Again I find myself sick. I'm feeling the weight of the world, the stress of our situation, in my physical body as much as my mental. I looked at Dave tonight and told him I had to sleep. If only for an hour, turn out the lights, close the door, and let me close my eyes. Its was only 8pm. There are moments when I feel as though I can't make it to the next. The burden of transplant weighs so heavy on my heart. I felt myself drifting off into sleep and then I would wake heart racing, panicked, as I realized it is all still real. This is so real. Its not going away. Its not getting easier, its getting harder day by day as we struggle with what to do.
I get the feeling still that they will list Ashley Kate for transplant. I'm not sure what the whole "developmental" packet is about. I assumed since they canceled the neurology evaluations last week that we all understood she was "worth" saving. I'm not sure why they need this packet or what it even needs to say to them. It scares me though. Anytime anyone wants to know where Ashley Kate falls in her development it frightens me. Why? Because I believe those "tests", "developmental consults", etc. to be a bunch of crud. Trust me when I tell you that the fact that Ash doesn't perform on command does not mean she is unintelligent. She may never choose to stack a series of those stupid blocks, but I have witnessed her stack three dominoes end to end in a vertical tower. I CANT EVEN DO THAT! My daughter can though on her own time when she wants to do it. The fact that she never really learned to crawl, stand up on her own, or take steps independently without her walker does not mean she is infantile. It means nothing! She doesn't have to know which comes first in a series of daily tasks to prove she has a functioning brain. I don't give a blank what those papers say. I'm her mom and I'm telling you she is HIGHLY intelligent. She can manipulate a therapy session like no other. She can get adults to do what SHE wants to do in a matter of seconds. Don't tell me she's not smarter than they are. She is controlling what takes place when they are in her play room. If she wants to participate then she does. If she doesn't want to then guess what? It doesn't happen. The child has intelligence. A high level of intelligence. If she could speak trust me when I tell you she would let them know it. My goodness, watch her sign! How easy do you think it is to communicate in a world where no one else understands you? She is the smart one. She is the one who is learning to adapt to the rest of the worlds "handicaps" when they don't get what she is saying. This all makes me crazy. Why do I have to prove to anyone how smart she is?
I don't know how we are going to get through this next part of life. I really don't. When they say they will list her(because I KNOW they are going to say that) I don't know when we will say "ok" lets go for it. The first time we were naive. We thought it would change her reality. We knew we were out of time. 3-6 months left to live. 3 of those months had already passed when she was finally listed. We had to go for it. Never in a million years did I believe we would be in this place again. This time no one can make us naive again. It can't be given back to us. They can't tell us how long they think we have with her. Until this line stops functioning? Is that weeks, months or a year? How much time do we have? We know we are going to choose to transplant. That part of our decision has been made. We don't know when we are going to ask them to list her for transplant. We are trying to search for answers. Nothing is clear at this time. We do not have peace right now. How do we take this happy, smiley, thriving, child and risk it all? I wish it were easier than this. I wish there was an expected outcome. You know like...fixing a broken arm. It breaks, you set it, cast it, wait...it heals. Transplant doesn't work like that. You never know if they are going to heal. If they do you never know for how long. Every single day you live knowing that at any moment, any time of that day, they could lose the very organs they have spent their entire lives fighting for.
I'm spewing words on this page. Emptying out my thoughts. Hoping in some way it will lift the heaviness from my chest. Its not working tonight. I want to lay down, close my eyes, and dream all of this away from my home, my family, my daughter. I want it to stop for us. I want to protect the life of my daughter and the hearts of my husband and the older children. I can't. I can't help any of us.