On the eve of what will be a race to the holiday season I have a few thoughts…
First let me take a step back – the day that we received my daughter Sydney’s special needs diagnosis I was flooded with negative thoughts, fear, and shear panic. But the one thing I remember saying to my husband while we were sitting together trying to collect ourselves was this…
“The world spins in one direction and now we are destined to spin in the opposite direction and never be with everyone else. Our “special” gravitational pull will always keep us in a separate (but not necessarily worse) orbit.”
Yes, I know, not very articulate and probably a bit dramatic, but truthfully, I was, in retrospect, not far from the truth. I had that thought just hours after learning Sydney had Smith-Magenis Syndrome (SMS). I then spent YEARS trying to deny that it was true…but it was an undeniable fact.
Holidays are just not the same for us. I want to participate and enjoy and embrace them like everyone else, but I simply can’t. Holidays, weekends, and breaks from school are by far the most difficult and stressful times for our family. While Sydney wants to be a part of it all, the excitement, the change in routine, and the celebration…it causes too much anxiety and as a result enhances her behavioral issues which prevents her (and us) from truly relaxing and enjoying what should be quality time-off.
The last holiday we hosted for our extended family was in 2018. Overall Sydney did well but truth be told so much had to do with the set-up of the day. To keep her calm and organized I kept her out of the house all morning. I kept her far away from the chaos of the setup and the prepping for the day ahead. Sydney and I returned after the guests arrived. The meal went well but she was obsessed with the idea of shopping with her grandmother so at 4pm they left together. Unfortunately, Sydney had a very significant tantrum in the car with my mother – one that will not soon be forgotten.
A little backstory…my mother was in her 70’s at the time. She had been living with and surviving lung cancer for almost 20 years…essentially unheard of according to her physicians. She received chemotherapy, radiation therapy, and whatever else she needed. My mother came every weekend to help us orchestrate our life with Sydney – an extra set of hands. While she was still very young at heart Sydney can and has given her a run for her money…but my mom kept coming… she was the true epitome of unconditional love and support and no one has displayed more of that for Sydney than her. So here they are…my mother and Sydney out of the house on a frigid dark Thanksgiving eve and Sydney loses her mind in the car. She grabbed a hold of my mother’s hair while she was driving and yanked a decent chunk right out. When they arrived home, Sydney was in tears apologizing to my mother and desperately trying to fight that SMS demon that plagues her. My mother shows us the hair and I am just devastated. It literally made me sick to see. My mom then says to us, “well all that chemo didn’t get my hair but Sydney sure did”. We just laughed – for a long time. Sydney eventually collected the disorganized pieces of herself and put them all back together and managed to have a lovely end to her Thanksgiving holiday.
What I have learned over the years is that being successful at managing tragedy in your life comes down to three important things…Attitude, Perspective, and a keen Sense of Humor. I have my breaking points but what Living Special Needs has taught my family is that strength is most certainly a matter of the mind made up, humor is essential for survival, and each and everyday we grow more resilient.
These are the true gifts that matter most during the holiday season.
Yes. we stopped hosting our larger extended family for the holidays and yes that was difficult and can still seem painful at times but frankly we see it as a WIN – we finally realized what was best for our small group and our special situation and we pivoted to maximize our enjoyment – however limited. We still see our family – just under different (non-holiday) circumstances. Make adjustments that work for you and your family – guilt free I might add.
Happy (Tolerable) Holidays!