Monday, May 26, 2008

Memory Keeper's Daughter

Have you read this book? It's really good. I read it last summer when I was pregnant and loved it. I was so excited to hear that they had made a TV movie out of it. My mom told me to TIVO it and Hector and I watched it together one night after the baby was born. Unfortunately, we missed the first ten minutes of the movie because of a TIVO error so we missed the crucial birth scene. My mom was so eager for us to see the movie and asked me what we thought. I mentioned that we had missed the first few minutes but enjoyed the rest of the movie. She mentioned she still had it taped if I wanted to see the beginning of the movie.

The next day, I went over with all the boys to have lunch at my parent's house. I casually put the movie on and watched the first few minutes which included the crucial birth scene. The premise of the movie is about a mother who gives birth to twins...one who is normal and one who has Down syndrome. I won't give away the rest of the book....you MUST read it! Anyway, in the movie, when the baby girl who has DS is born, the film flashes on her face, her simian creases on her hand and her space between her toes. It was in that moment that I looked at my mom and said "That looks just like Joaquin." My mom looked at me and said "I know, I think you should have him tested." I will never forget that moment.

I called Joaquin's pediatrician a few hours later and left a message with the advice nurse with an urgent request to have Joaquin tested for Mosaic Down syndrome. I got a call back from the nurse saying that the doctor was confused and wanted to see him again in person before he would order the test.

I had thought in my mind that Joaquin must have Mosaic Down syndrome, if anything, only because he had only a few markers and was missing some of the major markers like a heart murmur and low muscle tone. I also thought this could be the only reason why no professional had spotted it until then. Mosaic DS is a rare form of DS that only some cells in the body have the three chromosomes and other cells are normal. I also thought in the back of my mind that maybe he didn't have it and that I was just making this all up.

We went in to see the doctor the next day and he looked at Joaquin and said he didn't see it- he looked for the low set ears which he doesn't have, he looked for the short pinky which he doesn't have, he didn't have the heart murmur, he didn't have the low muscle tone and he didn't have the typical facial features. The doctor said he would order the test only because I would probably worry and wonder if we didn't do the test so he was basically doing it for me and my peace of mind.

We immediately took the baby down to the lab to get his blood drawn. He didn't even flinch or cry as they took his precious blood. And then, the wait began.

For two LONG weeks...

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