Saturday evening after the kids are in bed I am wide awake thinking of all the ways to
make church go smoothly. Marc, my husband, bathes Anne spending almost the entire
time trying to get her hair ready for me and I comb through her massive thick and
blonde curls while she pulls away from me and cries. I tell myself that I can be gentler
but at some point, usually after she’s dug her elbow into my thigh, desperation takes
hold and I pull to end this trial quicker. What you don’t understand is that even with the
wettest hair and the best conditioner, she will pull away because of the sensitivity of just
the lightest touch to her hair. Anne has autism and she’s biracial. Have you ever seen the movie Love and Basketball? Try to remember the scene where Sanaa Latham’s older sister
combs through her hair. Now imagine doing that with a non-verbal autistic girl.
Sunday morning we wake up and attempt to finish all the tasks we need to finish before
church. I pack the snack she will enjoy the most but also eat the slowest so when one of us
has to take her out of the church midway, we can stay out long enough for the priest to
finish both the gospel and his homily. Sometimes it means breaking a Pop Tart into
a thousand pieces. You can’t understand the anxiety we are filled with when the church
is silent enough to hear her grunts and claps. You tell me you heard nothing or who
cares but you can’t understand. I can hear it. It’s the glances and the looks and her clap
loud enough to ring in my ear and remind me that my child is not normal.
Right before we leave home for liturgy I check and check again and triple check to make
sure we have two Pull Ups. We will take no less than five trips to the bathroom because
it’s her favorite thing to do when she’s bored and doesn’t want to sit still. You can’t understand the pasted on smile and grit of my teeth as I pull a giggling, 5’3” 93 lb.
girl out of the church before she can hit someone on the head. Yeah, that happened.
She got away from my husband. It was his turn to take her out. When he got back, she
slipped out of his grasp because she saw an older woman wearing a white chapel veil.
The kind that looks more like a doily. Irresistible. The lady wasn’t hurt. I was mortified.
Sometimes I’ve had enough sleep that I can quickly block her long reach but most of the
time I am only aware of how we’re not even halfway through church. We attend a
Melkite Church, which means a few things. One is that the liturgy is longer than most
Roman Catholic liturgies and two (thankfully!) it’s much louder so some of Anne’s
outbursts are drowned out. The liturgy is supposed to be a foretaste of heaven but it’s
often, I’m sorry to say, an ordeal to endure.
Amidst the welcoming smiles and the curious glances, she tests out new learned
sounds that sound like a cross between spitting and coughing, I beg people to turn
around and pretend like we are not in the room. I silently beg and plead for those kind
reassuring voices who coax me back into the church as I struggle with an all muscle eloper on the bench outside. You can’t understand that I much prefer to soak up Christ in the sunshine as I get my exercise at the same time. I can find Christ in the parking lot while doing sprints thank you very much. It's why Saturday evenings, I am praying for good weather.
And once it’s over and I am bone weary and sweating in my at one time cute ankle
length skirt and determinedly not a good idea ankle boots. Once I have fully sworn off
church and thinking respite care is going to have to work, we are asked to stay another
hour for fellowship. Have some cake, have a bagel, have some soup. Sit and chat with
us. You can’t understand that, while I say "No we have to get home", I would love nothing
more than to rest my weary legs and aching arms and talk to other adults, but I can’t
take a load off. I can’t fellowship because my eyes have to be on guard with Annie and
the food. You can’t understand the lack of boundaries she has and her desire to take
any food she wants off of anyone’s plate or drink from any cup. She’s like a Wolf from
The Walking Dead, she wants it. All of it.
Once we are safe in the car and Anne is buckled and locked in, I breathe a sigh of relief.
We have survived. And the anxiety is not just the liturgy. It’s every invitation. It’s
weighing every exit, every cause for a potential meltdown or elopement or a behavior. I
do know I can’t live my life waiting for the autism show to drop.
You can’t understand, that this is what it feels like sometimes but maybe you can after
reading this. I hope you can understand some of it. Like this: when I say "No, it won’t
work for us. Not at this time. Sorry we can’t make it", I want nothing more than to say "Yes,
absolutely! Sounds great. I can’t wait." I want you to understand the desire does not
always match the possibility. The desire to have a neurotypical, verbal child cannot
match the reality. We have been given our trial. Our cross. God has made this cross full
of splinters and nails and heavy enough that both my husband and I have to be each
other’s Simon of Cyrene. It won’t work any other way. To deny our joint cross is to leave
the other with the heavy burden. With the heavy reality. We must, we can, we should
take up our cross. But what we can’t understand is why is this cross is meant for us.