Having a special needs child comes with a lot of challenges, both big and small. But when the holiday season rolls around, those challenges seem to swell out of control. Many of us feel pushed to our limits during the holiday season, both physically and emotionally, for many different reasons.
Regardless of your religious beliefs or what holidays you observe, this time of year brings with it many celebrations. At the risk of sounding rather “bah-humbug,” sometimes our families cannot handle a celebration.
Our child’s routine will soon be interrupted with school closures, therapists on break visiting their own families, therapy centers closed and friends away on vacations. When you put this all together, our kids must feel as if their world is coming to an end.
I also find myself feeling a little sadder at the holidays. There seems to be more reminders this time of year of that growing distance between Grace and her peers. I know that my family and friends mean well, but it is hard to answer the question, “What does Grace want for Christmas?” Want? Really? Grace hasn't quite grasped the concept of the Santa tradition and all that goes into dreaming up a “wish list.” The list I create for her is driven by what Grace needs rather than what she wants.
This letter may seem depressing, but I think that it is important for all of us to remember that it is okay to have these feelings while other people are celebrating. When I watch my other daughter, Lily, play volleyball, I feel a bit of sadness that Grace may never know what it feels like, to be a part of a team. We shouldn't feel guilty when we acknowledge that we all had something taken away from us, an unspoken dream for our child and the hope that they would be healthy and live full lives.
On the other hand, we all need to remember that every single day that we have with our special kids is truly indeed a celebration all on its own. We don’t need a date marked on our calendar to know when a celebration is needed. Whenever we see progress in our kids, no matter how large or small, it becomes a day of joy and celebration. We continue to celebrate their life and treasure what they have taught us in their journey to recovery.
And the more I think about it, I realize that Grace isn’t missing out, in her opinion. She just has a different definition for things. Grace is part of a team. She has the best therapy team in the world (yes, I am bias). She knows that she is part of a team of people who work everyday to get her where she is today.
I also realize that she loves her presents, even if they are “ therapy-based toys”, and the food - Grace is no different than many of kid with food allergies that needs a special diet. Does she get robbed of having a candy cane? Yeah, maybe. But when she digs into her homemade cake with her glutin, casine free frosting and ice cream, the thoughts of the candy cane are just that - a mere thought that a silly mom had, that really doesn’t mean much.
The Holiday Season truly can be a crazy time if you let it, so remember to go easy on yourself. Don’t forget that kids of all ages and all abilities can enjoy the holidays. Involve your whole family and friends as much as possible to make sure that you and your children get a chance to celebrate without being overwhelmed. I have attached some tips for the holiday that seems to make is easier for our family. Grace is one of those kids that doesn’t like change, so I have learned to plan for it and make it part of our tradition.
I would like to take this time to say thank you all for being a part of “A Place of Grace. “ I hope that you and your family have a wonderful holiday season, and that your children continue on their road to recovery. And in the spirit of the season, I wish you hope, for with hope, anything is possible.
Love, Peace, and Hope,
Shannon, Lily, and Grace