There are several versions of the stages of grief, some versions have more stages. It is generally used to explain a person's grief when someone dies. The idea of stages of grief can also be applied to diagnoses of chronic conditions...like Rett Syndrome. For myself, I don't know that I ever experienced denial. Shock yes, but denial, no. Anger? Oh yeah; then, now, and I'm sure many more times in the future. "Depression and Detachment", unfortunately, yeah. I don't bargain. And I don't try to find "meaning" in why this has happened to Lucy, because I don't believe there is a reason. It occurs randomly. I would say we started accepting it long ago, however, I yo-yo through these stages all of the time. At the end of the month it will be two years since we received Lucy's diagnosis, so for the most part, I would say I am generally residing in the "Acceptance" stage and we are getting on with life.
But, sometimes I am still filled with rage. Every once in awhile I am shocked again that this is our life, and that this happened to our daughter. And then sometimes I am just sad. I am having a period of sadness right now that is making me pretty glum. I'm sure that the fact it is the middle of February and Lu and I barely leave the house right now is contributing a great deal also, but I'm just feeling blah. And sometimes my emotions mix a little anger in there just for good measure.
I wanted to share a surprising revelation that I have had in the past month or so. Two different ladies that I see often were reading my blog. Both of them commented on feeling surprised when I talk about how hard of a time I have sometimes with just existing in the this world of Rett Syndrome and dealing with all that comes with it. They both said that I always seem to be handling everything so well, and they never would've guessed how I struggle at times. I guess it is good that I present myself in that way, and I guess I do manage fine most of the time. The thing is, when Lucy is awake, the only I option I see is to be brave and strong and "with it" for her. She does not need to see me (or anyone else) cry about her. That is not functional, or helpful. She deserves better. But, the other night, after she went to bed, I cried and cried. Just because I have been feeling sad.
I read an article a few weeks ago, or maybe a blog post, by a mother whose daughter had died suddenly, weeks after birth. Her article was about how eventually the people in her world seemed to think it was time for her to "get over it". They were tired of her being such a downer, basically. I have never felt that vibe from any person in our life, and for that I am so grateful. But the fact of the matter is, I will never "get over" this. That poor mother will have her daughter's absence as a constant and painful reminder of what happened to her, so how could she ever get over it? I have Lucy's presence, thankfully, as a constant reminder that Rett Syndrome exists. Chad and I always say, at least she is here with us. Maybe because death is final, people can move through the stages of grief and hopefully remain in the acceptance stage in the end. The diagnosis of a chronic condition is not final, it is continuous and I think that is why I slide in and out of the stages.
Dr. Sasha calls Rett Syndrome a moving target. So, when we think we are getting a handle on one symptom, something else pops up that we need to adjust and adapt to, and we do, but it just sucks. I have thought maybe this is why I have been feeling down in the dumps. Because of her feeding tube, Lucy now weighs 33.4 pounds! That's almost five pounds she has gained so far and that is wonderful and amazing, and a relief, and makes us so incredibly happy! But...then I think how will I carry her when she gets too big, how will we do things that we do now because I can just carry her? Because even as things change, even if it's for the better, what will be likely to not change is her ability to walk independently. I guess that is probably a fact at this point.
I have been wanting to write a post, but I didn't want it to be whiny, and all I have been feeling is whiny. But as I write this, I am thinking it maybe helped me to understand why I have been feeling so sad. Because there is no end to the difficulties Lucy will face. There is no end to the struggles Chad and I will have as her parents. It will always be one thing after another because that is how Rett Syndrome is and I am just letting that fact get the best of me right now. I don't usually let that happen. Rett Syndrome does what it wants with Lucy, but the Shaffers don't generally let it get us down or boss us around. I'll bounce back.
So, I guess I also want to say thank you to all of the people in our life who stick with us, and support us, and always care about us. Thank you for letting me feel sad, when I'm sad, and for celebrating every little accomplishment, no matter how tiny. Thank you for not insisting I "get over it" and understanding this isn't something that will ever hurt less. Thank you for just being with us, and not trying to push us or pull us into what you think we should be, or how you think we should feel, or how you think we should be behave. Thank you.