Child of Stone

I love Discovery Health Channel. I diagnose them as they walk in the door. The attendings on Diagnosis X are still scratching their heads and I've got it. "It's Thallasemia you numbskull!" "Look at the posturing! It's tetanus! jeez!"

It freaks my husband out that I am usually right. "Hey,"" I tell him, my mouth full of popcorn. I didn't get a GED for nothin'."

After my show another program came on. It told the story of a woman who had a mass removed, and the doctors discovered that is was a baby who had died inside of her, and after many, many years the child had turned to stone.

The doctors explained how there was a layer of calcium all over the baby and that underneath was a whole child, perfectly preserved.

The woman, an old lady from Morocco, said she knew he was in there, she just thought he was sleeping, and that was fine with her.


That night I dreamed I had a stone baby, but I was not content to let him sleep. I worked on this outer layer for days, years, months, and chipped and sanded and peeled away the hard layer until one day, it cracked open, and inside was a beautiful, pink baby.




All of a sudden Jude wants me to read to him. It hurt me that I could not share words and stories with him, they meant so much to me.I would try and try and he would cover his ears, overwhelmed by the words and yell, Noooo!

The other day he asked me to read Goodnight Moon to him. I read it, blinking back tears. That night he and I lay on our backs in the yard and watched the moon. He told the moon goodnight and wanted me to, as well. When we went in he wanted "Story Time." I read him several books and he loved it, pointing things out to me, sharing the joy of it with me.

I have been told that if Jude continues like this it may be hard to tell he is autistic in a few years. Things I thought were lost, they weren't lost, just sleeping. Waiting to be awakened, to come alive. No more child of stone, staring off into the distance and screaming when forced to join the rest of us. Flesh and blood, and I knew he was there, all along.

Whole

It is hard to think of your toddler's knee being damaged. Forever. Of course, we are all dying from the moment we are born. No one’s body lasts forever. I just have trouble reconciling the idea of his bones being creaky and stiff before he finishes kindergarten.

I stay pretty positive. There are moments, however, that send me into a dark place, a place that makes me hold very still, and concentrate on my breathing. It is like I cave in on myself for a little bit, until I can remind myself of what is true.

My sons are having a good life. Early on I learned to pray, not for them to be healthy, but for them to know God. They could be handsome and smart, rich and successful, and be lost souls who can’t fathom how loved they are, in this world or the next.

I can’t fix the other stuff. That is my grief, and my pain, and my sorrow. And even if my kids were healthy, that would be my cross to bear, the realization that they will cry and struggle and love in vain, and there is not a damn thing I can do about it.

I have talked to other parents who are self aware enough to know that they grieve as much as they delight in their children. Such a sweet sorrow, as you let go and watch them struggle to stay afloat, grateful beyond measure for all the moments you could smell their hair and look in their eyes and savor, just savor. I watch strangers with their children and wonder if they cry at night like I do, from joy and grief and other inexpressible emotions.

I may not totally get past the guilt that I have passed on all sorts of genetic weirdness that my boys have to wrestle with. They are fortunate in so many ways. Handsome, smart, and loved. Not to mention well fed and cared for in a physical sense. I can tell myself that all day long, and I must pretend to agree when some well meaning acquaintance says, “Well at least they don’t have a brain tumor.”


What an ignorant thing to say. Do you go home and say; well at least my kid doesn’t have a bleeding disorder, or autism? Of course you don’t, you ninny,
Because you always took for granted that your kids would be healthy. I did, too, even in the face of evidence to the contrary.

Jesus was fond of telling people that their faith had healed them. The sickness, and the relief from it, was just not the point. The point was to realize the only way out of pain and hopelessness and despair is to believe with your whole heart and soul and mind that there is an all knowing, all powerful someone out there who wants the best for you, and knows better than you, and loves you, and loves those you love more than you ever could. If you can do that, then you will be whole. Otherwise, what is the point? Are our lives just badly maintained slot machines that never really pay off?

Reach out, I tell myself. Touch the edge of the garment. That is all I can do, to stop the sorrow, the loss, the bleeding of my soul. I can reach out to someone who knows better than me how painful it is to watch someone you love suffer. I wonder if God watched His son sleep and wished it could be different? Does He look at me and wish I could comprehend how much He loves me? Does He cry when my heart is breaking?

Sage came home after a long day at school, trying not to cry because he just couldn’t keep up in gym, and his friends yelled at him to just stay out of the way.

And I can’t fix that, or his ankle that is looking kind of puffy. But I have arms, and grapes and cold milk, and a heart that loves him, and a story about this woman, see, this woman, she just reached out, to the very edge of this garment, because she believed that there was power and love, and she was healed, inside and out.

That is all we can ask for. A safe place and a story about someone who loves us best of all.

Cherished is the Word

I have always wanted to visit L’Arche, Jean Vanier’s communities for the developmentally disabled. There is one in Cicero, not far from Chicago. A friend of mine worked there, off and on, before joining Jesus People. She was our babysitter for a time, all no nonsense and calm and practical. Sometimes I thought Carolyn was babysitting me, her nineteen years to my thirty something, coaching me as I nursed Eden and potty-trained Jude. My favorite Carolyn advice, "You can say no to him, you know."

It was an unfamiliar concept at the time.

Last week, late in the summer afternoon we all head out to the yard, the boys and Gramma and Don and myself. People are grilling and tables were set up in the garden. It looks like Carolyn is having some friends over. I sit on the bench and Jude heads over to lie on the cement and watch the water in the big drain on the basketball court.

I have my shuffle on, listening to Aretha but on low so I can hear any sounds of disagreement or distress, from or caused by my kids.

A shadow makes me look up. A nicely dressed young man, clean shaven and smelling of cologne, holds out his hand. “I’m Chris. Nice to meet you. Do you like the Price is Right? They have a big wheel, it lights up and it goes in a circle. It’s very tall, and I like things that are big and light up.”

“Hi, Chris,” I say, somewhat taken aback, instantly recognizing the tempo of his speech and his mannerisms. I look over his shoulder. Carolyn is watching us and smiling. Oh. L’Arche is here.

Chris wants to know if our building has a sprinkler system, and how do I feel about Crown Victorias; don’t I think they were the best cars ever made?

He chats with me awhile, and then starts telling my mother about Schaumburg, where his parents lived. I cannot take my eyes off him. I glance over at Jude, flapping and muttering, and back to Chris, and then back at Jude. Oh my God. I was seeing my son’s future, his Doppelganger.
Wow.

“Isn’t he great?” Carolyn says. “I wanted you to meet him. His parents are awesome, they just adore him.”

And I can see that, because Chris radiates it, that sense of self, when you meet someone you know has been cherished, has been raised well. My son has that intangible quality, as well, that brightness that says, I am the apple of someone’s eye. Someone dreams for me and hopes and believes in me.

That is what I know, when I look at Chris. He is defined, not by his neurological differences, but by the simple fact that he has been fortunate enough to be adored.

Jude comes over and points out a pigeon. I gather him up in my arms and whisper, we are so lucky, you know that? “Lucky,” Jude repeats.

Carolyn asks me if I would like to meet Chris’s parents someday.

“Yeah,” I say, still watching him. “And when you see them next? Tell them thanks.”

Carolyn smiles. “No problem.” And she heads over to sit with her friends.
“Thanks mama,” Jude says, and gives a little flap.

I look up and Chris is smiling and talking at the table.
“No problem,” I tell Jude. ‘No problem at all.”