Today my feed is full of mothers and mothering and today my sweet neighbor fell down the stairs and never got up. So everything seems close and tender and I want to share something. This journey with a child with a disability is mighty hard, and unreasonably tiring, and unexpectedly beautiful. As has been said. And the beautiful takes many different forms for different people, and a lot of people will tell you the ratio of hard to beautiful can be really Off sometimes. So you cling to the Beautiful when you get it. I want to share that the Beautiful is with me in a new way now, since something happened about 10 days ago.

It was about 6:45 in the morning, and we were downstairs, and P. had been up for well over an hour. (He’s an early riser, see above, tiring.) My husband had gone to work early. I had been running myself ragged bringing him to his brother’s two baseball games that week, and feeding him dinner there, and trying to watch his brother play while he ran around the entire time, completely demanding every second of my attention, to physically carry all 40 lbs of him away from the girls on the swing who don’t want him there, down from the fence, away from the forest, into the car. I won’t even get into the potty training, the poop on the driver’s seat of my car, the endless poopy underwear. I have been working a lot on a lot of things and I was Worn Out. At 6:45 in the morning in kitchen I started crying. I felt so tired, and I felt like, When does this get easier? I called P. for like the 3rd time to come and eat breakfast. He finally came in the room but before he sat down, he turned to me, as if he heard a distant dog whistle from my direction, and walked over and reached his arms up to me. I knelt down and hugged him, Oh, my boy needs a hug. Another thing I am supposed to do but don’t feel like it. But he didn’t want a hug. He looked me straight in the eyes, holding my face in his hands. His alabaster face was a mask of peace. Like a Buddha. He knew something. I held his gaze.

He hugged me, in a different way than he ever has. He held me like a mother. He gently patted my back. For a LONG time. I started sobbing. He kept holding me. He didn’t cry at all but my crying was no surprise or upset to him. His face and carriage kept this expression of complete peace. Periodically he would pull away and look at me, with this look of total understanding. Then he would hug me again. He knows everything, is the thought that came to me. He knows everything since the beginning of Time. He knows how much I have resented him. He knows. He knows I have had second thoughts that I chose him. He knows and he understands and he forgives. He doesn’t know how to resent, how to divide himself. He only knows how to love. I don’t know why this is happening.

His brother heard me and came over and joined in the crying and hugging. Patrick hugged him too, with just as much love and understanding. George burst out, “My brother is the best brother there could ever be! I never want to have a different brother because he’s the best!” Even to this, Patrick responded with a knowing smile and a maternal hug for his brother. We sat there on the kitchen floor huddling and wet and knit ourselves together.

I spent the rest of that day in a fog, like being newly in love. Un coup de foudre, as the French call it. I felt dizzy, gleeful, utterly exhausted, deliriously happy. And then normal but with a love hangover. I tried to hold onto it, that really happened, I didn’t dream it. I had a visitation, a moment of grace, an angel sat on my shoulder, what? What WAS that?

The best I could do as I drove around absent-mindedly that day, getting a tire fixed, buying groceries, was Oh, ok, I am parenting a Perfect Being. Who happens to have a lot of really intense needs. After those several minutes on the kitchen floor he went back to refusing to go to the bathroom, wanting to watch Bugs Bunny as a reward for getting his clothes on, running into the woods behind our house so I can’t catch him as the bus is about to pull up. But now I don’t go, Why is this happening? Why me? Why did I get this kid? I know people think special kids only go to special people but f*** that sh**, I am NOT equipped for this. Where is my perfect family? Where is my perfect life? SOMEONE GIVE ME BACK THE PERFECT LIFE I WAS SUPPOSED TO HAVE, OR ELSE I WILL MAKE THIS GET UGLY…

I go: Ok, Perfect Boy got needs and behaviors and I gotta manage them. Holy crap I’m so tired. But a gift is a gift and you can’t look it in the mouth. This is what it is, so put your big girl boots on and Deal. Deal with the bliss that shines right among the poopy underwear. Deal with the light so bright you can hardly stand to look at it. Deal with riding uncomfortably close to an edge you didn’t even know was there a few years ago. If you fall you’ll be caught. Walk right up to it, look over. You thought it was horror and suffering but it’s unbearable brightness. Underneath your rage and self-pity is more rage and self-pity and underneath that and underneath that and you keep going and you get to love. So you might as well just cut to love.

That’s what he does.

If you have a prayer here. With this.

I cut to love. I cut to love. I cut to love.

Happy Mother’s Day

Father

My dad died in October.  That week I fixated on objects.

