Last week Bridget’s class was doing a Pen Pal project. Her class had partnered with other Unique classrooms to send Christmas Cards to one another from across the country. The parents in her class were asked to send in our family Christmas card.
Except I haven’t done a Christmas card since she was two and tortured by the fat man in a red suit.
Christmas, honestly has been difficult for me. A holiday I once loved diminished because while I love Bridget, she makes this time of year hard. I get asked what toy to get her (and most times that toy becomes next year’s Toys for Tots donation) or what does she “need”. She is a child that never made a “Santa list”, never played with toys and while she is a joy this season reminds me that she is not like her sibling. Then came the year that she was discharged on Christmas Eve from Children’s Hospital. The year I thought I was going to celebrate Christmas with a funeral.
I did not realize it, but it stuck with me. The fact that Christmas couldn’t be trusted to give us a miracle. That my girl (who is awesome) would always be in danger of not being here.
The changes in our Christmas traditions were almost unrecognizable. First it was the not sending the Christmas card. Then it was not decorating outside. Followed by not setting up the Christmas village. And it goes on, how little I embraced this time of year.
This year, for some unknown reason, was different. Bridget and I covered every room and surface with Christmas lights. We decorated outside and in. The house is once again filled with Christmas. This year she put 4 ornaments on the tree (a first!).
And she was involved with a pen pal project and had to submit a Christmas card. I hesitantly contacted her teacher. “We do not do Christmas Cards”. I didn’t say why but here is the truth:
We do not have a perfect Christmas Card family. We never take a perfect picture. We are not perfect. We are a square trying to fit into a circle. We are messy. We are chaos. We have a pretty great life, but its barely organized chaos.
We are definitely not a Hallmark Christmas Card.
Then a friend, a dear friend, sent me a Christmas Card. I seriously laughed out loud when I opened it. I have been promised that this is a limited edition.
We are not perfect. We sing Sweet Caroline in a Beer Garden. We dance when Nina uses the Riccola trumpet. We swelter in the heat with Carly. We swim and do not care what our hair looks like. We don’t stop to pose for the perfect picture, we are too busy enjoying it. We adopt friends and make them our family. We laugh out loud and are ready for the next adventure. We are not perfect but we are a perfect family. We are messy, we are laughter, we are tears and we are sarcasm when you most need it. Our family is not blood but born in friendship (and everyone of you know who you are).
I’m not sure if we will ever do another Christmas card. But I am sure that without our village there would not be a Christmas. This PACS1 life can be overwhelming but it is never one that feels lonely. We do not let PACS1 stop us, we follow Bridget’s lead and live life to the fullest. We don’t put limits but say watch us celebrate this life.
This year Bridget decorated every surface of our house with Christmas lights. She doesn’t understand the Season, but she understands the importance of seeing the light in the World. This year we didn’t do a Christmas card, not because I couldn’t capture perfection. It is because I was enjoying how perfect this year unfolded.
Thank you to all of you who are our light.
Merry Christmas, even if you are not getting a card.
Love,
The Ames Family
(Un)Diagnosed and still okay 