I sit here tonight so grateful to be in this place. This place that I sit this year. Approaching another holiday with Ashley Kate. Its such a different place than last year. Not a lot has changed. Not much more than my attitude. My acceptance. My approach.
I was so frozen, so afraid, and so panicked. I didn't know how to close my eyes at night. I couldn't stop the tears from falling. I wore the hurt daily. Not intentionally, but helpless to shed it. To read the written words of my heart bring me back to that place. I can feel the ache. The abandonment. The betrayal of all I thought her life was to be. It was raw. It was real. It was shattering.
This year the circumstance has not changed. Not one bit. We still face the unimaginable. We still have doubts about our choices. The timing. The outcome.
I've learned to be thankful for a few things that I couldn't be thankful for a year ago. Some of it may sound a little strange, but this year, in this place, I am thankful for these things...
CVC's - Central Venous Catheters. I used to HATE them. All they represented. All the danger. All the risk they posed to her life. Now I can say I am truly grateful for them. Without them she would not be with us. Without them we would have no hope.
TPN - Total Parenteral Nutrition. It keeps her alive. Sustains her. Nourishes her. Allows her to grow. To mature. To develop. Every night as we hang that bag of yellow liquid I am thankful we have it. I can be thankful for it because she is no longer dying because of it. Once we added...
OMEGAVIN - her liver is functioning normal again. I can't express how deep our gratitude runs for those little glass bottles of white liquid that infuse into her veins each night. It balances it all out. I don't know how it works or why it works. I'm just GRATEFUL that it does work. I can't ask for anything more than that. She is not dying from liver failure. She is thriving.
This next one is a big one. Its HUGE. Its taken me a long time to get to this place, to admit, to view it through these eyes, but I think I can say that at this time, in this place that I am in tonight I can say...
EX PLANT - Wow. In those days, when this all began, it was the WORST thing that could have happened. It DEVASTATED us. All of us. I hurt so deeply. I cried so hard. So hard I was ill. Physically I became sick every night when I allowed it all to rush over me in the darkness. Nothing in my world was alright. NOTHING.
As I listen to her giggle in these moments as I write I CAN be thankful for it. It saved her life. The transplanted bowel was killing her. The bowel in combination with rejection and the thymo treatments we gave trying to save it were killing her. I sat by her daily and watched as she struggled to stay alive. It was the worst time of my life. The absolute worst. I can't imagine it being any harder than it was during those days. Once we took the bowel out of her she began to slowly, and painstakingly come back. It was not a quick or easy process. It was long. It was hard. It was scary.
In this place though I can see how God used that ex plant to keep her with us. He allowed that bowel to be removed successfully. He kept her safe during those horrible, horrible days. He brought her back with a renewed zest for living. Her joy is FULL. It is CONTAGIOUS. It is everything I mourned it would never be again and MORE.
There is a freedom in living that comes from not having to be afraid of rejection on a daily basis. I don't have to count and keep up with every cc of fluid that escapes her tiny body. I don't obsess over every runny nose, temp, or emesis. Instead, I live. I allow her to live. I watch her play and laugh and experience life with all the joy she can muster.
I know it may be hard to understand how I can be thankful in this situation, but on the other hand how can I NOT be thankful. Look at her. Look at all we are being given. Being blessed with. Each day is filled with happiness. She giggles so loud and so hard that we can't help but giggle too.
There are hard days ahead. None of that has escaped me. I can't even imagine being back in the throws of life and death with my little girl, but I know that I will indeed be there again. I know this. Its just that when I think of all that I am thankful for this holiday season these are the words that keep coming back to me. If I had to sum them all up...CVC's, TPN, OMEGAVEN, EX PLANT...what I'm really trying to say is...provision.
God in all His wisdom, in all His mercy has PROVIDED. I am truly thankful for that. Truly. Beyond explanation.