It has now been five years since I really entered the land of the grieving and five years ago I had no idea. Honestly, I spent a solid three years in denial, without even being aware that there was a grieving process and that I had anything to grieve. After all, my mom didn't die. Claire didn't die. It seemed like the appropriate response would be to be thankful for this, right? I remember the day we got the diagnosis for Claire, I was so genuinely joyful that it wasn't a death sentence, something that we had feared. Last week I was speaking with a friend who was struggling to pull herself together and push on. She too has had a life altering set of circumstances that have left her with some physical challenges. She said to me that what she has was not nearly as bad as what Claire has and that she shouldn't feel so bad for herself. She had articulated so clearly the elephant that is often in the room when I am with others. For some reason, we tend to compare our trials to others. If what we have isn't as bad as somebody else, then shouldn't we just get over it? No. I think this happens a lot in rettland. I have friends who's daughters walk, which is amazing! I have heard musings of how hard it is to be frustrated when they have friends who are in the hospital with seizures or feeding problems. All this to say, my new answer to so many is to grieve. You don't have to have it worse than everyone else in order to be entitled to grieve, you just have to have a loss, that is the only prerequisite. I really wish that somebody had told me it was alright to grieve years ago when we were in the earlier stages. So to any of my friends not as far down the road to rettland, it is alright and I highly recommend it. I do think that grief had a pretty negative tone in my head at first. In part it has to do with my upbringing within the church. There is a need to always be praising and grateful, while those are very good and important, the Bible does also say to 'mourn with those who mourn' but that really gets a lot less publicity than the everything is fine message. The last two years have really been a much more active part of the grieving process for me. I can look back and see that there were periods that were full of anger, bargaining, depression and acceptance. But with my situation, there is no completion. Claire is not dying and she is not really getting better. A few weeks ago a friend asked me if I felt like there was a place that I would reach, that would allow me that final acceptance. Sadly, my answer was that once Claire passes, I will get there. Hopefully, that won't happen for a really, really long time. In the mean time, I think that I have adapted to go through the whole grieving process on a daily basis. On rough days I think I might go through it two or three times and sometimes it might span a few days. It looks like this, Claire screaming her head off, thoughts in my head are along the lines of, this is typical she is five, kids are hard. Then the screaming evolves into heartfelt sobs, I begin to see her for the normal kid she is, trapped inside her body and get mad, why?!?!? this is typically when I have my WTF conversations with God. Then she starts to calm, I think to myself, if I can just get her walking, talking or more regulated, then we can get through this. Once she is better, I turn on pbs and go hide in my room, look at baby pictures and cry my eyes out. Eventually, I hear the girls laughing in the living room, which brings so much joy to my heart, I wipe the tears away and go and enjoy them. The point is, that allowing myself to go through and feel the different stages, has really allowed me to feel more in general. I have given up on trying to be the strong one who is really alright with it all and have come to rest with the notion that it is hard and not alright, yet everything is going to be fine, sort of....you can see that it is a work in progress.