“Did you feed the chickens honey?”
“I thought you did.”
“No goddammit, it’s your day.”
“No, it’s my day to water the plants.”

Beck and I on vacation in 1984. Talk about your bad haircuts!
This was not a great time in our lives. It was between the time that our son Ross was born and then died 23 hours later and when Lucia was born in 1985. Ross had trisomy 13, an extra thirteenth chromosome. Down’s Syndrome is a trisomy, trisomy 13 is much more devestating in it’s effect. Very few trisomy 13 babies live very long, and Ross was not destined to. There was no indication that there was any problem during the pregnancy but when he was born the nurses and doctor rushed him out of the room. Apparently he stopped breathing immediately and they resucitated him. The doctor returned to the delivery room and told us that he had a cleft pallette and some other problems, and that they were evaluating him. We really didn’t think much of it, “Oh well, cleft pallette, we can deal with that.” But then the doctor returned and told us the full story. Most of his systems were really not developed at all. Including his nervous system, including his brain. We were, of course devestated. Beck and I and some family were in her hospital room when the doctor, a really sweet man, came in and asked to talk to us in private. He wanted to know if we wanted them to do any heroic measures to keep him alive. I said that I’d like to talk to Beck alone and he understood and left the room. I knew what I thought; I turned to my wife, her eyes were wide and damp and she was shaking her head no. In a sense that was both the easiest and the hardest decision we’ve had to make. The doctor hadn’t gotten two doors down the hall when I caught him and gave him our decision. He stayed alive through that night and died the next morning.
Things were pretty rough for us over the next years. Becky was dispondent and had a very hard time for a long time. I started drinking more and my temper got worse. People from our social circle, I won’t call them friends, avoided us because they simply didn’t know what to say. For awhile we were afraid to try to have another baby. We had had genetic counseling and they told us that it wasn’t hereditary and that the chances of a recurrence were small, but there is always that nagging fear that it could happen again. Amniocentesis would tell us of any genetic defects, and that’s what eventually gave us the courage to get pregnant again. In 1985 while Beck was pregnant with Lucia, I quit drinking. And then L came into our lives and then Q came into our lives and the recovery began.

Another word about the doc. He was a big Italian guy with a beard, about my age now. He was a tremendous comfort to us during that aweful time. At one point in the highly emotional scene, he hugged me and kissed me on the cheek. My mother-in-law was so entertained by that.

13 thoughts on “

  1. Thank you for sharing that story.  I don’t know what to say except that I’m sorry for the loss you suffered and admire you and your wife’s courage to get through it and try again.

  2. Wow……..the flannel shirt, jeans, and coveralls all bring back memories.   Yeah…..I’ve read about Trisomy 13……..  long ago in a genetics class.  Now I’ve experienced it 2nd hand.

  3. Fuck – sorry – hadn’t read the actual entry.  Thank you so much for sharing this story.  Love and commitment can see you through the roughest patches.  Sending good vibes to you for a sad memory.

  4. i keep coming back to this, thinking there will be the right comment.   there isn’t.  thank you for telling us, though.  you’d never know it from the picture.  funny thing about pictures, huh.

  5. I guess I don’t know what to say either (like the people in your social circle).  It’s a touching story.  And you know, when people talk about the “stuff we went through” as a family, which was tough in its own way, I can really be thankful that we never encountered this type of adversity.  I have no idea how we’d even handle such a thing.  Thanks for the story.

  6. I wasn’t clear I guess about not knowing what to say. Who does. My point was that some folks seemed to avoid us. I guess I can’t blame them, I’ve done the same. As far as handling it….you just do, you have no choice. At one time a day didn’t go by without my thoughts going there, but I rarely even think about it anymore.

  7. Good to know that there’s still some Doc who isn’t afraid to reach out and get involved like that.  Regards to you and your family.

  8. through it all you still managed to come out on top…  I respect that… I can’t say I could have done the same… and I can’t say I wouldn’t be liek the people in your social circle that avoided you… I’m young and stupid and hopefully life can teach me to become a better person… some of your stories make me realize alot about life… am I speaking nonsense again? i always do when I write more than one sentence…

  9. Thank you for the history.  That is very intense.  It sounds like things are looking up.

    Children change your life so much.  Thanks again.

  10. I guess if I was really honest when people ask “what do you do?” I’d say “I’m a parent.” It’s the hardest thing in the world, as your story brings home intensly. It’s the best thing in the world. As you know.

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