Sunday, June 30, 2013

Well, I guess it's about time I got around to blogging!

Hello world. It's been a while. A LOT has happened since my last blog post. We've seen another hemi anniversary come and go. We've had NUMEROUS hospitalizations and several surgeries. We've set up shop in Childrens Hospital of Boston with Dr. Benjamin Warf, neurosurgeon and humanitarian extraordinaire.   He performed the last several revisions (Sept '12, March '13 and May '13) and I love him to pieces. Charli also had tubes put in her ears during the last revision because since Nov '13 she had 9 ear infections.  She's officially had 12 surgeries, 11 brain , 1 ear.

We went on Charli's Make A Wish trip in October 2012. We went to Florida and stayed at Give Kids the World and went to Sea World and Disney, and went to the beach which she LOVED.  I will try and blog about that separately, because it deserves it's own post. 

Charli has lost several friends this past year, but most recently was her soul mate JayJay, the son of my friend Kari. To say I'm still not recovered is putting it mildly. But Jay has come to visit Charli a few times. And I always look forward to him visiting again. 

Today as you can all see is June 30th. A start (or continuation of) something 5 years ago that would change our lives forever. I don't know that it's the hardest thing I've ever been thru in the last 5 years, but at the time I didn't know how I'd ever get thru it.   We knew Charli was in trouble, and the drs didn't seem to want to speed things up at all. So there she sat, in distress the whole time. Having a stroke the whole time. And there was NOTHING I could do about it. I sat there paralyzed from my arms down, praying to whatever I could to please get my baby out safely. We talked, all the time. I kissed her first sonogram picture every single night cuz I had it taped on the wall on my side of the bed.  I told her night night peanut, every night. I told her about all the things we were going to do, and I would teach her. NEVER suspecting there would EVER be anything wrong.   Nothing could have ever prepared me for the few days of my failed induction and the 48 hours after that.  It seems so long ago but I can close my eyes and be there instantly. Every word out of the neuros mouth,  those initial things they first told us.. massive brain damage, little to no normal brain activity. What the FUCK. I had just been to the dr a week ago and everything was fine!  Obviously, every year it's rough. Of course it's a celebration of her life, and these last few years a bigger celebration of all she has overcome. But it still hurts. And it still leaves me with questions that will never be answered. People who should be held accountable that never will be. It still makes me relive every emotional pain I felt those 5 days I was in there. Because the physical pain of the c section was NOTHING compared to the emotional havoc that was being thrown our way.  

But despite the dwelling, and grieving, and reliving... there are BIGGER things to focus on. Charlotte Hayes Gill will graduate Pre K on August 16th. She will attend Kindergarten in the Fall, and has a LOADED IEP. Despite the 5 surgeries Charli has had since last summer she has made SO much progress. Her vocabulary is INSANE.  She is starting to have emerging expressive language and saying things in 4 word sentences. Sometimes more. She knows and says so much I can't even keep track of it.  She knows all the words to her favorite shows. She started drinking from a straw with her SLP in school. (still trying at home, she wont do it here.)  Apparently she loves salami sandwiches which she eats at school. She LOVES music. She sings, in key, with perfect rhythm. She has been walking better since this last revision. She missed almost this entire year of school due to shunt and ear issues. When she came back in May she fell right in no issues at all, participated and was so happy. School couldn't believe how great she was doing with therapy MUCH LESS that she transitioned so well. Of course we have hicccups, but that is to be expected.   Charli has blown us all away...again, with how much she has done, regained (she lost ability to sit independently in the last several months between shunt revisions...and regained it when she went back to school.) She's pulling from sit to stand in pool again, wheeling her wheelchair, walking with max assist with no complaints, and in the gait with moderate complaining. She is TOTALLY independent with her ipad, she does it all on her own.  She knows her ABC's, can count to 40, can count to 3 in spanish and chinese.  She knows quite a bit of Spanish actually.  She is still doing hippo every week, and after kindergarten I will get her in to outpatient aqua therapy again.  

She is the happiest, silliest, funniest most beautiful little girl.   I think as a family we are just all in awe of how incredible she is, her strength and resolve, and her ability to just show people pure love. She absolutely adores her cousins Carly and Tyler. Carly is so great with her and is growing up to be such an amazing young woman. When she goes to daddy's house she loves to get silly with grandpa, color with daddy, boss Mema around and hang out with Grandma while she's on her laptop Chz is eating crackers on her ipad.   I could NOT have made it this last year if it weren't for Larrys parents. They have been absolutely amazing to me and of course to Charli, and have helped me SO many times. I have a pretty bad shoulder and about a month ago I fell and messed up my ankle really bad and they stepped up and took my Chzy for me. I owe them everything. We are ALL doing this together. Chee had a party at daddys today with her cousins and Uncle Shawn and Aunt Carrie...who made her the most BEAUTIFUL Pocoyo's AMAZING. (I'll put pics up later) and tomorrow she'll come home for a Yo Gabba themed party, pizza and cupcakes with me, grandma and Poppa Loren, Uncle Chris and Sami and Nick. She has quite the social calendar. 

Despite all the craziness of surgeries, and injuries, and illness, and random other things going on... and of course reliving the trauma that was the few days of labor and birth.. I have not been so at peace with life, myself.. .everything. I've worked really hard the last 2 years to be a different person...for many reasons but mainly because I didn't like who I was and Charli deserved better than that. Everyday is an unknown, and although of course there are days where I wallow, and sometimes get mad at the world, I approach each day looking at it full of possibility for me and my Chz.  I strive to be the best person I can be for her, and to help her be the ABSOLUTE best she can be, and we all work together to get her the best care, education, therapy..whatever it is she needs, we all tackle it together. 

God, 5 years ago I was laying in a bed.. miserable and contracting... and I think about now was when they turned the pitocin off because she was deceling so bad. I didn't know but in a little over 15 hours my baby would be here, and our journey would begin. We got thru it then, and every hurdle since. I know my daughter will get thru anything and do great things in this world. She's proven it already time and time again.  There are days I long to go back to when she was a baby, and I could swaddle her and put her on my chest and sing the snuggle bunny song. Before seizures, before the hemi, before revisions, and hip dysplasia and an upcoming bi lateral hip surgery. In those 6 months after NICU and before 6 month vaccinations things were just total bliss (sleep deprived, but bliss none the less)  I miss the days where she would cuddle up and fall asleep on me. But I don't ever want to miss something she has to say. Her voice, and's everything to me. Actually her singing is everything to me...and when she tells me to stop singing lol. 

Charli Hayes you were such an incredibly beautiful baby. So perfect, and so well behaved. Now you are a beautiful little girl, still perfect, ... sometimes not so well behaved lol.... but it's all good.   We go with the flow, and sometimes it isn't easy, sometimes it's harder than hell, but it's always worth it to see that smile and hear "I love you". Together, we can do anything. I love you very much....its not even possible to put in to words how much.  Most would say to the moon and back, but my love for you far exceeds that. 

I love you my little cheeto chz. My mighty monk. <3 br="">

No comments: