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 March...so I'll be double grandma within 6 months time. A grandbaby for fall and a grandbaby for spring...my 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

10 comments:

  1. Oh my dearest jennifer. What a great post and wonderful reminders. It gets so easy to go abouti our busy lives and forget to touch and observe. Love you.

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  2. Dear Jennifer,
    I won't give you the standard line about how sorry I am that you have such a debilitating illness.
    I would much rather tell you about being a Nana. I have 3 punks who I just adore. Bella is now 7 and so grown-up. It seems like yesterday that I touched my lips to her beautiful head. Matt is now 6 and just the best little boy I have ever known. He is kind and gentle and caring. He makes me laugh and he is missing his 2 front teeth at the moment. Last but not least is Zach. he is 14 months and a little bit of a hell raiser. When he get mad he slaps the sides of his thighs with his hands. It makes me laugh uncontrollably. Being a Nana is just about the best thing in the whole world. Mind you, I don't like kids very much. By that I mean, other people's children. Since becoming a Nana, I have mellowed a great deal and find myself smiling at cute little ones in the store and in TV commercials. It's a totally different feeling when they look at you and you know you can say yes to the cookie because that is what Nana's do. I get to buy those extra little things that I know will make them happy and I don't worry about them "Being Spoiled". You will love being a grandmother and the love you will feel for your daughters will just overwhelm you. You will be astonished by the fullness of your heart.
    I know you will never allow some stinking illness to get the better of you. When you hold those beautiful babies in your arms, press your lips to their heads and their hands and their toes. Take in that wonderful smell of babyness. It will make up for the loss of touch in your fingers.
    Thank you for the reminders of everyday life. It is so easy to get caught up in living that one forgets about life.
    Take care of yourself and please keep me informed about the Nana thing.
    Hugs and Kisses
    RoseMary

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  3. i can tell you, being grandparents changed my parents in ways i never imagined. i see them so joyful now- actually prioritizing things other than work, actually just smiling in pure joy- no, i'd never seen that before. also, i see them enjoying the young ones instead of worrying and trying to mold them into impossibly perfect children.
    the farby's is beyond awful, we've spoken of it before. but clearly you have a future as a photographer! jayzus those pix are so so lovely!!!
    btw, you know im a big believer in being enraged if you feel like it, depressed if you feel like it, pitiful if you feel like it. all my life i tried to force myself to be something im not (the perfect child), and now that i embrace what i am, well, im the best me i've ever been!
    so maybe if you give in to the bad feelings, you'll be able to process them and go from there.
    or not. im no psychiatrist. whatever you choose, im rooting for you.

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  4. I have always been a strong believer of the saying... when one door closes another door opens. We never know what the future holds (I speak from experience). You are such a lucky lady with two new grand babies on the way!

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  5. beautiful post. my prayers are with you and your family!

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  6. Thank you for this transparent and thought provoking post. It's a simple reminder to take each day as it comes and live it to it's fullest; never taking anything for granted! Praying you will find joy in the days ahead with your family around you and new babies to adore! Blessings and Prayers!

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  7. I am moved by your writing and feel like I already know you so well. Though I am happy for the gains in your life (new grandchildren) I am sad for the discouragement in your daily life. You are obviously very courageous but when we are robbed our simple pleasures, it is only natural to feel fear, anger and doubt about everything now and in the future. I will pray for you, Jennifer, that somehow there is a way around all this and mostly, a way through. God bless you.

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  8. God bless you Jennifer.

    What a blessing to share this time with your daughter, I haven't had any of my kids got through those kinds of things yet, but I was one of those kids and now I'm sorry for all the grief and hardship I put my mom through. But God also has used those things to shape me and now I think it gives me a different perspective to add to life.

    Blessings on your daughter, and her new life, and her new passion for sewing! :)

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  9. As someone who struggles with arthritis I sometimes feel like it robs me of daily joys. So I have decided instead of trying to think of it this way I will instead replace what is lost with other kinds of joy! Sure sometimes my wrist crumbles under the weight of my camera, but I'm able to capture beauty behind the lens that others miss. Someday my knees will give out, but I can still take pictures and I can still read, my fave activities. life has something in store for us that will take the place of whatever we have to lose along the way....:) thanks for sharing your insight with us! ~Mary

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  10. As someone who struggles with arthritis I sometimes feel like it robs me of daily joys. So I have decided instead of trying to think of it this way I will instead replace what is lost with other kinds of joy! Sure sometimes my wrist crumbles under the weight of my camera, but I'm able to capture beauty behind the lens that others miss. Someday my knees will give out, but I can still take pictures and I can still read, my fave activities. life has something in store for us that will take the place of whatever we have to lose along the way....:) thanks for sharing your insight with us! ~Mary

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