One day this winter at an indoor soccer game as I sat watching my son play soccer and my husband coach, a man named Tac came up to me, I knew Tac because my son had played soccer with his son and I knew he coached also, but I did not know him well. Tac said that he knew of Bert being diagnosed with ALS and the Panthers wanted to do a fundraiser for him and for us. I didn’t know what to say…I was caught off guard, I hadn’t really thought about needing any kind of help. I was still in the stage of disbelief or at least the when the time comes stage. Believe me I know what ALS is, what it will do and the care that is to come…I probably earned a google PhD over the past year researching it, but I may not have or may not be ready to believe it will actually happen. See, that’s the really hard thing about ALS…there is no treatment and no cure and you can see what is to come and what has happened to others, but how can you have hope and truly believe that it can be different, that a treatment or a cure can be found if you succumb to what is known. It’s a fine line between being realistic, planning ahead and believing that a treatment or a cure will be found. I don’t like to blur that line. I DO BELIEVE and I DO HAVE HOPE so I like to keep that realism in the background. I am, however; willing to plan for the worst and hope for the best. Sophia gets so annoyed with us if she thinks we are blurring that line…she will remind us to follow the rules, that dad can be the exception and things might not turn out how you think, I of course remind her that it’s always better to be safe than sorry. And being in a wheelchair eventually isn’t the worst thing that could happen…it’s better to be prepared then to have to scramble at the last minute and be stressed even more. So…we struggle for that happy medium.
After the game that day I told Bert what Panther’s wanted to do, and he was surprised and happy, didn’t really know how to feel or what to think, other than emotional and grateful. Little did we know then what Panthers United Soccer Association and our community had in store for us and how they would bring awareness to ALS! The event was set for March 1st, Bert is on the Panther’s board and he receives emails so he forwarded me one in January that basically explained what the event was…teams playing soccer, a raffle and donations at the gate would be accepted. I thought it sounded great, I didn’t really know what to do or think…finally on January 24th I sent an email to a girl named Samantha Christenberry. I didn’t really know Samantha well either, I stood next to my husband a couple of times when he talked to her about soccer stuff and I knew she was a coach and her son played soccer but that was about it. Anyway, I felt like someone needed to know that we were very thankful and to that point I had not even really told people the whole story. It wasn’t till my sister in law from Texas sent me a text about the t-shirts that I realized this event was going to be a big one. I am in the dark ages I guess…not on Facebook at the time, I had not checked the Panther’s site and I had not realized there were shirts, little things were setting both Bert and I off at this point and seeing these t-shirts made me burst into tears! I was so touched by Panthers and Samantha and Tac and everyone who was putting this together for Bert and for awareness for ALS.
Bert and I were becoming a little frustrated at times and I think that is the case for a lot of people living with ALS because I read it in many of the stories with the fact that not many people know what ALS is or if they do they don’t know what it actually does to a person and their family. I had been pretty private and only really talked about personal things with my close family and maybe one or two friends, and I was kind of whiny about the fact that people might know what was going on with us…I know that’s silly but that’s just how I felt. I was also whiny about how many people didn’t know what ALS was…I mean hadn’t they seen Steve Gleason or OJ Brigance, don’t people watch football!? Bert was actually the one who finally said “Jennifer, you need to decide do you want people to be aware of ALS or not, because if you want people to be aware then we have to tell everyone if not don’t whine!” I thought about that for about a minute and figured what do we have to lose let’s just tell everyone because everyone needs to be AWARE for there to be a treatment or cure found and my husband’s life depends on it. Bert is not the blogging, instagramming, twittering, face booking type…you would be lucky if you get a text back from him and if you do it will be like 8 hours after you texted him. This is the reason I am doing the blogging, he is however; sitting beside me while I ask him how do you feel with this or about that and is this viewpoint accurate? So these stories are really our stories, it’s just me doing the typing and the updating. This Freeze out Friendly was the perfect way to start spreading the word about ALS and Samantha was the perfect person to help us do the job!
