Grace for Rett » Grace's Life with Rett Syndrome

Happy {diagnosis} anniversary

On the 17th of Dec, it was the one-year anniversary of Grace’s formal diagnosis for what we already knew. I remember that day so vividly. Dr. O. called personally to ask us to come to the hospital and we’d already spoken about RS before. I just said “she’s got Rett Syndrome, doesn’t she” and he said to come in. Jack had his school nativity so I went to the hospital with Grace and Steven went with the boys.

I remember that Dr. L (the sweetest, kindest Dr. on the planet) actually teared up when she told me that Grace had tested positive for Rett Syndrome. I told her I was fine with that and asked what I needed to do next. I now know why she had tears even though this was by no means the first time she’d ever given such a diagnosis to a mother. She knew what I didn’t. She knew that Rett Syndrome was a robber. She knew that a year later, Grace would still be drinking from a bottle, unable to sit up, unable to chew food. She was probably thinking of that last little girl on her hospital rounds who had just had rods placed to straighten her spine or of the letter she’d just written in her office to fight for some little girl’s right to respite care so her family could take a ‘normal’ holiday with the other children. Or worse, she was picturing the face of the last little girl she saw dying from RS complications.

There I was, completely naive that my daughter was living in a prison while Dr. L. so kindly allowed me to sit there in my ignorance and say, “Rett Syndrome? Yeah, that’s ok.”

Anna - February 24, 2011 - 10:22 pm

Oh my goodness, this post made my eyes fill up with tears! It blows my mind that your little girl has been robbed of so much and at such a young age. And you…you, as her mother, have been robbed of having a healthy daughter. So much has been taken away…and yet, you are so strong and so optimistic about everything. I don’t know where you find your strength. I admire you so much, Elizabeth, so much. Tonight, I will hold my baby girl close to me and thank God for keeping her healthy…and I will say a prayer for your family and especially, for Grace.

admin - March 13, 2011 - 9:54 pm

I only just fell across this comment but thank you so much 🙂 And my strength? It comes from my father God. The Bible says that in our weakness, He is strong 🙂

joy Rosen - March 14, 2011 - 11:56 pm

I was just guided to your site and it was a ray of light in a very dark day. My 4 yr old granddaughter was diagnosed with RS today. I haven’t stopped crying yet! I will follow your site to give us all strength as we travel this long scary road. Fortunately she has some speech (first regression we saw) and is mobile. Caroline attends a special needs perk but not sure how long she will be able to continue. I haven’t figured out tomorrow no less the future for my angel!

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