Dear David
Notes like this are why I am writing my next book on closure after stroke
In a previous newsletter post last October, I revealed I was taking the plunge and going through with writing my next book about stroke and my journey in recovery and advocacy.
It has been a long journey and in many ways I’m still recovering (if you ever do fully from stroke) and it has been one that started with my first post years back on November 15, 2006 on my stroke blog at Know-Stroke.org.
Since that time, I written well over 400 posts, heard from and replied to thousands of comments on my blog and taken many, too many personal phone calls just to be an ear for anyone who needed someone to listen to on their own healing stroke recovery journey.
If you know my story or listen to our Know Stroke Podcast, I continue to do this even today some 17 years after my stroke, because I mostly felt alone and I one time walked in their same shoes.
It’s a journey filled with many ups and downs and no clear pathway to recovery exists to this present day.
That’s why I feel telling a collective true story of closure after stroke is needed. Because, my story will be about sharing the other survivors stories I have been blessed to be part of on my healing journey.
Sharing just one of the many notes I’ve received over the years below (with permission) from a parent of a child that had a stroke and there will be many more in my book to follow to shine a spotlight on why we need to do more for stroke recovery. For reference, which will be detailed in my book this account was from a parent that wanted to try to support my efforts to improve pediatric stroke awareness after hearing about my Bright Minds Project* and the barriers we both experienced to try to get more support and awareness around young stroke education.
Dear David,
Please accept the enclosed check as a donation to your stroke awareness efforts. Please complete the check payable to the appropriate organization name. It’s important for you to know how much I appreciate your time energy and friendship you have extended to me and my child (name). As you are well aware, dealing with a life changing medical condition like stroke that has limited resources for treatment and ongoing support is emotionally and physically exhausting. It’s people like you who make that stroke journey just a little bit easier. Your time, dedication and desire to make a difference is refreshing.
I’m also aware of your own frustrations in finding the best route to channel your own stroke education resources so that you can make an effective difference in the lives of people living with stroke.
I’m sorry to not have been able to dedicate myself more as I had hoped. My attention needed to be diverted to other personal changes and challenges at this time. I’m hopeful you continue your fight for stroke awareness and I’m hopeful I will be able to join you again soon in this mission.
We really appreciate all that you have done to make a difference for us!
Happy Holidays to you and your family and all the best always.
Our Warmest Regards,
The rest of this story will be shared from the parent perspective on trying to make sense of life after a child has a stroke. (This note signature kept anonymous per request). Subcribe to my newsletter to learn more about my book along with early chapter releases and survivor interviews.
More to come, and please do chime in if you feel you’d like to share your story as well!
*Reference [Bright Minds Project Sidebar]
About Bright Minds
My why for creating Bright Minds Kids evolved after my own stroke at 39 years old. I had 3 young children under 8 years old and I found it difficult to find non threatening ways to explain to my own kids what had happened to me. I looked all over the internet for resources and interviewed stroke leaders, national associations and educational organizations in my kids school district and still found there was a huge gap in educational resources and age appropriate tools for learning about stroke awareness and developing healthy habits early to build a resilient brain.
Linked here are a few resources I developed, but unfortunately what I learned is we are not dedicating time or money to this subject because what I heard in my research was the incorrect message prevails which is "Kids Don't Have Strokes".
This though process is wrong, we need to educate all our bright minds, young and old alike to KNOW STROKE!
This is the other part of the story I’ll be sharing in my book.