Spring Surprise

I was a little crabby when I woke up this morning. Overnight, we'd gotten several inches of snow that I was unprepared for. The schools were closed, but my work was not (I do live in my office) and I was worried about juggling the kids and the clients for the day. Plus, I had a big meeting scheduled for the afternoon that I had spent most of Sunday preparing for... only to find it was canceled (and I wasted a weekend day!). Grrrrr...

So, when our neighbors invited us to go sledding with them I almost turned them down. I was afraid I was going to miss an important call. I didn't want to not be there for a client on a Monday morning, it just seemed like bad business. I mulled it over as I sipped my (strong) coffee.

Maybe the caffeine cleared my head, because it didn't take long for me to remember what my daily intention is -- to be present. It is something I have to remind myself of constantly, because with each surge of progress we see I fear losing Simon, or losing this miraculous progress, more and more. It isn't an irrational fear, but something we have been warned of since surgery was ruled out. Fortunately, for now, the medicines are working and we have not yet exhausted our options, but (me being me) I think ahead. And I worry. And I make myself nuts and I miss out on the gift that is now, the miracle that I have been given. I don't know what the future will bring (no one does); but I do know how many parents of children with cognitive disabilities are praying for a miracle just like the one we've been given. The miracle of getting to know your child better. Even if it doesn't last forever, even if it only lasts for a moment.

Today, I had a moment. I could choose to be present for my kids on an unexpected snowy Monday morning. It was a gift, and I knew I should take it.

I'm so glad that I did.

When we got to the sledding hill it was covered with kids. They were sledding, building forts, and having snowball fights all over the place. Olivia immediately ran off with friends to sled and do belly flops. Simon and I went up and down the hills several times in his little purple sled. Once the novelty of sledding wore off, Simon turned his attention to the kids playing in the snow. In another amazing surge of progress (if that is even the right thing to call these miracles), he was super interested in the other children. He went over and introduced himself to everyone he could find. He gave out loads of high-fives, and participated in multiple snowball fights.

Here was Simon being "present." With us there in that moment. Something I have prayed for without ever really believing it would happen. Today, I was able to just be with him. As I stood back and watched him go, just being a kid, gratitude swelled in my chest. Happy tears and snowflakes stuck to my lashes.

I was present. I was there for that moment, which really is the greatest gift of all.

A picture worth a thousand words

"Mommy, take a picture of me!"

Big smile, looking right at the camera, using appropriate pronouns, self aware.

There aren't words to cover all the amazing changes we have seen in Simon. The meds appear to be working (we have another EEG soon to check progress), and there are momentous tiny miracles every day.

I know I haven't blogged in a while, but big things are on the horizon and I want to share. Tigger is coming home, more medical tests and med changes, more educational plans to create.

This photo, this moment, seems like a good place to pause and then begin anew.