Her words

Today's gift are her words.

For most girls with Rett Syndrome, the freedom of speech has been taken away by the Rett Monster. While my daughter can not hold a conversation with you, she understands everything you are saying. And while she does not have conversational speech, she does have words she can say...actually over 70!

I pray daily we can have a conversation one day as there is so much I want to know from her. But until the day comes when we can have this conversation, I will take all the words I can get...even if it is one word at a time.

In the mornings when she walks in our room... this is usually the case around the fine hour of 5:00 AM, she hops up in our bed to watch tv while we try to get a couple of more minutes of shut eye before our second little visitor comes in....our son! Once I am awake....or shall I say, once my brain is awake and at the point to hold on a conversation, I love snuggling up to my daughter and saying "Good Morning" to her, to get a "guh mor ning " right back from her. Do you know how long it took my daughter and her special one on one teacher to get these words from her mouth? Months...close to 6.... But they never gave up on each other!

I love hearing her little voice. The innocence in each word. Something we take for granted every single day. I honestly can not begin to imagine what it would be like to not be able to communicate my needs, wants, and wishes.

My favorite word of course is Mommy, I'm not going to lie. However, every word or approximation she says I love. She is so proud of herself when she says a new word and we keep saying it to have her keep saying them as we do not want her to lose them. After all it was patience and repetition which has helped her acquire the vocabulary she currently owns. I used the word "own" here for two reasons....these words she does "own" as she worked extremely hard to learn how to say them.....and they are her "own" words....she said with her "own" voice.

Just like I love starting my day with a "guh mor ning", I love ending it with a "guh nigh"!

I have always loved the saying less is more, and when I think about my daughter's ability to communicate with me one or two words at a time, I see how true this saying is....for us, less is more....

However, I will never lose hope and I know one day we will have a conversation with lots of words!

 

Instead of a quote I want to share some of the words she uses on a daily basis...

Guh mor ning- good morning; Mommy; Daddy; B- for her sister; E-I, for her brother ; Ah-me; Mimi; Poppy; Ne- for Granny; me; cup; more; cracker; bee; hi; bye; puh me- for push me like when she is on the swings; ball; up; boo- loves playing hide and seek; kaboom; go; car; and guh nigh.

***I am sure there are more, but as I type this, these are the ones which come to mind immediately!***

 

 

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