Thanksgiving is tomorrow...the day of much feasting! The focus of this day used to be on gastrointestinal fortitude. I would plan my eating to maximize the total amount of food I could eat. This type of thanksgiving has ceased to exist for me. That's probably not such a bad thing.
Instead if focusing on food I would like to take a few moments to to reflect and give thanks, because I have so much to be thankful for. One might conclude that this has been a bad year for me, but I think it's been my best year yet. 2013 is the year that Erdheim Chester Disease taught me the secret of life.
Instead if focusing on food I would like to take a few moments to to reflect and give thanks, because I have so much to be thankful for. One might conclude that this has been a bad year for me, but I think it's been my best year yet. 2013 is the year that Erdheim Chester Disease taught me the secret of life.
I want to give thanks to the following people, in no particular order.
DawnMarie. My wife has taken over everything this year. She has cried with me, traveled with me, picked up the slack for me, lived with me as I am (which isn't easy sometimes). I'm not sure I would have even gone to the Dr. if it were not for her. I love you.
Parents. My parents and my wife's parents have shown me a lot of love, comfort, and understanding. They have watched the kids while I attended doctor's visits and been there with us the whole way. We couldn't maintain normalcy for the kids without them. Thank you for showing your love for me in a real and tangible way.
Colleagues. The staff and administration at my work have been phenomenal. They are constantly checking in with me and offering to help with anything I need. They arranged for my classes to be near the bathroom and in one room (which may seem small to you but is a giant thing for me). They have never questioned my need for doctors visits or my ability to do my job. They are lovely people and I am thankful that I get to work with them every day.
ECD Global Alliance. Kathy and the people at the ECD Global Alliance were a desperately needed source of information when I knew nothing about ECD. Across the board the people I have met who have ECD have been helpful and understanding. Thank You.
Blog Family. I know that on this blog I am the one doing the talking and most of you never respond. The simple fact that I know people are listening has been a giant stress relief for me. Here on this page I can pour it all out, then move in leaving the pain and depression behind. For at least a day, for that I am thankful.
WEGO Health. WEGO health is a group that is committed to supporting health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.Thank you for the work your doing helping all of us with rare diseases get the word out.
Rare Connect. Rare Connect started locally and has created a platform where people with the same rare disease can meet and discuss issues that are relevant to them. On rare connect I get to share what I have learned and ask question to people who have experienced what I am experiencing.
Kids. My kids, particularly Isabella have been very understanding. Isabella reads my blog and talks to me about it. Keegan asks me how my cuts are (the scars from my surgery). They have asked questions comfortably and accepted the answers they have been given. We have talked about pain, surgery, and death. Overall they have accepted how our lives have changed with grace and understanding that surpasses their years.
DawnMarie. My wife has taken over everything this year. She has cried with me, traveled with me, picked up the slack for me, lived with me as I am (which isn't easy sometimes). I'm not sure I would have even gone to the Dr. if it were not for her. I love you.
Parents. My parents and my wife's parents have shown me a lot of love, comfort, and understanding. They have watched the kids while I attended doctor's visits and been there with us the whole way. We couldn't maintain normalcy for the kids without them. Thank you for showing your love for me in a real and tangible way.
Colleagues. The staff and administration at my work have been phenomenal. They are constantly checking in with me and offering to help with anything I need. They arranged for my classes to be near the bathroom and in one room (which may seem small to you but is a giant thing for me). They have never questioned my need for doctors visits or my ability to do my job. They are lovely people and I am thankful that I get to work with them every day.
ECD Global Alliance. Kathy and the people at the ECD Global Alliance were a desperately needed source of information when I knew nothing about ECD. Across the board the people I have met who have ECD have been helpful and understanding. Thank You.
Blog Family. I know that on this blog I am the one doing the talking and most of you never respond. The simple fact that I know people are listening has been a giant stress relief for me. Here on this page I can pour it all out, then move in leaving the pain and depression behind. For at least a day, for that I am thankful.
WEGO Health. WEGO health is a group that is committed to supporting health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.Thank you for the work your doing helping all of us with rare diseases get the word out.
Rare Connect. Rare Connect started locally and has created a platform where people with the same rare disease can meet and discuss issues that are relevant to them. On rare connect I get to share what I have learned and ask question to people who have experienced what I am experiencing.
Kids. My kids, particularly Isabella have been very understanding. Isabella reads my blog and talks to me about it. Keegan asks me how my cuts are (the scars from my surgery). They have asked questions comfortably and accepted the answers they have been given. We have talked about pain, surgery, and death. Overall they have accepted how our lives have changed with grace and understanding that surpasses their years.
Son, I think this may be the best bad year you have had.
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