Awoke to a Positive...
that wasn't so positive.
The repeat blood culture again grew out yeast from one of Ashley's lumens and I had been so desparately hoping the first one had somehow been just a contaminate. Unfortunately, at 4 am I was told the news...my heart sank. Yeast is an infection she has never had in the line and its an infection that short of pulling it out may never clear. We all know that pulling this line is not an option for us and so we will treat through the infection. She will remain on an anti fungal indefinitely until a negative culture can be drawn. I'm so afraid of how that will affect her chances of ever being allowed to go home again. My heart can't bare the thought of her spending day after day after day inside the four walls of a hospital room. Ashley needs to live. She needs to have the opportunity to go for her drives in the car. She needs to feel the sun and the breeze and the rain all against her skin. She needs to have the chance to listen to the ball come off the bat and to hear the cheers of the crowd and the sounds of her friends running past her with their giggles. Even if only from the inside of the car. It brings her so much joy to be in the world and not kept from it.
My mind is full of all the things there is left for her to do. She has so much living to pack into whatever time God allows her to have. She can't do any of that from in here. She has to go home so that she can keep living. I'm remembering the JOY she experienced at the Splash Park last summer and the smiles on her face as the water "rained" down all over her. I dare say there wasn't a child who enjoyed it more than Ash in the whole park. We are so looking forward to taking her back to be rained on as soon as its warm enough. She's got things she wants to do.
The NP came in tonight and we began to talk about the way we take care of Ash and how we allow her to live outside of the hospital. We talked about how blessed we are to be able to accomplish all of these things for Ashley Kate and how desparate I am to figure out how to keep on keeping on. I don't want for anything to change for her just because we are now forced to stare into the face of all that is taking place in her body. Make no mistake, we knew these things would eventually happen. Dave and I have always known that we would be powerless to stop any of it. What we do have power over though is how we choose to allow her to live through it. We discussed the differences between pallative care and hospice care and how we might need to begin seeking out a pallative care team to help us accomplish what we wish for Ash's life. We at least need to be thinking about it. These are discussions you never imagine having to have when talking about your 7 year old baby. Hard, hard stuff. Emotional. Heartbreaking. All I could say through my tears was "she is such a great kid. she's so amazing." Its so hard for me to even imagine a day coming that she would no longer be in.
I washed her hair tonight and I sat behind her on the bed as I brushed it out. I love her hair. I really, really do. I don't know how long I sat there pulling the brush through it and listening to her breathe. Its a beautiful sound. Have you ever just sat and concentrated on the sound of your daugther's own breaths filling her lungs? There is peace found in that sound. There is hope found in that sound. There is something so soothing...so comforting...so healing...to be found in that sound.
I still hope for so much. There is hope to be found. I have not given up and I do not believe that this is the end. I think it may be the end for some things and the beginning of some very scary things, but there is still time to do so much. I believe that there is time.
One of the hardest parts of all of this is knowing that the hearts of the two most precious people in my world are going to be broken. When I cry in the dark its over the pain that my big kids are going to experience inside of their hearts. They both text me all day long checking on their baby sister. I hear the resolve in Blake's voice to get something done. He wants answers and solutions. Thats my son! Take care of what needs to be taken care of and bring her home. Oh, how I love the fierceness of his love for Ash! My beautiful Allie sent me a text asking me if Ash was going to die. Between her second and third period this is what her mind was consumed with. As she sits in class day after day she is wondering if the little sister she begged for and waited for and prayed for is coming home again. Its almost too much for this momma's heart to bare. I told her not today. I told her we were all dying at some point. She, and I, and Ash, and everyone she knows would die at some point. None of us know when that day will be and that I didn't want her to worry. I assured her I would be honest and tell her what I knew when I knew it. How my heart was breaking. What do you say to your children about days like today? Do you tell them that her body is getting tired? That she won't be able to keep going forever? That the day is coming when her heart will stop beating because the body she was born with has never worked? Its different now than when they were little. My kids have grown up and they want answers. They want answers to questions that make my heart stop when they ask them. I spent most of yesterday feeling like I was being punched in the gut repeatedly as every single discipline came into her room sharing what they knew. Do I inflict the same pain upon the children I have spent my life protecting? There is no training for times like this. When I became their mom I never knew that this would be included in the job. Breaking their hearts is destroying me. I don't think you can ever properly prepare for these conversations.
Again, I want to remind everyone of this, Ash is not dying today. At least barring any major turn of events, she is not expected to die at this time. What is happening though are the things that will bring about her death are coming to the forefront of our discussions. We are being forced to stare into the face of the reality that up until now we had only had to know was one day coming. Things are changing in our world, but the end of it is not happening today. Its just getting harder.
Thank you so much for loving our girl. I simply can never repay you for loving her the way that you all do. My heart is so humbled by the words you write, the encouragement you send, the prayers you whisper. My plan is to bring her home as soon as we can, to make her days count as much as possible, and to love on my people as we begin this leg of her journey. Before you know it you will be seeing my 7 year old beauty on the other side of the fence cheering for the Pirates and that amazing #10. We will be back out there.