A Mother's Hope: World Down Syndrome Day

Today, March 21st, is World Down Syndrome Day.  Chosen because 3/21 signifies the three copies of the 21st chromosome that are responsible for Trisomy 21 (Down syndrome), it is a day when those who love someone with Ds and those that have Ds shout it from the rooftops:   

Down syndrome is natural!  Down syndrome is beautiful!  My life is enhanced by Down syndrome!

These are messages that I, too want to share.  They are things that I've said before and that I hope I convey often.

Yet, as I celebrate my third WDSD, the thought that keeps coming back to me is that for all these pronouncements, for all this awareness, there is still so far to go.

A couple of weeks ago I had an experience so familiar to parents of people with Down syndrome.  Someone in the periphery of my life confessed their admiration for me.  He went on to tell me that there are so many people that would have chosen not to walk this path that I now live; those who would have given it all away.  He went on to talk about how knowing that there are people who "are worse off and who have it harder" inspires him to live his own life fully. 

And I know he meant well.  But that sentiment: that I am one of those that is worse off because Cora is in my life; that stung.

The fact is that Down syndrome is still seen as something to pity.  Those who truly love a person with Ds are still seen as heroes.  Our exclamations that we love our children and that they are worthy of that love is somehow not quite believable, even as they ooh and aaah over the adorable photos of our adorable children. We want the world to know that our loved ones are smart, are funny, are interesting; are in truth, full and incredible human beings.  But sometimes getting this truth out into the world seems like a long hard road.

And that is what I would like to see change.

I know that my child is seen as an other.  I see it on strangers' and acquaintances' faces, though she is only 2 years old.  I know that my child is part of a group of people that are still considered acceptable to marginalize.  Heck, as much as it pains me, I know that many people don't even see her as being fully human, fully worthy to be living this life that she lives.

And in this process of being her mother, I've become something of an other too. I am a Down syndrome mother. 

Strangely, although people-first language is supposed to apply to those with a disability, it does not apply to those who love them or raise them.  For some reason it is still acceptable to define me by the fact that my child has an extra chromosome.  Not simply a mother, but a special needs mother.

As much as I'd love to be just another mother, and as much as I wish that my daughter's own differences didn't set us apart, it still seems that the world just isn't quite there yet.  Until differences are seen as part of the natural and normal web of life, we're not there yet.  Until words that were once meant to describe people like Cora stop being thrown around lightly to describe anything stupid and worthless, we're not there yet.

Sometimes this seems so daunting and so impossible.

But the rest of the time, I am simply and completely blown away by what I am learning as I walk this path.  Despite the challenges, the fears and the worries that I battle now and then, this is a life of joy and of love.  It's a life I wouldn't trade for anything. The lessons I've learned in the past two years have shown me how important it is to widen my focus and learn to see the value and importance of every human being.

And so, as I observe and celebrate today, I hope deep in my heart that in this life I will be witness to a shift in perspective.  I hope that this enormous community effort to raise awareness of people with Down syndrome and others who are differently-abled can help to bring about the understanding that all people are different, and that difference is natural, valuable, necessary and something to appreciate.

I hope that my daughter will be able to live her life in a world that continues to change and evolve and that accepts her as a whole and valuable human being.  I hope to be a part of this change.

World Down Syndrome Day

March 21st is World Down Syndrome Day.   A date chosen to honor, celebrate and raise awareness for individuals with Trisomy 21. 

Last year was the first time I had ever given World Down Syndrome Day a thought.  1 year ago I wrote Cora's birth story, just 9 weeks after I’d ever had much cause to think about Down syndrome at all.  9 weeks after her arrival into my life changed everything.  9 weeks after I had discovered something that I now feel was always destined to be a part of my life.  Something that seemed to fill in the gaps in my life and give me purpose that I realized I had been seeking.

Sometimes I wonder how it is that I was so unaware in the past.  How is it that I had never known someone with Ds, that I don’t remember knowing any children with Ds growing up, that I barely remember even seeing anyone with Ds?   I had to have.  I knew what Ds was on the most general level, but I had never really thought much about it. 

And now, of course, it is everywhere.  Yes, I do seek it out.   I love to be involved with our local group, the Northwest Down Syndrome Association.  I love to read the blogs of other parents with children with Ds.  I love to get together with the handful of local friends we’ve made, linked by our love for someone with an extra 21^st chromosome.  Yes, now I see Down syndrome.  It made my day last week when Cora and I ran into a beautiful little 6 year old girl and her mama.  I looked at her daughter and smiled.  Perhaps her mother wondered why until she looked at Cora and I saw that little spark of recognition.  We both smiled and talked about swimming before they scampered off to the pool while Cora and I got dressed. 

