Wednesday, February 23, 2011

A Mother's Heart is Never Prepared to Hear These Words

Although I had prepared my brain with research and possible diagnosis, when I sat down across from the Doctor and he said, "I wish I had better news for you" my heart cried out.  I can say a mother's heart can never be prepared to hear those words. 

Sera did awesome with her eye procedure today.  They were able to do all the tests they needed to give us a definite prognosis for her vision.  One of the test they did was called a electroretinography, which measures the electrical responses of the retina.   The doctor did not get any response from either retina which confirmed the diagnosis similar to Retinitis Pigmentosa,  a Progressive Cone-Rod Retinal Dystrophy.  Sera's case is on the extreme side.  Many children will begin to lose partial vision at puberty and then may or may not lose total vision by the time they are an adult.  At the age of two Sera has already progressed quickly.  The doctor expects Sera to lose her remaining vision fairly quickly, probably within the next year or two.    Because her case is on the extreme end it is expected that she will lose ALL her vision.

Right now I am really just trying to process all this in my head and my heart.  Although we were prepared that she would probably lose most of her vision we certainly thought that was many years down the road.  How do you prepare a two year old to never see again?  How do you explain safety issues to a child that is developmentally delayed?  Sera has an amazing attitude and spirit about her.  I know she will do great!  She is an amazing little girl who has already overcome so much.  She is truly a beautiful creation of God and a wonderful gift to our family.

6 comments:

  1. Wow! Lots to process. I will keep your family in my prayers. You are doing a great job with all your kids.

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  2. We will definitely be praying for Sera and the entire family!

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  3. I am so sorry, and will be praying for ya’ll!!!

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  4. Praying for you all tonight.

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  5. You made me cry. I'm so very sorry. ((((((hug))))))) But so glad that Sera has your beautiful, courageous family to love her beyond measure. Praying for you guys.

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  6. Just found your blog through Chantelle. What a challenge you are facing...I love your heart and your attitude. Keep walking and trusting.

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