I didn't have time to post Tuesday two weeks ago. It was a crazy day filled with all sorts of madness trying to fit everything in that needed to be done before we left on the band trip. Once we returned home, I just couldn't "talk" about the results we received about Keith's scans. I have been taking time to heal and/or deal with the news.
I'm still not sure how exactly to "feel" about things. For a while, I have been grieving. Grieving what? Everything. I have been filled with so much sadness. I have grieved the loss of time. I have grieved not getting good news again. I have simply grieved. There was one night when I could not sleep. I guess that was when everything began sinking in, and I was still so exhausted from the trip. I couldn't even pray. I could only cry out to God. I know that is a form a of prayer, but I was wanting to pray so badly, and all I could do was cry.
I'm not crying at night anymore. I guess I've dealt and that has made room for healing. Until today, I wasn't feeling like my world had tilted sideways again. Today has been a series of doubts and frustrations. We don't know anything about Nick's PET scans yet. We may not know anything until we get to Birmingham on Thursday. I do know that there are many doubts and fears that have surfaced. I'm having trouble letting go of them. I am afraid that we won't get good news. I'm afraid that the PTLD/lymphoma has changed, and is no longer viral driven. If that's the case, then it would mean that it has turned into a truer form of lymphoma. That opens up a whole new realm of possibilities. Possibilities that are unknown and scary.
I am also so frustrated by the educational system and how it deals with children who are special needs. We are meeting with Nick's IEP team at the end of the week to plan out his courses for high school. I am filled with such uncertainty about what to do and what is best for Nick. I am worried about making the wrong decision.
That is a tough one for me. In all of the years I have been Nick's advocate, I have always tried not to look back at the decisions I've had to make for Nick's care and education. The pathway is usually pretty clear. This time I just don't know. The worst part is whatever decisions Keith and I make for Nick can not be easily changed...if they can be changed at all. The decisions we make will affect him for the rest of his life. Nick's complicated medical issues and learning issues make it that much more difficult.
I am tired of always having to pass along bad news. I'm tired of trying to stay upbeat and positive. I'm tired of being sad. I know sometimes we all get tired. I guess this is my time. Today just hasn't been the best day. I'm figuring tomorrow will be some better...at least I hope so. We will be getting our new central heat and air. Woohoo. I wish it didn't cost so much money though. We'll also have to see about having our car towed home tomorrow. It died earlier today and Keith hasn't called for a tow truck yet. Today was one of those days where I just wanted to pull the covers over my head and wait for it to pass.
I'm dreading Thursday. I don't feel strong enough to withstand bad news. I wish I did. I wish for so many things.
Thanks for listening to me ramble. I started not to post tonight, but I thought it might help me work through some of it.
Until next time,