Dear Addie,
This week I didn't have to fight for a parking space. Seems kind of like a funny thing to say right?!? Why would anyone want to do that? But oddly enough, with a lot of mixed emotions, I’d hoped it was one of those things I’d get to do this week.
I promise you, mom’s not losing it - or at least I hope I'm not?!
You see Ad, a long time ago we traded in this imaginary calm outlook on life for a life of differences.
Different milestones.
Different perspectives.
Different abilities.
Dare I say a different level of functional exhaustion???
Different yes, but never less than anyone else. Just different.
We’d get a new fancy title of “special needs family” - that we proudly wear today. One Team, One Dream.
We've spent years not fitting into groups or “inside the box.” Endlessly apologizing - for what! I don't know, just always felt like our actions required it. Educating ourselves to scholarly levels on topics I never thought I'd ever have a reason to know, but here we are rattling words off that most might need a medical dictionary to look up. Gaining friendships, and even losing some to what I can only assume is the complexity of our family dynamic.
Not everything is bad or hard. This journey has given us so much appreciation for the simplest and smallest of things in life. For as much controlled chaos happens daily, we’ve really learned that we can’t sweat the small stuff, because everything really does happen on its own time.
I hate to even admit it, but so often it feels like we are living a life of Us vs Them - special needs vs neurotypical. Not in a bad way, but just in a “matter of fact” kind of way.
Here's the thing Addie, no matter who you are there is always the excitement of curiosity to do or be part of something that is not the norm. For those of us that are leading a life of difference to do something “normal” or “neurotypical” is quite exciting, but also terrifying.
A few weeks ago, I was surprised to open your backpack to see an invitation to what was a 3rd-grade choir concert at your school - and you were in it! Wait what?!?! Were you the next Mariah Carey and we had no idea?! Wow, this is exciting!
It's funny how quickly we forget the life that once was. I used to go to school to see Clara and Gabe perform all the time! Seriously - almost weekly for something. Square dancing, choir concerts, Christmas shows, and how could we forget the Rodeo in Texas with handmade stick ponies! Ah the memories.
But then we started walking a new journey and venturing to school was kindly discouraged because it became more of a distraction to you (and your classmates.) I totally understood then and still now.
So, you being on stage, with all the other 3rd graders, performing for a crowd of parents - this was a first for us and a taste of a very different life than that of what we are used to.
In the week and days leading up to the show I was a mess of emotions. So proud of how far you’ve come. Excited for you (and us) to get to experience any of this and I hate to admit it but terrified all in the same breath.
I can almost promise you the things that keep me up at night are not that of what most mamas probably think. Who’s going to take care of you when we are no longer able to? When I see you in heaven do you speak to me like you do now or are you the neurotypical Addie that articulated sentences, thoughts and feelings - if that's so would I recognize that's even you? With these thoughts now came, what if something happens on stage? What if you have to adjust your diaper or have a “fight or flight” moment and everybody laughs? Nobody wants their child laughed at.
These thoughts Addie, no matter how hard I try, can paralyze me.
Just the other day a kid called another classmate the r-word in the bus line at pick up. Now your teacher was quick to talk with him but in my heart it hurt that even today that word just rolled off his tongue. Some would say I'm being sensitive but those people don't walk in our shoes. They don’t see our perspective of life. I'd put money on them feeling the same as I if they did.
The choir concert was this week. I made sure to take the day off of work and was ready for whatever was to be. Proud of you no matter what!
Then the day came...
You never made it on that stage Addie.
We had been riding high smelling the roses for weeks now, but now we were back to climbing the thorny stalks. You struggled all week with all of your special classes (Art, music, PE, etc.) and a few days before, your teachers warned me of the possibility that it just might not happen. You were struggling, no one and I mean no one was giving up on this not happening just yet, but we always need to keep reality in perspective.
The day before you refused to get on the stage. In fact you couldn’t even get passed the doors to practice. You just weren’t ready.
Knowing in my heart there probably wasn't any monumental change I messaged your teacher the morning of to make certain you weren’t performing. Although it was a text message, I could almost hear the sincerity of her voice as I read it “I’m so sorry, we’ll try for the next show.” The fact of the matter is Addie, nobody had anything to be sorry for. It was just excitement for something different. Trying to be part of the crowd we weren’t use to being with.
That afternoon I had to run up to the store and I passed your school. The parking lot was overflowing onto the main road shoulder. Cars parked for as far as I could see from all the parents going to watch their 3rd graders perform.
I didn’t get to fight for my parking spot this day Addie, but I know we will when the time is right for you.
Keep working hard Addie. We will always be very proud of you.
Love,
Mom
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