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Writer's pictureLeanne Menzo

Golden Buzzer Worthy

Dear Addie,

This week you wet the bed.

You insisted on laying down instead of using the treadmill at therapy (It's for your gate not your weight FYI).

You bolted from the van and headed straight into our friend's house as we tried to stop and casually say “happy birthday” (6 feet Ad, social distancing, remember?) resulting in an impromptu chase before dinner - I’ll just have wine, please I earned it. Thx.

You continue to yell and scream when the dog's bark. To say our house is loud is a grave understatement it's like really loud.

You opened 5 art bead kits and happily sprinkled tiny beads everywhere in the toy room.

There were probably a bazillion other things that happened, each day being as eventful if not more so than the next. I’m tired, but nothing new there. Sometimes the exhaustion can weigh heavy on you, when other times it feels you're so tired you’re almost in a euphoric state. It’s hard to explain really. Every day different, but wildly the same and the same thought creeps in all too often...

"If we can just get to this point (and that point being with some neurotypical outcome being met) then it’s going to be OK."

What does that even mean “OK?” What was I even thinking here? Why we play this game with ourselves is beyond me, but we all do it. Waiting for life to get easier. Waiting for the break. Waiting for it to be "OK." Why do we do this? When does that type of thinking go away? When is everything just, well, OK?

Well Addie we reached one of those points this week and it hit home what OK really meant to me. It was all of a sudden, an acceptance that life truly is what you make of it. It wasn’t that all our hardships just melted away or anything, and the realization happened while sitting in our OK moment it was also OK to just not be OK sometimes. Digest that for a second. I guess there wasn’t really a fear of not making it to this OK moment, but it was more of a self-motivator rather, a pat on the back that we’re doing this and doing great - keep going and you'll get there!

You may be wondering what that point, the distance moment we were fighting to get to was? Well, it was you just being with us. Sounds simple enough right?! You watching T.V in the living room with us or sitting with some sort of engaging interaction. Not running away covering your ears when you see or hear a farm animal or (as of late) a Honda commercial on tv (we have no idea on this one). Nope, just calm and being present. Kind of a weird thing to think this was a moment I’d longed for but that’s how this journey works. We long for moments that seem every day and ordinary for most. These moments are easy and calm - two words rarely used on the path we follow.

Earlier this week we were watching America's Got Talent and it was a look back on some of the best moments of the show, and you know what Addie? The #1 moment was of Kodi Lee getting the golden buzzer! Blind and autistic standing hand in hand with his mother in a flurry of gold confetti. I felt her emotions. Every parent of a special need’s child did that night. Insert sobbing tears of joy.

I couldn’t help but think of how many “if we could get to this point moments...” did she have?

Was he always able to handle noise?

Was he easy to potty train?

Was sleeping a choice he didn’t choose most nights leaving her sometimes wondering which end is up?

Was he as easily entertained by the little piggy’s heading to the market as you are?

Did she long for him to just be calm and present in their living room, spending time together as a family?

Did she have some weird timeline of thinking it was going to be OK?

So many questions.

Here’s the thing Addie when we received your diagnosis, we had absolutely no idea where we were headed. We loved you more than life itself but a flurry of frustration, guilt, fear, and sadness crept in very quickly. As humans, we naturally find joy in giving ourselves things to look forward to...vacation, birthday parties, visits with friends, Friday’s. On a journey that has no map, where I truly learned what living in the moment was, where I realized I’m always grateful for life but some days (a lot of days) are super hard and just not OK. In those times, those really hard days, the “if we get to this point it’s going to be OK” thought gives us the joy to chase. The “you got this!” that I as your mama needed and I'm not ashamed to admit I still need to this day. Self-help.

Daddy and I had planned to tie-dye shirts with Clara and Gabe in the garage this weekend. Not going to lie, I didn’t think you’d have any interest in this project and had imagined you playing off in your room or in the toy room carefully finding joy and calm in lining up objects on your own while we carefully squirted dye everywhere.

Wrong.

Present as ever, you followed us into the garage plopped down in the middle of about 20 bottles filled with dye and held your hands out palms up. You wanted to play too, you were certain this was paint and were ready to make some handprint picture masterpieces - let’s do this!

Gabe quickly ran and got some paper and your paints and we set you up to happily finger paint next to us while we tie-dyed t-shirts. I wasn’t ready to introduce you to dye just yet ;). Ask Clara and Gabe sometime about how the glitter is locked up in the house. I'm sure most mamas agree here. The best part of all this, you stayed out there the whole-time giggling and stimming as we were all together as a family. Present. It was all more than OK - to us, it felt like a gold confetti moment of ease and calm.


Addie, I don’t know her at all, but I’m pretty sure Kodi Lee’s mom never said “if we could just win AGT it’s going to be OK.” I highly doubt it. But I’m sure she had her own “it’s going to be OK” moments over the years that may be even flashed before her while they were standing in that snow globe confetti. Another journey lesson I've learned, life is full of great surprises.


Ad, I’m telling you right now, it’s going to be more than OK, it’s gonna be great! You continue to make positive strides and on the tough days we get through them (sometimes with both of us crying) and that’s OK.

Who knows, maybe one day you’ll be standing in gold confetti for your amazing rendition of little piggy’s going to the market! You never know. But until then I’ll take you, present, happy, calm, sharing moments as a party of 5.

One team, one dream.

Love,

Mom



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