Its wet outside today. Too wet to do the running I had planned for the day. Rain and wheel chairs don't mix too well so it will all have to wait. I'm disappointed for Ash though because even though I may enjoy having a day to stay inside she was planning on being able to get out today.
My silly girl LOVES to leave the house. It matters not WHERE we go, but simply that we DO go. She cracks us up. The minute we get into the car she rolls the window down. She's so quick at it now that she gets it down before I can get them locked! You should see the smile on her face as the wind blows back her hair. The older kids have a hard time complaining about the temperature or the wind inside the car simply because of the joy she expresses from rolling that window down. Hard to deny her such a simple pleasure.
The only thing I really needed to grab today was more laundry soap, but I suppose the laundry can wait until another day. Good excuse? I think so.
I'm working on taking down and packing away our holiday decor this week. Pretty sad around here. Makes the house seem so empty. I always have such a hard time when this time comes, and I think it boils down to the passing of the milestone I was working toward in Ashley Kate's life. If I don't have something like an event, a date, a holiday, etc. to focus on making it to then the harsh reality seems to slam against my heart so very hard that I feel knocked down. I have to have a goal. I have to know we are working toward this or that in order to stay focused on her future and not stare into the face of transplant. It may sound ridiculous, but for me its the way I've learned to get from day to day without falling apart.
One thing I know for sure is this...bringing her home was the VERY BEST DECISION we have ever made. She has come back from the horror of it all and has lived with a joy that I find indescribable by words. She is alive. She is thriving. She is strong. She is happy. Seriously, it all pales in comparison to those things.
So many times I am asked "what are we waiting for" and so many times I can't really formulate an answer to that question. I simply stare into the twinkling eyes of my daughter and know that this is not the time to go. Its just not the right time. I can't answer in words. Its just a feeling. If you could see her and know her the way that I do I think you might understand, but to put into words on this screen the why's of it all...I just can't make anyone understand.
We've been given this time with her here at home and I wouldn't trade a moment of it. Not a single moment that has been transformed into memory. The rainy days of being stuck inside, the car rides with the wind blowing back her hair, the holidays, and the every days. Each and every one has been a gift to this family. We recognize that and we know it won't always be this way. It makes our family grateful. On a level that I'm convinced we would have never experienced had we been handed a struggle free life with our littlest one.
I wish so desperately that the lessons hadn't required the high price that they have had attached to them, but I know He's grown us through the paying of it. My Blake...My Allie... they wouldn't be who they are had they not known how to love My Ashley. Neither would Dave or I be who we are.