In the Space of Now
When I made my First Communion about a thousand years ago, I was picked to bring the gifts to the altar.
For those who aren’t Catholic, this is a ritual performed during Mass where several people walk dow the aisle with gifts; the gift-bearers are meant to represent everyone in the church, and the gifts represent our collective struggle and worship and hope.
Only the specialist, most exceptional children are chosen for this task, obviously.
For the entire week before my communion, I floated on my wings of specialness. I was so, so excited. The dress! The gifts! The specialness!
At the rehearsal, my specialness came to a screeching halt. When I lined up next to my partner—a small blonde boy named Keith—to practice carrying the gifts, it was decided I was too tall for the job because I towered over him.
On Saturday, my daughter Rose made her First Communion. After ushering her three older brothers through the sacrament, I was thrilled to experience it with my only girl.
Together, we shopped for the perfect dress and the perfect little white shoes. She squealed when she tried them on because they had a tiny high heel. We researched hairstyles for her cute blonde bob, and decided that of course, we should weave flowers into the long white veil.
You can only imagine my delight when Sister Priscilla, the nun who is in charge of religious education at our church, called to ask if Rose would like to bring up the gifts during the ceremony.
Gasp! The specialness baton had been passed! My heart soared, and for a second I toyed with the idea of returning the little white heels and picking out some ballet flats, in case she was paired with someone small.
In the midst of all this planning, I read a post by fellow blogger Jim Walter.
Jim and I were e-troduced—yes! this is a thing now!—in a Facebook group for parents who have kids with autism. This group is honest and colorful and outspoken, which basically means there’s a lot of swearing.
I always enjoyed Jim’s essays, and his Facebook status updates were pithy and fun, but I can’t say I know much about him. He appears to be around my age—forty or so—and he seems to like bacon a lot. He has two young daughters, Lily and Emma. Lily has autism.
As is the way with casual Internet connections, I didn’t really notice when he sort of dropped out of Cyberspace and stopped posting. Then one day he shared a quick update. His wife Leslie had died.
In a blog post a few days later, Jim described the way, in the midst of her own battle with cancer, Leslie petitioned to have their daughter Lily make First Communion with her class.
When his wife was admitted to hospice, Jim rushed to arrange for the communion to take place sooner, so Leslie could be present. They scheduled it for 4:00 the following day.
But his wife’s breathing continued to labor, and, panicked, Jim moved it up once again.
“I think we need to make communion happen at 1:00. Our girl is fading.”
Leslie didn’t make it. And sitting at my kitchen counter reading Jim’s essay, I wept.
I wept thinking about Rose’s long white communion dress hanging in my closet upstairs. I wept over the precious little heels and the beaded veil and the flowers and the gifts.
I wept to know that from this point forward, every event in Jim’s life will have the tiniest shadow.
If only she was here to see this.
I wish she could watch you dance or hear you sing or feel your kiss.
Your mother would be so proud.
I have never been in the presence of a person who has passed from life. I imagine it’s all at once breathtaking and terrifying and exhilarating and devastating. I imagine it’s like reaching out a tentative hand, and for the briefest moment, touching the face of God.
When my son Jack was in kindergarten, I complained to one of our doctors that he was always near me. He didn’t want me to play with him, or snuggle or hold him. He didn’t want to talk to me or look at me or even share my bagel. He just, well, orbited me all day long. It drove me crazy.
“Uh huh,” the doctor said kindly. “He’s using you to regulate himself. This is common with kiddos who have autism.”
I stared at his red and blue plaid tie and listened to him explain that essentially, I am Jack’s thermometer, his barometer, his touchstone. He hovers near me to figure if it’s appropriate to laugh or cry, run or jump, eat or drink.
Jack is eleven now, and he still orbits me for much of the day. Sometimes it still drives me crazy, but mostly because it terrifies me.
What if something happened to me?
As a mother, I often contemplate my own mortality. I wonder if my husband Joe would remember that our oldest, Joey, likes ice in his milk at dinner and our third son, Charlie, hates to be alone when he’s in the shower. I’m not sure he knows that I buy Rose’s tights a size bigger because her legs are so long.
I worry he won’t find the recipe for our youngest son Henry’s favorite sausage kale pasta, or make sure all five kids trim their fingernails regularly.
But mostly I think about Jack. How would he process or understand death’s finality?
Maybe he would forget about me altogether. Maybe his complicated mind will close over all of our shared memories like quicksand; the cakes I helped him bake and the homework I helped him write and the time I took him to Chipotle so he could try a cheese quesadilla.
Whenever I hear or read a story like Jim and Leslie’s, my instinct is to jump into action. I will Savor Every Moment, all in capitals. I will Make The Most of My Life and Enjoy My Children and Feel Blessed, also in capitals.
But then the petty grievances start to pile up and interfere like paper cuts: the dryer shut off too early and now the clothes are still damp and I can’t fold them.
