You do You

I have thought about writing this post many times, but I didn’t want to add to so much of what is entering my brain as noise these days. Namely:

• The virus which must not be named.
• Forced homeschooling.
• Toilet paper.
• The shoe-in for the words of the year (nevermind that it’s only March): social distancing.

What the heck? This has been the longest decade, er, week of my life. I have so many feelings, but chief among them: UGH!

Déjà vu

The night after our local schools announced a two-week closure was a restless one for me. Each time I awoke, I reminded myself: “This virus is real. It is here. And all of this is as overwhelming and scary as hell.” The last time I did that? The first few weeks after Grace was born. Every time I awoke to try to feed her, my brain would remind itself: “My baby was born. She is here. And she has Down syndrome.”

I DO NOT mean to equate a diagnosis of Down syndrome with an unprecedented global pandemic! What I mean to say is similar to what Rose Reif summed up pretty well on her blog: having a daughter with special needs has seemingly somewhat prepared me for this kind of completely life-altering event.

We parents who have been thrown a loop or two (ok, or five) may have the upper hand in all of this. We are used to unexpected circumstances that overwhelm our brains and challenge our hearts. Many of us have experienced medical quarantines or, minimally, inadvertent social distancing among groups who just don’t get how their discussions of milestones or life priorities may alienate us. We know, probably by trial-and-error, that we can’t possibly do ALL of the things for our kids without exhausting ourselves, turning into ugly people, or eating ALL of the chocolate.

So, based on my experiences, these are the messages I have for you right now:

• There is no right way to grieve the loss of life as we formerly understood it. As long as you maintain 6 feet of distance from others and preferably stay in your own dang house!
• Be kind to yourself and others.
• You’re running a marathon, not a sprint. Keep your reserves at a reasonable level. So,…
• Eat the pizza, take another nap, have the extra glass of wine, extend your kids’ screen time. Fresh air and exercise help, too!
• Look for the helpers. (Yes, I stole that from Mr. Rogers. He and I go way back.) This is a horrendous situation, but it has also brought out a lot of good in people. Focus on the good.

Most Importantly

And most importantly, of all the things you can do, do what is right for your family.

Maybe Susie Q is using this time to work on sight words with her two-year-old. Good for Susie. Although someone may want to discuss priorities with her.

You do you.

Maybe John Doe wants to implement a daily schedule that includes PT, OT, and speech therapy for his child and broadcast all of his sessions on Facebook. I salute you, John…and will gladly unfollow your social media for at least the length of this ordeal.

You do you.

Please, please, please, filter through the noise and decide what you want to do with this time. If you’re looking for some guidance, this post from a mother who was quarantined for a year with a child recovering from cancer really spoke to me.

But ultimately, I am asking to you to remember:

a) everyone is struggling now. This is some really hard stuff to wrap your brain around that affects every aspect of our lives

b) the best thing you can do for your child is love your child. Even if they miss some school. Even if they miss some therapy. Even if they are eating too much sugar and maxing out on screen time. The attention and love you show them is the most important thing you can give them, especially at a time like this.

Please do you.

Looking forward

When I learned about school closures, I began hoarding the educational resources abounding on Facebook and then scoured Pinterest for more. I soon grew anxious about trying to fill our days with “meaningful, educational” activities when, frankly, it’s taking most of my energy to hold back tears when I think about the state of the world right now.

That said, I’m thinking of sharing a few posts in the coming days or weeks with some simple resources that I have found helpful to build life skills and (let’s be honest) fill time in seemingly productive ways with my kids while maintaining my own sanity. If that is just adding to the noise for you, please ignore me. And do you.

Take care, friends.

P.S. Happy World Down syndrome Day! I at one time had an awesome post planned for today, but plans aren’t what they used to be. Someday soon, I’ll compile that list of our favorite picture books on differences.