Heavy

That pretty much explains how it all feels tonight. The weight of our world is crushing me.

I spent most of today in Shreveport with Ashley Kate. 9hours to be exact from start to finish. That in itself is exhausting. When you add to that the heaviness of all the discussions and decisions it totally exhausted me. I'm emotionally spent at this time. My nerves are shot. I live on edge most of the time these days. Its been a rough few days since speaking with transplant. Really rough as I realize that my world is crashing down around me. All that I love and treasure and fight so hard to protect is being shaken as I stare into the face of this situation. Ashley's body is broken and it is going to wear out. The infections she currently has are ugly ones. Very, very difficult to clear. We are being pushed closer and closer to listing her for transplant. A very risky transplant that I'm not confident she will survive. That shakes me to my core. Knowing that the risk of this operation is so high scares me so very much.

If you asked me last summer, immediately after ex-plant, when I wanted her listed I would have said,”As soon as possible.” Obviously, Dr. G was right when she told me to take some time, talk over the pros and cons, don’t jump into that decision. If you asked me today when I wanted Ashley Kate to be listed for transplant my answer would be very different. I want Ashley Kate to go to transplant when all of her good days have run out. I’m don’t want to give up even one day that she could spend at home laughing, playing, and living. The tricky part is knowing when the timing is right. We can’t allow her to get too sick that she is unable to be listed. I wish I knew when this was going to take place. We have no idea how long it will take to get the call that organs are available once she is listed. If I knew it would be months then I’d list. My fear is that they could become available before I’m ready to go.

There are more reasons than I can count as to why I’m not ready. Mainly, the possibility of losing her. It is very, very high. Another one is her lack of understanding. I can’t bare the thought of her feeling betrayed, hurt, trapped, confused by it all. I also struggle knowing the physical pain my daughter will have to experience. I’ve made it my job to spare her from as much of it as I can for as long as I can remember. Regrets. I want her to experience the world, have a childhood, laugh until there are no more laughs to come, and LIVE. When you add all of those reasons to the idea of abandoning my two teenagers for months and months and leaving them without a mom the emotions overwhelm me. Honestly, I can’t come to a decision at this time. I feel as though circumstances are forcing us into a corner where ultimately our only way of getting out of it will be to hand her over for transplant. If I get really honest with everyone I can say that I’m afraid of the blame game entering into our lives. We are on different pages with this and if we don’t go and its too late I don’t think Dave or the kids will ever forgive me. Bigger than that I won’t be able to forgive myself. Being left to forever blame myself and carry the guilt for not trying. If we do go and she is lost or has to suffer and then is lost I am afraid I will blame Dave for wanting us to go. This has been the hardest thing we have ever had to face together and we have had to go through some very hard things before. We are very united as parents. Always together. Almost always agreeing which way we approach parenting. This issue is tearing us apart. Its not easy to talk about. Not easy to agree on. Not easy. Neither of us want to lose our daughter. We are unable to envision a world without Ashley in it. Maybe the time will come when resign ourselves to those thoughts, but that time is NOT now. We SO desperately want her.

I know how easy and tempting it is to say, “Trust God. “ “Where’s your faith?” “It will all be okay.” Many, many people share those words with us often. All of those are true statements and I understand what your saying. BUT…its not so simple. When you are thrust into an impossible situation like we are in, although our faith in God is strong, its just not easy.

Ultimately I KNOW it HIS choice and her days have already been recorded. Still, my heart aches and struggles with knowing when we should say, “Ok, lets go for it.”

Currently, Ashley has three different bugs growing. A gram positive and two gram negatives. One of the bugs causes us all to tremble inside knowing that it will be only by a true miracle that we can treat it effectively enough to kill it. Honestly, a miracle. We need one. If we can’t kill this bug it will kill her. With or without her central line. If we remove her line, which is the recommended and only for sure treatment, she will die from lack of nutrition a very slow and painful death. It also removes any hope of transplant from us without this central line. If we leave it in place and are unable to kill the bug then it will more than likely take her from us as we battle an ugly sepsis. Listening to all of this today while my daughter happily played angry birds and giggled in her chair as I sat in the exam room with her seemed so surreal. This isn’t really happening is it? She looks SO amazing. She appears to be winning this battle against her line infections. Appears to be. When you view her continued blood culture growths then you know in all reality she is not winning. We have taken a total of 6 blood cultures in a weeks time and ALL 6 have come back positive despite being on antibiotics for that whole week.

This leaves us with very few options. None of which are good. I came home with her and just kept keeping on. I started her new med schedule and here I am up again at 4am to run more meds. The schedule on the front of the fridge lays out an 11 hour a day infusion schedule. 11 out of 24 hours a day I am infusing antibiotics into her blood stream. The earliest hour starting at 4am and the latest one finishing at 12am. Something has to be started at 4, 5,7,10,12,1,3,8,9,10,11. This is in addition to her TPN that runs for 18 hours a day and her Omegaven that runs for 12 hours. The trickiest part being that her Omegaven cannot be run at the same time as any of the above meds for those 11 hours. It is literally an around the clock schedule that I am doing my very best with as I continue to parent Blake and Allie and have them where they need to be at the right times they need to be there. Life is very, very complicated for me this week.

With all of that said I realize that I would do this, have this schedule, a thousand times over as long as it means I am still Ashley Kate’s mommy. Nothing is too hard as long as that precious, beautiful little girl is sleeping soundly, feeling safe, without a care in her world, in the next room down the hall. That is truly all that matters.