Jack won’t stop playing that song Macarena, Charlie takes a zillion hours to finish one math problem, we’re out of milk again.
I don’t want to bake cookies with Rose because then I’ll eat them and I’m trying to eat less sugar because people at Crossfit are on some detox and they are eating practically no sugar and the least I can do is not eat nine cookies at one time.
“The reason I felt like I had to tell this story now…though all the happy memory stories have really been such a balm to my grief, is that this weekend, Sunday, Lily’s communion class will officially go through their first holy communions. And proud parents will post their children’s pictures on Facebook and elsewhere with captions like “So proud of our big girl” and “Happy First Holy Communion, Baby!”
And I wanted to post Lily’s Facebook pictures from her communion around the same time so that friends and family could celebrate her communion now too and tell her how proud we are of her and that we don’t have to focus so much on her mother’s death, at least not right now. Right now is for her.”
In between Jim’s words, I found my own message; instead of trying to Savor and Enjoy and Feel, I would be better off trying to live in the chaotic, unpredictable space of now.
In the space of now.
This phrase is only five words–just five syllables–but it’s powerful.
I will savor, and enjoy, and feel this moment, in this space, right now.
In the space of now, I will help him regulate.
In the space of now, I will eat a warm chocolate chip cookie.
I will dance the Macarena.
I will write out the recipe.
I will remember that some shadows are shaped like angels, with long, feathery wings and a heart-shaped smile.
In the space of now.
When Rose walked slowly toward the altar on Saturday with the gold chalice in her hands, I resisted the urge to reach for my camera the way I normally would. Instead, I just watched her. I watched the sweet curve of her cheek and noticed the way she’s become all angles and legs and elbows in the past few months. I saw how she bit her bottom lip in concentration, and the way her cheeks were flushed pink.
How, when she walked past our pew, she stood so tall.
(Read Jim’s full blog post here.)
C
May 11, 2015 @ 1:34 pm
I have a child who is not autistic, but who resides in the same zip code. Some stims, some sensory issues, some definite social issues, but they don’t call it autism and it also comes with some delays. I definitely understand the hovering. As an introvert, it wears me down.
My mom passed away almost 2 years ago. My dad passed away 8 months later. The kids were very close to my mom….not so much to my dad. I was raised a believer (Baptist) and our kids have been too.
My experience is that this child is still very much processing it all, but that it comes out in the most awkward, jarring way at times that can be pretty hard on the one who is grieving. For example, one day when I was literally merging onto the interstate, she randomly piped up with, “So is grandma a skeleton now?” Pardon me while I swerve, sweetheart. I think I just said, “I cannot talk about this right now. We can talk about this when we’re parked.” and turned on some music to change the subject.
She cried long and hard and loud at the hospice the day that my mom was dying (yes, we were there less than a day), but then has never cried about it since. Lots of questions, always random ones, and about the time I’m ready to follow that question into a full-fledged conversation, the whole thing shifts into a convo about Shakespeare or the Romans or something else. I’m aiming to follow her lead, answer the questions she asks, and trust that she’s asking as much as she can handle right now.
The day after my mom passed away, my daughter told me that she was jealous that grandma was getting to play with our hamsters and getting to meet Moses and Noah and Jesus. Yes, hon, she’s doing just fine. She’s happy and healed.
It’s closing in on 2 years and still, every time I say that we’re going to meet grandma and grandpa for lunch (meaning my in-laws, of course), she immediately without fail will say, “You mean the ones that are alive?” Yep, the alive ones.
Rebekah Miller
May 11, 2015 @ 10:54 pm
I worry about Luke. Luke is 12, and while not on the spectrum, he struggles with anxiety and depression. He is my constant companion and I am his most trusted confidant. Who would understand him and help him if I were gone? I mean, Jonathan would try to help him, but Jonathan and Luke’s bio-mom don’t seem to understand Luke in the same way.
oshrivastava
May 12, 2015 @ 2:16 am
Reblogged this on oshriradhekrishnabole.
Ann Kilter
May 12, 2015 @ 9:13 pm
My oldest daughter would look at my face when talking to a third person to see how she should react. She is 28 and I still need to remind her occasionally to look at the person she is talking to or who is talking to her. Occasionally. She has come such a long way.
Jeff
May 19, 2015 @ 1:56 pm
My son Jack loves to be around my wife. She is calm and keeps him grounded and calm and safe. I am a bit more high-strung, and always busy. Jack likes to hang out with my wife and likes to do active things with me. We have accepted the fact that he will be with us for a while… maybe (possibly/probably) for a long while. He has just turned 14. As we were getting him ready for bed last night he was have a calm moment with my wife. He wanted to know if he could live in our house forever. She asked him if he wanted to go out and have a house and kids of his own. There was this big pause as he contemplated this. Then he asked her if he could bring his kids to our house and have her raise them. He asked her if she could be a mommy to two families of kids. Yes, our son Jack will be around us for a great long while……and maybe, if we are lucky, his kids too.