I don’t write as often anymore. I don’t know why. It is not because I don’t have as many thoughts swirling around my head. That is totally not it. Just ask my husband. It is just there is not as much information on Daniel I guess that needs to be shared in a timely manner like it used to and this is becoming more of a tool for me to express myself about what I go through on a day to day basis. I think it is becoming more of my blog now more than Daniel’s blog and that is kind of representing how our life is becoming and you know what? That is fine by me.
Let me share an example of exactly what I mean by this. So I think I have mentioned this before, but Daniel was told he is not allowed to play soccer yet. One he really doesn’t have the energy or is in the greatest shape for it yet and two really should not head a ball or get hit really hard…just in case. His platelets are still sometimes still very low and he is not expected to heal or recover well from injury if they should happen. These are the variety of reasons for not playing so Daniel has chosen to assist coach the middle school team which is great. He is involved and active with that. But the other afternoon he calls me and says bring him stuff (shorts/shirt) he needs to help sub for varsity soccer because they are short a guy so if he just sits on the sideline then they can have a chance to step out for water, otherwise the players don’t get to come off the field at all. Fine whatever. Gorgeous day, enjoy the fresh air. This makes it my third round trip to school dropping stuff off that day anyway but no worries, what are moms for right? So I come back to school at, I don’t know 4:45, 15 minutes into the game. I thought I would come watch the boys play and enjoy the afternoon outside and as I walk up to the field all parents eyes turn to me approaching- this is not good- what, what did I do? Is my skirt tucked into my pantyhose, what? “Daniel is doing GREAT!!!!” WTF! What am I supposed to do know, run on the field and pull him off? He already gave me the look earlier in the day when I took his shirt and shorts that he asked for to his classroom and made an ‘appearance’ in front of his friends. The team was short of players so Hailpern IS IN for the whole FRIGGIN game. No breaks either. I look up and there he is. I only recognized him by the big grin on his face. His choice. I know how sore and tired he is going to be. I know the consequences. I have my finger on #4 speed dial to the 7th floor clinic. I put on a fake grin and actually pay attention to my first school soccer came in my life. He did okay. I know he was exhausted and sore. And then as the other players charged towards hi my held my breath and saw how he did his fair share of hitting and shoving. He took one hard hit and again all eyes were on me. I shrugged it off and jokingly said “Send that kid the bill from Children’s”. I’m not sure how that went over. Well Daniel stayed in the entire game and afterwards came to me and had a kind of guilty look on his face. First thing he said was “that was so much fun, I am playing all the rest of the games for the season, they need me” and then he asked me to promise to not tell Dr. Craddock about it. What I took away from this was that he is pretty much on his own now. He feels physically good enough and his numbers and blood tests are supporting this and he feels he can do it and he can recover from the exhaustion or deal with the consequences. He is making these decisions and getting back to his life and that is fine by me.
Last night was the Children’s Hospital Gala. I have been looking forward to it because I like a having an excuse to get all dressed up and fancy and especially to support such a good cause. Last year we were invited as guests by our friends Michael and Anne Marie Foonberg who sponser a table for their lovely children. Annie has been a wonderful friend and was so supportive last year and knew that even though we were in the total thick of it I needed a night out from the hospital. She pushed and encouraged me last year and it was difficult to pull it together but we did and it was an amazing night last year. My wonderful friend Ronit came to ‘hang out’ with Daniel at the hospital and on that night I met a new friend Emily, through the Foonberg’s that has also been through quite a year of change. As I was getting ready this year I decided to call Emily to reconnect and see how her and her son were doing and she was also going to the Gala again. I was so glad to get to do this as she returned in a much different place this year as well . Both of us in so much better places with our boys. She commented on how glad she was t see me without my hospital band. Remembering going back to the hospital room after the gala last year was hard. This year instead of being guests we decided to co-sponser our table with the Foonbergs and show our support for the hospital and we invited our own friends that have supported us along the way. It was a wonderful night that we got to share with our friends but this year was so very different from last year. We were in such a different place last year. I was getting ready in the hospital bathroom, we didn’t know what would happen and if Daniel would even have a transplant let alone if it would be successful, I was 20 pounds lighter and my worries were so much greater. I didn’t smile then really and I am not sure if I cried more then (the jury is still out on that one) , but it sure feels like a thousand years ago. And I thought about all of this as I got ready to go. I texted Ronit to remind her about that night and sure enough she had her own wonderful memories of how special that night was spending it with Daniel while we were gone. She immediately came up with the idea to take him with her for the night and her family because he is part of her family she said (and I was crying again). During the night I got pictures of Daniel and Ronit and she said she has created a new tradition. This is fine by me.
Daniel was supposed to be at the Gala but chose to not be. It was probably a wise choice. He actually probably would have been bored, and not liked the formal, but who knows, but actually he was there and not only in our hearts and minds because almost everyone that I encountered and was introduced to already knew a bit of our story and certainly knew of Daniel. It was wonderful to spend the night singing his praises and telling of his accomplishments. The night is meant to celebrate the hospital and raise money for it and that it certainly did. They honored a very deserving family this year and although I feel Daniel has accomplished so much and is very deserving I am reminded of all of the other families that have their own stories. I know of the families that battle for years and years and we have only been attending this Gala for two years. Last year we were invited guests, this year we cosponsored a table, next year …not sure and who knows maybe Daniel will be honored one day. Actually by the sounds of all the people I talked to and meet Daniel is honored everyday. Last year there were more people we knew but this year there seemed to be more people that knew us because of Daniel. In fact time and time again I was introduced as Daniel’s mom and you know what …That is FINE BY ME.
