Wednesday, September 16, 2009

Disabilities...

We are being forced by insurance into getting a diagnosis for what is wrong with Callie. They state that a normally developing child wouldn't need the things we are trying to request...for me, it has meant hours and hours on hold with the peds office, insurance, and the pt's office, and many more hours on the internet researching what this diagnosis means...

Spastic Diplegia Cerebral Palsy...That is the preliminary diagnosis that the pediatrician has signed off on (we need a specialist to make it official!)...basically, it is a lot of big fancy words that actually do not tell us any more than we already knew...spastic means high tone. Diplegia means both legs. Cerebral Palsy means brain trauma before, at or shortly after birth (such as infection inutero, prematurity, or a brain bleed, all 3 of which Callie had, and happen to be 3 of the top 4 causes of CP). All of this we knew, and yet, somehow, getting a diagnosis has made me feel almost sick inside...the realization that this isn't something that will go away for her, the idea that this is a life long disability...not just the result of really poor eye sight in infancy.

The diagnosis itself doesn't change anything, her prognosis and her treatment will remain the same...it really is just a label...and one that requires lots of tests, and dr appointments to give her!

On top of all this, we went to the eye surgeon this morning...and now have her 2nd eye surgery scheduled. She goes in on Nov. 20th. The good news is that the eye drops are working and she doesn't need glasses. The other good news is that the amount her eye is deviating is becoming consistent. the bad news is that she needs surgery to correct this. I know it is the best thing for her, and I know that it really did help her last time she had to have eye surgery, I also know that this is not a major surgery, and that we really are so very blessed...I praise God that there is something that can be done to help her...and pray that God would guide the hands of her surgeon, and touch her the way only He can as she heals and recovers...and once again, I find myself already praying that she wouldn't need to have any more surgeries!

I always thought that having a disabled child would be more than I could handle. I am learning each and everyday to die to self, and rely on God more and more. I am learning that even though I do not know what will happen, knowing the one who does is my comfort. I have learned that my God will carry us through each and everyday more deeply. The strange thing is, that while nothing has changed with Callie, getting a diagnosis has effected my a lot...and God is using it to mold me more and more into what he wants me to be. I can't focus on what will happen in the future...I can't think about what these things will mean for Callie as she gets older and grows up. I just don't have the energy to worry about all the tomorrows that lay ahead of me. I have to just focus on today, and what needs to be done today.
Despite all of these challenges that Callie faces, she doesn't know any different! This is the way it has always been for her. She does get frustrated at not being able to do what she wants, or when she sees others who she considers peers being able to do what she would like to be doing...but here is a picture of her favorite pass time, going potty! Today, she was able to get the bathroom door open all by herself...she proceeded to go inside and unroll the toilet paper. When I went to investigate the sound I heard (the toilet paper roll being spun!), she simply said "I go potty, I big girl!" very proudly...so I had Anna come help her (she can't get her pants down or herself on the potty chair, but once she is there, she is very proud of herself!) It was a good reminder today that in many ways, she is a very normal almost 2 year old!

3 comments:

  1. Michelle, Callie is a beautiful little girl! I cannot wait to see what she does as she grows up, what the Lord does in her life! I will be remembering to pray in Nov. for her surgery.

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  2. I am proud of you Michelle. You are a great mother! Thank you for sharing your journey!

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  3. My heart goes out to you Michelle. When I look at Callie I see a beautiful and happy little girl who is so richly blessed to have such a loving, God fearing Mommy.

    When my oldest daughter was 2 she was diagnosed with epilepsy and I remember feeling a lot of the same emotions. I remember my break through one night at 3am, whilst having a very intense conversation with God. God told me to get my journal and make a list of all the hopes and dreams I had for Emma, all the worries I had about how having epilepsy would negatively impact her future.
    After I had them all down on paper I was struck with how superficial they all were. I was able to ask myself, "Does Emma have the ability to know and love God? Can she see Him in the flowers and birds and praise Him?"
    Yes!!! All that other stuff does not really matter. I have been so blessed these past 6 years to see how Emma has grown to have a heart for God. God has been slowly curing her epilepsy too, but it was so freeing when that was no longer my primary goal.

    God has wonderful plans for Callie. He has given you this precious gift and He will perfectly equip you for the journey. You are an awesome Mom! Callie is blessed. :)

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