The blue bathrobe we bought at the Big & Tall in San Francisco when I was 13.  My father was not shopping there because he was tall.  “These aren’t clothes, these are living quarters,” he would say, among other things.  We laughed so hard my mother was worried we were offending the other customers.

The morning my father’s death was announced, my cousin posted about the alligator clips.  I had forgotten those violent little clips– how they punished my curiosity.  He would use them to clip on a napkin bib every morning, before he started the car for the trip to school.  He would take alternate sips of scalding hot coffee and bites of buttered roll as he drove.

My father was dying in the living room.  The room overlooks the river he had gazed at while writing five editions of textbooks, countless law journal articles, dozens of tooth fairy poems, and tiny notes in tiny hand folded inside hundred dollar bills.  The dining room table’s beautiful blond wood was covered with the folding mats my sister and I would lift awkwardly out of the closet for holiday dinners, on top of which were medical supplies, from adult diapers to skinny straws to those plastic pink rectangular hospital basins.  My mother, hater of waste, didn’t skimp on the boxes of plastic gloves and little pink swabs on a stick that helped moisten his dry mouth.  Then after he died they threw it all out.  Not one pill can be repurposed for someone else.  And they must be disposed of in person, as it were.  You cannot throw a whole full bottle out.  Each bottle carefully and laboriously emptied into the trash.  Death, rules of.

The week he passed (an expression I used to hate but whose gentleness I have come to appreciate) the grandchildren picked raspberries and played a weird invented game with a stuffed sheep.  They radically loved it but haven’t played it since.  The few times my son came inside he would walk slowly up to grandpa’s bedside and look wide-eyed at his sunken cheeks and labored breath.  And then he would turn around and go outside again.  The raspberries have been in the freezer until this week, when I made jam.  With the jam I may just make that insane cake my father invented out of pure passion and my mother loathed: a pound cake filled with raisins, with alternate layers of apricot and raspberry jam.  And a thin layer of vanilla icing drizzled over the top.

The day he died I went to the dentist.  She sat me in the chair and took out alligator clips.

Somewhere there is a Big & Tall where my father is eating raisin pound cake with an alligator clip bib and staying just this side of socially acceptable.  But there’s a group gathered around him for the running commentary and they’ve got laughing eyes and icing dribbling down their  chins.

I’ve been experimenting with gazpachos, because baby who really isn’t a baby anymore but a toddler will eat veggies this way, and because it’s a great way to use a lot of veggies from the farm we belong to.  And they say kids just love to help.  A nanosecond after this was taken the knife, pepper, and hat were on the floor.  

The moment my first son was born, I remember the world I knew rushing out, rather like the  one one trillionth of a second after the Big Bang in which the universe began to grow outward in all directions and went from nothing to infinite. The life I knew had gone forever and a new life came at the same moment in its place. With a bright red scrotum.

There was the pregnancy, there was birth, and then there was that bit that they don’t talk about in the birthing classes and the pregnancy books: mothering. It sometimes seems a little bit like an inconvenience to have to deal with that, especially if you’re inclined to like to dwell on the pregnancy and birth part — so womanly! So MAGICAL! But the thing is, those parts END, and the mothering (if you’re lucky) does NOT. No book will tell you what to do when your younger son wants to play with your older son’s penis in the bath. Or how to patiently explain to your three year-old why he may not smother his brother with a pillow. I felt kind of thrust out of the warm, nurturing woman tent at those points. Every parent has to figure it out his or her own way.

There is this, that you know, if you are a mother. You are a member of a club—yay! A club they can never kick you out of.

You are a Mom.  Important.  Beloved.  Cherished.  Needed.  Purposeful.

I felt all this in the years after my first son was born.  And then I got pregnant again and I also felt a host of other things that put me in quite a different club.

I was told, after my 15-week quad screen came back with a very high risk of chromosomal abnormality, that there was a 1 in 2 chance that my baby had “Trisomy 21, Trisomy 18, or Trisomy 13.”  All the little trisomies; the first of which was familiar to me from my college biology class, the diagnosis otherwise known as Down syndrome.  I remembered my college friends Chris and Peter, who also took that lecture class, inventing a game show like blackjack where the pregnant mom is told (game show announcer voice) “You have 21!!!!”  Their increasingly exaggerated voices played back to me in stereo during the following months, as I anticipated the birth of a child with Down syndrome: driving my son to daycare, sitting in the dim light of yet another distant ultrasound room, waiting for another specialist with an ever-more-complicated-to-pronounce kind of job, another procedure.

