No other way

Ashley Kate accidentally discovered she had two dinosaurs yesterday.

I don't know how to be a mom any other way than this. A mom who fights for quality every single day of her life. A transplant mom who refuses to give in and raise her daughter in a hospital. I just can't give up the dream, the goal, the hope of raising her outside those walls. In our home, her rooms, her life.

It was love at first sight.

Ashley Kate deserves to live a life at home. She is such a happy, playful, child. So full of love. So full of joy. So full of promise.

They hugged, they hopped, they...

I fight, and I fight hard to give her all that we believe her life should be. I hate to spend one more day than absolutely necessary in a hospital. I won't give those days up easily. I won't just sit by and wait and wait and wait while her life slips by day after day inside of a hospital. I just don't believe she was created to grow up there.

kissed.

I despise knowing that we are headed back. I absolutely hate what lies ahead of us. The struggle, the fight, for life and for quality. I cry each and every day as I look around our home, watching Ash play, listening to her interaction with her big brother and big sister, seeing her eyes sparkle as she sits on her daddy's lap, because I know its temporary. I also know its what we are fighting for. This is worth it. Worth the struggle, the pain, the fear, the worry. This life of hers, here in our home, is so worth it.

and they were loved...very, very, well.

Still, it haunts me. I just can't surrender her time to a life lived in a hospital room. I can't. It hurts so very much knowing we are leaving home for an indefinite amount of time. It took us six long, scary, lonely, painful months to make it home the first time. Every single day I woke with the same goal in mind...home...for Ash...for our family.

I don't know how to be a transplant mom any other way than the way that I am. It makes everyone around me crazy, and I realize that. Still its what I am. I have to fight to bring her home. I have to. This is where she is her best. Always has been. She heals faster, lives fuller, and stays healthiest. We just have to survive another round to get back to this place she loves so very much.

I know there are moms who do this better than me. Its the truth. I watch them with their ability to be patient, to wait, to not ask, to just sit day after day after day. I don't know how to do this life like that. I ask questions, I expect answers, I plan on leaving from day 1. I just do. There are days when I wish that I could do it their way, but I'm not them. I don't know how to be them. I just know how to be me and I fight to keep my family together. Its what I do.

I'm praying that some how God will give me the strength , the ability, the patience to walk this road again. I know how ugly the days away can get. I've watched her battle time and time again as I stood alone next to her bed. I have felt the isolation and the despair of the PICU. I have signed consent time and time again without the time to find peace from the Father about the situation in I am consenting too. I fear what lies ahead. For Ashley Kate and for me. Its the hardest thing either of us has ever done. Transplant. Its so very hard. My greatest fears are losing. Losing my daughters life and losing the me I know that I am.

I'm struggling tonight. Really, really struggling as my beautiful little girl lay snuggled up with those dinosaurs next to her. Oh, how she loves them. Oh, how I love her. Oh, how He loves me. If only love could make the rest of this disappear. If only it were enough to heal her broken body and my broken heart.

In the beginning Dave and I prayed for one thing. Even before we ever laid eyes on her we asked for this. That our tiny girl lying in that NICU could do just one thing. Give and receive love. Its all that mattered. Thank you God for giving us the very thing that mattered most. She does love and she knows she is loved. There is no other way I could do this.