Ashley's Story

She will leave fingerprints all over your heart

12/30/2010

I dont know what to say....

Other than the fact that we need to be prayed for. It is taking everything we have inside of us to keep it together today. We have been questioned( and assured there are no right or wrong answers), insulted, tested, and every other thing you could imagine this morning. Or maybe you can't imagine. I am trying so hard. So very hard.

Let me ask you this, how would you answer this question "on a scale of 1-10 what do you think your stress level is at when Ashley goes through the transplant?" Are you serious? Could you give us a little higher number scale to choose from, because I'm pretty sure you would be feeling a little stressed if your daughter was fighting to live too. No right or wrong answer? Then what are you writing on your little pad for? This is ridiculous. ANY parent would feel the effects of stress in this situation. ANY!

I don't know how to do this anymore. I really don't. I'm too old, to experienced in hospital life to kiss you know what anymore, BUT I WILL KEEP DOING IT. That is the simple truth. I'm not intimidated by the protocols, procedures, or poop that goes on here. Sorry. They want us to be honest but it is not possible. At this point in time we have to guard our words and our responses very, very carefully because every word we utter is being picked apart.

Our meeting with the transplant surgeon proved to be the hardest one yet. So difficult to keep my mouth shut when he was obviously, point blank insulting us. It was awful. AWFUL!!! We have to be prepared for the very real possibility of allowing Ashley Kate to die here in Omaha, NE. "Can you live with yourselves for the next 30 years if things go the other way and she dies here. We WONT transfer her out. You have to make the decision that you can live with those facts."

On the plane tonight I stared at the face of my youngest daughter and the tears poured from my eyes. This is the hardest place we have ever been in. The decisions we are being forced to make are tearing out my heart. They keep telling us we have to choose. There is no choosing here. We have been placed in a nightmare of a situation and there is no choice. Our daughters body is so broken that without this transplant her days will be very, very short on this earth. Choice? There is no choosing this. We are doing what ANY parent would do. We are fighting for her life. Fighting for it.

"Do you think you can live here again for a very, very long time? Can you do this again?" What are you asking me? Would I put myself above my Ashley? NEVER IN A MILLION YEARS. I will do whatever I have to do. I don't matter in this situation. Quit asking me these questions. I will keep kissing you know what to whom ever I am told to if it means you will help my daughter live. I will put up with anything you throw at me. I don't want to, but more than what I want is that she deserves to LIVE. If there is any possible chance at living then she deserves that chance.

We are emotionally drained. Completely spent. It feels so good to be home, but all I can do is cry since we got here. Blake and Allie are such great kids. Such amazing young people. To see them show kindness, tenderness, care, concern to their little sister melts my heart. I'm so proud of who they are. Question me about my other kids? Seriously, you have no idea. They are AMAZING and they won't accept anything other than this second transplant for their sister. They know how hard it is when I'm gone. They know how much she hurts. They know the stakes. They also know how great she is and they want her to live so very much. We aren't doing this to them, we are doing this together with them. Blake is adamant that God did NOT give her to us to just quit on her. He is convinced that God chose us for her because He knew we would never stop fighting for her. I think he is right. She deserves so much more than what makes life comfy for all of us. She is the one who does all the hard work. We are just her cheering section.

Its going to be ugly. There is no mistaking those facts. This will be the impossible being made possible for things to turn out the way we hope. I happen to believe in a God who specializes in the impossible.

I say all of this to say this...please pray for us. There are days when I have no words to utter and only tears come as I attempt to pray. We are hurting. We are all so hurt by what is going on at this time. Still we are blessed and its those blessing we try to stay focused on each and every day. Tonight we are tired. Afraid. Unsure. Empty. But...we are home and our sweet Ashley is with us. That is what we are.

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