Wednesday, November 12, 2008

I hate Batten Disease

Can I just tell you I hate Batten Disease?! Last night as I was watching Emma struggle, and looking at the pictures around the house of her before her world was turned upside down, I realized Batten Disease and Alzheimer's are very similar...they are Satan's sicknesses! They totally strip people of their mind and body and who they are. Just last year Emma was laughing and clapping, dancing and climbing, and trying to keep up with her brother and sister. Today she can't feed herself, walk, tell you what she needs, or anything else a precious 2 1/2 year old should be able to do. I went to a meeting today to talk about transitioning her to school from the ECI program once she turns three in March. When questions are asked about what Emma can do, I hate saying "no" as most of the responses. I want my daughter back!! She is so sweet and so precious, and I hate watching her struggle and get so frustrated. I hate it that a lot of the time she looks like her school picture taken a few weeks ago with bumps and bruises and a sad face...

...and not like the sweetie pie I know she is and remember in pictures past...




So, I guess I will cling to the promise God has given that He will carry us through this. I'm glad He is strong and has big arms, because I don't feel like I'm handling very much of the load right now. I know He doesn't waste any of our hurts and trials. We have met so many wonderful helpful people since Emma has been diagnosed. I know He is using this ugly trial for His good. I hope people are drawn to Him who don't know Him because of what they see in our family. I know He knows each tear, and He loves us deeply. I look forward to the time when "There will be a day with no more tears, no more pain, and no more fears/There will be a day when the burdens of this place, will be no more, we'll see Jesus face to face/But until that day, we'll hold on to You always"...
Jeremy Camp, "There Will be a Day"

13 comments:

  1. My heart goes out to you on days like this....and every day! I cannot even imagine what it is like to see such a change over a year. We are all praying for you. I think of you, Emma and your family daily. God's plan can be so confusing sometimes, huh? But, as you said..we just have to believe in it. Hang in there. Holly Jones

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  2. You are handling this in a way that is so glorifying to God!! I am amazed at the strength He has given you. I too cling to the promise that this struggle will bring glory and honor to God. I also pray that he will hold you so close...that you will lay against Him and feel His heart beat. You are doing great Christy and I am so pround to be your friend!

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  3. Oh Chisty,I wished I could take away your pain. My heart aches for you. Even though I really do not know Emma, I love her to death. I know it must be so hard to see your little girl go though what she has gone though. But your family does show Gods love. I was listening to KSBJ the other morning and they were talking about people that you can see GOD in them though and though. You are one of the people I see like that. I pray daily for the whole family. I am always here if you need anything, even if you need to cry on someone elses shoulder I am here. If you need to get out for a bit I can do it or anything.

    Love always and on my knees praying,
    Ashley

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  4. My heart breaks for you guys and for Emma but you are all such a great testimony of faith and strength. You are only human and are going to have bad days and days of not understanding and remember that is ok!! He is in control!
    I am so excited after the meeting last night about Emma's benefit. I know He will help us make it a huge success!!! I am excited you guys are coming to our party and for getting to know yall better!!
    Hang in there!!

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  5. I forgot to add. I love the picute of Emma in the bathroom. It is priceless. :)

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  6. Christy,
    Hi, this is from Kelvin, your husband.
    Where do I start?
    You are an incredible woman.
    I want the world to know your passion, depth, love and understanding...you are a Proverbs 31 woman...you are a complete mother...you are wonderfully thoughtful of others...you are the wind in your husbands sails...you get knocked around in the storm, but never see the waves because your eyes stay fixed on God...you are a love story worthy of Nicholas Sparks' pen...you are a mother her children will be proud to model...you are a person that countless thousands draw strength from...you light up rooms...you make extraordinary from ordinary...you manage a schedule meant for a corporate CEO...you have the voice of an angel...you are the truest of friends...your endurance fails no test...you are deep with resolve...your word is is both bedrock and capstone...you laugh the loudest...you stay up the latest...you pray the most...you make friends of strangers...you are awesome...you are transparent in truth...you are the only one who ever doubts you...you are a perfect mother...you make me proud...you impress me every day...you give me energy when I get home from work...you make me want to come home early from trips...you make the best popcorn...you cry in the movies...you do things for the right reasons, not necessarily what is easiest....you are an awesome person to "do life" with...you have a heart in search of God...you have a spirit pleasing to God...you are an amazing woman...of the billions of women on Earth, God hand picked you as the mother of our children...God knows what he is doing...God understands your absolute strength and endurance...God loves you being up in his lap right now...you have shown so many people what a loving, caring, understanding, providing and perfect God we serve...your heart is biblical in proportion and worthy of the Bible...you are a wife of the highest caliber...you are the image God had when he designed the wife and mother relationships.
    I don't deserve you, but I accept you as another gift of grace from God. I love you. See you tonight.
    Kelvin

