By Nicole Silverman, FACT Oregon Program Coordinator
Benjamin was my only child for 9 years. He was born via emergency C-section 7 weeks premature and diagnosed with moderate to severe heart disease. We were in the NICU for 11 weeks before we were able to go home. A little over the age of one he was given a cerebral palsy diagnoses. Shortly after kindergarten, he was also diagnosed with autism.
Holidays, especially Christmas, were extremely difficult for me for many years. The intense loss of what my child would not experience, what he didn’t give a rip about, and what he didn’t even notice was almost more than I could bear. I cried an entire Christmas because Benjamin couldn’t care less about Santa and cookies… and after just “doing it anyways” my husband forgot to eat them… and so I cried some more!
One year, I pretty much boycotted the entire holiday all together. It was just all too much. Perspective is a funny thing. I would let my mind venture to all the things “other people” were doing that seemed impossible for us. All the holiday events you’re “supposed” to do, such as see the Nutcracker, cut down a real Christmas tree, open the daily boxes in the advent calendars to get treats that Benjamin can’t even eat, or bake special plates of cookies for all the professionals in your life? (Um? Hello? Have you seen ALL the professionals at the IEP meetings? I’d have to buy a cookie shop!)
Several years ago, I was part of a writing group facilitated by Well Arts and United Cerebral Palsy. There were 6 of us mothers who all had children experiencing cerebral palsy and at one of the sessions our facilitator asked us to write a story. I wrote about Christmas and how much it sucks. After we finished writing, she asked us to imagine ourselves writing the story from a different angle. TO CHANGE THE PERSPECTIVE!
After some thought, I decided to re-write the story from my son’s perspective -how much he must love the lights on the houses, watching his favorite Christmas movies over and over and spending time with some of his favorite people more often than usual. He loves these things about Christmas! The only reason I thought we were missing out is because I was holding us to a standard of what I thought we should be doing. Since that writing group, we’ve spent many enjoyable holiday evenings looking at the streets filled with lights and watching every Christmas movie we can get our hands on!
We recently adopted three kids, doubling our family size! This will be our first Christmas all together and I was again beginning to feel a lot of pressure to make this the “most special” Christmas for everyone, meaning we’d have to do all of this holiday “stuff”. Listening to my fourteen year old talking to a friend the other day, she proclaimed, “You do you!” (A common middle school phrase, I’ve come to learn!)
Guess what? We’re “doing us” this holiday season. The heck with what everyone else is doing or what I think everyone else is doing. We’re making our own memories and special holiday traditions that work for us. Cause I bet Santa is super sick of cookies anyways!
Here is our first family Christmas pic! My husband’s seat broke from under him! Why in the world would I think we’d have a normal family picture? It wouldn’t be US!