So many people came together to make the Freeze Out Friendly a Success, I wish I would have had a sign in sheet or some way to reach out to everyone and say thank you. Panthers United Soccer Association is just so great, and that word really doesn’t even begin to describe how we feel…Samantha, Andy Kakos (the President of Panthers), and Tac Thomas were the leaders who headed the event among many other coaches, board members, and team parents. There were friendly soccer games played all day between all ages, even a friendly coaches game which Bert coached and they tied which I thought was so fitting for the event. There was a food vender that had breakfast, lunch and dinner and the food was awesome! Raffles there were…many items from gift baskets to certificates to electronics and goodies all donated for the cause. Bracelets, necklaces, key chains and inspirational frames all proceeds donated. Walkers and runners who had friends and family sponsor them for the event. People donated money and time; they wore their blue ALS Has Met It’s Match Freeze out Friendly t-shirts with pride and came together as a team for Bert and to bring awareness to ALS! There was even a photographer from Bernlohr photography taking pictures. People gave us special cards with messages of encouragement, friends and family came from afar…I want to name every single person but there is just not enough space…you all know who you are.
Panthers United Soccer Association brought the community of York County and the surrounding together and I feel strongly that everyone there left knowing what ALS is and wanting to find treatment and a cure too!
Now, there is just no way to say thank you…I mean it’s just not something that can be put into words. What we feel is a support so deep that it makes us feel like we have a whole team behind us and we can do anything. We are so grateful and so humbled by so many people, some who knew us, some who didn’t, but all who were willing to work together for this cause. It made everything seem manageable to me, like no matter what ALS will not win. If at any point during this journey so far I ever felt lost or that hope was fading…the Freeze out Friendly lit a fire inside that made Bert, Sophie, Alex and I feel like anything is possible.
I may not have known Samantha when this started but now we feel like she is part of our family. She is a generous girl who has a talent for coordinating people and events and bringing everyone together. The Sunday before the FOF she brought over 10 meals that the boys from her team, Lightning had made, they are so yummy and it was so thoughtful. She should be proud of her boys, her leadership and what she is teaching them and this community about helping others. She is genuine, kind and we love her. Tac, is such an excellent example of leadership as well, he was able to work with the school so that the event was able to be held inside, he printed my thank you and the article from the York Daily Record so people could see our story, he MC’d the event and coordinated the teams and games…he is a wonderful friend and coach and sets such a good example for the Panther boys and girls and for the community. I only just met Andy this weekend, he is another great example of leadership for the Panthers and our community, he spent time with me and checked on us frequently making sure Bert was ok and he kept everything running smoothly.
Thanks to our family your unconditional love and support is what keeps us going. Thanks to all our friends and co-workers for your daily support and love.
We don’t want anyone to feel left out or offended reading this blog, for we are so grateful from the bottom of our hearts for every single person who helped with this Freeze out Friendly event. We are so thankful for the community support, the school district for allowing the use of the school gym and indoor track and for everyone who came out to support us and bring awareness to ALS. Bert loves coaching the Panther Claws, the boys are a good team and we have generous parents who volunteer to help. This disease can happen to anyone at any time and it really needs to be focused on and stopped.
We hope to use some of the money toward remodeling our bathroom to make it wheelchair assessable and donate some of the money as well, we will keep you posted on who the donations go to and it will be from Panthers United Soccer Association and the York County Community.
http://www.panthersusa.net/page/show/1126401-freeze-out-friendly
xoxo Jennifer
After the game that day I told Bert what Panther’s wanted to do, and he was surprised and happy, didn’t really know how to feel or what to think, other than emotional and grateful. Little did we know then what Panthers United Soccer Association and our community had in store for us and how they would bring awareness to ALS! The event was set for March 1st, Bert is on the Panther’s board and he receives emails so he forwarded me one in January that basically explained what the event was…teams playing soccer, a raffle and donations at the gate would be accepted. I thought it sounded great, I didn’t really know what to do or think…finally on January 24th I sent an email to a girl named Samantha Christenberry. I didn’t really know Samantha well either, I stood next to my husband a couple of times when he talked to her about soccer stuff and I knew she was a coach and her son played soccer but that was about it. Anyway, I felt like someone needed to know that we were very thankful and to that point I had not even really told people the whole story. It wasn’t till my sister in law from Texas sent me a text about the t-shirts that I realized this event was going to be a big one. I am in the dark ages I guess…not on Facebook at the time, I had not checked the Panther’s site and I had not realized there were shirts, little things were setting both Bert and I off at this point and seeing these t-shirts made me burst into tears! I was so touched by Panthers and Samantha and Tac and everyone who was putting this together for Bert and for awareness for ALS.