Let me share an example of exactly what I mean by this. So I think I have mentioned this before, but Daniel was told he is not allowed to play soccer yet. One he really doesn’t have the energy or is in the greatest shape for it yet and two really should not head a ball or get hit really hard…just in case. His platelets are still sometimes still very low and he is not expected to heal or recover well from injury if they should happen. These are the variety of reasons for not playing so Daniel has chosen to assist coach the middle school team which is great. He is involved and active with that. But the other afternoon he calls me and says bring him stuff (shorts/shirt) he needs to help sub for varsity soccer because they are short a guy so if he just sits on the sideline then they can have a chance to step out for water, otherwise the players don’t get to come off the field at all. Fine whatever. Gorgeous day, enjoy the fresh air. This makes it my third round trip to school dropping stuff off that day anyway but no worries, what are moms for right? So I come back to school at, I don’t know 4:45, 15 minutes into the game. I thought I would come watch the boys play and enjoy the afternoon outside and as I walk up to the field all parents eyes turn to me approaching- this is not good- what, what did I do? Is my skirt tucked into my pantyhose, what? “Daniel is doing GREAT!!!!” WTF! What am I supposed to do know, run on the field and pull him off? He already gave me the look earlier in the day when I took his shirt and shorts that he asked for to his classroom and made an ‘appearance’ in front of his friends. The team was short of players so Hailpern IS IN for the whole FRIGGIN game. No breaks either. I look up and there he is. I only recognized him by the big grin on his face. His choice. I know how sore and tired he is going to be. I know the consequences. I have my finger on #4 speed dial to the 7th floor clinic. I put on a fake grin and actually pay attention to my first school soccer came in my life. He did okay. I know he was exhausted and sore. And then as the other players charged towards hi my held my breath and saw how he did his fair share of hitting and shoving. He took one hard hit and again all eyes were on me. I shrugged it off and jokingly said “Send that kid the bill from Children’s”. I’m not sure how that went over. Well Daniel stayed in the entire game and afterwards came to me and had a kind of guilty look on his face. First thing he said was “that was so much fun, I am playing all the rest of the games for the season, they need me” and then he asked me to promise to not tell Dr. Craddock about it. What I took away from this was that he is pretty much on his own now. He feels physically good enough and his numbers and blood tests are supporting this and he feels he can do it and he can recover from the exhaustion or deal with the consequences. He is making these decisions and getting back to his life and that is fine by me.
Last night was the Children’s Hospital Gala. I have been looking forward to it because I like a having an excuse to get all dressed up and fancy and especially to support such a good cause. Last year we were invited as guests by our friends Michael and Anne Marie Foonberg who sponser a table for their lovely children. Annie has been a wonderful friend and was so supportive last year and knew that even though we were in the total thick of it I needed a night out from the hospital. She pushed and encouraged me last year and it was difficult to pull it together but we did and it was an amazing night last year. My wonderful friend Ronit came to ‘hang out’ with Daniel at the hospital and on that night I met a new friend Emily, through the Foonberg’s that has also been through quite a year of change. As I was getting ready this year I decided to call Emily to reconnect and see how her and her son were doing and she was also going to the Gala again. I was so glad to get to do this as she returned in a much different place this year as well . Both of us in so much better places with our boys. She commented on how glad she was t see me without my hospital band. Remembering going back to the hospital room after the gala last year was hard. This year instead of being guests we decided to co-sponser our table with the Foonbergs and show our support for the hospital and we invited our own friends that have supported us along the way. It was a wonderful night that we got to share with our friends but this year was so very different from last year. We were in such a different place last year. I was getting ready in the hospital bathroom, we didn’t know what would happen and if Daniel would even have a transplant let alone if it would be successful, I was 20 pounds lighter and my worries were so much greater. I didn’t smile then really and I am not sure if I cried more then (the jury is still out on that one) , but it sure feels like a thousand years ago. And I thought about all of this as I got ready to go. I texted Ronit to remind her about that night and sure enough she had her own wonderful memories of how special that night was spending it with Daniel while we were gone. She immediately came up with the idea to take him with her for the night and her family because he is part of her family she said (and I was crying again). During the night I got pictures of Daniel and Ronit and she said she has created a new tradition. This is fine by me.
Daniel was supposed to be at the Gala but chose to not be. It was probably a wise choice. He actually probably would have been bored, and not liked the formal, but who knows, but actually he was there and not only in our hearts and minds because almost everyone that I encountered and was introduced to already knew a bit of our story and certainly knew of Daniel. It was wonderful to spend the night singing his praises and telling of his accomplishments. The night is meant to celebrate the hospital and raise money for it and that it certainly did. They honored a very deserving family this year and although I feel Daniel has accomplished so much and is very deserving I am reminded of all of the other families that have their own stories. I know of the families that battle for years and years and we have only been attending this Gala for two years. Last year we were invited guests, this year we cosponsored a table, next year …not sure and who knows maybe Daniel will be honored one day. Actually by the sounds of all the people I talked to and meet Daniel is honored everyday. Last year there were more people we knew but this year there seemed to be more people that knew us because of Daniel. In fact time and time again I was introduced as Daniel’s mom and you know what …That is FINE BY ME.