The holidays are filled with family, friends, fun and laughter. Its a time where one may re-connect with those around them to celebrate the season and all that they have to be thankful for. In the case of a family with a special needs child, all of these things still remain true. But, this time of year comes with a little “extra” to consider when attending the many festivities and excitement this season has to offer.
For me, I have always loved the holiday season. There is something in the air that is buzzing with excitement and each day has an over-arching feel of such profound gratitude for all that you have to be thankful for, that you just want to share the joy with everyone you encounter. I may be a little too overzealous for this time of year, but I am ok with that. Festive music starts the first of November!
The get-togethers, family visits, and travelling from place to place are all an adventure, where the biggest stressor is always what are we going to eat and at whose house are we gathering. Once our family got our daughter’s diagnosis of Rett Syndrome, our holidays began to look a little different. We now had many more things to consider.
You see, for our family, we have always been very “go with the flow”. We adapted to every scenario and last minute changes of plans never bothered us. It wasn’t until Evelyn’s regression began and all the changes that it entailed that we began to view holidays differently. We no longer had the mindset of, we are good with whatever plans, everyone else can decide, and we will just show up. It became more of how will these plans play out for Evelyn? Will she get overwhelmed, is she familiar with the environment and will she be able to navigate it confidently, is there a suitable place to let her rest when she needs it, what is our plan of action should the situation become too much for her and we have to leave?
These were all new things we never had to think twice about when she was much younger; when our life seemed more “typical”. We had our bumps in the road trying to navigate what holidays look like for us. We’ve become more vocal if we found that a suggested scenario wouldn’t be the best situation for our girl and we needed to offer alternative options.
There have been times that we have had to leave early if it became too overwhelming for Ev and the hardest part, at least for me, (as someone who is always looking to please others) is having to say “no” to certain things because it would not be the best situation for our girl. We have learned, through much trial and error, that to truly enjoy the holidays, we must have a plan in place to do what would work best for Ev, and our family as a whole.
We choose the situations we bring her into wisely and travel to places where we have some support, if possible. We do not try to do everything and we say no to a lot. We have learned to be content with what our girl is capable of, which at times, is much more than we can handle. We choose situations where we can be outside if we need to take a break, give her space to herself to have some quiet time, and give her an environment that she is comfortable with so that she can socialize to her hearts content.
We no longer try to live up to expectations we had of ourselves to make everything work. We do what we can handle and we find peace and contentment in the rest. The joys are something to be treasured even amidst the challenges that they might bring.