Bert and I were becoming a little frustrated at times and I think that is the case for a lot of people living with ALS because I read it in many of the stories with the fact that not many people know what ALS is or if they do they don’t know what it actually does to a person and their family. I had been pretty private and only really talked about personal things with my close family and maybe one or two friends, and I was kind of whiny about the fact that people might know what was going on with us…I know that’s silly but that’s just how I felt. I was also whiny about how many people didn’t know what ALS was…I mean hadn’t they seen Steve Gleason or OJ Brigance, don’t people watch football!? Bert was actually the one who finally said “Jennifer, you need to decide do you want people to be aware of ALS or not, because if you want people to be aware then we have to tell everyone if not don’t whine!” I thought about that for about a minute and figured what do we have to lose let’s just tell everyone because everyone needs to be AWARE for there to be a treatment or cure found and my husband’s life depends on it. Bert is not the blogging, instagramming, twittering, face booking type…you would be lucky if you get a text back from him and if you do it will be like 8 hours after you texted him. This is the reason I am doing the blogging, he is however; sitting beside me while I ask him how do you feel with this or about that and is this viewpoint accurate? So these stories are really our stories, it’s just me doing the typing and the updating. This Freeze out Friendly was the perfect way to start spreading the word about ALS and Samantha was the perfect person to help us do the job!
So many people came together to make the Freeze Out Friendly a Success, I wish I would have had a sign in sheet or some way to reach out to everyone and say thank you. Panthers United Soccer Association is just so great, and that word really doesn’t even begin to describe how we feel…Samantha, Andy Kakos (the President of Panthers), and Tac Thomas were the leaders who headed the event among many other coaches, board members, and team parents. There were friendly soccer games played all day between all ages, even a friendly coaches game which Bert coached and they tied which I thought was so fitting for the event. There was a food vender that had breakfast, lunch and dinner and the food was awesome! Raffles there were…many items from gift baskets to certificates to electronics and goodies all donated for the cause. Bracelets, necklaces, key chains and inspirational frames all proceeds donated. Walkers and runners who had friends and family sponsor them for the event. People donated money and time; they wore their blue ALS Has Met It’s Match Freeze out Friendly t-shirts with pride and came together as a team for Bert and to bring awareness to ALS! There was even a photographer from Bernlohr photography taking pictures. People gave us special cards with messages of encouragement, friends and family came from afar…I want to name every single person but there is just not enough space…you all know who you are.
Panthers United Soccer Association brought the community of York County and the surrounding together and I feel strongly that everyone there left knowing what ALS is and wanting to find treatment and a cure too!
Now, there is just no way to say thank you…I mean it’s just not something that can be put into words. What we feel is a support so deep that it makes us feel like we have a whole team behind us and we can do anything. We are so grateful and so humbled by so many people, some who knew us, some who didn’t, but all who were willing to work together for this cause. It made everything seem manageable to me, like no matter what ALS will not win. If at any point during this journey so far I ever felt lost or that hope was fading…the Freeze out Friendly lit a fire inside that made Bert, Sophie, Alex and I feel like anything is possible.
I may not have known Samantha when this started but now we feel like she is part of our family. She is a generous girl who has a talent for coordinating people and events and bringing everyone together. The Sunday before the FOF she brought over 10 meals that the boys from her team, Lightning had made, they are so yummy and it was so thoughtful. She should be proud of her boys, her leadership and what she is teaching them and this community about helping others. She is genuine, kind and we love her. Tac, is such an excellent example of leadership as well, he was able to work with the school so that the event was able to be held inside, he printed my thank you and the article from the York Daily Record so people could see our story, he MC’d the event and coordinated the teams and games…he is a wonderful friend and coach and sets such a good example for the Panther boys and girls and for the community. I only just met Andy this weekend, he is another great example of leadership for the Panthers and our community, he spent time with me and checked on us frequently making sure Bert was ok and he kept everything running smoothly.
Thanks to our family your unconditional love and support is what keeps us going. Thanks to all our friends and co-workers for your daily support and love.
We don’t want anyone to feel left out or offended reading this blog, for we are so grateful from the bottom of our hearts for every single person who helped with this Freeze out Friendly event. We are so thankful for the community support, the school district for allowing the use of the school gym and indoor track and for everyone who came out to support us and bring awareness to ALS. Bert loves coaching the Panther Claws, the boys are a good team and we have generous parents who volunteer to help. This disease can happen to anyone at any time and it really needs to be focused on and stopped.
We hope to use some of the money toward remodeling our bathroom to make it wheelchair assessable and donate some of the money as well, we will keep you posted on who the donations go to and it will be from Panthers United Soccer Association and the York County Community.
http://www.panthersusa.net/page/show/1126401-freeze-out-friendly
xoxo Jennifer
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