Thursday, October 06, 2011

At Your Fingertips

     Em and I and KW have traveled a very rough road together. Her early teen years were extremely troubled, and there were lots of late night talks between my husband and I about what on earth we should do differently...what in the world are we going to do about her? Where did we go wrong? Feeling like failures. Calls to the police. Missing persons reports. Sighs. Yelling. Exasperation. And tears of frustration.
Now Em is expecting her own child. She has settled down and she has discovered a new passion, sewing. She sews for hours....seriously. HOURS. Experimenting with different patterns for baby clothes, making curtains and pillows for the large room she will share here with her baby, who will arrive via induction on the 24th of October. A tiny gift this Autumn, whom I can hardly wait to hold. My other oldest daughter is due in I'll be double grandma within 6 months time. A grandbaby for fall and a grandbaby for two most favorite times of the year....incredible gifts...

Em looking at her recent sonogram pictures
(love this picture)
    Lately I've spent more time noticing. I'm not one to live behind my camera lens, but today there were things I wanted to capture.
noticing light in the kitchen
little white dresses we use as kitchen valances
our middle son Christian's huge shoes by the sofa

      I was diagnosed with Fabry disease almost two years ago. Sadly, I am now loosing the feeling in my fingers. It is the same neuropathic damage that has already happened with my feet. So I know what is coming. It  begins with the softest things. A child's skin, kittens, the underside of mushroom caps...and it progresses. For now it is just the tips of my fingers. I don't know how fast or how slow it will progress. I just know that I am struggling with it.  I remind myself that there are others that have it so much worse than me...and that I shouldn't complain too loudly. I talk myself out of tears. I think about selling all of my jewelry making supplies. I consider giving up.
     I won't lie to you here and say I'm coping well. I'm not. Not right now anyway. I take it one day at a time. I'm angry. I feel grief. Uncertainty. I feel like I better hurry up and touch everything and burn it into my memory. I cry. I allow myself to feel sadness. I allow myself to feel anger. But I keep it to myself for the most part. I'm not here to elicit sympathy or make you feel sad for me. I am here to gently remind you to relish the little things. Touch everything you can today. Use your fingertips. Really notice it. Touch your child. Caress your own face. Run your fingers through the grass, crumple leaves, hold soap bubbles in the sink, press the tips of your fingers into the underside of a mushroom. Relish it. 
And I'm going to keep going. Because, as I also say in this post in 2010, I don't stay down for long. There is just too much to love about living in the moment...

our  little fella enjoying the back yard today