Posted on December 22, 2017
“So this is Christmas and what have you done?”
There are so many great Christmas songs and my favorite is Little Drummer Boy. Right up there though is John Lennon’s Happy Christmas (War is Over). The first lyric always causes me to reflect on the question it poses and often I feel like I’ve fallen short of whatever self-expectation those words conjure up. I don’t mind because this reflection helps me strive to do more, to be better, to be impactful in some way. A few years back when Grace was attending pre-school at Oak Grove Academy she had an amazing woman as a teacher, Ms. Linda. She was (and is) such an incredible teacher and helped prepare our Grace and every child in her care for the rigors of school. Linda came into our lives when Jack was dealing with the worst of his NF and was a wonderful friend and supporter. As kids tend to do, Grace graduated to kindergarten and left the care of Linda to pursue her education at Cogburn Woods Elementary where her brothers had been busy making their mark.
While she still had Grace in her class, Ms Linda surprised us by asking us if Jack would come to speak to her class about Neurofibromatosis. Apparently his little sister Grace talked about both of her brothers a lot and would often bring up Jack’s illness. We talked to Jack about it and he consented to speak to the 4 year olds about NF. Grace was so proud of him and what we didn’t know is that Ms. Linda had organized the other families and parents to raise donations for CureNFwithJack. It was quite a wonderful day for Jack to speak about NF and empower him to tell his story to an audience. The audience of curious, and well-behaved four year olds listened attentively and Jack shared his story for a new audience.
Yesterday, Jack was invited back by Ms. Linda to share his story with a “fresh crop” of 4 year olds. He had just come off a busy week at middle school where he finished his mid-term exams. When Beth told him he was invited back to “speak to the kids” he was very excited. Once again, the audience was attentive and once again Ms. Linda arranged for a donation to CureNFwithJack.
When I looked at the photos yesterday I was struck at the humanity of all of this. Ms. Linda, who was never Jack’s teacher, could have decided to never get involved. Instead she empowered Jack and our family and helped us educate others about this important topic. She raised awareness and dollars and gave Jack and our family so much more. She gave us hope through her actions. She did it again this Christmas. I see my boy in these photos as someone who knows he has a significant challenge, one that many others would run away from quickly and consistently. Instead he faces it head on every day and invites us all into the most private elements of his life. Through that he inspires others to be good and to do good in a world that is incredibly lacking in those virtues. He fights his fight and brings his NF brothers and sisters with him toward that cure. He makes me so proud.
Coincidentally, Happy Christmas (War is Over) came on as I was reviewing the photos and BOOM! The lyric at the top “And so this is Christmas, and what have you done?” I thought to myself, look what Linda and Jack have done for Christmas? So much good and so much love. That little girl in the picture with Jack is well served by having Ms. Linda teaching her academic topics, but way beyond that the dose of humanity she teaches these young minds is priceless. As for Jack, I can’t be objective because he is my boy but the gifts he continues to bring our family and the community through his courage, humor, tenacity and personality are why I don’t need to ask Santa for anything. Along with his brother Luke and sister Grace I’ve got more than I need.
My wish for you is that you too have “enough” of what you need and that you shine your light toward others if you can. Lastly, I hope you feel good about responding to John Lennon’s question this year and every year. Thank you all for your continued support of CureNFwithJack. 2017 was another great year and 2018 will be too. Stay with Jack, he needs you.
Tomorrow there is HOPE and you are among the reasons why. Don’t ever forget that fact. EVER.
Merry Christmas, Happy Holidays, and Happy New Year!
Jake, Beth, Jack, Luke and Grace
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