Coming to terms with Down syndrome wasn’t actually that hard for me when my son, Owen, was born.  We were told in the delivery room that it was suspected and that was confirmed a couple days later after a genetic test and karotype.  I cried a bit the first evening after we were told, but then I grabbed my laptop and started scouring the ‘net, looking for anything about Down syndrome.

I read and read to my eyes felt like they would pop out of my head.  The best reading came in the form of blogs from other parents who had a head start on this road.  Those stories were very important to me and gave me some strength and confidence that I wouldn’t be alone; there were other families like mine.

For me, there wasn’t much to grieve.  I didn’t really have a preconceived notion about who Owen was.  I was never even sure what he would look like.  I remember for many months before he arrived trying to imagine his face, his hair, his little body……but all I could come up with a stock image of a baby, looking much like the one on Gerber or Pampers ads.  Many people have said that they needed to grieve the child they were expecting.  That didn’t happen for me because I just wasn’t expecting a particular person.

Instead I went into my “get educated and get on the horn” mode, which is what I do whenever something happens that seems out of the ordinary.  I’m what I would consider to be a very logical, rational person.  That’s not to say that I’m not emotional because I am, but when I need to tackle something, I know that my emotions are just going to get in the way.  So I chose to put on my other hat and got to work.  I wanted to figure out what I needed to do in order to make Owen successful.  I remember reading the “Babies with Down Syndrome” book from cover to cover.  I ran out to Barnes and Noble and pulled just about every “Skills” book off the shelf–the Gross Motor one was like my bible for the first 2 years of O’s life!

As life moved on, I found that the biggest obstacle for Owen is his speech.  I don’t know why, but I just figured he would talk.  When words didn’t come by the time he was 2 and babbling was a rarity, I just knew something wasn’t right.  Now after 3 years of hard work, 2 private speech therapists and an apraxia diagnosis, we are just now getting some sounds and one word (UP!).

And this is where I struggle so hard.  Speech.  It just isn’t there.  I don’t know if it ever will be there, either.  I desperately want to hear his voice.  I want to hear “mama” so badly it hurts.  I want him to be able to communicate with his peers in school and interact with other kids at the park or the pool.  I can see he wants to do that too and he gets frustrated if he’s trying to tell someone something and they don’t understand.  I want him expressing himself in a positive way, not a “I just pinched you to get your attention” kind of way.

It gets really difficult when I’m in a grocery store and I hear a baby–an infant–babbling and I realize, wow, my kid is 5 years old and he barely makes the sounds that a 6 month old child makes.  And then I’m the bumbling lady crying in the canned goods aisle because when that moment hits, it doesn’t matter where you are, the waterworks are going to turn on.

So I struggle to come to terms with Owen’s speech difficulties and the real unknown about it all.  I would like to say I have completely embraced it, but that wouldn’t be true.  I am happy for my friends whose children are making awesome progress with their speech, but that doesn’t mean that I’m not sad for my own child.   I’ve accepted that Owen will have speech issues probably for many years to come.  But I think it’s the uncertainty that I have such a hard time coming to terms with–will this go on for 5 more years?  10?  Lifetime?  And maybe that’s the logical person in me demanding an answer–why can’t you just give me a time frame here?!

I am, like many people, a work in progress.  Each day I learn to understand a little more about Owen’s struggles and how I can help him work around them to be successful.  Therefore I am constantly mindful of one of my favorite quotes (thank you, Mr. Frederick Douglass!):  “If there is no struggle, there is no progress.”

PLEASE NOTE:  This post is personal.  In no way does it negate anyone else’s experience–this is simply my own.

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Stephanie is a mother, teacher, and a writer. She has been featured at Down Syndrome Daily, Down Syndrome Blogs, The Mighty, and the IDSC. Stephanie has been published in a special needs anthology and has edited two books, a children’s book and an E-book, both about life with Down syndrome. You can read more about her family at www.thesumulong3.blogspot.com.