Thursday, February 25, 2010


You may remember this poem that my mom wrote when Ella lost her first fingernail.

Ella’s hands are often the first thing people notice about Ella. Her face is usually in pretty good shape, and if people see boo boos on her face they just assume that she fell down. But her hands are not typical kid hands, they are dry (no matter how much lotion, oil or Vaseline we put on them), she doesn’t have fingernails, and her fingers are short. We always knew that hand webbing was a result of Ella’s type of EB, and we have been realistic to the fact that Ella’s hands would one day fuse together. The timing is what no one knows. For some kids it happens when they’re 2 or 3, for others it’s in elementary school, and still for others it happens when they’re in high school.

Many parents wrap each finger individually in an effort to stave off finger and hand fusion. We talked about it, but Joe and I decided when Ella was a baby that we wanted her to know how things felt. We wanted her to know the difference between hot and cold, smooth and bumpy, soft and rough. So we don’t wrap her fingers. Of course we’ve had the occasional accident where her finger took the brunt of a fall and we had to wrap it for a few days, but all in all we don’t wrap her fingers.

Now, we’re at a crossroads. Ella’s precious fingers are starting to contract and fuse. I’m crying just typing those words. It breaks my heart. (If I haven’t mentioned if before, I HATE EB!!!) Her precious pinky on her right hand has been getting worse over the past few months, and when we woke up last Thursday morning, the inevitable had happened and Ella’s pinky was completely fused together (like a fist, but it was only her pinky). I did what any mom would do…I freaked out. And I did what I probably shouldn’t have done…I pulled her pinky apart. We’re now wrapping her pinky as best as we can, and once that finger is healed, we’re going to have to revisit the issue of wrapping her fingers individually. I know it will be hard on her at first, but like everything else, she’ll rise above it and continue being the best 2 ½ year old daughter I could ask for.

A lot of parents don’t do hand surgery, and I completely understand why. It’s very painful and the hands always go back to their original state. And most of the adults that I know with RDEB choose not to have hand surgery and just learn to function without fingers (these are some of the most amazing people I have ever met). My fear is that we won’t do anything about Ella’s hands and one day that sweet little face will look at me and ask me why…why didn’t we at least try to fix her hands? I don’t want to face that question. I want her to spend her life knowing that we tried EVERYTHING to help her.

I also want her to be able to make her own decision on whether or not she lets her fingers fuse. However, in order to give her the opportunity to even make that decision, Joe and I have to act right now. We have to make very difficult decisions that will give her the ability to have that choice in the future.

While I want more than anything for a genius doctor to find a cure for this horrendous disease, and I want more than anything for Ella to start preschool next year without bandages, what I’m asking for right now is prayer for wisdom. One of our family mottos is that you have to deal with where you are, not where you want to be. And right now, we have a child with EB. As much as we want that to not be the case…that is the way it is. So don’t stop the prayers for healing, but please pray that Joe and I will have the wisdom to know how to handle Ella’s precious hands. That we’ll know when it’s time for surgery. That we’ll be directed to the perfect doctor who can do the surgery most effectively. That we’ll know how to wrap them to prevent more contractures and fusing. We just need wisdom.


Anonymous said...

I will pray for you and your hubby. I am so sorry that you have to come upon difficult choices. I HATE EB WITH ALL MY HEART! I admire all the parents that have a child with EB. I ask God every night to help find a cure. My heart goes out to you and my prayers!

Gnehm said...

Katie and Joe - we will keep you and Ella in our prayers.

With love,

kristy said...

Praying right now, knowing that the Lord chose Ella for you and Joe, and you and Joe for her. He will give you the wisdom and strength to do what needs to be done. I am sorry these are decisions you have to make and I pray daily for a cure for EB. You and Joe are amazing parents and advocates for Ella. Thanks for letting us know how to specifically pray for you all!

Anonymous said...

Katie, my heart breaks for you with this situation. I know you and Joe will always do the best you can for Ella - that's why God chose you both for her. You are such a great mom! I love praying for your sweet miracle baby and will continue to ask God to give you comfort and discernment as you raise Ella in a Christ-centered home.

Robin M.