For everyone out there struggling with 2020 serving you up a platter of loss of control, fear of the unknown, and grief from what should’ve been; let me formally introduce you to uncertainty. It’s something that I’ve lived with daily for over a decade, and I’m so used to it that it feels completely normal to me. That doesn’t mean I’m always good at it. Or that when I do get a chance to have some control over details you just need to move aside. All of us try to control our environment and the outcomes that surround us. And in most cases our efforts yield the work we’ve put in.

Birthdays are Everett’s favorite. This is him fully embracing a drive by birthday parade.

Let’s pull out the dictionary to clarify what we are talking about.

Uncertain: not able to be relied on; not known or definite

Very few scenarios illicit long term uncertainty more than parenting a child with special needs. Everyone has challenges and difficulties, but most of those situations have definite outcomes. Such as death, divorce, job/career change, and terminal illnesses. You pivot to the situation and that becomes the new normal.

Living in a state of constant uncertainty isn’t easy, but you get used to it. Let’s go through our current scenario. The uncertainty of Everett’s short term future.

  1. Should I even send him back to school because frankly right now he is loving life and has very few negative behaviors? We have decided to send him back
  2. He will have a new teacher this year. When Everett first started school and therapy, I grew insanely attached to the amazing teachers and therapists that he worked with. I ugly cried for days when I heard his first occupational therapist changed jobs. Same with his first SPED teacher. Some teachers he does great with, some he doesn’t. But it always works out and he has had some amazing experiences and we’ve met life long friends because of changes I didn’t want to happen. I have zero control over how he interacts with someone when I’m not around. When I’m there (for better or worse), I can absolutely manage his interactions but it’s impossible for me to even know where to begin when I’m not there and it isn’t going well.
  3. Puberty is knocking on our door. I really have no words for this, but I’m guessing all of you had a bit of a grimace 😬 when you read that as well.
  4. What happens to this child who won’t take medicine orally and hasn’t had a shot in 7 years gets COVID-19? And look at this sweet boy wearing his mask. He has been back to in person therapy since May and he reminds me that he has to put his mask on every time. I promise to you, if Everett can tolerate a mask, so can most other children.
Masking wearing CHAMP!

Everything in the uncertainty department for us has really, really big question marks and I’ve absolutely learned to handle it by just showing up everyday. I’m better at it now than I was ten years ago, and I am certain that 10 years from now I’ll be better at it than I am right now.
Watching everyone in our world having to deal with the uncertainty from the pandemic is kind of like the car wreck you can’t look away from. Our world is in a full blown dumpster fire right now and NO ONE knows what to do. But there is a huge lack of grace and compromise. Everything in our society right now turns into a polarizing political issue. I personally think that is because there are too many “news” outlets that have to fill content for 24 hours every day. Every. Day. It’s just too much. And these aren’t news, they are editorial and opinion that we consume as facts. We also scroll mindlessly (guilty 🙋🏼‍♀️) through our social media feeds and are given so many impressions that shape our attitudes.
When I am really struggling with uncertainty, I try to lean into my gratitude practice. I take 5 minutes and find the most minute details to be grateful for. Saying you are grateful for your friends and family without very specific moments and reasons does NOT count. Brené Brown says it is impossible to have joy without gratitude and I live fully into this concept.

Never far from Yong Bao the train

I have also looked to Everett to guide me. There is no one I know that lives more fully present in a moment than he does. When things aren’t going his way, he becomes obsessed with moving toward the things that bring him joy. And while the pandemic has shifted so much; take the time to be grateful for the little things and blessings in your life. And follow Everett’s lead and move fully into the joy that surrounds us all if we just look for it.

You can just feel his joy!!
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