This past year has been one for the books. We will definitely be talking about it well into the future. The year of copious amounts of sanitizer, masks and all the toilet paper.
The year that we learned over and over that we can do hard things. The year that the world felt the isolation and longing to be with others that special needs parents feel every day.
The year that we learned about freedom and limitations. The year that we created a to do list for when covid was over that consisted of browsing at Walmart/Target, visiting family, drinks with friends and eating in a restaurant.
The year of appreciation. We have become thankful for those that work so very hard but are often overlooked. The cashiers, night cleaners, nurses, truck drivers, and list goes on and on.
The year that we realized the importance of relationships, drive by birthday parades and window visits became a thing.
The year that parenting escalated to new heights with home schooling, virtual meetings and everyone cooped up in the house for extended periods of time.
The year that everyone struggled.
It was a year that even excessive amount of wine, coffee, online shopping and chocolate couldn’t make better.
For us this last year has been one of difficulty and change. It’s been hard to have little to no contact with our family. Even when visits were allowed we still had to say no because we needed to keep Stalen healthy for his impending surgery and to keep his essential medical services coming into our home. We still can’t risk the event of Stalen getting sick with anything right now as it will interfere with his already low calorie intake.
Many people do not realize the implications of having an autistic non-verbal child in a pandemic. We already live in isolation 365 days a year. But, the pandemic took away even the minor things that we looked forward to.
We have always lived in a bubble of protection in a sort of a way, so this was also nothing new for us. There are not many that we invite into our children’s lives for fear of judgement and misunderstanding of autism.
We struggled big time with self-care, sourcing food, diapers and medical supplies. It’s frustrating and stressful when people stock pile the only two items that your child will eat.
But, all things considered I truly think that we are better off than we were a year ago. For us, Stalen is somewhat better off medically. He now has his cecostomy and I am able to meet his medical needs at home. We no longer require daily nurse visits for medical procedures.
We are definitely stronger than we were a year ago. When Stalen’s essential therapies were cancelled, I worked with him every day for 3 months at “School with Mom” so he wouldn’t regress or lose his skills.
In September we had to travel to Nova Scotia so Stalen could have his surgery. It was a very traumatic event for him as he had to stay in hospital and endure 10 weeks of recovery at home. Due to covid restrictions only I could be with him immediately before and after his surgery. It was one of the most trying experiences for me as his Mom.
As special needs parents, we face many challenges. We require supports and services so we can meet our children’s needs. Unfortunately, this past year our supports and services were taken away by covid 19 but the challenges and needs remained. We even saw the emergence of new challenges.
The past year was a new level of hard that many of us have never experienced before, it taught us true appreciation for each other, our family, friends and community. It taught us a new magnitude of gratitude and appreciation.Heck, we even missed and came to appreciate the annoying tasks that we once despised.
We now know what we are made of, what we are capable of, our limits and our boundaries.
But, above all else it showed us that we can do really hard things.
We can adapt and overcome.
We are stronger together.