I attended a party celebrating the daughter of a close friend, who had essentially grown up alongside my children. Reflecting on the gathering, I recognized the profound impact of my own journey. After grappling with a deep depression following my daughter’s accident, I hadn't engaged socially for many years.
What struck me first was the warmth of reconnecting with old friends and relishing the familiar camaraderie. Yet, mixed with that joy was a twinge of envy for the experiences my daughter would never have, missing out on the experiences youth have in their twenties.
Despite these emotions, I also felt blessed. My daughter, despite the challenges of a traumatic brain injury (TBI), had transformed into a resilient, understanding individual. Her daily pursuit of happiness is admirable.
However, there lingered a poignant sadness. These friends, integral to our pre-TBI family life, now exist as memories divided into 'before' and 'after' the injury. Our shared happiness then, like biking, hiking, and beach fun, is a stark contrast to the concessions we make now. While others moved on with the expected trajectory of college and beyond, she remained due to circumstances, yearning for opportunities like school, travel, and city living.
The harsh reality is that individuals with TBI lack the same opportunities to progress as their peers. The onus of maintaining contact falls on friends, but as they move forward, those with TBI often stay behind. The void left in their lives of the friends is filled with new friends and experiences, a luxury harder for those with TBI to attain.
The surreal aspect of the gathering was the absence of inquiries about my daughter. It was both astounding and heart-wrenching. While I appreciate that my life encompasses more than the challenges of TBI, the realization that most people are unsure how to ask or fear the response was both eye-opening and painful. They've been out of her life for so long, making it more difficult to bridge the gap.
Thank you so much for sharing this story. It sounds like your son has made an unbelievable recovery. I would love to find someone to pair you with to be a "buddie". Someone who has a similar situation and can guide you.
We are just going to Launch this site hopefully in 2 weeks, would you like me to try and locate someone to be your Buddie, and would you want to be someone elses buddie, since you seem to have come so far and learned so much?
Also, and I know I am not really answering your questions, but if you could tell your story in the share your story, both yours, any siblings can too and if your son wants to, that would be so very, very, very helpful in getting this site off the ground.
In terms of any advice moving forward, your son seem to have made such progress, we are not at the stages where you are yet. Note YET. But I would say not to give up. Changes are made even 9 years out like ours. It is amazing what the brain can do. Has he done neurofeedback? That is huge and it can make a difference in anyone's life, or at any stage of the TBI.
There are also new medications on the horizon, that seem to be making a big difference in what I would call "leveling up". hopefully we can see them soon.
Finally, we want to start a registry for people who are interested in any trials that come up in the future. We That component is not up and running yet, but should be within 2 weeks, if you are interested.
Thank you for sharing, please continue to do so, I believe you can be an amazing resource for others not to feel so alone in their Journey!
I think this is a great idea. I am a nurse and I still had no idea of the road ahead of us after my sons accident and TBI. I thought he would be walking out of the hospital after he woke up from his coma. That was def not the case! He was transferred to a Rehab hospital with a trach and Gtube, did not walk for months! Fast foward a rough 2 1/2 years and Colin is soaring! Going to Jr College, driving, working out... I would of loved to know the process and stages to expect.
We are thinking of starting a mentoring, or buddy program within this non profit. Someone who is farther out from the TBI with someone just at the beginning. I found other mothers so helpful when this first happened. It was like they were the only ones that understood anything I was going through.
Any thoughts on whether that would be a good idea?
I attended a party celebrating the daughter of a close friend, who had essentially grown up alongside my children. Reflecting on the gathering, I recognized the profound impact of my own journey. After grappling with a deep depression following my daughter’s accident, I hadn't engaged socially for many years.
What struck me first was the warmth of reconnecting with old friends and relishing the familiar camaraderie. Yet, mixed with that joy was a twinge of envy for the experiences my daughter would never have, missing out on the experiences youth have in their twenties.
Despite these emotions, I also felt blessed. My daughter, despite the challenges of a traumatic brain injury (TBI), had transformed into a resilient, understanding individual. Her daily pursuit of happiness is admirable.
However, there lingered a poignant sadness. These friends, integral to our pre-TBI family life, now exist as memories divided into 'before' and 'after' the injury. Our shared happiness then, like biking, hiking, and beach fun, is a stark contrast to the concessions we make now. While others moved on with the expected trajectory of college and beyond, she remained due to circumstances, yearning for opportunities like school, travel, and city living.
The harsh reality is that individuals with TBI lack the same opportunities to progress as their peers. The onus of maintaining contact falls on friends, but as they move forward, those with TBI often stay behind. The void left in their lives of the friends is filled with new friends and experiences, a luxury harder for those with TBI to attain.
The surreal aspect of the gathering was the absence of inquiries about my daughter. It was both astounding and heart-wrenching. While I appreciate that my life encompasses more than the challenges of TBI, the realization that most people are unsure how to ask or fear the response was both eye-opening and painful. They've been out of her life for so long, making it more difficult to bridge the gap.
Thank you so much for sharing this story. It sounds like your son has made an unbelievable recovery. I would love to find someone to pair you with to be a "buddie". Someone who has a similar situation and can guide you.
We are just going to Launch this site hopefully in 2 weeks, would you like me to try and locate someone to be your Buddie, and would you want to be someone elses buddie, since you seem to have come so far and learned so much?
Also, and I know I am not really answering your questions, but if you could tell your story in the share your story, both yours, any siblings can too and if your son wants to, that would be so very, very, very helpful in getting this site off the ground.
In terms of any advice moving forward, your son seem to have made such progress, we are not at the stages where you are yet. Note YET. But I would say not to give up. Changes are made even 9 years out like ours. It is amazing what the brain can do. Has he done neurofeedback? That is huge and it can make a difference in anyone's life, or at any stage of the TBI.
There are also new medications on the horizon, that seem to be making a big difference in what I would call "leveling up". hopefully we can see them soon.
Finally, we want to start a registry for people who are interested in any trials that come up in the future. We That component is not up and running yet, but should be within 2 weeks, if you are interested.
Thank you for sharing, please continue to do so, I believe you can be an amazing resource for others not to feel so alone in their Journey!
I think this is a great idea. I am a nurse and I still had no idea of the road ahead of us after my sons accident and TBI. I thought he would be walking out of the hospital after he woke up from his coma. That was def not the case! He was transferred to a Rehab hospital with a trach and Gtube, did not walk for months! Fast foward a rough 2 1/2 years and Colin is soaring! Going to Jr College, driving, working out... I would of loved to know the process and stages to expect.
We are thinking of starting a mentoring, or buddy program within this non profit. Someone who is farther out from the TBI with someone just at the beginning. I found other mothers so helpful when this first happened. It was like they were the only ones that understood anything I was going through.
Any thoughts on whether that would be a good idea?