Reflections of a “temporary” Children’s Cancers Activist…(repost)

(Note: I don’t have the ability to re-blog this. As this blog was originally written and published on 5-20-2014, which was a year after Zach Sobiech died. And I also lack the ability to copy and paste being on my tablet. As well as have the ability in me, to do another Zach Sobiech or try to do another campaign, to raise money for The Zach Sobiech Osteosarcoma Fund at CCRF, other than the paltry donation, I’ll be making today, which should’ve been Zach’s 22nd birthday.

In addition to donating, I also rewatched “My Last Days: Meet Zach Sobiech”, but I think of him at times, him being local to MN and for the many reasons that I’ve explained, in the other blogs I’ve written about him and his family and how they’ve inspired me.

If you’ve seen the above video mentioned, or you’re local, there still is initiatives to raise money every year at Mall of America. I live 4 blocks way from the new Vikings stadium and sometimes I think of him, and feel sad for him, his family and friends, as well as any one fighting cancer, but in his case, I wish he could’ve lived to do so many things. I wish he could’ve seen the new U.S. Bank Stadium and know that the Superbowl will be there in 2018, to name a few, and the fact he isn’t, takes my breath way.

So to honor the amazing human being that Zach Sobiech was, I felt compelled to reblog, in hopes of raising money, awareness and support, even though I realize I’m not the ideal person to be doing this. I dont really care if you read my blog, in it’s entirety. But if you want to honor him, the links below allow you to do so. Thanks )

  I’m on the 17th and (final) day of my social media campaign to raise awareness regarding children’s cancer, specifically Osteosarcoma which tragically took the life of Zach Sobiech, exactly one year ago today, on 5-20-2013. That’s when I first heard him about him, his family and his song “Clouds” and Soul Pancake videos because it was on People.com.. I started this campaign for awareness and donations to the Zach Sobiech Osteosarcoma Fund on 5-3-2014 which SHOULD HAVE been Zach’s 19th birthday. 

   I wasn’t exaggerating that hearing about him, his family and the song ACTUALLY did change my life. While as I said in my original Zach Sobiech blog on May 3rd, that it did change my life. I already had the life experience of being someone who was on campus from 2006-2010 at Fairview University Medical Center where he was (originally, as Amplatz didn’t open until 2011) , and while I suspected that when I saw the Soul Pancake videos, also exactly a year ago, I didn’t know that for sure, until I read Laura Sobiech’s book “Fly A Little Higher”.   

   So what did I actually learn from this experience in this last year and in the last 17 days???


    1. Don’t put off saying or doing anything that needs to be done today as you aren’t guaranteed in infinite time to get  what you want accomplished…… While my life experiences and circumstances have reinforced that, especially because of my memory loss issues, Zach Sobiech drove home how important what we be and what we do in the moment. And not to take that for granted. And be grateful for the experience.  

    2. Do what you believe in and not be afraid to fight a good fight.  I did that with finally launching this blog last summer. I also did that with filing a grievance against Fairview University Medical Center last Fall, in preparation of my being able to struggle a little less with this task. While I remain focused at this time in raising money for the Zach Sobiech Osteosarcoma Fund, the irony is NOT lost on me, that while I believe that there are many amazing medical professionals affiliated with the Fairview system, as I also have friends employed there in clinical and administrative positions, as well as friends who were extremely satisfied with their experiences there as patients,  they did make it harder for me to get medical treatment then it should have been and that had consequences on my own children. All I was looking was for an apology. That will be though a topic for a future blog. 

    3. Some people are never going to get behind a cause unless it hits home. Or it’s the same few people who you can count on support for anything else, as it applies to social media.  I naively thought that with how horrifying children’s cancers are, that it would be easy for EVERYONE to retweet a link or share a link on Facebook, to raise awareness or make a donation in hopes of a cure or less invasive life extending treatments for children battling cancer. People say about me or think because I’m not raising my children anymore, or that I have so much free time, is why I am doing this. I can’t say I’d be doing this on this level  if I was still was working or raising my kids. I’d be doing something though after spending so much time on campus at Fairview University Medical Center and listening to parents of catastrophically ill kids and meeting those children. After hearing about Zach Sobiech? Most definitely.  I’d be doing something in gratitude that my own children have only been to FUMC once, and that was in Fall of 2010 to visit me after my gastric bypass was reversed and that they have the privilege AND luck of being in great health. 

   4. Because we get sometimes get thrown on paths we never imagine…. I learned most of all that I could take a really bad set of circumstances and use them for greater good for others and myself. Directly as a result of Zach Sobiech, his family, friends and the song “Clouds”.  It won’t change my past but I can change my present and my future, even it means I can only change how I choose to PERCEIVE it.  And I have positively effected other people when sharing my truths on this blog. I also was forced to step out of my comfort zone repeatedly, in positive ways, fortified in strength and some comfort that the song “Clouds” has provided me.

