Grace: "Mom, you know there are other people that have cerebral palsy."
Me: "Grace, what did you say?" (I was pretty sure I hadn't heard correctly)
Grace: "Mom, there are other people that have cerebral palsy."
Me: "Yes, you are correct. There are many others that have cerebral palsy."
Grace: "Just like I have cerebral palsy."
Me: "Yes, there are others like you that have cerebral palsy."
As you can see, I wasn't sure where to go with this conversation. I was starting to panic. Grace and I had talked about her condition but mainly in the context of therapies, surgeries, etc. I was going to let her lead me to THAT conversation. The WHAT IS GOING TO HAPPEN TO ME...the WHY ME...THAT conversation. I was waiting until she was ready...and maybe until I was ready.
We were interrupted by Grace's aide opening the door so we weren't able to continue.
Where was Grace going with this conversation? Had someone been talking with her about this? What should I say?
Grace's aide says they have not talked about this (although I wouldn't mind if they had) and she hasn't heard anyone else having this type of discussion with Grace.
Then it hit me. We had a visit yesterday to the Scottish Rite Mobility Clinic. She saw doctors, nurses, therapists...also other children with cerebral palsy. Did she not know? Did she think she was the only one? There are others. We are not alone.
4 comments:
Wow! I'm thinking: What an amazing example of how her world is stretching as she grows.
Doesn't she interact with any other kids with disabilities? I'm a little surprised that other kids or adults with CP are not already part of her world. It is always good to have friends who share common interests or have common experiences.
I happened across your blog and so glad I did. Grace is beautiful! I love the pics. Wow...It sounds like Ms. Grace is really starting to examine her world. I know when she opened that conversation with you, it was a heart stopping moment for you. My own daughter with CP was severely cognitively impaired, so I never had to answer those types of questions. Perhaps you can find a good book to share with Grace that will help her realize that she is not alone, and that there are many, many other children in the world who also have cerebral palsy. Also you might want to visit our site. We are network consisting of hundreds of CP families, and Grace can see the stories and accomplishments of the many children and families that interact on our website. We are the Cerebral Palsy Family Network. We're always thrilled to have guest bloggers and, would love for you and Grace to join us! You can also find us on Facebook and on Pinterest. Hope you revisit your blog soon. I look forward to reading more about Grace as she continues to explore her world! Best wishes and Happy Holidays!
It's been a long time...I was thinking about you and your family, decided to pop in. I'm glad you're blogging again!
PEN PALS! Elena would love to exchange letters/pictures with Grace!
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