Friday, December 28, 2012

How are things going?

I have to admit I missed this post when it first came out. Yesterday I saw a couple of reponses to it and had to contact Marta for permission to repost and have her be a guest blogger.
You can find out more about Marta, Mike and Caroline Lily by visiting:

 http://ourcarolinelily.blogspot.com/

"How are things going?"

I never really know how to answer that question without burdening people with what is essentially a conversation stopper.
The truth? Some things get easier. Or maybe we just get used to dealing with them. Other things seem to get tougher as Caroline gets older. Another truth? The sorrow never fully goes away. It comes in waves. I've just learned to tuck those feelings away where nobody can see them. I especially never want Caroline to sense that her condition makes us sad.

I'm not the same person I was before I became acquainted with Rett Syndrome. I don't have the same dreams. I don't have the same patience or energy. My perspective and outlook have certainly changed, perhaps for the better and perhaps for the worse too. Strangely though, I like the "new" me. I'm more honest, more authentic ...and so are my relationships.

We want to give Caroline the very best life. At the same time, we're coping with a reality that is emotionally devastating and physically exhausting. And we're up against this reality every single day. There's no escaping it. This is not just a "phase" in our lives. It is our life. There are a lot of complex pieces to juggle. There are stresses most parents will never have to deal with or think about. A painful example is my constant awareness of Caroline's shortened lifespan. I try to use that information to celebrate her life, but I still think it's unfair and unnatural to know that I will outlive my child.
Mike and I often feel like we are struggling to just make it through this life in one piece at the end. I hate admitting that.

Given the challenges we continually face on a regular basis, we do our best to avoid additional stress that could easily tip us over the edge. We often end up having to cancel plans when Caroline catches even the slightest cold. Coughing often results in vomiting because Caroline has acid reflux, sensory issues, and weak muscles. We've had enough experience with messy vomiting sessions to want to avoid them outside our home. Trips are tough too. After a few taxing experiences this past year, we've made the decision to avoid long car rides and short overnight trips. Being in a car for a few hours exacerbates Caroline's involuntary movements. These movements become more frequent and spastic. They also continue into the night. They keep her from falling and staying asleep. A sleepless night, in turn, messes with our own ability to recover from an already exhausting week.

What keeps us going? Mike and I have each other's backs. Humor is a huge part of our lives too. We also rely on our parents a lot. We have a great support system. Nursing assistance is absolutely crucial. Connecting to other Rett families is a lifeline. Working out feels like therapy. My career is also important to me--it's one of the few links I still have to my "old" self. 
Despite Rett Syndrome and all that it has stolen from us, when I watch Mike and Caroline, I still feel like I hit the jackpot. The good moments definitely trump the difficult ones.


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