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Tuesday, June 9, 2009

What is Okay Anyway?

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So, what do you tell someone who asks about your daughter who is not doing all that great, and whose health continues to decline, but who is "hanging in there" nonetheless? I don't know what the answer is, so I just say "she's doing 'okay.'" She's not moving much, so a lot of the time her stomach hurts from constipation. She cried out more last night and today than I've seen her do in a long time because of what I'm assuming is stomach pain. Usually I can get her somewhat regulated with meds, but I guess I haven't done a very good job lately. I hope to get her back on track within the next day or two. Everything I feed her is pureed, and I'm having to make sure the spoon stays in her mouth long enough for her to get the food off without it coming right back out. I realize that proabably doesn't make much sense, but I don't know how else to describe her eating. She looks very thin. There's no toddler fat on chubby cheeks or pudgy bellies. Her muscles are mushy and she has no strength to hold herself upright unassisted for more than a couple of seconds. Of course, she is blind, so she doesn't see the beautiful faces, the bright sunshine of summer, the pretty flowers in bloom, and when she looks in my eyes, she doesn't see how much I love her. I only hope she feels it. I didn't realize how down I get when I explain Emma's condition to whomever it is that asks. I guess when I speak aloud what she is and isn't doing I get a clearer picture of how she really is...she's not improving...she is getting worse day by day, and when we're with her day in and day out, we lose sight of her decline, I guess. This thing called Batten Disease is ugly. I could ask "why," but I know I will not receive an answer this side of Heaven. I have learned many lessons though. I wish I could have learned them differently, and not at Emma's expense. I'm learning not to judge. I didn't realize how quick I was to judge people until recently. You can't know what a person is going through or why he is acting the way he is if you haven't been in his shoes. I have learned there are a lot of people in this world who are hurting, and they need the promise of prayer, just as we have been given. I have learned life is short, enjoy the time you have now, and quit putting things off until tomorrow. I have learned I'm not a very patient person. I would like to say I don't get angry or frustrated with my other children, but that would be a big fat lie. I'm learning how to better communicate with them so I don't have to constantly hear bickering back and forth. Maybe I'll get that lesson down before summmer's end. I wish there could be no more pain in this world, at least for babies and children. It's so devestating to watch a child suffer, whether it be from a terminal illness, or hunger, so I'm learning to pray more and do what I can to help. I've learned to smile at people more, and look people in the face, especially those who are ill or a caregiver of someone who is ill. Everyone wants to feel...something. I wish so very deeply that I could have learned all of these things without my baby girl getting sick, but I don't know if I would have. God promises that nothing we go through in this life will be wasted. He will use everything for His good.

I don't want to sound like I don't want people to ask how Emma is, because I do. I want people to talk about her and mention her name. I want people to remember how cute she was and still is. I want people to share memories of her with us. If you have one, feel free to leave it in a comment. I need all the memories, because I'm forgetting more and more each day. I hate that. I wish I had a better memory.

Thanks for hanging in there with us...


  1. Hey Christy, I was reading your post and thought of something I did at school with one of my kiddos. She has issues with constipation I would place a hot/warm bottle of water (or some kind of heat) on her belly and it would help with the cramps. Don't know if this will work for Miss Emma or not. But thought you may like another idea to help. Hope it works.
    Love and many prayes

  2. Oh Christy, reading your post my heart broke and the tears are still here. I can't imagine what that is like, but felt it as I read your words.

    I wish I had a book full of memories to share with you sweet girl. The one that I love that you posted of was the photo of her with the toilet paper, that was too cute!

    I do love that she is so involved in your lives and events involve her and memories are made with her and your other kids. This they will remember for many, many years to come.

    You are such a good momma, who loves so deeply and has a beautiful heart! Just because your sweet girl can't "see" the love in your eyes, she feels it in your touch, she hears it in your lullaby's, she feels it in your warm comforting hugs, in the ay you call out her name, in the tenderness when you two are spending your daily routine together, in all the silly noises you make as you try and get her to eat... she know this Christi, she has not forgotten, she will never forget...

    God wants me to tell you that she does love you momma and one day you two will meet up again and you two will share in a reunion that will mark an eternity together in the warmth and love of your Savior!

    I love you girl!

  3. Our special children teach us more than any classroom or book ever could, that is for sure! Emma is here for a very important reason and her life probably holds more importance than most! I'm so sorry that you have to watch her decline. This must be heart wrenching! I'll be praying for you and your family. I pray that God will give you peace, hope and strength. HUGS!!!

  4. Hey Christy. I want to have the right words, I remember when we thought Alex was going to die, and there wasnt a thing anyone could say to me to make it better. Now people usually ask me how I am doing, and I say fine, even when things arent fine. Do they really have the time to sit there and listen how things really are. And what in the world will they say when I complete my story of how I really am, so I just say fine. I hate syndromes, and disease. I think of you often, and your sweet little Emma, she feels your love, she knows your mamma, and she feels your love.

  5. Wow heart breaks for you guys all the time. I can't even imagine but you guys make it look so easy even though I know you are hurting and struggling. I wish there were something we could do to help!!
    There is not one night that goes by that Noah does not pray for Emma and my son's friend Tim that has cancer. She is a precious, beautiful baby girl that has touched so many hearts of every kind. Look at all the bikers at the rally that look so tough and mean and were praying for Emma and supporting her benefit!! That was amazing to see. I will never forget her in her Harley shirt and little boots with her Daddy that day!! We need to get the kids together soon to play. They started our pool today so once it's done you guys need to come over and swim!!!

  6. Christy I read that post with a heaviness in my heart and tears in my eyes.

    I wish all of us moms with special kiddos lived near each other, so we could sit and talk and cry and hug.


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