Now I get caught up in stories about Ds in the news, thoughts about education and inclusion, and worries about what the new prenatal testing will do to our communities and to our society.  I am both heartbroken and encouraged by the stories of abandoned children in other countries seeking homes with new forever families.

It may seem odd to suddenly find myself a part of a family that I had never acknowledged or recognized before.  A family consisting of so many backgrounds, faiths, beliefs and stories.  A family that most of us didn’t know we were looking for.

I think that the thing that I am learning since Cora entered my life is how important people with Ds are in the world.  Because it really does seem that there is something bewitching about so many people with 3 copies of the 21^st chromosome.  I know how offensive platitudes about “special” people can be, yet underneath the annoyance I find myself wondering what it is about that extra chromosome that adds something indescribably compelling.  My own exploration of this is admittedly limited, since my daughter is only 14 months old.  But she has something that undoubtedly draws people in, that makes them smile, and that captures hearts.   

As my wise sister Mira has told me, she thinks that that enigmatic quality is really Cora’s survival mechanism and her gift to the world; that her charisma contains something that other typical kids don’t really have.  Perhaps it’s something impossible to put a finger on, yet equally impossible not to recognize.  These are sentiments that I’ve heard echoed many times over by others as they describe their loved ones with Ds.  That there is just something more, something mysterious that enriches lives, compels deeper love, teaches a truer understanding of what is important in life, brings one closer to their true self.  

What is this quality?  As a relative newbie I’m not really qualified to answer that.  But I am certainly excited to watch it unravel in my own life, as I witness Cora maneuver her way through milestones big and small, drawing others in as she goes, leading my own heart on a string.  And I am blessed to be surrounded by so much inspiration and so much joy in this community we’re lucky enough to share.

Join the blog hop for 3/21 by visiting With A Little Moxie or My Stubborn Little Miss to check out other great posts today.

World Down Syndrome Awareness Day- A Birth Story

Today is National Down syndrome Awareness Day.  March 21^st.  3/21.  Trisomy 21. 

It is the first time I have been aware of this day.  And suddenly in my life this day has unbelievable significance.  My love, my girl, my beautiful little Cora Bean was born a little over 9 weeks ago, and stunned us all by being born with Down syndrome.  It was something I had never imagined, had never considered, had never expected could be possible.

But here she is in our lives.  And I have never been more grateful.  We are so blessed by this beautiful little being.  Every time I look at her I can’t believe that I love her more than the last time I looked, but it’s true.  And as much as finding out that she has Ds was an unbelievable shock, I can’t imagine her any other way.  All the challenges we’ve faced, and all the fears that we have with her impending heart surgery and the challenges she will face in her future are still worth what we’ve gained. 

The day Cora was born will probably forever be the happiest and the saddest day of my life.  I had been ready for a baby for a number of years, but the time was finally right for me and Nick to begin our family. Over the years Nick had expressed anxiety over becoming a parent, but knew that eventually it was something he wanted.  And one night, a month before our girl was conceived he told me that he was ready to have a baby.  So we stopped trying to prevent a baby, and started trying to produce a baby.  I know that many people have anxieties over having children.  I had always thought I may have trouble conceiving.  I’m sure most of that was simple anxiety, but I had a medical reason to think that it may be difficult, so I was unspeakably thrilled when we conceived on our second try.  And the fact that my younger sister Erin had conceived 3 days before we did made it all seem especially serendipitous. 

As any expectant mother knows, the first trimester is fraught with worry.  But we made it through the first trimester and the rest of the pregnancy with flying colors.  All was healthy.  We declined screenings and tests, and opted only for the 20 week ultrasound, where we accidentally discovered that our little Bean was a girl. 

I felt pretty well up through the end.  I didn’t miss any work.  I actually left work at 4pm on the day I went into labor when my contractions were about 10 minutes apart.  Still 2-1/2 weeks before my due date, I fully expected to deliver late and was in denial until my contractions were about 5 minutes apart.  We had planned a homebirth with the support and help of an amazing Naturopath Midwife.  With the help of Nick’s massaging hands to help with back labor, and the wonderful birthing tub, I labored through the night and was fully dilated by 7am.  Then came the hard part.  I pushed for 6 hours.  6 hours.  I know that in the hospital I would have had a C-section hours earlier.  And we were pretty darn close to going to the hospital.  But our last resort was vacuum assistance.  I eagerly accepted, and was very happy when Miss  Cora arrived at 1:14 that afternoon, to a mama so exhausted she couldn’t even hold her own baby.

And when my little girl was placed on my belly, blue and covered with vernix, she looked at me with her big blue eyes and blinked.  And I just knew that something wasn’t quite as we expected.  Afraid even to think it, my first thought was, “Oh my God, she looks like she has Down syndrome.”  But I thought that I had to be wrong.

