Just One

Dear Addie,

He took one look at the panic on my face and wasted no time springing into action. But before we got here, let me back up a bit.

It was the first Sunday of daylight savings and although everyone was up and ready early, we were still somehow late to church. One could say it’s the nature of the beast living a life with autism, predictably unpredictable at its finest, and clearly, Sundays hold no exception. But it’s the Sundays on this journey that I tend to wrestle with my own feelings probably the most. A faith I rely heavily on yet question daily. A community I crave acceptance and love from that can sometimes feel it’s providing anything but. It’s not to say the whole community is like that, but sometimes all it takes is one. One person. One look. One sigh. One disapproving head shake. Just one. It can make you feel unwelcomed, embarrassed, defeated, and less all in a place where you are told to come as you are, not as perfect. It’s enough to leave one to legitimately question “Why are we even doing this?” It hurts.

Sound dramatic? Perhaps those that think that have never been on the receiving end of that element of "one" and I’m genuinely happy for them.

Now truthfully I have yet to meet a special needs family that hasn’t struggled with church in some way. No one tells you, not even in that lovely binder we got on the day of your diagnosis “The first 100 days of autism” that the place you seek to find peace, love, hope, and calm is also the place that will be unknowingly loaded with sensory assaults – good luck marrying the two – and go. Some of our greatest advice has always been “exposure is key” sounds simple enough unless you’re the one in charge of giving and working through all that exposure. It’s exhausting mentally & physically for all involved. You’d think the church of all places would be the easiest of places to get that good quality exposure, but dare I say it’s more complicated than that…

You see, we have our place. Acoustics are really challenging for you and while we are making progress and have found “some” relief with headphones our place is in the lobby. The lobby is where you’ll find families like ours, families with young jittery toddlers or brand-new babies, and perhaps a few that wished they were sitting anywhere but – we can be a bit loud or maybe louder than a bit. True story, one time you were struggling and dad was standing across the hall with you working through your meltdown, and a lady not knowing you were my daughter turned to me and said “Wow, someone’s having a bad day!” I can still see the look on her face when I apologized and told her you were my daughter. I remember the feeling like it was yesterday. I had so much sadness, and dare I say confusion from just that one interaction. I mean couldn’t she hear you were struggling? She spent the next 5 minutes inching herself away from where I was before eventually leaving mass early. We were in the lobby when this interaction happened, a place where I always thought we'd get more grace for working through that all too important exposure. We hear time and time again we are just as welcome to sit in the pews like everyone else, the sentiment is heartfelt but not everyone can hear through your excessive chatter, noises, random pitched outbursts, and not to mention your lack of any ability to sit still. It’s kind of a special needs parent superpower that we can focus through all that 😉 We’ll get to those pews one day, but until then, we have our place.

That was until this Sunday.

We walked in and the whole back section of the lobby was set up with tables, signs, decorative plants & something that looked like an upright piano minus the keys. With the back half of the lobby off limits and all the chairs full, panic set in as I thought there’s no way we are testing out pews – you were exceptionally vocal this morning, and this is where our story began.

He took one look at the panic on my face and wasted no time springing into action. He goes by Don. A staple to our Sunday mass as a partitioner and dedicated usher. He walked straight toward us, asked daddy to give him a hand, and just like that the upright keyless piano stand was moved out of the way for us to have our usual seat. He jokingly said “didn’t they know this was your spot?” welcomed us to mass and continued on his way like it was no big deal.

But that’s what makes him special. To know Don is to know someone who truly lives a life of giving to others without ever trying. It’s uniquely organic to his being. His love and admiration for his wife and son are infectious as he is also faithfully committed to the church, its community, and a loyal member of the Knights of Columbus. I’ve been lucky enough to work alongside him at the school, and countless teams have been privy to his coaching as players on the court as well as reminded how to be good, respectful people off the court. I was also reminded of a story recently by a widowed friend of mine who was as well on the receiving end of his kindness when she was suddenly overwhelmed with emotion at her son’s graduation having to leave the ceremony. He sat with her, a mess of tears and sadness, it was a time she didn’t know what she needed, but he was there and stayed until she was able to gather herself together and return. There are literally dozens of other stories just like this – comforting, supporting & helping those in their time of need. As if that wasn’t enough his life’s career is with an amazing company called Best Nest CHS which offers medical housing solutions for transplant patients, cancer patients, and any other patients needing extended stay options during treatments. A man truly living a life of giving kindness, love, and help with every breath he has.

As he walked away to continue his ushering duties, you started in on uttering random phrases in, how do I put this, not exactly an indoor voice. “Green! Green! Green! G-R-E-E-N! Gabe! In a box! Gabriel! A la la la Jake!” You lasted all of about 4 minutes before dad decided it was time for a little walk. There we were sitting in our spot, that Don helped us retrieve on this day and you were already gone. I suddenly found myself misty-eyed. You see Addie, Don knew you probably wouldn’t stay there the whole time, but that didn’t stop him from helping us get our beloved lobby seat. It’s when he’s in your presence you’re reminded of a loving community where all are welcomed in whatever capacity we can give.

The homily that day was ironically about being generous in spirit something we were humbled to have witnessed firsthand that day through Don's actions.

Addie there is inevitably going to be a time when you are that one person on someone’s journey, when that happens you have a choice of which one you will be…be like Don. You never know when someone could be just seeking some grace to keep it all together and your act of kindness no matter how small could change the trajectory of their whole day.

Love,

Mom