These butterflies are suffocating

So much has happened since last time I have posted.
Who knew that something that came about so easily, would be so hard to get through.  There have been more then a hand full of times that I just wish that I could walk away, I want to walk away right now...but then I think about you, I dream about you and I can't seem to get you out of my head.

I am so committed that if I were to just give up, I know that when you were born, regardless to whom, I would think you were mine and I would regret every minute of not staying committed.  I just keep telling myself all of the struggles, the trails, tribulations and money are all worth it.

At this point writing this I can't even fathom that there are 2 more months of agonizing waiting, sleepless nights, risen blood pressure and feelings as though my own emotions are suffocating me.  What I am going through is controllable and these emotions are because right now and for the past seven months and the continual two months you have not and will not be in a controlled healthy and safe environment.   I won't feel at ease until you are in my arms, and until you are home, right where you deserve to be.

The process is exhausting however it's not about the destination it's about the journey and not to long ago you were inconceivable in my mind and now so close to a reality.

Unable to breath

Brandon almost died tonight, again, for like the twelfth time.  It never gets easier, and it always brings my PTSD back with a vengeance.  I react so well like it is my God given gift to be on earth to keep saving Brandon but each time a piece of me dies, because one of these times I know I won't be able too.  Although he was choking at dinner with our best friends, even when it was over and even hours later, even now, I feel as though I am suffocating.
Honestly I am even too upset to write this, ........

[noun] an unfilled space or interval; a gap.

I just got home from my appointment with my lawyer.  My mind has been racing since we first shook hands and said our hello's....but we kept talking, and smiling and laughing and my mind just wanted to process the H E L L O I'm greg, but it couldn't until now and that is why I am writing this.
This is so surreal, I didn't plan for this or you, but yet it is happening and I am so emotional because it.  I am not going to lie, I talk myself out of it a million times a day but I can not seem to get you off of my mind ever, I even dream of you and more then anything I know that God wants this for me, for us and mostly for you.

Our lawyer said that during the home study "they do not want perfect" and they aren't looking for it either, "thank God", relief is all that I felt because I am so far from it.  He also said a 1 bedroom is more then enough, you do what you can and never need to feel like you need to live outside your means.

We are planning to get custody of you even before you are born, gregg thought this was best.  With hesitation, I agreed.  This is so new to me and I am not going to lie, your dad is so confident and peaceful, accepting and seems prepared.  I however am scared to death.  There is no other way to explain it.  So much can go wrong, this is life changing, am I ready?

....but I keep reminding myself so much can go right!  What ever the outcome, I know it is of God's will and I have to accept what is planned for me.  This whole thing just seems right though.  The way that it happened, and then didn't happen and then happened again.  The way that Aaron led us to Gregg and Gregg seems like home, especially for this.

As I am writing this my mind is still racing, but weirdly Gregg answered so many questions that have also brought peace.   He laughed at me with remark of "I just love how you are so upfront and blurt out direct questions, that you want answered, then and there, with no error" but soon you will learn that is me, and I have always been this way.

Gregg got onto the computer and emailed CPS and because of that you don't have to worry when you make your arrival, they said that since he was in contact with them, they would notify the department and their supervisors that you had a home, you have a home!

The weirdest thing happened to me while waiting in the lawyer's office.  There was a well aged older gentleman and a halfway aged woman whom I assumed was his daughter.  The butterflies came out in   chatter as I began to ask them questions.  They happened to be your dad's grandmothers best friends Jay and Bev and spoke of the house your dad and I have shared so many memories and holidays in.  I had a very good hour conversation with them and we wished each other good lucks and went our separate ways.