 My memories of the sequence of events after her birth is a little hazy.  I was beyond exhausted, was weak and delirious even.  I do remember that at some point while I was still on the birthing stool, I asked if she looked normal.  I nursed her, and was thrilled that she actually latched on and sucked, although I couldn’t even sit up in bed, I was so sore.  And after both Cora and I were cared for, Mary finally came to us and told us what I will remember for the rest of my life.  She told me that Cora displayed several of the physical characteristics of a chromosomal abnormality, like Down syndrome.  She explained what those characteristics were (the flat bridge of her nose, the slanted eyes, the folds of skin on her eyelids, the folds of skin on her neck, the space between her toes, the crease on her hand) and told us that a blood sample taken from her placenta would tell us for sure.  I was lying there, holding my sweet girl and just thinking that there was no way it could be possible.  I couldn’t cry.  I couldn’t even respond.  I just listened.  And inside my mind was racing.  All I could think was “How could this happen to us?”  I could think of nothing but all the other babies born to all the other mothers that were completely normal.  I thought that she would live with us for the rest of our lives, that I wouldn’t return to work, that she would have to be home schooled, that she would never have a normal life or get married, that our lives would never be what we had expected.  And I was ashamed.  Ashamed to announce to the world that she was born.  Ashamed to tell our families that we had produced a baby that wasn’t “normal.” 

I had been missing calls and texts throughout the day, since my mom, dad and sister knew that I was likely in labor.  But finally when the midwives were leaving I called my own mommy to tell her that Cora had arrived.  And my family cried the tears that I could not.

The 24 hours after our little girl was born are difficult to remember.

But what happened next will be etched forever in my memory.  The next day, Nick reluctantly left us alone to go to the pharmacy.  And then my little girl started to cry and promptly turned blue.  After frantic calls, we decided to wait and watch, but then she did it again.  So off we raced to Legacy Emanuel Hospital, where there is a good NICU, and watched as our little baby girl turned blue again and again, while being prodded and poked by the Children’s ER staff and then the NICU staff.  After an Echo, the cardiologist explained her heart defect, a complete AV canal defect that was causing her cyanotic episodes.  We were told that it could be surgically repaired in a few short months and that the prognosis was good.  And that cardiologically she was ready to go home.  Enter newborn jaundice and feeding issues.  And tears and compromises and difficult decisions.  And 18 days in the NICU, being parents that could only really hold their baby while feeding in order to “let her grow”.  Being parents that went home at night leaving their newborn behind.  Being a mother that didn’t get to breastfeed because it was too hard for her baby, that didn’t get to snuggle up in bed with her newborn, that didn’t get to gently recover from the rigors of childbirth, that didn’t get to have a “typical newborn experience.”  I did cry for myself for a few days, resentful of all the well-meaning, yet somehow still insensitive assurances.  We stayed in the NICU all day, every day she was there.  I am sure we annoyed the nurses and doctors.  

And after 18 days, we got to take our girl home, feeding tube and all.

But it didn’t take long to be thankful.  Thankful for our girl.  She is so easy to love.  So sweet, so beautiful, so incredible.  We really can’t imagine her any other way.

And in a way, I think we were lucky that her heart condition came to the forefront.  Because then Down syndrome didn’t seem so bad.  And then her hospital stay caused us anguish.  And again, Down syndrome didn’t seem so bad.

And now, she is home and she is our full-time daughter, and we are her parents.  And we love her beyond belief.  And Down syndrome indeed doesn’t seem so bad.

She is going to have open heart surgery in the very near future.  And that is very scary yet at the same time we can’t wait.  We can’t wait until she is not hindered by the condition of her heart.  We can’t wait for her to be able to eat well and start developing well and start all the therapies that she will need to encourage her development.

And in the meantime we deal with her Down syndrome every day.  I read, e-mail and talk to other parents of babies with Ds. I plan for her therapy appointments, read about the help we will need to give her, and talk to all my friends and family about my thoughts and my feelings about having a child with Ds. It really is the elephant in the room.  No one talks about it until I do.  And I understand that.  I wouldn’t know what to say either.  I had never even met someone with Ds until Cora was born.

But now I have.  And now I am aware.  Intimately aware.  Our little Bean is only 9 weeks old, but already I can’t even imagine how I ever existed without her.  It’s like I spent my whole life waiting only for her.  Like I am only now myself now that she is here with me.  That she is the part of me that has always been missing. 

And I know that she will bring challenges.  But what I unequivocally know in every bone in my body and with every breath I take, is that she is my baby, my girl, that she was born to be with me, and that I have never loved anything so very much.  And I am so thankful for her.

So now I am aware of Ds.  Now I am thankful , even, for Ds.  Thankful for all that my girl is, and all that she brings to the world.  My beautiful little girl.  I love her so very much.

Happy 3/21 to us.