It’s pretty much a given that when we are out in public, someone is going to look at us in a reactive manner. It comes with the territory. With your constant movement, seemingly unnatural (to most) stimming, and involuntary sounds, it’s as if we are surrounded by our very own personal marquee lights. I don’t blame people for looking, it’s a natural reaction, but some days are just easier to handle it than others.
To us your movement, stimming and sounds are our “normal” but add in a heavy dose of anxiety and that’s whole different ballgame for people to watch and hear.
There is no worse feeling than taking you down a path where I know your anxiety is going to be heightened. I always feel like you think I’m deliberately betraying you. This is when the weight of the world seems to be resting on our shoulders, critical eyes watching our every move. But you see Addie, the reality is we can’t escape everything in life, and traveling these anxiety-ridden paths are sometimes necessary on many levels. That’s why developing good coping skills are very important to us.
You can fall into “fight or flight” anxiety moments just by hearing a simple sound, taking notice to an object like a tissue, or by navigating a different route than what’s familiar to you. It's during these already vulnerable and difficult moments, that we feel the reactions of others the most. Most people I truly believe are coming from a good place in their hearts - the sympathetic “I’ve been there” smiles, or the “Wow you’ve got your hands full!” comments, but not all are as understanding and can be far more judgmental with the disapproving head shake and eye roll.
I’d be lying if I didn’t sometimes wish we could simply blend in with the masses. But like the great Dr. Seuss once said: “Why blend in, when you were born to stand out?!”
So here we are and that’s what brings us to this most recent unexpected reaction.
Singing is your coping. Fact. You know every nursery rhythm by heart and belt them out at the top of your lungs when you start to feel anxious.
We recently found ourselves in need of a doctor visit, for nothing outrageously serious, but it was still a must that we go. Your anxiety of doctors has always been present but became worse last year when a concussion turned into a far too lengthy, traumatic emergency room visit where we left no better than when we had arrived. Now we have an unbelievable fear of doctors. In your mind, you're convinced every doctor's visit is going to end up taking you back there to endure the experience all over again.
As we got closer and you realized where we were going, I could hear the uneasiness start to take shape. By the time we arrived, you were a blubbering mess – belting “Old MacDonald had a Farm” at the top of your lungs! My continuous reassurance that everything was going to be ok just made you cry louder.
While it was quite clear that you were upset about the decision to be there, you were dealing with it better than usual. You didn’t refuse to enter the building, you did your best at coping and rather serenaded the office with loud, sobbing renditions of the ABC’s or Row Row Row your boat.
On this particular day, we had arrived at the same time as another mother and daughter duo.
We both sat in the “well” section of the waiting room but were presenting very different images. Her daughter sat quietly, hair perfectly placed in a ponytail and a matching outfit. You, on the other hand, had been sliding your headphones on and off repeatedly so now your hair was in the state in which people may have questioned if we owned a comb, while snot, drool, and tears were ran like a faucet down your face. Your mismatched outfit (due to a potty accident that required changing your pants) looked like we dressed in the dark. They sat quietly while our marquee lights were lit up like opening night. I was doing my best to quietly sing with you different nursery rhythms in an attempt to ease some of the anxiety. We counted backward from 10-1 about 100 times and then sang again. Mid singing, I happen to glance over at the mother and daughter who were just sitting quietly hands folded in their laps. Our name was called as we walked past them on our way to the exam room, and the mother and I made eye contact - she gave me a sweet smile.
Still giving your best rendition of Twinkle Twinkle at this point, we made it into the room. I wiped up your flushed little face as we talked with the nurse for a moment, and then waited for the doctor. As we sat waiting there was a knocked on the door and the receptionist came in handing me a piece of paper. She said it was from the mother in the waiting room.
I opened it up…
Hi. I was in the waiting room. I just wanted to tell you I think you are an amazing mom. My thoughts and prayers are with you as you journey with your beautiful daughter.
I’ve never had someone do this before. Completely taken back by this beautiful gesture, I instantly started tearing up. This poor doctor was about to walk into to not one, but two people crying!
This mother, speaking no words to us, knowing nothing about us, chose to go above and beyond in kindness - for us! She didn’t have to, but she chose too.
With our visit over, I spoke the magic words, “All done.” Just like that you stood up, wiped your face with the sleeve of your coat and stopped crying. Done.
All buckled into the car, I found a scrap piece of paper to write “Thank you! Love, Leanne & Addie” on and left it on her windshield (we arrived at the same time, so I was lucky enough to know what car was theirs).
You see Addie, kindness is 100% free. If you are given the opportunity to share some with someone, do it. You’ll never know how much it might mean to them. Kim did, and it truly brightened my whole day.
So today we experienced a very unexpected reaction to our marquee lights. A gesture I will never forget and cherish forever.