This is a serious, rather painful blog post. If you aren't in a serious mood right now, this is not the post for you.
I'm a frequent reader of Carrie's blog, Little Miss Hannah. Carrie writes about her daughter Hannah, who has recently been diagnosed with Gaucher Disease. She wrote a post today that made me want to share our own experiences with dealing with the knowledge that our son may have a shortened life span.
We were originally told that Connor would be stillborn, and I spent the last four months of my pregnancy waiting for him to die. Every week we would go in for an ultrasound, every week we would see him still moving, his little heart still beating, and every week Jeremy would drive us back to the house while I sobbed in the car, simultaneously relieved and terrified that he was still alive.
We didn't know what the future would hold for us, but the doctors told us that it would probably be bleak.
When Connor reached the point where he could survived outside the womb, we began to have more hope. Surely if he'd made it this far, he would be okay. When it looked like he was taking a turn for the worse, we went ahead and induced labor. Connor was born after 23 hours with his umbilical cord wrapped around his neck, blue-gray, unbreathing and totally limp. His heart was still beating, though, and five minutes later I held a tiny little bundle in my arms for an all too brief moment before he was whisked off to the NICU.
Everything was so confusing and it was all so fast that we didn't really know what to think. Connor had a whole host of life-threatening problems. He had about 25 birth defects, affecting almost every system in his body except for his respiratory system. His right kidney was so large it was cutting off blood flow to the rest of his body and displacing his other organs. His brain was missing a couple of areas and others were small or malformed.
On the second day they gave us the news. We were told that if he was to make it that he would probably have what they called brain stem function only-- that he would breath and his heart would beat, but that was about it. He would never know who we were, never interact with his surroundings, never laugh or move his arms and legs with purpose. I lay awake that night secretly wondering if it would be better for him if he didn't survive.
On the third day they let me hold him for the first time. It was a delicate and tricky maneuver-- he had so many wires, sensors and IVs that it was terribly difficult to transfer him to a chair without losing something, but Jeremy and the nurse managed and suddenly Connor was in my arms. He let out a little sigh and fell asleep. I remember bending over his head, and the smell of his hair hit me like a wave and I was utterly, completely lost. He smelled like a combination of every good, clean thing there is in this world. Fresh baked bread. Newly turned soil. Air swept clean after a thunderstorm. Home. That was it for me. It didn't matter what the doctors said. I was in love.
On the fourth day, we sat in a little room with seven doctors and a chaplain who asked us to choose the manner of our son's dying. Connor's kidney was causing his blood pressure to sky rocket, and they didn't think his heart could hold out too much longer. If they didn't do the surgery to remove the kidney, he was sure to pass away within the next few days. However, his blood pressure was also dangerously high for surgery, and they believed that his heart probably would not make it through the stress. They gave him between a five and ten percent chance of survival. What did we want to do?
We knew that kidney ailments are excruciatingly painful, and that Connor had probably been in constant agony for the last three months of my pregnancy. We felt like if Connor was going to pass away, it would be better to do it on the operating room table where he would feel nothing and his passing would be quick rather than a lingering painful death. There was the feeling, too, that Connor had fought so hard to make it this far, that we couldn't allow him to not have that chance. We calmly explained our reasons, and told them to do the surgery. Then we asked for a moment alone, and when everyone had left, broke down in each other's arms.
We baptized Connor that afternoon. The chaplain was excited: it was his first baptism, and he was very honored to be present. He smiled as he told us that normally they don't do these things unless it looks like death is near, but he'd talked with the doctors and thought that it would probably be a good idea. Then he realized what he'd said, turned a little pale, and suddenly became very busy looking up a passage of scripture.
On the fifth day, we said goodbye to our son. I remember waking up that morning and being shocked that the sun was still shining. It didn't seem right, that the sun should be shining on the day my son would die. And all of the people walking around on the street-- didn't they know that the world was over?
We took a roll of pictures of him. We sang him a lullaby. We caressed his forehead. We walked in silence next to his isolette as we headed down towards the surgery room, and with every step it felt like I was walking in a dream. None of this should have been happening. I wanted to snatch Connor out of the isolette and run.
The men who transported him down to the operating room didn't know about his prognosis. We reached a corner and stopped.
"We call this the kissing corner," one of the men said. "We call it that because this is where you kiss them goodbye."
And I looked at my son, and touched his hand through the glass, and I said goodbye. I tried to throw as much of myself into those words as I could so that he'd know I was there with him and he wouldn't be scared. And I watched them wheel him around that corner, saw a last glimpse of his hair through the glass, and I thought, that's it. That's the last time I will see my son.
We managed to find a private room, stumbled into it, closed the door, put our arms around each other, and felt our hearts break in our chests.
For part 2, click here.