When I imagine you in my mind this is who I know you'll resemble.  Get strong, grow healthy we have a big family that can't wait to meet you and love on you.

http://www.caringbridge.org/visit/brandonholliday/journal

It makes me beyond terribly sad that my husband is so sick.  After four days of entirely no sleep for him, he finally fell asleep in his favorite lazy boy recliner with a container of Duff's red velvet cream cheese ice cream, (his favorite) in his lap. Honestly more got on his self proclaimed night shirt, favorite can't sleep without it blanket, and chair then in his body, but he hasn't lost his independence:) Of course I can not sleep, when he doesn't and especially when he does....out of fear. What if it happens again, what if I don't hear him, what if I am doing this because I want to look back and have these memories, but mostly I am afraid that it will be the day and I will do everything in my power to not let that happen. I love listening to him breath it calms my nerves.  I've never been a fan of Brandon's CPAP machine, don't get me wrong I sell that device daily to him like it is the fountain of youth, but it came along and disrupted my borderline frantic routine of life guard.  Tonight he isn't wearing it.  He should be, he need's it, but I try to relinquish some control and let him be as independent as possible...

I can't imagine how he feel's, physically and mentally.  EVERY single cell in your body, except red blood cells, is affected. Honestly I feel like mitochondrial patients are  like Bella and Edward's daughter, Renesme.  Beyond beautiful.  I can not believe that my husband's body is severely aged  from COX deficiency, but that he has a majestic appearance, maybe I imprinted and that's why, but you would think eight years later, I would be use to it by now, but I hope I never become. 

When Brandon becomes "hypoxic", when his brain does not receive enough oxygen, he says the funniest most memorable phrases.  Today he was snacking on teddy grams and as he was dipping them in milk, he said that my mother, his "best friend" quote: " would take somebody's knee's out for some teddy grams!" I love these moments, I laugh so hard and he is so serious.  He said " He knows she told him."

...today was awful... 

Have in or be able to bring to one's mind an awareness of (someone or something that one has seen, known, or experienced in the past).

It all went by so fast; I still can't change the past
I always will remember, everything
If we could start again, would that have changed the end?
We remember everything. Everything. 

http://www.youtube.com/watch?v=7G8QItjTSDA

I DO NOT OWN ^^ THESE LYRICS OR THIS SONG, I AM USING THEM FOR REFERENCE MATERIAL ONLY!

Haunting, is the word that I would use to describe this song.  You can tell that the person singing has been through some shit...I to have had my fair share and my vehicles radio has had it's fair share of this song replayed, again and again.  This song came to mind tonight because I am TERRIFIED of what I will remember and what I've already forgot. For now I can not forget a HOUSE episode of a young lady, who remembered everything and I mean EVERYTHING or was it she couldn't forget anything? She was brilliant. Coincidentally this particular episode aired in 2011,  and I didn't see it until it was a rerun in 2012 and by then my husband was already diagnosed, with the same disease that this woman had... by the time I saw it I was an "expert" in the medical field, with no prior training.  The hour long viewing came to conclusion with me screaming to my husband " I fucken' knew it!"

But knowing didn't help her or my husband.  Even though an actor, HOUSE's, genuinely sympathetic diagnoses, didn't help me. 

September 27th 2o12 my twenty-five year old husband was diagnosed with a T E R M I N A L disease.  Looking back I wished they would of withheld the terminal part for the end of the horrible news encore  because devastation causes deafness and I still, to this day, five months later do not understand this condition or what these physicians "playing God" had to say for the rest of that two hour appointment.  I have googled my little heart out but, psychically, never have gotten over that word.  One word;        T E R M I N A L robbed me and I have been a hostage ever since.
So Hello I am Lilly who cognitively stopped progressing from that day, that minute, literally, seriously I AM AWARE OF IT, but can not change it.  Just speaking about it causes a knot in my chest and in this case, acceptance isn't the first step. I accepted months ago that I have been through some shit but then this "new" me comes in and adds to the exhaustion of figuring it out, or attempting to.  Prior to April I was never so sure of myself: fast forward to February and I catch a break from the cognitive lapses to realize that I have became this way out of fear, because of love, and unwillingness to surrender. I'm selfish! I'm devastated! but some how I know that I am blessed