This time the universe changed more slowly, more imperceptibly, like the inexorable movement of the moon around the earth.  The moon had the face of a child with Down syndrome, and he followed me from the grocery store checkout counter to the 6 o’clock news, the turnpike rest stops.

I did not attend the birthing classes, the pregnancy circles, though I am sure I would have been welcomed.  I ceased to read the books, because whenever I checked the glossary for “Down syndrome” or “special needs” it never went further than to mention the risk and ways testing could detect it.  I did not consider a home birth, as I knew I should be in a hospital when Patrick was born.  I didn’t put pictures of my belly on Facebook.  When I was pregnant with George I was joyfully awaiting a baby, and with Patrick the world seemed to think I was giving birth to a Eugene O’Neill play, a bleak future of a miserable family.  I cried to my husband at night about the woman with her grown son in the grocery store, always together.

But I had a secret that I didn’t even let myself in on fully.  I kind of think of it as our secret, Patrick’s and mine.  I still thrill somewhere to think of it, because it seemed like a transgression, a taboo: I loved this child, I wanted him, cherished him.  After leading a life focused on achievement and always measuring myself against the world’s arbitrary standards, it felt kind of just right to accept this child, this change.  Yes, thank you, I get it, haha.  Yes—me, ok.  I get this kid.

I knew Patrick was going to be ok, the way you know that you are loved when you are a child.  I knew it deeply and incontrovertibly.  Not merely ok but great.  In a world that values the capacity for success and achievement over a capacity for connection and love, a value system I had lived by even while it caused me pain, I was choosing to have a child who would likely not achieve anything I deemed important and valuable.  Many people did not understand my choice.  It was all right.

My doctors had said I would deliver on August 3rd.  But, as with so many things about Patrick, the world outside was wrong.  I had thought I was pregnant a month earlier but bled a bit and tested negative. The doctors said I was about four weeks pregnant in November but I was in fact eight weeks along.  It turned out the baby was testing small because of Down syndrome.  In early July we decided to take a short, last-gasp vacation to Cape Cod.  I furiously cleaned the house before we left, and insisted to my husband that he thoroughly clean the car—peak nesting signs—before we set off.  I made sure we had the address of the hospital programmed into our GPS.  Somewhere I knew but I didn’t let myself in on it.   That night I asked John to drive me to the hospital as I wasn’t sure but I thought I might be having a baby.  “Could be a kidney stone,” I said to the doctors at the emergency room.  One examined me and said, “You’re eight centimeters dilated and you are having this baby in about half an hour.”  I cried, out of shock, and an hour and a half of pushing later Patrick came out absolutely beautifully, crying and wiggling, and I like to think laughing at the anxious obgyn and pediatrician, awaiting a Down syndrome baby from a crazy mother they didn’t know from Adam who went on vacation despite being clearly about to give birth.

Patrick was a great feeder, a prodigious sleeper, and everyone loved him right away.  He is 20 months plus now, robustly healthy and unceasingly good natured, as well as naughty and destructive as any toddler.  There is a certain chair in our living room that when he sees me sitting in it, he ambles with his rocking gait right toward me, making his personal sign for me—his hand over his ear and his head cocked to the side— and lifts his arms to be lifted onto my lap, where he rests his head on my chest, then looks up at me for a long time, patting my face uncoordinatedly with his little hands, as if to say, “It’s ok, Mommy.  You’ll be ok.”

The night before Patrick was born I ran through the waves of the Atlantic, feeling at one with myself, a tiny creature swimming in a vast ocean without, and my baby, making his inexorable way through the perhaps vaster ocean within.

July 12, 2014

The moment my first son was born, I remember the world I knew rushing out, rather like the  one one trillionth of a second after the Big Bang in which the universe began to grow outward in all directions and went from nothing to infinite. The life I knew had gone forever and a new life came at the same moment in its place. With a bright red scrotum.

There was the pregnancy, there was birth, and then there was that bit that they don’t talk about in the birthing classes and the pregnancy books: mothering. It sometimes seems a little bit
like an inconvenience to have to deal with that, especially if you’re inclined to like to dwell on the pregnancy and birth part — so womanly! So MAGICAL! But the thing is, those parts END,
and the mothering (if you’re lucky) does NOT. No book will tell you what to do when your younger son wants to play with your older son’s penis in the bath. Or how to patiently explain to
your three year-old why he may not smother his brother with a pillow. I felt kind of thrust out of the warm, nurturing woman tent at those points. Every parent has to figure it out his or her own way.

There is this, that you know, if you are a mother. You are a
member of a club—yay! A club they can never kick you out of.