There is so much guilt surrounding the holiday season. While I love Christmas and the magic of the season, it brings on a sense of depression that I am surprised by every year.
While we strive to always see what Jordyn CAN do, it’s becoming more and more apparent that there is so much she cannot do.
Most places are not handicap accessible because even if they have just a small step, we can’t get her wheelchair in safely.
She is heat intolerant so we have to avoid the outdoors when weather hits above 70 degrees or below 40. Now with her trach and ventilator dependency, Jordyn has to use an HME to humidify the air around her when we go out and about. If it’s cold, the air will irritate her throat.
She can’t eat by mouth so we don’t do the typical cookie baking, the hot chocolate, or any other food festivities.
She’s not able to help put ornaments on the tree or decorate for Christmas. Building and decorating a gingerbread house is difficult also.
Big family gatherings are overstimulating and overwhelming for us all. We’re kind of the outsiders and we end up in a corner of the room by ourselves while everyone else visits. We don’t have much in common to talk about because our lives are surrounded by doctors, hospital stays, and therapies.
It’s hard not to feel guilty when we don’t take her to all the holiday festivities around town. My newsfeed fills with cute photos of families enjoying all the festivities. I’m so happy that others can enjoy it, but seeing it fills me with sadness. I long to be able to do those things with my daughter. I feel deep guilt that we don’t go do more as a family. We love her and she knows it, but I want her life to be so much more than all the appts, therapies, and hospital stays.
We try to create our own magic at home as a family and I document every little detail of our lives so I always have those moments to look back on. If you’re not feeling the magic of the holidays, please know you’re not alone. Your feelings are valid and there’s no rule that says you have to be jolly the whole month of December. Give yourself some grace. ❤️
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