Christmas 2016

Now that the kids are back as school I have a few minutes to write about Christmas this year.

In all honesty, the weeks leading up to Christmas were particularly difficult for me this year. For the first time since Sam was diagnosed, I really started to feel like we don’t have many, if any, more Christmases left with him. This isn’t based on anything really, there is no evidence to suggest that Sam will not be with us for a while to come. Still I found myself breaking down every time I was trying to shop for gifts or do anything Christmas related, which is very unusual for me. I found it hard to go through the motions of celebrating, decorating and all the traditions that I normally love.

We were very fortunate that a few things happened this Christmas that really helped me be able to focus and made it a special holiday for all of us.

A few weeks before Christmas we received an unexpected package from the Jackson Project.  The organization was formed in honor of Jackson Wallace, who fought another form of Leukodystrophy called Krabbe Disease. Jackson passed away July 4th, 2016 at the age of 3 years and 3 months old. A package that was filled with some of the things that Jackson loved (and Sam now loves too – especially a therapy neck wrap that Sam has named Chester) with a beautiful note. A note that gave me hope for life after Sam. The ability of Jackson’s family to give to others so soon after experiencing such a devastating loss themselves is inspirational, and what I hope we will be able to do once Sam is gone. I am so grateful to Jackson and his family for giving us exactly what we needed at exactly the right time. A small gesture that meant so much and a necessary reminder that Sam is still here. I love that Jackson is still having an impact on others’ lives even though he is gone from this earth.

Secondly, Baking Memories 4 Kids happened. Much earlier in the year I applied and we were accepted for a trip to Give Kids the World in Orlando. Baking Memories 4 Kids is an organization started by the wonderful Frank S. after his own battle with cancer that sends kids with life threatening illnesses to Disney for a week. We booked the trip for the week before Christmas and are so glad we did. It truly was the trip of a lifetime and is right up there with our F1 weekends as one of our most memorable experiences. They way the characters and staff at Disney and Give Kids the World interacted with Sam and went out of their way to make his trip extraordinary really  made us feel like we were witnessing something rare and special. After a year when it seems there is nothing but anger and hatred left in the world, we experienced a week of pure love, generosity and kindness. We are so grateful to Baking Memories 4Kids for giving that to us and for happy memories of a Christmas that could very well have been very difficult.

When we got back on the 23rd of December we were able to have a perfect, quiet and stress-free Christmas with family. Sam got everything on his list (which was very short) including the socks and toothbrush he wanted.

One thought on “Christmas 2016

  1. The love that shows on Sam’s face when he looks at you is beautiful! Your children are so lucky to have the parents they have! The memories you all make together will be with you always!


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