Wednesday, October 30, 2013

What it Means

Reagan has Down syndrome.  We all know that by now right? ;)  But what does that really mean?  Technically speaking it means that she has Trisomy 21...that is three copies of her 21st chromosome.  Instead of the 46 chromosomes (23 pairs) she has 47...shoulda known that a kid born to musical parents might have a triplet thrown in just to keep it interesting lol.  Medically speaking that extra copy can contribute to a long list of possible side effects.  Some of these Reagan has and some not.  Her vision seems un-affected.  Her hearing...not so good.  Her thyroid is fine, but her heart was broken till her amazing surgeon fixed it.
  At three years old she is pretty much past the big scary possibility of leukemia.  She does have some delays in development, but she is working hard.  These are facts.  But they do not capture the heart of what it really means to her and to us that she has Down syndrome.  It means that she has an extra big heart that only sees the best in people.  It means that she has a little extra drive to accomplish those things that are hard for her where others might give up.  It means that she has something magnetic in her personality that shines through her smile and draws everyone...and I mean everyone she meets, and brightens their day.
 I don't know how many times I've had someone (who can't tell she has Down syndrome) tell me that they don't know what it is about her but she is just the sweetest thing and she makes them smile.  Talk about a purpose in life....who cares if you can't do Calculus if you can just brighten the world by being alive!  It means that she has opened our eyes to what it means to look beyond our predictable plans for our lives and see the gift of the unexpected.  I can't even imagine what life would be like if I had the baby I expected instead of seems like it would be boring and flat and stale.  And I think about the people who have so enriched our lives that we would never have met (both in real life and virtually).
 Some of Reagan's chromosomally enhanced influence is tangible and easy enough to list.  But some of it is just a feeling and knowing how much better off we are with her that I can't quite ever put my finger on or express in words, but I know that I am so grateful to be one of the blessed ones to have a child with Down syndrome in my life.  We are coming to a close on October now and the task of raising awareness daily is ending, but those of us whose lives have been touched by Reagan and her "triplet" will always be if you have a second, tell me what it means to you...

No comments: