Tag: wheelchair

“May I bring the Eucharist back here to your seat?”

Church Lady was crisp and tan, summery and sweet, in her black and white gingham dress and full skirt.  She had a perfect, tasteful pedicure and low-heeled sandals.  Perfectly appropriate and approachable in every way. She was pretty like those self-deprecating moms in the viral videos who make fun of their “real mom bodies” and talk about their parenting failures but in reality are gorgeous and perfect and fashionable by any standard.  She was a walking Talbots commercial.  I was a sweaty mess from pushing that wheelchair in the scorching heat, disheveled and exhausted from Charlie’s 3 AM wake up call, jolted awake wondering if he was having a seizure or just had his days and nights mixed up again.

She caught me in such an emotional moment.  I burst out crying right in her face.

“It’s really no bother.”

I could sense her getting emotional for me, when she realized I was crying.

I politely sent her away.

“Are your allergies bothering you again, Mom?” said my eight-year-old daughter, who, thankfully, did not make the transition between me patiently telling her to sit up straight and not say, “Yo!” as her greeting during the sign of peace to my overwhelming grief in that hot chapel in late July.

“Yes, sweetie.  You know I have bad allergies.”

I have taken Ryan and Charlie to church twice now since moving to our new town.  Both times, the people in my life wonder aloud, “Why would you do that to yourself and everyone at church?  Why don’t you just leave him at home?”

I go to church to seek support and find a sense of community.  There is no way that the community can support me without meeting Charlie and seeing my daily life.  There is just no way.  Saying, “my son at home had two brain surgeries, has profound cognitive impairment, and autism” doesn’t do justice to the constant care he requires during all of his waking moments.  It simply needs to be experienced.

He is my child, and he has every right to be there, just like the “neurotypical” babies who squawk in the pews but, eventually, grow out of it.  Charlie is my big boy, sitting in the aisle in his wheelchair, sometimes half-singing the Wonder Pets song at the top of his lungs, sometimes dumping the contents of my purse all over the aisle, laughing as my makeup, coins, credit cards, and keys  scatter everywhere.  Sometimes he claps and cheers for no apparent reason.  He is no different from any toddler, only my stories of how he misbehaved at church will never be past tense.

The first day, I was so self-conscious.  Charlie was making a lot of nonsensical noise, singing and screeching, taking his shoes and socks off and throwing them.  Of course people are going to turn around.  I would, too, because that’s what you do when you hear a strange noise.  You turn around.

I wanted to crawl under a rock and die.

I was so self-conscious by all the people turning around, but I was determined to stay.  So I closed my eyes and tried to find peace, listening to the priest and finding comfort in the prayers I have been saying since I was old enough to speak.  I smiled gracefully and, sometimes, winced, when he was particularly disruptive.  I could feel their eyes burning a hole in me.

That first time, we chickened out and left about ten minutes early after Charlie urinated all over himself and the aisle.

There is something that happens when hundreds of people experience your suffering all at the same time.  You see your life through their eyes.  All the little things you have gotten “used to” suddenly brought to the surface.  It is sad and painful and overwhelming and devastating but also beautiful and liberating and cathartic.

I want to be a part of life.  I want to take my kids places like everyone else.  I want to live my life without thinking about who is going to be capable of watching him, if his noises are going to upset everyone.  I just want to be a regular mom and take my kids to church.  I want my daughter to have these ordinary experiences.  And I want others to bear witness not just to my suffering, but to my joys.

In those 60 minutes of Mass, I see through their eyes the horror of the level of Charlie’s impairment, how much work his care requires, how exhausting it is to be his caregiver.  But I see something else through their eyes:  a devoted mother of both children who is determined to listen to the homily, teach her daughter morals and discipline, and not let Charlie’s condition make her compromise the type of upbringing that she wants her daughter to have and that her daughter deserves.  My kids are far too important to slip through the cracks because I am not brave enough to meet their gaze.

I am starting to feel their respect as much as their pity.

I will keep bringing him, and each week I will greet my fellow parishioners, who so far have all been so compassionate with their words, deeds, and kind glances. When I become overwhelmed by the energy coming my way, yes, I will simply close my eyes.