Wednesday, November 11, 2009

The Wall

If you've ever run/walked in a marathon you know what "the wall" is. Mile 20 of 26.2. You're warned not to try to compute the distance you have remaining because your body is so tired at this point, it is too hard to do simple math. Kelvin and I walked the Rock n Roll marathon in San Diego in 2001. I had trained to walk and he had trained to run but injured himself before marathon time, so he walked with me. We were warned about "the wall." Our coaches told us we would be spent by the time we got to that point and we would want to stop, but to just keep in mind the goal and keep going. They reminded us we wouldn't be able to do simple calculations or carry on a decent conversation because our mind would be so fuzzy.

It's not a marathon we're running or walking now, but I have hit the wall nonetheless. I am at my max. My body is totally worn out and my mind is beyond fuzzy. I can't do simple math or remember from minute to minute what I was talking about. My head knows I need to keep going...keep in mind the goal. But what is my goal? I wish there was something wonderful to look forward to after this fuzzy headedness, but unfortunately, there is not. I guess that is not entirely true, because for Emma there will be something wonderful. For us, it is not wonderful now, and it won't be wonderful when her battle with this devestating disease has finished ravishing her little body. I wish I could just scream until there was no voice left in me. I want her to be well. My heart is in a constant state of ache. I yearn for her laugh, her hearty appetite, her spunk. I pray and beg for a miracle healing. I know God can just think the word and she would be well. She wouldn't even have to go through physical therapy to recover the massive muscle loss her body has endured, her head wouldn't hurt from all the brain waste going away and the new cells taking their place making her head its normal size, her tummy and intestines wouldn't have any trouble adjusting from lack of functioning, she wouldn't have to squint when her eyes opened and light hit them with sights and beautiful colors she hasn't seen in over a year, and she would have no trouble getting in on the chasing games Carleigh and Luke play. She would love making Cora laugh and holding her baby sister. She would be so cute in her sweet little pilgrim or Indian outfit for Thanksgiving. At Christmas it would be so much fun to watch her crawl up in Santa's lap and hear her give him her Christmas wishes. Every once in a while she gives us an audible sound other than a cry. Her voice is so precious. Cora is starting to babble now, and I look forward to the day she is saying "mama." I yearned to hear that word from Emma.

Here are some pictures of happier days...


  1. It does feel like a marathon, doesn't it? (Although I've never done one, I can't imagine that I could if I tried.) It's hard, and exhausting. I admire your willingness to admit that you're tired, that you feel like screaming. There are a couple people who remind me, occasionally, that I'm allowed to complain. And I appreciate that, because although I'm grateful that she's still here, it's hard and it's exhausting, and I want to scream, too.
    Won't it be thrilling to hear "mama" from the babies?!

  2. Thinking of you and praying for you! I pray that God gives you the strength to finish your "marathon." Lean on's the only way to make it! I wish that I could help you in some way! Love, Hugs and Prayers!!!

  3. I know I say this everytime but I really do ALWAYS keep you guys in my prayers and even our small group prays for you guys on Sundays when we meet!!! Much love sent you way!!!

  4. Oh Christy, my heart hurts so much for you. Please know that we are praying for you guys.

  5. I pray for your family daily and know that God is carrying you all in His loving hands.

  6. Christy,
    I just found your blog over the weekend. I am just learning of the destruction of Batten disease and praying for a soon cure. I am so sorry that you have to go through it with beautiful Emma. I cannot imagine how hard it must be in every way.
    Know that there is a sister in the LORD in Beaverton, OR that will now be praying for you and your family daily. I pray for God's grace and strength for evry step.
    Love and hugs and prayers,


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