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The Christmas Gift that Brought My Daughter’s Spark Back

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When you have a child living with a life-threatening illness, you learn to look forward to the little things that most families probably don't think twice about. Vacations, birthdays, holidays, and simply being home together become things you hope and pray you get to experience. 

For our family, Christmas has always been a big deal. I love everything about it. I go all out decorating the house, and we always have two Christmas trees. One is our colorful tree where the kids hang all their ornaments, and the other is one I decorate myself. I love the excitement, the traditions, and most of all, watching my kids experience the magic of Christmas. 

Last year, I was especially looking forward to it. Nora had received her life-saving bone marrow transplant just a few months earlier, and although life was far from normal, we were finally home. We still had appointments, precautions, and plenty of uncertainty, but we were together. After everything our family had been through, that was all I really wanted. 

Then, the week of Christmas, Nora felt warm. 

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She didn't have any other symptoms, but when I checked her temperature, it was 101 degrees. For most families, a fever might mean a few days of rest and Tylenol. But for Nora, with her central line and compromised immune system, a fever meant the possibility of a serious infection and another trip to the hospital. 

I remember thinking, “You've got to be kidding me.” 

I think part of me was in denial. I wanted so badly for us to have a normal Christmas. But when her fever continued, I knew we needed to make the two-hour drive to the hospital. 

And I cried. 

Not just because our Christmas plans were falling apart, but because every hospitalization brings back fears that I try so hard to keep tucked away.

“There's always that little voice in the back of my mind asking, ‘What if this time is different? What if we don't get to come home?’  It's an awful feeling, especially when you're supposed to be celebrating the happiest time of the year. ”

- Kaitlyn

What made it even harder was watching Nora get worse. She became so weak and unsteady that she couldn't walk. Watching your child deteriorate right in front of you is something I don't think you ever get used to, no matter how many hospitalizations you've been through. 

On Christmas Eve, instead of being home surrounded by our decorations and getting ready for Santa, we were in a hospital room. Nora wanted extra snuggles, so we curled up together and watched a Christmas show. At some point, hospital staff came in carrying wrapped presents for her. 

She wasn't her usual energetic, playful self, but as she started opening those gifts, I could see a little bit of her spark coming back. 

And that meant more to me than I can really explain. 

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Because as a mom, you just want your children to be children. You want them running around, laughing, tearing through wrapping paper, and getting excited over the smallest things. You don't want their childhood memories to revolve around hospital rooms, IV poles, medications, and procedures. 

For a little while that Christmas Eve, I got to watch Nora simply be a little girl excited about Christmas. 

It wasn't the Christmas I had planned. It wasn't the Christmas I had hoped for. But it reminded me that even in the middle of some of our hardest moments, there can still be little pieces of joy. 

And sometimes, those little moments end up meaning the most. 

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Care and comfort for parents, delivered through stories of families whose dark days have turned bright with the help of our Starlight community.