Stephanie
Wednesday, December 10, 2008
Support Groups
I found during my searches yesterday two really good regional support groups for retinoblastoma. (I've added their links to the right side of the blog). I loved the positive message I got from both of these sites. It seems they meet monthly and play together, support each other and have fun. It's good for children to meet other kids like themselves. Perhaps to see older kids and how well they're doing in life would be good for me as a mom too. There is an instant bond to families who have the same disease that you do and I'd really like to meet more families like us. So far I've made really good friends with a mom in Boston (Noah's mom) and I've written a time or two to another mom in Houston. It's nice to talk to someone who really knows what this is like. I've since been looking to see if they have any such group in central Texas. Or Texas at all. It doesn't seem they do. So now my big idea is... how would I go about starting such a group? I don't want it to be such a huge undertaking that it overwhelms me. My first priority is to my family, and it can't get in the way of that. But I think this could be a real strength for our family. Certainly we're not the only family who could benefit from this. If y'all have any suggestions we'd warmly welcome them.
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2 comments:
Hi James and Stephanie,
This is Michae, Michelle's old roommate. I have been following Gracie's story and am praying for you all. I was talking with my Aunt awhile ago as my cousin had retinoblastoma when she was 5. The cancer was so advanced that they had no notice that her right eye needed to be removed. They basically found out and then prepared her for surgery. My cousin has now been cancer free for the last 7 years, but my Aunt still has had to take her other 2 children to get checked regularly and she says that she is overwhelmed with all the memories every time she walks back into the hospital. Thinking to herself, "what if this is the time they find something?" However, she did say that Kiana, my cousin, does not remember much of it at all. I talked to Kiana also, and she said that she remembers the Doctors and Nurses being very nice :-D My Aunt said that kids are very resilient and will forget, although as a parent you'll never forget. I can tell by looking at Gracie's pictures that she is so happy and she truly is an example to us all. You are both so strong and such an example to many people too. As I read each new post, I am constantly amazed at your faith and love for the Saviour that is so apparent! You are an amazing family and I know that Heavenly Father is taking care of you.
Here is a story my Aunt wanted me to pass along
http://www.cancer.ca/Canada-wide/About%20us/Media%20centre/CW-Media%20releases/CW-2008/Media%20Backgrounder%20-%20The%20Hoddinott%20Family%20a%20Survivors%20Story.aspx?sc_lang=en
I hope the rest of Gracie's treatments go well. Thank you for sharing your story ;-D
~~~Michae~~~
Hi! Just saw that you linked to my Retinoblastoma New England website! Thanks! Your Gracie is beautiful (and I can spot Solo Bambini glasses anywhere-- my Joli has pink ones, too!). Please let me know if there is any way I can help. There are some fantastic families in Texas who are just the best! Hopefully you can come to Camp Sunshine in the summer, which is where so many of us met in person! Peace, Liza (mom to Joli, Rb)
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