One of the most powerful (but often painful) processes of becoming a parent to a child with special needs is the deconstruction of expectations. As a doctor of special education, the host of the Mama Bear Podcast (where I interview women raising kids with special needs) and as a mama to a beautiful 9-year-old daughter with profound cerebral palsy, I can say I’ve seen this deconstruction and subsequent rebuilding many, many times.
During the very first hospital stay with my daughter — the one where we left with a feeding tube, results from every test imaginable, and 11 new medications — my husband and I met a nurse who changed everything. Standing at my daughter’s bedside, over a million beeps and wires, she quietly looked up and said, “I know what you guys are going through.”
“What do you mean?”
“I also have a child with profound special needs. I understand this life.”
While my husband and I had always known about our daughter’s needs (we adopted her when she was almost 2 years old), we were also very aware that our learning curve was steep and our “people who get it” team was slim.
This miracle nurse (who had never worked that floor by the way) proceeded to explain the lessons she had learned, the hard seasons they had walked through, and, perhaps most importantly, the beautiful ones they were reveling in.
“The first Christmas with my son was hard," she recalled. "I cried up and down the aisles of Target. I couldn’t figure out what in the world a child who had limited vision and hearing would want. … Now I know. It took me a while, but now holidays are fun again. I just had to learn.”
This one line sparked a new trajectory for me. While my daughter may not be jumping on a trampoline or hopping on a new bicycle or playing with the latest gadgets, she IS laughing at new books, playing a keyboard with her feet, and singing to Beyonce (in her own way) at the top of her lungs.
Traditions are great if they serve you well. Otherwise, it’s archaic energy that may be sticking around without a payoff.
For example, two years ago my daughter was having a difficult time in new spaces. To the average stranger it might have even looked like she was having a seizure. It would take too long to explain, but the easiest way to put it is: depth perception challenges paired with sensory input. Rather than dragging her into the tradition of picking out the Christmas tree, I asked her if she wanted to come home from school and be surprised one day with it already set up. By looking one way for yes and one way for no, she promptly said yes.
So that’s what I did. I took myself down to the local tree lot and picked out a beauty. I hauled that thing into the house by myself (my husband is a musician and was on tour) and I got it all set up by the time she returned home from school. Her surprise and delight were palpable. I still remember her sitting on the couch and just staring at the lights.
A year after that (last December), we were still only enjoying memorized spaces, so we went with our old sturdy fake tree from our garage and enjoyed listening to records while decorating it with our gal.
This year, however, it will be a new experience. She IS enjoying new spaces again. Call it growth, call it a miracle, call it a very welcome surprise — the point is, we are ecstatic. As I write this, in just a few hours my husband and I will pick her up from school, drive to the tree lot, wheel her chair out of the back of the van and let her pick out her own tree.
We are pumped.
Last year it was a fake tree, this year it’s a real one from the lot, two years ago I grabbed a tree solo... Every holiday is different, and I guess you could say our only “tradition” is having fun.
We do what works for that specific year, so we enjoy the bliss of not being tied to any expectations. Isn’t peace the goal of the season, anyways?
My advice for parents in the same situation, (not that anyone asked), is to give yourself the freedom of re-imagination. Start from the ground up. What would this day, event, month look like if you could do it exactly as you wish?
Then, do that.
Cheers, everyone and may your holidays be free and bright,