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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"
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