Life with Down Syndrome

Life with Down syndrome . . . .that is certainly something I can't put into words.  And it's not because of what you think, which is that it evokes so many feelings.  While that is true, the main reason I can't put this into words is because the medical side of this journey put Down syndrome in the shadows.  It was put on the back burner.  A topic that didn't matter because we were dealing with life or death.  Well, now it's being placed in the front and all the questions are surfacing . . . . When will he walk & talk?  How much of what we are saying does he understand?  And then even more prominent are the questions about his future . . . Will he do well in school?  Will he have friends?  How will his delays effect his future?  I guess this is all good considering up until this point our main question was "Is he going to live".

It never dawned on me what the word "delay" truly means.  When you read the words in Down syndrome books . . . "he will do all the things any other child does, just at his own pace" it seems so simple and acceptable.  Ok, my son will accomplish reading and talking and simple acts of playing.  It's just going to take him a little while longer to learn how to do these things.  Well, viewing the whole picture like that is entirely different than actually experiencing it.  It's like a person apologizing for being late because they were delayed in traffic.  You hear that and you picture the person sitting in traffic and eventually making it to you.  No big deal right?  Well, imagine that person who was stuck in the traffic.  The anxiety they were feeling over being late.  The other cars and obstacles around them that made it difficult to get to their destination.  And the delay itself that made them feel as if the end was never going to happen.  It may have only been 15 minutes, but at the time it felt like forever.  That's what this feels like. Therapists tell us he'll get it and I know he'll get it.  But waiting and watching  him learn such simple tasks as just putting the block in the bucket.  Well, it's just exhausting.  Now I'm giving the brutal truth of the matter.  It sounds harsh, but it's the truth.  Yes, he's so smart and yes, I jump up and down and cheer for him with every block that ends up in that bucket.  But just like the delay in the traffic, you move a couple inches and then stop for a while.  It's tiring and very frustrating at times.  But I know he'll get there and that 's what it's all about.  Patience.  Lots of patience mixed with knowing in my heart that he'll get it.  And then of course, the biggest of them all, imagining what it must be like for him.  If I think it's hard and tiresome to watch him struggle and wish he would just get to that next step, imagine how he must feel.

But I do cheer for him and wow the feeling you get when he does accomplish these "simple" tasks.  It's like witnessing a miracle!  It's such a great feeling.  He brings something to my world that is so unique and warm that I feel sorry for others who don't have it in their lives.  It's like "wow, how do people go through life without experiencing this?!"  It truly is one heck of a feeling.  And when I take him out in public . . . celebrity.  That's all I have to say about that.  He steals the show!  He's like this little superstar saying "hi" in his breathy little voice because he can't quite pronounce the word, to those we pass.  He's so cute and happy and all he does is smile.  He's a dream come true!

A Photo Montage of Down Syndrome

Down Syndrome of Louisville

Kosair Children's Hospital

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