Tuesday, October 23, 2012

The future of a family

Our daughters are very inquisitive little creatures.  They're always asking how things work, why they work, what their purpose is and so on.  The other evening, Ella asked Kevin where Sam's middle name came from.  "Jon" is my dad's, my brother's, Kevin's and his dad's middle name.  Needless to say, it was a no brainer that the name Jon should be passed on to our son.  But that wasn't enough for Ella, so she asked where the name came from originally.

Kevin is and always has been fascinated by family history.  He launched into a lengthy and detailed description of the first Jon (Kevin's great great grandfather) who came over from Sweden to build a new life in America.  He went on down the lineage of our family until he reached Sam.  And Ella, who doesn't miss a beat, says "and Sam can pass the name onto his kids someday."

Well Ella, that may not be the case.  At the risk of stating the obvious, individuals with Down syndrome don't usually have children of their own.  First, pregnancy for a woman with Down syndrome can be very complicated because of heart related problems associated with Down syndrome and that's IF she can become pregnant in the first place.  Typically, fertility in men and women with Down syndrome is greatly reduced - some believe males with Down syndrome are sterile, although it has been reported that two men with Down syndrome have fathered children.  There is also a 50% chance that a child conceived by adults who have Down syndrome would also have Down syndrome, meaning that the pregnancy would often end in miscarriage.  Needless to say, raising any child is a huge task and the same is true for a parent who has Down syndrome.  Supporting a family could be difficult for an individual with Down syndrome.

With that said, Sam having children is not something that we are anxiously awaiting.  That's not to say that we wouldn't want him to have children, because of course that chapter in the grand plan is a long ways out yet.  However, we have accepted the unlikelihood of Sam giving us grandchildren.  Does that sadden me?  Yes of course, because the gift of a child is quite possibly the greatest gift there is.

Now, try to explain this to a nine year old.  

In my early adult years, I experienced some extreme anxiety and panic attacks.  I've said many times that I'm lucky I didn't scare Kevin away with my constant state of fear and panic.  Unfortunately, I think I've passed a little anxiety on to my children.  When Kevin was trying to explain this whole "Sam-probably-won't-have-kids-and-pass-on-the-family-name" thing to Ella, she went into a state of panic.  She was hysterical and ended completely shutting down.  We let her be for a few minutes and then I tried to talk to her, and it really didn't go so well.  Between her sobs, she choked out phrases like "our family is going to end" - "our family is going to disappear" - "I hate Down syndrome" - "it's not fair" and the worst, "it's Sam's fault!"

My heart broke.  When I've had this conversation with other adults, it's easy to crack jokes and say things like "it's ok, the girls will have lots of babies and then Sam will be 'Uncle Sam'!"  While that gets a good laugh, it still hurts on the inside.

There are most certainly things in life that will be different for Sam because he has Down syndrome, and there are most certainly things in our lives as his parents that will be different as well.  But different isn't always a bad thing.  Our family will have the privilege of experiencing things that other families don't - some good, and some bad - but it all makes us just a bit stronger in the end.

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