Slice of Rett Life – From a Grandma’s Perspective

Hi, I’m Nancy… the Nana of a most beautiful Rett baby girl. I guess she’s not a baby anymore; she’s 3 years old! I’ll start by letting you know she’s my first grandbaby. She is an absolute light in my life, a most loving soul, and a very happy child…. except when some of her Rett symptoms interfere. Lately, many stomach related issues. Ugh. Anyway…

Let me tell you more about Brooke.

You can find out more details about the start of Brooke’s Rett journey at www.rettsyndrome.org/Brooke. Basically, she arrived in our lives a little early, emergency C-Section at 37 weeks, followed by 15 days in the NICU before going home on oxygen for about the next 1 1/2 to 2 months.

Looking back, I think her symptoms appeared pretty early, maybe at 6 or 7 months old. I was asking her parents if she was trying to sit up or roll over, and the answer was always no. At that point, we just thought maybe things were delayed a little, due to the circumstances of her birth. I remember seeing her and her parents after a trip, passing through Denver, and she was probably 14 months old, and she wasn’t making any real eye contact. She was trapped inside her own mind. By this time, they were getting therapists going, occupational, developmental… It was still another almost 9 months later before that awful diagnosis came.

In the meantime, she has always been this loving, cuddly little girl who likes to be rocked. We just had to accept that it’s just how she was wired. I know my Brookie is in there. I know she has lots to tell us about, her favorite food, favorite Story Bot video, or her favorite bedtime story. I can’t wait to hear what she has to say!

What does Rett look like? Rett looks like anyone’s beautiful child. Brooke looks like a beautiful normal child, all except the part where she can’t stand, sit alone, speak, feed herself or hold a toy. People commented: “What a beautiful baby!” when she was much smaller. Now I see their questions in their eyes and nobody dares to ask. I’m very comfortable talking about her Rett Syndrome diagnoses. It’s not something that anyone did wrong… something anyone asked for, just God’s plan. I feel it’s necessary to educate about this, because a cure is possible. We need to keep fighting.

Let me add that I’m so proud of her Mom and Dad…. taking this beast on, getting involved. Getting Brooke into a preschool program that she loves, making sure to ask for more therapies that benefit her, like water or music therapy. And I’m proud that they are getting so involved with the Rocky Mountain Rett Association. They say it takes a village to raise a child and this is a true statement for Rett families! I’m also proud of her uncle and aunt for jumping in to help whenever they can. And I’m thankful for her other grandmother for also always being available to help.

Thank you, Lord, for Brooke’s village!

Nancy

 

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