On Life

Prior to our adoption I read with interest about the new prenatal testing to detect Down Syndrome earlier in pregnancy.  My interest was more intellectual than anything at that point.  While doing the paperwork end of adoption our son was still a picture, an idea, not yet a little boy in my arms.  I sat today rocking him to sleep for his nap and prenatal testing is far more personal.  It is talked about as a way to help parents prepare for parenting a child with Down Syndrome.  To prepare for therapies and possible medical treatments that would be needed.  Preparation is good, but the statistics show that a prenatal diagnosis of Down Syndrome is overwhelmingly not used for preparation, but rather termination.  Up to 80-90% of the time the parents choose abortion.  As I watch my son these first weeks home, those numbers strike a deep chord.  The statistics are about the same in Hong Kong, his birth country.  His mother did not get prenatal testing and for that I am eternally grateful.  No, I do not know the choice she would have made, but I know, statistically speaking, his chance of surviving pregnancy had she known would have only been 10-20%.  This is not, for me, just about the choice a woman makes, but also about the life of my son and children like him.  I could be easily labeled by some as judgmental and insensitive, but what judgement is being made by these statistics.  A judgement that a life with DS is a life not worth living in the eyes of so many and yet a survey done by Dr. Brian Skotko at Massachusetts General Hospital showed that "nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they looked."  Perhaps we could learn something from people with DS.  As I soak up the time I have with my little boy, I am grieving society's judgement that the obvious and understandable outcome of discovering a child has DS prenatally is termination.  Perhaps it is time we as a society examine the judgements we make about living life with disability.


PS - Here are two other surveys of parents and siblings of people with Down Syndrome by Dr. Brian Skotko.

Having a Son or Daughter With Down Syndrome: Perspectives From Mothers and Fathers
Having a Brother or Sister with Down Syndrome: Perspectives From Siblings

Welcome Home

We are home from Hong Kong with our little son! :)  I can not express how good it feels to say that after 18 months of paperwork.  There's still some paperwork to be done, but we can snuggle our little guy first and then get it done.

The trip over went well.  Our oldest son traveled with us and did a great job.  He struggled with trying new foods, but we anticipated that and brought along things for him to eat.  Sunday, the three of us went to Hong Kong Disneyland.  It's been awhile since I've been to Disneyland and it was every bit as fun as I remember.  It's not nearly as big there, so was easily seen in a day.  Jet lag set in mid afternoon, so we boarded the Disney train to catch the MTR (subway system) back to the hotel.

Monday morning we met the social worker and she took us to the foster home.  I wasn't sure how he'd react, so just planned to take things slowly, but the first thing I walked in the door and he wanted to be picked up.  Then my hubby walked in and my little guy wouldn't take his eyes off of Daddy.  After a few minutes he decided he wanted Daddy to hold him and quickly began inspecting his goatee.  That was quite interesting for a few days.  His foster mother got out the photo album we sent with pictures of our family.  Our oldest son was sitting beside him and when he got to a picture of his big brother he pointed to the picture and then poked his big brother.  We stayed at the foster home for several hours and then took him out with the social worker to lunch.  Since Daddy seemed to be the most interesting, Daddy carried him out.  Leaving his foster home was not easy.  Daddy said he was sobbing.  It was also about nap time, so that probably didn't help, but he finally went to sleep and slept most of the time we were out.

Tuesday we went back to the foster family's apartment to pick him up and bring him back to the hotel room.  The social worker wanted him to see where he would be staying before he stayed over night.  Again, it was nap time, so he slept most of our time together.

Wednesday we again boarded the double decker bus for the hour long trip to the foster family's apartment to meet with another social worker to sign papers and bring him back to stay with us the rest of our time.  When we walked in the door he was on the couch across the room.  He hopped off immediately and came walking over to us with a big grin.  One of his foster sister's is in her 20's and was there that day.  She had a particularly hard time saying goodbye and his foster mother did as well once it was time to leave.  Although adoption is a wonderful thing, there is loss involved and it is difficult to see that loss.  I am so grateful to his foster family for the love and care they gave him for most of his life.

We had originally planned to leave on Saturday, but ticket prices were crazy expensive that day, so we stayed until Sunday.  The rest of our time with him went well.  He slept like a rock, well, a very wiggly rock.  We wondered how eating would go, but he's not a very picky eater and he enjoyed playing with us.  Wednesday evening I taught him how to sign "more" and Friday morning he grabbed a box of toddler snacks, sat down and signed "more."

We are home now and slowly getting over jet lag.  He's had a harder time sleeping here in the States, which I think is in part due to jet lag, but also to all the changes he's had in the past week.  There's different sights, sounds, smells and tastes and it's a lot to take in for anyone.  He loves playing with his big brothers and sisters.  Today they were rolling on the floor together and afterwards our second oldest told me that he's so glad we adopted him.  Our little girl has been doing pretty well him, but I anticipate she'll have the hardest time adjusting as she's no longer the baby.  He thinks her pacificer is quite funny and enjoys pulling it out.  Most of the time she thinks it's a fun game until bed time when she's tired and had enough.  Our oldest has enjoyed playing with him and getting to carry him around.

It's only been a little over a week since we've had him and we are still trying to prepare for a time that he'll realize that he's not going back and morn what he's lost, but this initial transition has gone well.  Much better than I expected.  It takes him a few minutes before he's sure his eyes will open after waking up, but once he's awake a huge grin spreads across is face.  He toddles around keeping himself occupied with all the fun toys on the ground and things to be discovered on the table tops (good motivation to keep the table clean!).  He wants Mama to hold him when he not sure what's going on and perhaps it's wishful thinking but "Mama" has been uttered several times.  At meal time when I ask if he wants more he giggles a little and that infectious smile spreads across his face as he claps his hands.  He giggles in delight as he splashes in the tub and when the day is done he melts into Mama's arms as I rock him to sleep.  My heart is full having all my kids home with me.