Grace for Rett » Grace's Life with Rett Syndrome

I didn’t blog her second birthday!

Not much to say, really…it was rubbish. Grace was very lethargic and sleepy. She didn’t stay up past 5pm so she missed dinner (nothing special there just whatever I can puree) and cake. No presents. Had a faux birthday the next day and she didn’t want her cake (texture issues) and didn’t even look at her gifts as the boys opened them (the photos are deceiving – she didn’t even notice). Kind of thinking the day was more for them than for her because she really, truly, honestly couldn’t have cared less.

I can’t say that I was overly enthusiastic myself. Her birthday was a depressing day for me in all honesty. It’s hard to see your daughter ‘growing up’ without growing up at all. I actually feel a lump in my throat just typing that. I’d rather just pretend that she’s not getting older at all and birthdays don’t allow me to do that.

Emma - December 16, 2010 - 10:22 pm

Happy Birthday Grace. I really feel for you, Elizabeth. Your sadness is so tangible in this post. Bravo to you for being honest enough to write about this. I am sure it will strongly resonate with other families on the same journey. xxxxx

Sara - December 17, 2010 - 9:28 am

Livvy always found her birthdays overwhelming people visiting giving her gifts sisters over excited. In the end we spread it over a few days opened grandads gifts one day nannas another. She started to relax and enjoy it a little then. It was the same with Christmas.

You are still at such an early stage with everything you have to grieve for the dreams you had, but you will see how much the future holds. Grace will continue to inspire you everday. Try not to be so hard on yourself, we learn to see the joy in the little things xxxx. Hear if you need to chat xxx

Jenny - December 21, 2010 - 5:20 am

I’m sorry, I wish I knew something to say to make it better for you. I am glad the boys enjoyed it, maybe Grace will surprise you one day and enjoy looking through those pictures. You are more brave and strong than you realize, it does matter. You and your family are in my prayers. 🙂

Glenna - December 27, 2010 - 3:08 am

You make me want to put my arms around you and give you a firm hug. I don’t know exactly what you are feeling but I do understand the sense of loss even while you celebrate another milestone. My husband, Paul’s, battle was muscular dystrophy. He used to say the enemy owed him so much that he would have to repay 7 times and that the day he was healed he would simply “Hulk” out (minus the green of course). We never got to see that happen but I believe he will have his day of justice and we will know that it was worth it.

I can tell you from experience that God’s shoulder is strong and He wants you to lean on it. He will help you through and in the process show you some precious things you wouldn’t have seen otherwise. God Bless You. I’m lifting you up before Him tonight and asking for an extra helping of grace.

Hilde - Kristin - March 4, 2011 - 2:46 pm

Your girl is amazing!
Happy second birthday to her. My niese Tuva, with Rett syndrom will have her second birthday in april.

I wonder, how do you get her to keep the glasses on?
I think maybe Tuva will need glasses too, but will she be able to leave them alone?

admin - March 4, 2011 - 3:54 pm

@Kristin: Well part of RS is that they (usually) lose the use of their hands. So whether she wants her glasses or not, she can’t get them off anyway!

Hilde - Kristin - March 5, 2011 - 5:23 pm

Hi again, Tuva can still pick up things like her pacifier and get it into her mouth, not always the right way of course. She puts everything in her mouth. But maybe she will loose all control over her hands? Loose the ability to put things in her mouth? We havent known about the diagnose very long. Still learning.

Your little girl is so lovely!;)

admin - March 6, 2011 - 4:44 pm

Lots of girls I know can still use their hands! If she hasn’t lost that, she probably won’t. And then you’ll have to fight the glasses! :*)

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