Initially with my campaign not going well to raise money for children’s cancer and my paltry donation to his fund, led me to go to Laura Sobiech’s book signing, a task I wouldn’t done, had it gone well from the start. And I personally got to thank her and explain a little of the profound effect that Zach, her family and his friends had on my life.  I’m learning even with my complex disabilities, I’m stronger and more capable of things, then I give myself credit for. And I wouldn’t have been this way now, if there wasn’t people like Zach Sobiech, his family and friends and if there wasn’t Soul Pancake which I didn’t know about until exactly a year ago. 

    As I’ve said, my disabilities limit my ability to follow through with commitment to things. My commitment to this, I’ve seen through to the best of my ability. While part of me is relieved that I don’t have to be enmeshed in this for too much longer, I will on occasion go in “children’s cancer” activist mode. I realize that is a privilege and due to luck. As hard as it was to ask people to spread awareness or money, I’ve seen up close and personal of how hard is for these families to have to battle children’s cancers. I’ve lived life 2 1/2 times longer than Zach Sobiech was given the opportunity to and he did way more in his 18 years, than I could ever dream to  accomplish.

But at least I’m doing something.  I think of all those kids who no longer have voices, because their lives were extinguished way too early and we will never know what they were capable of and that they had to fight so hard and die such a horrible painful death, so young. Parents who no longer have children and those who no longer have siblings. Children who do make the best if they have battled cancer and survived but they had to fight such a hard and ugly fight but saw beauty in it anyway. I can’t imagine what it’s like to experience it and because I’m grateful that my children are healthy, I will try to continue to do a minute part in hopes to help spread awareness and find a cure, but remaining true to what I’m better suited for in what I normally do activism for. 

    In my last day of trying to raise awareness of children’s cancers , I’m doing one final strong push for the Zach Sobiech Osteosarcoma Fund. Share one of the links I’ll provide. Donate what you’d spend on a cup a coffee. Download or purchase A Firm Handshake’s “Fix Me Up”. I don’t care if I’m associated with this or not. I just hope whoever reads this, if you aren’t doing something. That to honor Zach Sobiech and other children who’ve battled cancer that you do something. Today or any day. Thank you. 

http://www.childrenscancer.org/zach 

https://www.youtube.com/watch?v=7zxXAtmmLLc My Last Days: Zach Sobiech Celebrity Clouds Video 

https://www.youtube.com/watch?v=9NjKgV65fpo My Last Days: Meet Zach Sobiech 

https://www.youtube.com/watch?v=5iTImZGOtc4 My Last Days: Zach Sobiech, One Year Later 

https://www.youtube.com/watch?v=sDC97j6lfyc  Clouds by Zach Sobiech

https://www.youtube.com/watch?v=KvSYZHmhIAM Fix Me Up by Zach Sobiech, Sammy Brown/ A Firm Handshake….. It’s what Sammy is singing at Mall of America on 5/4/2014 at Laura Sobiech’s book signing of “Fly A Little Higher” ,that I took when I went to and took picture, featured above. 

Reflections of a “temporary” Children’s Cancers Activist…

  I’m on the 17th and (final) day of my social media campaign to raise awareness regarding children’s cancer, specifically Osteosarcoma which tragically took the life of Zach Sobiech, exactly one year ago today, on 5-20-2013. That’s when I first heard him about him, his family and his song “Clouds” and Soul Pancake videos because it was on People.com.. I started this campaign for awareness and donations to the Zach Sobiech Osteosarcoma Fund on 5-3-2014 which SHOULD HAVE been Zach’s 19th birthday. 

   I wasn’t exaggerating that hearing about him, his family and the song ACTUALLY did change my life. While as I said in my original Zach Sobiech blog on May 3rd, that it did change my life. I already had the life experience of being someone who was on campus from 2006-2010 at Fairview University Medical Center where he was (originally, as Amplatz didn’t open until 2011) , and while I suspected that when I saw the Soul Pancake videos, also exactly a year ago, I didn’t know that for sure, until I read Laura Sobiech’s book “Fly A Little Higher”.   

   So what did I actually learn from this experience in this last year and in the last 17 days???


    1. Don’t put off saying or doing anything that needs to be done today as you aren’t guaranteed in infinite time to get  what you want accomplished…… While my life experiences and circumstances have reinforced that, especially because of my memory loss issues, Zach Sobiech drove home how important what we be and what we do in the moment. And not to take that for granted. And be grateful for the experience.  

