Wishing Upon a Star

Last fall when we were told by sophias neurologist that she suspected sophia had pontocerrabellar hypoplasia i began to do my own online research ....

little tip : never do your own research, unless your ready for all kinds of terrifying answers.

Every single thing i came across said most kids with pch don't live to see their 20's .....

i was destroyed... 

but we have already been over that part, when i did finally pulled my head out of the mud I got to thinking about wether or not I was fully taking advantage of all that WAS actually available to her and all the strengths she did have and i had a realization. 

I was not. I was so busy being upset that I never noticed how selfishly shut down I had become.  I thought about the other parents in the world who's kids were REALLY ill , like in pain , in the hospital. i needed to be thankful that i had a chance to fight and that i could keep her for as long as her body and mind aloud. at least she didn't have to fight an active invasion on her body or cancer. 

i vividly remember Cory was granted a wish from the make a wish foundation ( he had bone cancer) to meet the red hot chili peppers. ( it was the 90's, they were still huge) they drove him to NYC in a limo her meet the band and had a great time.. i often think of him on that trip and how happy he must have been.

Then that day while thinking of my cousin and my uncle it hit me ... MAKE A WISH!!!! 

oh em gee MAKE A WISH!!! oh yes, thats right.... i just o.m.g'd.... and ill likely do it again. 

I jumped on the computer right away and pulled up their website. I Needed to know EXACTLY what were the qualifications a kid need to meet to be eligible.. 

I was just told sophia has a shortened life expectancy was I not?!?!?! 

Much to my extreme pleasure I found this:

”We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.”

Well shit, thats US!! I wasn't sure if it was just kids with cancer or not. and its most definitely NOT.

but at the same time stuff like this just doesn't happen to people like me. So half of me was like 

yeah ohhkaayy your going to get the make a wish foundation involved.. don't hold your breath...

But it was in black and white any child with a life threatening condition.. I had to try. 

Worst they can do is say NO right? 

I filled out the online referal form explaining everything i knew about sophias pch. A week or so later i got a call from a very kind woman who took some more in depth info on the diagnosis and I gave them all of her doctors information. They would contact her medical team from there to confirm that she in fact did have what i said she has. We had just sent out the blood work to get a definitive diagnosis. So on the off chance that it would come back positive, i just went for it. 

As of January 30th i still hadn't heard from the people at make-a-wish . But I did hear from her doctors.

She was confirmed to have sponaneous CASK gene mutation that caused her PCH. there you have it folks. we officially have a life threatning condition. Again i was destroyed.. but we have also been over that..

The only silver lining to her diagnosis was that i knew we were eligible for a wish now. I KNOW we are we just HAVE to be.. my baby deserves a wish .....  In the mean time while i waited to hear from make a wish I kept trying to broach the subject with Luis. Every single time I would bring it up I got the same answer... 

stop talking about make a wish please.. lets not get too happy start planning stuff only to be disappointed. he's a don't count your chickens till they hatch kinda guy... so i tucked it away and tried to be patient..

two months later right in the middle of a shit day i get a missed call and a voicemail from the lady at make a wish who initially did my intake questions.. my stomach dropped cause like i said it was already a fantastically shitty day.. and getting denied our wish would have been the cherry on top.. 

i didn't say anything to anyone and just played the message. she threw me off bad too because she had a somber tone.. " i just wanted to let you know we heard back from your doctors, and , we have decided that she IS ELIGABLE for a wish...." the rest was all charlie brown whomp whomp whomp.. 

I happened to be standing at the kitchen table at the time.. so i started laughing and banging on the table and jump pin up and down ... my mom and luis both come running out of other rooms looking at me like ' this chick finally lost it .. she's crazy' i couldn't make words so i just played the voicemail on speaker and tossed the phone over to them... luis' face was priceless... ill never forget his reaction. 

he had been pushing it down away and aside for months refusing to get his hopes up .. so for me it was like confirmation of my faith.. but for him it was like a huge gift bestowed all at once..

we could make one of four kinds of wishes. 

wish to have..

wish to meet..

wish to give...

wish to go...

for the first time in the longest three years of our life we had a real hardcore reason to smile. like really fucking smile. the kind of smiles other people can't see without smiling.  We were smiling and laughing and hugging each other. The amont of joy that moment brought us.. was overwhelming.  amazingly perfectly beautifully overwhelming and so so so so nice to feel. 

you guys have to understand that when something this extreme comes into your life EVERYTHING changes... for three years everyday we have had to make some type of sacrifice to make ends meet or to keep up your schedules and jobs and responsibilities. Never have we ever been away as a family. Never had luis or I ever been on a actually vacation in our lives. living on one income is a trick and travel isn't part of the equation. thats for sure.  not only that but we are both always so worn down and strung out that we don't enjoy each other like we want to. 

The chance to get to just enjoy sophia as a child as our daughter. to be able to just laugh and enjoy dayS together without obligation or interruption.  NO work, preschool, cooking, cleaning,  therapists, care plans, adaptive equipment schedules, doctors visits, phone calls, paperwork....  for three years straight we juggle all of this everyday. and have little time and energy at the end of the day for ourselves. 

I can't even explain to you appropriately what a relief it is to have this to look forward to. To finally have SOMETHING to look forward to. It is the light at the end of the tunnel for us right now. 

I will say we obviously picked a wish trip.. we need time as a family to just be a family. 

If your are on my Facebook you know what we choose. I will tell you all about it in tomorrows post. too much story for one post  :) 

hope everyone is enjoying the summer. my laptop battery is done for so sorry for the delay in posting lately and for the delay with my webpage designing but I'm on borrowed computer time. ill have my baby back soon and posting will resume as it used to be.

thanks for keeping up with us. <3