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  7. My heart goes out to you! I'm so sorry that you are struggling! You are an awesome mommy and God has a perfect plan for you and your sweet girl! May He give you the peace and strength needed each day!

    I, too, cannot wait for the day when "there will be no more tears....." This knowledge is the only thing that gets me through some days. Remember that this life is short in comparison to what God has in store for us!

    I'll be praying for you and your family! Hang in there!

    Alicia

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  8. My heart breaks for you both. I know it has to be shattering to watch your baby go through this. It goes against everything we stand for as mothers to not be able to help. I pray for her daily. I really wish I could hug you right now, I know you need it.

    You are doing an amazing job and God has bestowed amazing strength in you. Your faith inspires me.

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  9. Christy, my heart broke for you as I read this post. I am so sorry that your heart has to watch as this shadow takes Emma, sometime Gods providences are so hard to digest, yet His grace and mercies abound even in the midst of all this. I can't imaging the roller coaster of emotions that must be swirling around in your heart.. I will for sure lift you up and set you at the feet of Jesus. Please know my thought are with you, you are loved and prayed for daily!

    I just have to add that your husbands comment brought me to tears.... wow, what a love you share thats all I can say... what a love!

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  11. I found your blog because I know Haylee Joyce who is fighting Battens Disease in my town. We have also lost a little friend to Tay Sachs disease just a year ago. My own 4 year old granddaughter was adopted from China at age one. She was already walking. 2 months later she was in NICU in a coma. The Doctors did every test and announced a fatal disorder (similiar to Tay Sachs). We fasted and prayed and God whispered in my daughter's ear to ask for a healing for Myer, her Chinese baby. We anointed her with oil and prayed around her crib and THIS time Jesus did a miracle that the whole hospital staff SAW! Praise the Name. Although she awoke from the coma and was able to swallow liquids and soft food, she was blind and had no fine or gross motor skill. That was 3 years ago and hundred of hours of therapy etc. She never can sleep longer than 6 hours. Her mom and dad are the best and all the family is an amazing support...including her 3 precious older siblings, who do for her what she cannot do for herself. Her eye sight is improving. She is still not walking, but is talking on about a 3 year level. The days are exhausting. Her mom has been the Worship Team leader at our church for 6 years, her husband plays in the band. They keep up with the activities of the other kids. They do for others. Many people try to understand, but they don't get it.
    I just read my daughter your latest entry and the familiar song that she also uses in worship. But, more importantly I read her the amazing "comment" Kelvin wrote to you. I told her that her husband Greg could have written this to her. He has said many of these same phrases. But, this was so healing and refreshing. I read it to her over the phone and she wept. Somebody GETS it. And she felt kinship with you and pain for your dealing with Emma's pain and joy for our trust in our precious Heavenly Father who is working all things to our good and has all of these kids and their families in His might Arms. Kelvin, thank you for being able to say what we were too tired to say. It was from HIM. You are in our prayers and we will one day know each other as we will know HIM face to face. In the Father's love, Joann
    Blue Springs, MO

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  12. My heart breaks for you and yourlittle girl,I am blessed to know and care for a young girl with Batten Disease and I agree with you.I hate Batten Disease too!

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