Saturday, October 6, 2012

How He Changed Our Life.

This month is Down Syndrome awareness month and I'd like to write a little about our foster son. In the fall of 2010,  while living and working in China, we unexpectedly became foster parents to a little baby with Down Syndrome.  He was malnourished and needed one on one care. I don't write much about him anymore because he really isn't ours anymore.  He belongs to his future family and with the complicated adoption process going on, I don't want to write anything that would make it too complicated.   Leaving him behind in China was one of the hardest things we have ever done. We still hear about him and get pictures and sometimes even SKYPE.  We make sure his ayi gets paid and he has clothes. He is thriving with his ayi, being loved and cared for while he waits.
He is a part of our story and we are a part of his.  His being in our life changed us forever. Our being in his life changed his life and gave him a future.  The mutual impact is profound. We miss him everyday.
So what did we learn about Down Syndrome while we had him?
We learned that Down Syndrome is about an extra chromosome in his cells.  We learned that the extra chromosome give him more widely spaced eyes, lower ears, a sweet round tummy and rather poor posture. We learned that  Down Syndrome gave him low muscle tone and that made him slower to crawl, sit, stand and walk.  We learned all of those things so that we could strategize his care.  Not all of his issues came from having Down Syndrome but it was a good starting place.  We consulted with a speech pathologist friend about things to do to strengthen his swallow reflex.  I talked to my friend Gillian who has two children with Down Syndrome-she was a wealth of help and information for me.
We learned that while he has Down Syndrome, he isn't Down Syndrome.  He is very much himself-lively, funny, a book lover and cuddler.  After a while, we didn't really think that much about it except for when we were in public and people would ask.  There is a famous conductor in China who has a son with Down Syndrome and many people knew about him.  That was always a starting point.
Because of Down Syndrome and our little guy, we learned about love.  That's the biggest thing.  Our hearts were enlarged and our spirits enriched.  He gave us eyes to see. We are forever changed.
From the time we got him and he looked like this.

(Yes, we were trying to make up for lost time with all the black and white stuff! He is nine months in this picture and black and white stuff is usually for very young babies)

To when he started to chunk up and looked like this about a month after we got him.  This is one of my favorite pictures.

To when he went in the hospital with severe pneumonia and low oxygen...oh what a hard five days that was.

To our first family picture at Christmas.

To a second Christmas together.

To the playing with the phone, the cars, the trucks, the books, the computer.

To walking him at the river near our home.  People would stare at us as they couldn't quite figure out what our relationship to him was. Grandparents?  Adoptive parents?  If Elisabeth was with us, it lead to even more confusion.

To playing with his beloved big sister.

To his heroic ayi who has gone against her culture to love a special needs little guy.

From all of this!  He is no longer a baby-truly a little boy!  He walks and runs and turns in circles.  It's amazing.

This is a well loved little boy, both by people geographically close to him and many who know about him through my Walking to China blog.  Thank you for loving him and hoping for him. I am so thankful for the many who walked this part of his journey.
Last summer I was working for a few weeks at Portland State.  I would often see a young woman with Down Syndrome walking around. She was nicely dressed and clearly had a job there.  Every time I saw her, my heart welled up with tears.  This is a young woman with a hope and a future that is determined by what she can do, not just her limitations.
That is what we want for our foster son ...and the many who are like him.  We want them valued because of who they are-intrinsically valuable human beings.


  1. Love this. Amazing, how much he changed. Really, I am amazed .... xo

  2. You gave him what he needed most at a time when he needed it the most. Your gift has clearly been blessed and multiplied. This little lamb is precious to Jesus and to you and to so many of us. Thank you and bless you dear ones.

  3. Thank you for sharing the little boy we all came to know and love!!! So does he have a family in pursuit of him?

  4. Valuable human beings bearing the image of the Almighty Creator!!