    2. Do what you believe in and not be afraid to fight a good fight.  I did that with finally launching this blog last summer. I also did that with filing a grievance against Fairview University Medical Center last Fall, in preparation of my being able to struggle a little less with this task. While I remain focused at this time in raising money for the Zach Sobiech Osteosarcoma Fund, the irony is NOT lost on me, that while I believe that there are many amazing medical professionals affiliated with the Fairview system, as I also have friends employed there in clinical and administrative positions, as well as friends who were extremely satisfied with their experiences there as patients,  they did make it harder for me to get medical treatment then it should have been and that had consequences on my own children. All I was looking was for an apology. That will be though a topic for a future blog. 

    3. Some people are never going to get behind a cause unless it hits home. Or it’s the same few people who you can count on support for anything else, as it applies to social media.  I naively thought that with how horrifying children’s cancers are, that it would be easy for EVERYONE to retweet a link or share a link on Facebook, to raise awareness or make a donation in hopes of a cure or less invasive life extending treatments for children battling cancer. People say about me or think because I’m not raising my children anymore, or that I have so much free time, is why I am doing this. I can’t say I’d be doing this on this level  if I was still was working or raising my kids. I’d be doing something though after spending so much time on campus at Fairview University Medical Center and listening to parents of catastrophically ill kids and meeting those children. After hearing about Zach Sobiech? Most definitely.  I’d be doing something in gratitude that my own children have only been to FUMC once, and that was in Fall of 2010 to visit me after my gastric bypass was reversed and that they have the privilege AND luck of being in great health. 

   4. Because we get sometimes get thrown on paths we never imagine…. I learned most of all that I could take a really bad set of circumstances and use them for greater good for others and myself. Directly as a result of Zach Sobiech, his family, friends and the song “Clouds”.  It won’t change my past but I can change my present and my future, even it means I can only change how I choose to PERCEIVE it.  And I have positively effected other people when sharing my truths on this blog. I also was forced to step out of my comfort zone repeatedly, in positive ways, fortified in strength and some comfort that the song “Clouds” has provided me.

   Initially with my campaign not going well to raise money for children’s cancer and my paltry donation to his fund, led me to go to Laura Sobiech’s book signing, a task I wouldn’t done, had it gone well from the start. And I personally got to thank her and explain a little of the profound effect that Zach, her family and his friends had on my life.  I’m learning even with my complex disabilities, I’m stronger and more capable of things, then I give myself credit for. And I wouldn’t have been this way now, if there wasn’t people like Zach Sobiech, his family and friends and if there wasn’t Soul Pancake which I didn’t know about until exactly a year ago. 

    As I’ve said, my disabilities limit my ability to follow through with commitment to things. My commitment to this, I’ve seen through to the best of my ability. While part of me is relieved that I don’t have to be enmeshed in this for too much longer, I will on occasion go in “children’s cancer” activist mode. I realize that is a privilege and due to luck. As hard as it was to ask people to spread awareness or money, I’ve seen up close and personal of how hard is for these families to have to battle children’s cancers. I’ve lived life 2 1/2 times longer than Zach Sobiech was given the opportunity to and he did way more in his 18 years, than I could ever dream to  accomplish.

    But at least I’m doing something.  I think of all those kids who no longer have voices, because their lives were extinguished way too early and we will never know what they were capable of and that they had to fight so hard and die such a horrible painful death, so young. Parents who no longer have children and those who no longer have siblings. Children who do make the best if they have battled cancer and survived but they had to fight such a hard and ugly fight but saw beauty in it anyway. I can’t imagine what it’s like to experience it and because I’m grateful that my children are healthy, I will try to continue to do a minute part in hopes to help spread awareness and find a cure, but remaining true to what I’m better suited for in what I normally do activism for. 

    In my last day of trying to raise awareness of children’s cancers , I’m doing one final strong push for the Zach Sobiech Osteosarcoma Fund. Share one of the links I’ll provide. Donate what you’d spend on a cup a coffee. Download or purchase A Firm Handshake’s “Fix Me Up”. I don’t care if I’m associated with this or not. I just hope whoever reads this, if you aren’t doing something. That to honor Zach Sobiech and other children who’ve battled cancer that you do something. Today or any day. Thank you. 

http://www.childrenscancer.org/zach 

https://www.youtube.com/watch?v=7zxXAtmmLLc My Last Days: Zach Sobiech Celebrity Clouds Video 

https://www.youtube.com/watch?v=9NjKgV65fpo My Last Days: Meet Zach Sobiech 

https://www.youtube.com/watch?v=5iTImZGOtc4 My Last Days: Zach Sobiech, One Year Later 

https://www.youtube.com/watch?v=sDC97j6lfyc  Clouds by Zach Sobiech

https://www.youtube.com/watch?v=KvSYZHmhIAM Fix Me Up by Zach Sobiech, Sammy Brown/ A Firm Handshake….. It’s what Sammy is singing at Mall of America on 5/4/2014 at Laura Sobiech’s book signing of “Fly A Little Higher” ,that I took when I went to and took picture, featured above.