Celia is a whopping $2200.00!
So much for THAT idea.
I CAN'T BELIEVE THEY CHARGE QUADRUPLE FOR SPECIAL NEEDS EQUIPMENT BECAUSE THEY KNOW YOU NEED IT!!!
 It's SOOOO maddening.

And our insurance doesn't think she deserves speech therapy because after all, she has cerebral palsy. That makes her unworthy of communication skills.

And they don't cover bath chairs so she will be safe in the bathtub.($550)
Or special compression vests that LET HER SIT unassisted. But it's experimental after all. ($1000.00)

Why is EVERYTHING for these kids such a fight?!?!?
Argh.


But despite my frustrations/worries/fears and dread, I am thankful.


SO VERY THANKFUL!!

~For friends who send encouraging emails, and take the time to call/meet for coffee and work around therapy sessions,homeschooling and quarantine to make it happen.

~ For people who "get it"- from the medical to the attachment stuff. They get it. And they willingly walk through it with us.

~For family who steps in to help. Day or night. At the drop of a hat. Whenever we need it. Without reservation.

~ For our boys who are the only ones besides us who really know how hard this path in life can get. And although they didn't choose this life, they are always our support system. And our back-up plan.

~For our church that helps out whenever we need a meal, an encouraging word or a shoulder to cry on.

This is our life.... the road gets bumpy daily sometimes, but we wouldn't change a thing.

We are blessed. So VERY, VERY Blessed.