Tag Archives: cerebellum

How am I doing? (Glenda)

KB is so sweet and innocent.  She has the voice and face of an angel and the kindest disposition.  Truly.

I miscarried my first pregnancy and was a nervous wreck throughout Katherine’s.  I knew I was going to feel so much joy and relief as soon as she was out of my belly and finally in my arms. What I wasn’t prepared for was the unbearable pain motherhood brought. A flood of emotions washed over me right after her birth and I remember crying so much, even asking myself “what have I done?”

It was the first time I understood – truly understood – that if anything ever happened to her that a part of me would die, that it would result in my complete undoing, and I would never be the same again.

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She is reaching the stage where she wants to do everything by herself. She even pushes my hand away when I offer her much needed help with eating, holding her so she won’t fall, etc. Today she told me she doesn’t need my help anymore, but the harsh reality is she needs it increasingly more because whatever is affecting her cerebellum is getting worse with each day.

I hear myself saying “be careful” too often.  I am having a hard time figuring out how to give her the independence she desperately desires without letting her hurt herself.

She has lost her ability to climb.  Not all that long ago she was climbing up and down on the bed and couch; now she asks for help just to get up.  She isn’t interested in using her walker anymore.  And just the other day I found her resting in the hallway as she crawled between our bedroom and her playroom.  

She chokes more when drinking and eating – another sign of progression – which will likely require a feeding tube in the future.

She falls more frequently when sitting and crawling.

As you can imagine, this is excruciating to watch, much like a child watching their parents slowly deteriorate before their eyes. But this isn’t my mom or dad. She’s my baby. And there’s nothing I can do about it at the moment except what we’re already doing. It is such a helpless, sad feeling. Of course it isn’t fair, but “fair” doesn’t have anything to do with it.

Katherine looks healthy in my photographs. Honestly, she is “healthy” and happy in the day to day sense, which is a blessing. However, my photographs don’t show the falls, the tremors, the tears of frustration, or the pain we feel as we helplessly watch her progression slowly unfold before our eyes with nothing to offer in terms of treatment, except for love and reassurance. Some days I try to convince myself this will be enough; other days I know it can’t stop what is happening. Mostly, I pray for time, understanding, a cure. Or to wake up from a nightmare and none of this be real.

And then I remind myself that I have to take this one day at a time. Otherwise I will be consumed by my grief and miss the precious moments we have with her.

How am I doing?  I have no idea, honestly.  I am just doing; just breathing; just trying not to think about the future.  There are times when I cannot stop crying.  Moments when her beauty and innocence take my breath away and I don’t understand how I am ever going to find the strength to watch her feel pain or go blind or the others things that could happen. Things I don’t even want to think about.

One day at a time; one moment at a time; one breath at a time.

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