About Down syndrome.

It’s the middle of October and I’m feeling guilty.

See, October is National Down Syndrome Awareness month.  And I, my friends have not mentioned it once.  This doesn’t mean that Down syndrome hasn’t been on my mind.  I for one am well aware of Down syndrome.

But there are thousands, millions {billions?} of people who aren’t aware of {don’t care about?} Down syndrome.  And as a mother it’s my personal duty to make sure every last person knows about Down syndrome.  Right?

Yes.  And I want to.  I have a lot to say on the subject.  Initially the words come fast and furious then the emotions quickly follow.  I become frustrated, angry.  I feel helpless.  Because swimming up-stream is hard work.  It makes you tire easily.  And the stream is only growing and gaining speed everyday.

The stream is filled with “experts” telling expectant parents that their not-yet-born baby with Down syndrome will live a life filled with suffering.

I wonder how many of these “experts” the ones who are giving expectant parents an “unbiased” opinion, actually know someone with Down syndrome?  Do they have a child with Down syndrome?  A sibling?  Could it be that their “guesses” at what life is like with Down syndrome are so convincing that now 93% of expecting parents terminate after receiving a diagnosis?

There are other “experts” in the stream.  They {in their all-knowing, but don’t actually have or know a child/adult with Down syndrome} proclaim that this child will indeed be a burden.  Friends and neighbors might also pipe in because they “know someone” who has a cousin, who has some sort of disability and it sure seems like a burden for that family.

Are you following this fuzzy logic?  Because most are.  Determining the value of a life based on an assumption.

The “experts” have proclaimed that our children have no value in the world.  That they will never live all full life.

I wonder how these same narrow-minded “experts” manage to live a full life when they themselves are open to only a small portion of what life has to offer.

I know that I can’t compete with the “experts”.  Clearly they must know something I don’t.

But I do know what it is like to be a mother to a son with Down syndrome.  I know that I am no different from any other mother.  My heart does not love based on ability.  A child is a child.

I have witnessed first-hand the effects of a developmental disability on siblings.  It is beautiful.  It is patient.  It is kind.  Love in the purest form.

I know that I am not an exceptional parent.  I am not an exception to the rule; living out a happy life in spite of the fact that my son is “developmentally delayed.”  I believe that our life experiences are what we make of them.  I choose to see the glass half-full, always have and always will.  And here’s a little secret for you – a diagnosis, Down syndrome or otherwise – won’t change that.  Sure, there is the icky stuff in-between, the initial shock and such.  Let’s just call it life.  But you get to choose.  Half-full or half-empty.

When I first started this blog, I was swimming in a sea of Down syndrome.  I had been tossed to the deep end and was trying to find my footing.  As the days passed and entries were made, I noticed a progression from those early days when I was trying to educate myself and others around us on Down syndrome to today, a place where contentment resides.  Where Down syndrome is most certainly a part of our lives, but not the driving force I thought it would be.

Looking back through my posts I see a mother who was searching – trying gain her baring in a world that had completely shifted.  Rediscovering a faith that had been floundering.  Discovering and admitting my own weaknesses.  Strengthening our growing little family.  Meeting and making new friends.  And just like our days, this little blog too has ebbed and flowed with the state of our life.  There have been dark moments that I chose to share hoping that it might bring comfort to another family on this journey.  Happily, we have been blessed with an abundance of joyful moments and have shared those stories and photos of the beauty that is our life.

And yes, there are times when I feel a bit exposed.  As in, am I seriously telling all of the internet this? sort of way.  But I always come back to this:  Swimming upstream isn’t easy.  But with each photo, story, shared struggle or joy, I am raising awareness of Down syndrome.

In my own little way I am shouting out to the world: This is what Down syndrome looks like!  It isn’t all therapy, IEPS and doctor’s appointments.  We are not suffering.  Quite the opposite actually.  And isn’t our family beautiful?  Yeah, and we’re happy too.

People see what they want to see.

I see love.  Light.  Joy.  A full life.

I guess the words still do come easily.  So yes, I will write a bit about Down syndrome this month.

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13 thoughts on “About Down syndrome.

  1. beautifully said… the “experts” have nothing on you, Mama. What we your readers/lurkers/friends see is a child who is not only thriving in his life, but who is enriching the lives of all those who know him or know of him. You don’t have to write about Down Syndrome… I’d rather know about a handsome little boy whose making great use of the life God gave him and if he happens to have DS, well…

    And bless you for being so open, so candid about the good and the bad, the uncertainty and the assurance.

  2. That was beautiful. And, thanks for sharing your thoughts with the rest of us. I too have learned that life does not have to be perfect to be wonderful.

  3. Excellent pic and post!
    I think this was on Charlie’s birth announcement (?)–
    James 1: 17- Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. 18 He chose to give us birth through the word of truth, that we might be a kind of firstfruits of all he created.

    So true! Loves

    • Good memory Diana! Yes, that is the scripture that we used on Charlie’s birth announcement. “Every good and perfect gift is from above…” The most amazing thing about that choice is that I had the announcements designed before Charlie was born…before I knew of our new journey…not that HE was surprised.

  4. I have been subscribed to your blog for awhile and thought I should comment about how much I like to read it. Thank you for putting your honesty out into the world for strangers (me!) to read and grow from. I know that if I ever have/adopt a child with a disability I will be able to think back to reading your posts and how you made a life out of what was given you, a good life. Thank you for sharing your family’s journey.

  5. Sweet post, we must remember that advocacy is also in simple living. Add a postscript sentence or banner on the side if you feel better but there are plenty of people doing direct outreach. You do what you want.

    But you write beautifully so a bit of outreach is good–any month that mood strikes ya!! ;)

  6. Thank you for sharing such a beautiful “synopsis” on Downs. I too, have a 4 year old son with Down Syndrome and he is the absolute joy of our mid-life. He was also diagnosed with Leukemia 2 years ago and is doing pretty well. Your writing was inspirational and well said. I forwarded it to family & friends and have gotten touching responses. Thank you again!

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