I worked on Monday. The 13th, the first day of my life, the last day of my life. I was at work well before dawn, singing softly to you while I set up the pastry case, swaying and feeling you kick your good mornings. I was so excited. I already knew you were a boy--I was already calling you Isaac. Somehow the moment we chose your name--the moment you somehow told us your name--I knew you were my son. I could no longer imagine some vague girl-child. You were a boy and you were mine. All that waited was for the ultrasound to show it.
Finally it was time. Your father was waiting for me at the doctor's office. We were so excited we could hardly sit still. Last time, a month ago, you didn't let us see. We saw your perfect little face and one of your little feet kicking, but you had your legs crossed and wouldn't move to accommodate us. They told us your little arms were folded under you. I though it was so sweet, because your daddy sleeps like that sometimes--his arms folded tight, one leg bent at the knee. Even that last ultrsound, I could see how much you looked like him. Every night you kicked enthusiastically at the same time he would start pacing and fidgeting. I could picture you so clearly, all rough and tumble, learning to climb with him, playing in the yard with him. All boy. Both of you.
The first thing she did was look, and there you were. All boy, no doubt about that. We both almost cheered. I remember I said hello to you, and used your name with confidence for the first time. And there was that perfect kicking foot. You were trying to suck on your tiny toes. And she started to look for your other foot, your tiny hands. For our peace of mind, since my father and half brother had birth defects. Just count your wee toes and fingers, just to be sure.
We had always been told that there was no reason to fear that you could have the same thing your grandfather had, your uncle had. That I had ten fingers and ten toes, and so couldn't pass it on. "If she had it, she'd HAVE it" they told my mother when I was born. "If you had it, you'd SHOW it" they told me years ago, when I went for genetic counseling. I didn't bother when I got pregnant with you. There wasn't any real reason to--and later, Kathryn, our new genetic counselor, told us that even she would have placed the odds very low. We couldn't have known.
It was moments after our joy at seeing you, healthy and male, that the world started to end. We both noticed almost immediately that you hadn't moved from the last ultrasound. How could that be, when you never stopped moving? I could feel your flutters nearly every moment. How could you still be cradled in that same spot? The technician stopped talking as she scanned around, pushing the sensor so hard against my belly that I felt the bruises forming. We told her not to spare us, to tell us what she was seeing--to tell us if she saw what we saw. Your little arm waved, but there was nothing past the elbow. Nothing...
The silence in that room was like an entity. I held your father's hand, and held my breath. I could feel him squeezing me back. He knew something was very wrong too. Finally, she spoke--told us that she wanted us to go across the street to the hospital, where they had better equipment. She thought your other arm was folded under you, but she could see both your legs and they were fine. She thought.
We held each other tight while we waited for my doctor to come talk about what she thought the ultrasound meant. We were both hopeful. So you only had one arm. You could live a normal life with one arm. We reassured each other that it didn't matter. We wouldn't treat you differently; we wouldn't spoil and indulge you. We'd
make sure you had the best of everything.
Her eyes were sad and sympathetic, but she didn't dance around the words. She saw the same thing on both your arms--there were bones missing in your forearms. You had no hands at all. She got us an appointment across the street for two hours later. We walked out of that office still determined, still hoping. We had two cars. I called your grandmother as I drove home, and then tears came. But my mother was just as strong, just as determined. We all agreed, you could still have a good life, and almost normal life. We could still make this work.
I don't remember much of those two hours at home. Your father paced and smoked. We both cried a little, but we were numb. Numb and determined. I remember googling things like prosthesis, upper-limb defects. I was trying to build some kind of system. We didn't cry much. We tried to be resolute. You were our beloved son. We would find a way to give you a good life.
We took one car to the specialist. I don't remember the drive. I remember holding your father's hand as he drove--looking at his hands, touching his fingers. I've always loved his hands--so masculine and strong, but so tender and gentle when he touched me. I wouldn't let myself feel the agony that you didn't have them. Deep inside myself I could hear myself screaming. But I wouldn't let it surface. I kept saying useless things about how you could still be okay; we could make this work. Your father kept saying the same things, patting my leg and sticking out that stubborn chin I hoped you'd inherit.
I remember walking into the unfamiliar office. I took the packet of paperwork and went to sit down. Somebody's toddler--sturdy and healthy and perfect, healthy chubby legs sticking out of little camouflage shorts, blonde hair in a toddler mohawk. He ran up to us grinning and giggling, and stuck his hands up in the air, his fingers all splayed out. Tears came to my eyes and for a moment, I couldn't hold back the screaming mother inside me. I wanted to scream, to fall on the floor, to rail against fate. I forced it back, but when I looked in your daddy's eyes, I saw the same screaming agony. I made myself sit down and do the paperwork.
They called us back almost immediately, and got us settled in the room. Of course, I had to go to the bathroom--so then we had to wait for them to come back to us. I lay on the table, tears sliding out of my eyes, sometimes a sob escaped. Your father held my hand tight, stroked my hair. He kept telling me it would be okay, but the pain in his eyes was raw.
The technician came in again. We told her to tell us everything she saw, no matter how bad. We told her to please, just keep talking. The sensor hurt instantly, pushing against my freshly bruised belly. She kept apologizing for hurting me, even as I told her it didn't matter. Nothing mattered but you.
She confirmed that your arms were missing, but we weren't surprised this time. We knew. But then she started looking for all the bones in your legs. They weren't there either. One leg was perfect, hip to toe, everything where it should be. But your other leg--the leg you kept bent. Bones were missing there, too. And that other wee foot--it wasn't shaped right. She scanned and prodded and looked and talked--but I don't remember what she said. Her voice was gentle and hopeful, but her eyes had that same sad look. Your father and I just looked at each other. All that we could see in each other was the pain.
The doctor came in, his eyes just as sad. Tears in his eyes--I remember that. He sat down and talked to us in his gentle voice. He explained the extent of what he saw, gently touching my arms as he explained what bones you didn't have, touching my leg where your bones were missing. He explained how your arms, the little partial forearms you had, would never extend; you wouldn't have any ability to move them; would never even use the crook of your tiny elbows to compensate for not having your hands.
At some point he asked us if we wanted to consider termination, and gently explained that because you were almost 24 weeks old, we had to decide what we were going to do within a day or two. He said many other things--he talked about if we kept you, how you'd need to go to the Shriner's hospital within a week of your birth. He talked about some of the surgeries you'd have to have--I remember him saying that your first surgery would be when you were a month old. I remembered my first memory of my half brother--he was about six months old, and had casts on both his tiny legs, hip to toe. He was screaming in pain.
In my heart I knew then that I couldn't make you go through that. I couldn't force you to live a life with only one functional limb. I couldn't make you go through months and years of surgery, only to maybe,
maybe someday pull yourself around on specially designed crutches. You'd suffer so much agony, so much physical pain, so much emotional pain. You'd never run, never climb, never hold hands with some pretty girl. You wouldn't be able to cradle your own child someday.
On the drive home your father and I talked about it, and he knew too. We loved you too much to force that life on you. We loved you too much to let you hurt like that. We knew what the choice was before we got home.
That night is a blur of pain. I cried until I couldn't see anymore; until my eyelids were raw and red. Our mothers--your grandmothers--both came to us and cried too. But I don't remember much other than the pain. We knew you'd be leaving us--and in only a few days. I could still feel you kicking.
If I had "before" pictures I'd share them, but that damn kitchen was so hideous I never bothered.
