Day 36 The Big Guy comes tonight!

Day 36

Christmas Eve.image

I am probably the weirdest atheist ever. I like Christmas. I’m pretty sure Jesus was a wonderful person. I love Christmas music, it’s peaceful, it’s hopeful, it celebrates the birth of new life, one full of promise, like all children. But most of all, Katie loves it, so I love it.  I’m not a materialistic person, I believe in the “spirit” of the season..Peace on Earth, Good Will toward Men. Who can be offended by that?? Not me.

And Katelin and I are surrounded by goodwill. People have played with her, talked with her, helped me, hugged me. Tonight a little girl gave Katie her blanket because Katie wasn’t feeling well. A woman watched her for me so I could go change after Katie threw soda all over me, others helped me sweep up the tortilla and chips, and did my house chore while I was upstairs taking care of Katelin, rubbing her belly because of gas pain and giving Tylenol for her headache and zantac for her reflux. Can I just throw in that I absolutely hate Rett Syndrome?!

But the goodwill of the season goes beyond that. People in the area have donated their time, given food, presents, gift cards, music, dance, and all around joy to sick children and their over stressed, worried parents, some whose only hope may have been just to make it to this Christmas.

Every day, I am reminded how lucky I am as a parent, how grateful I should be, how very fortunate that there is finally hope for a cure, while all around me, other parents are still waiting, and time is running out, and my heart breaks for them, and yet at Christmas they are smiling, somehow full of hope, full of joy at seeing joy on their children’s faces, and find the strength to be happy. This is what Christmas does.

And, yes, I am a big believer in Santa Claus, because tomorrow Katelin will wake up to a pile of presents, not a single one bought by me.

So, I wish you all a Merry Christmas, may your hearts be light. May goodwill follow you all the days of your life, may there, one day, be peace on earth. And to the researchers and others who have given Rett families the gift of Hope, thank you.

And to the servicemen and women far from their families, protecting us here and abroad, thank you for your service and may you all be safe.

And to all a good night.

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3 Responses to Day 36 The Big Guy comes tonight!

  1. Betty Curtis says:

    You can tell you are a writer. Some may have similar feelings but would not be able to express it so beautifully. Merry Christmas to you and Katelin.

  2. Linda E. Williams RN says:

    Merry Christmas!

  3. Rose & Renee says:

    Well said! Merry!

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