I know a lot of you have been curious for updates, and maybe I should write more, but honestly, it just hurts. It hurts all the time. Every minute of every day I'm fighting against this pain that just wants to swallow me whole. Except it can't.
See no matter how big this pregnancy is I have two little girls who need me. I have a husband who needs me. I have a life that has to keep going and that is what keeps my guard up.That is my shield from the pain.
Its been 13 weeks since I've updated anything because really its all too hard to hear, and this week ranks up there. Blake Lynn-Marie, our daughter is very ill. Not even ill but different. Her brain doesn't seem to be growing like it should, the Joubert's Syndrome is the culprit, but not only that her heart and lungs are having problems. Her heart has a hole in it, and at first they seemed to think it would heal itself, but instead its not, its more apparent and that means surgery at a very young age. Her kidney is still not working properly, but there's nothing we can do till she's here, her eyes are still showing lots of issues...she might be blind in one of them... its been one thing after another and we're still going.
I've been in the hospital twice now for issues that I can't control.
And thats just it.
I can't control this. Any of it.
I can't fix her, I can't take away her pain, and I can't take away the pain of our family from being put through this.
We were told Monday to not expect to bring her home any time soon. That our baby girl would be spending at minimum her first few weeks in the NICU if not the first few months. That because of her condition we shouldn't put together a nursery, that we should hold off on buying carseats or clothes, that we should be aware that we aren't going to have a typical birth.
And it hurts me so much I could die.
Because I was told that I won't even get to hold my little girl. All I want. All I need is to hold her, to let her know that I'm here for her, we're here for her, but instead her little self is going to be placed into an insolette and wheeled away for god knows how long. I was told to think of what measures we are willing to go to keep her alive. What measures are too far. No parent should ever have to do that, ever, no woman should ever feel like her unborn child isn't going to be there. But I do.
I'm going to be a mother without her child for so long.
But I can't let this eat me up because there's a little blonde curly headed girl snuggled up with me who's my child too, and a blue eyed 6 year old who can't wait to be a big(ger) sister who wants me to chase her around and watch silly movies. They need me just as much as Blake does. If not more.
So when people ask me how I've been I smile and say "We're still going" because we are, and thats all you can ask of us right now. We're still going and we will be no matter what.
