Onward We Press

My day began well. I dropped off Gabe at school by 9, and then, as I pulled away... the dread of "I feel like I'm forgetting something" set in. Oh yes! I thought. I forgot to clean his rest time mat over the weekend. I phoned the school, they had extras. I was fine. Whew.

My mind most of the morning was preoccupied with arriving back to the apartment in time for Anna's speech and feeding therapies, scheduled for 9:15, putting her down immediately after for a nice nap before occupational therapy arrived at 11:15. OT arrived, decent session, looked on from the white chair in the living room while I composed an e-mail to her neurologist with videos attached of Anna reaching, sitting, and a few other daily activities. OT leaves, we have a quick lunch, change into respectable-looking clothes, pack up the diaper bag and head out for the drive to Schneider's Children's Hospital at Long Island Jewish Hospital Center for Anna's 1:30 gastrointestinal appointment. So goes a day in our life.

Until I get a call from Gabe's school. His afternoon teacher is on the other line. "Ms. Gutierrez? Yes, hi, it's Ms. D. Uhmm.. We are a little confused. Gabriel doesn't have a lunch today."

To be honest, the first word that came to my mind was: "Shit!"

I forgot to pack Gabe a lunch today. Mortified, all I could do was laugh and apologize profusely. He got a hot lunch, we paid the $1.50 at pick up, and all was well, until I arrived home a bit later with Anna. Excited to see each other, Gabe and I hugged. Then: "Mommy! You forgot my lunch!!" I asked, "Were your teachers upset? More importantly, were you upset?"

"No! Mommy, it's okay. We all just said that you were a silly button!"

A silly button. Yes, I was.

As we got the kids settled in for dinner, I had to head out to the grocery store and pick up some things for tomorrow, namely, stuff for Gabe's lunch. As I headed to the car, I thought, "hmm, now would be a good time to head to OLMC's lower chapel."

(OLMC is our parish, Our Lady of Mt. Carmel, where Anna was baptized.)

Normally I am so painfully busy I never have a moment to spend there, but I did now. As I walked through the parking lot, grocery store now on the back burner, our amazing pastor pulled in to the lot and got out. "Stefanie!" "Hi Msgr. Ogle!" I had 10 minutes before the chapel closed, but he asked me how things were going.

Now I don't know what it is about priests and nuns, but there are just some out there who are so spiritual, so (in no better way to describe it) close to Christ you can see it, feel it, and it completely disarms you. Lately, when the few who know Anna's current going-ons ask me how I am doing, I shrug it off, say "we're doing okay" or "everything's fine." For the few, I can be honest. But lately, the emotions become more raw, more real, more hard to handle. This is the situation. This is it.

So as the words fall, "How is everyone?" so do my tears.

"I don't want to be a drama queen, Msgr.! But......"

We head to the rectory, into his office. And for an hour, the flood gates open. For anyone who recalls, I do, really do, have a hard time coming to terms with real, big, fat, warm tears. It's a defense I guess... A rebuttal. Who needs tears?, I think.

Tonight, that all went out the window.

Last Friday. Neurologist. Cerebal Palsy. Maybe something more. Upcoming diagnostic tests. Send me videos of her tremors. Genetics. Spinal tap.

It is hard to write this. Hard to feel it again.

C.S. Lewis came up a lot in Msgr. Ogle and I's conversation. The Problem of Pain. A Grief Observed. Books I have read in another time. A time when I didn't know what it was to bear children, to love a husband so much it hurts, to see your your child, that really is your whole heart, go walking about the World and go crazy trying to protect them from it. To see suffering. To feel compassion. To be stretched as far as you thought you'd go then you'd break, but then be stretched some more.

I've gone through denial, anger, sadness. More anger. Sadness. Uncertainty. Anger. I hurt.

I need an answer. A diagnosis beyond "it's cerebal palsy but we feel there is something more."

Eight specialists. Genetics, pediatric neurologist, physiatrist, pulmonologist, developmental pediatrician, gastrointeroligist, allergist, optomologist. Four therapists. Speech/feeding, occupational, physical, and special instruction.

I love her. And that alone makes this all worth it.

I revisited C.S. Lewis this evening. In A Grief Observed, I am grateful to Lewis for having the courage to yell, doubt, and kick at God with angry violence. I've been muttering under my breath for months: Why us? Why her? Why me?

But isn't this a healthy part of grief? It's helpful that he, a successful apologist for Christianity, had the courage to admit doubt about the very faith and religion he so incredibly proclaimed. It has given me permission to admit my own doubts my own anger, anguish, and to know: this is all a part of the soul's growth.

And onward we go...