This and Thats in a small sterile room

We’re back! Today starts the new chemo protocol to really knock out these antibodies fighting his much needed enzyme. He will take 3 additional oral drugs and receive an additional intravenous chemo. A lot, a lot, a lot so please keep us in your prayers. 8 weeks and counting! Oh and pending labs are not back due to the holiday week.
Speaking if holiday week, Jack had a wonderful Thanksgiving break, which made for a huge struggle to spend today in the hospital. Asking for his cousins and just wanting to be a kid. Snarling at nurses and screaming “No” has been the theme for today. Secretly I want to scream “no” too and to be quite honest I just wanted to work on our Christmas cards at home vs doing them at the hospital. But here we are.
Ah the holidays. The time of the year where so many emotions arise. Raising a son with special needs, or rare disease puts some added touches to the holidays. A touch of magic since its Jack’s favorite holiday that we have talked about, watched movies, sang songs, read books about for the past 12 months or since last Christmas. :-} And then there is that added touch of darkness. The sadness and anger that comes with letting go of old traditions and modifying traditions so they are meaningful for Jack. No this because Jack gets overwhelmed Or no that because he won’t be able to understand or participate. And there is a lot if this and thats as we all know- rushing here to there, crowds, coldness, organizing, planning, sacrificing, schedule interruptions, and so on. Who doesn’t get anxious at some point? But each year I learn that the simpler this time of the year is the clearer I can be. Celebrating Jacks overwhelming adoration for Santa has become more and more exciting each year. And it appears from his fixation he is beginning to understand Santa’s mission. And with that the angry bug and/or the sadness bug goes away much quicker. And thanks to Jack, we are reminded each year that the true meaning of Christmas, or any other holiday for that matter, is that everyone deserves to interpret and celebrate it in a way that makes sense and matters most to them.
So now I challenge myself to find the Christmas spirit while making cards in a very small sterile room. Thank you Pandora.


6 thoughts on “This and Thats in a small sterile room

  1. Hi Jack! We have been thinking about you so much! I know you don’t know us very well, but we want you to know we think you are one amazing kiddo! What an inspiration you are to all who know you, near and far. I am so happy to hear that Santa is bringing a smile to your face – he is SO happy to know this. Please tell your mommy and daddy we are thinking about them, too. They are such great parents – like I have to tell you that! We love you and are sending you big hugs from Colorado!

  2. “The simpler this time is the clearer I can be.” Wise words for us. Jack, I miss you SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
    much. Eric and I think and talk about you all the time. We will see you very soon.
    James, still Wonder Woman. Still are.

  3. I’m sssooo glad Jack (and family) had a great Thanksgiving! You guys deserve a break and some happy! Thinking about the elf on the shelf, last year and still now but not sure D would get it either. Sad it can’t all just be joy and fun. I think its about love and family, the magic of Santa and baby Jesus in the manger, old and new traditions, and some pretty twinkling lights. And sweet Lifetime Christmas movies with James Vander Beek, ha!

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