And a beautiful baby you were.....
You were not a preemie but you were just an itty bitty thing. So small that even the very limited preemie clothing and diapers we could find just hung on you...
I still have your first outfit. I'm betting that today it wouldn't fit on your big fat toe.... :0)
You weren't too happy with life at first.....
Little did we know through all the scowling and the screaming your little body was in agony from clonus and seizure activity pretty much non-stop....
I am so sorry we didn't recognize it for so long baby....The screaming and seizures would last for 6 months....
We were so new at this "special needs" thing and the medical community hadn't dealt with many babies who had your many complex needs...
Besides....
Guarded life expectancy and vegetable seemed to be favorable words to describe you...
I know, I know.....
Your little brain did look like swiss cheese on those blasted films...
And really there was no earthly way you could possibly see that much...
And you certainly couldn't track...
Or make eye contact...
Could you?
It really was impossible with what little brain tissue you had left...
Truly couldn't be...
And there is no way you could recall something like for instance a best friend like Elmo...
Nope!
Impossible...
It's hard to believe that only hours after this picture...
We would be at your bedside pleading with God to not take you just yet....You almost didn't survive this.
You shouldn't have..
But you did...After nearly 6 long months you woke up looking towards the heavens..
And smiling...miraculously sustaining no further brain damage..
We got the best Christmas present that year...You were no longer on the vent and you were alive..
You've flirted with death more times than I care to remember...
I've tasted it...
Over...
And over....
And over again....
It's been nearly 2 years since that dreaded time. The trach saved your life. It has prolonged your life and it has given you a better quality of life.
You could not have convinced me of that shortly after....
Today....Your battered and bruised. Your battle wounds and scars are evident. Your declining health slaps me boldly in the face. I hate the disease that wreaks havoc on your little body. I hate that I can't fix it.....
Yet I believe....
I believe one day your body will be new and without pain......
You will walk. You will talk. You will be healed......
These things I do believe.....
And even though I believe these times are very dark and scary...
I recall very clearly the night before that surgery. I find myself reliving it. I relive them all. I relive each and every moment you wrestled with death. At times I can barely catch my breath and my blood runs cold. Yet in the darkness there is light.
I find myself going back to those times....
Reading and reminding myself over and over to be thankful lest I forget...
To remind myself that I'm not alone...
To remind me of Gods grace and his love for us...
March 10, 2008
" As I sat here yesterday evening I had a very rare moment to catch my breath. Jophie was sleeping very peacefully. The rooms on this side of the unit had been emptied of all its little occupants all of whom were well enough to return to the safety of their parents arms. Parents who only weeks before were skipping merrily through life never once thinking they would be on this side making life and death decisions about their most cherished possession all the while entertaining thoughts of life without their child. Would they have believed that just days ahead they would be in this place? Most will tell you no yet here they stand on my side facing some of the very same monsters. They will leave here forever changed because they too have tasted death. They will leave here with a greater love for their child and things that once seemed important will seem trivial. Life as they once knew it will be changed and if asked they will tell you they are better because of it. I don't think there is anything more capable of putting things into prospective than the planning of your own child's funeral. Something I wish no one had to face.
And in the stillness as darkness began to fall I was reminded once again of Gods grace and his presence that is clearly etched in every shadow and orange hue. Just out the window a masterpiece painted just for me and directly behind me lying quietly in his bed another masterpiece created with the very same hands both perfect in every way."
The perfect reminder that I wasn't alone....
And again two years later it is days like these I live for...
Those days are starting to happen again.....
Easter pictures from this week:
Jophies party is today around 4. Alvin and the Chipmunks is his theme of choice this year. I just love those chipmunks too! :0)
No nursing today so I need to go as I haven't even had a shower. No food has been started and Jophie is needing cleaned up and dressed that is after he finishes eating.
Phew!
Gonna be tricky indeedy!
Happy Birthday my sweet Jophie!
I'm so thankful we've made it another year.
Yep!
You've come a long way baby and I know you'll continue to amaze and baffle the doctors with your ways!
Mama loves you baby!
Birthday pictures later.....
Trina and Jophie
