Tuesday, February 25, 2014

Gracious Wisdom: A perspective on having a sibling with Down syndrome

A few months ago, Emily stole a photo of Ellie for her blog.  Okay, technically she asked my permission and this spurred a series of email conversations between the two of us.  Emily is a biomedical engineering student (a smart cookie!) who keeps her plate full by babysitting children with special needs who she affectionately refers to as her "main squeezes" and volunteering for the Special Olympics.  Did I mention that she also has a beautiful little sister with Down syndrome? Seeing as I have no experience in growing up with a sibling rocking an extra chromosome, I asked Emily to write a post about her life growing up with her sister Sophie.  Emily's writing is full of raw honesty.  You can learn more about Emily, her sister, and her "main squeezes" at her blog.

Gracious Wisdom

Last night, I turned on Godspeed by the Dixie Chicks and cried.  It was one of those lonely, exhausted cries that come at the realization that nothing that will fix the thing that is broken. There was nothing to do after but take a hot shower and sleep.

Yesterday, I was reminded that no matter how hard I work, how much I give to others, how seemingly perfect I am, I cannot fix my sister.  Sometimes I forget – I don’t see her or think of her as a kid with a disability – and reminders always come in the form of she-will-never-do-such-and-such. Such moments of clarity are crushing and empty.   In truth, even when I am at my happiest and most fulfilled, there is still a piece of my heart that is broken.   I would give my life if it meant my sister could have all of the opportunities and abilities that I have had.  I want to make her happy.  I want to see her loved.  I want to fix her.

I love her with every inch of my being.

I have three very clear memories of my mother’s pregnancy with my youngest sister.

The first was the evening that I found out we would be having another baby.  I was in my bedroom.  I was eight years old.  Mom and Dad came in and tacked an ultrasound picture on my corkboard. All I remember is the little picture and thinking that it might be cool to have a brother.

The second was a nightmare.  Rather, a series of repeated nightmares.  My mother had a miscarriage.  The baby died.  I was terrified, and remember feeling sure that the dreams would come true.   I felt distinct terror at the possibility of losing my unborn sister.

The third was the day that I found out that there was something wrong.  This is the clearest memory of all others from my childhood.  It stands out like a huge pine tree in the middle of a flat plain.  I am so very grateful for this, because I believe it is the single most defining moment in my life thus far.

My parents asked me to take a walk with them.  We didn’t go far, just to the stop sign at the end of our cul-de-sac.  They stopped and looked at me.  “There’s something we have to tell you about the baby.” I started crying before the sentence was over.  She was dead.  Just like in my nightmares, my little sister was stripped from life and I would never have her.  I was sobbing before my parents even began to tell me what was wrong.

When we walked back to the house, relief was already spreading through me.  In fact, I’ll admit that I was thrilled. I had no idea what Down syndrome was.  My parents were upset and had cried as they told me, but extra chromosome or not, I was getting a sister.   She was alive and that was the most important part.

I’ve never told anyone that I want to fix her.   I share it now because I want to be as honest and real as possible in this post.   But I also love my youngest sister exactly the way she is.  She is the center of my universe, and I think that that started even before she was born.  The fact that I was relieved upon first hearing her diagnosis, that I didn’t care how she came out as long as she was alive, continues to strongly contribute to the way I think about her and her disability.  I cannot fix her, but I am unbelievably blessed and grateful to even have her.

We picked her name after we got the diagnosis.  After much family discussion and perusal of baby name books, Mom and Dad ended on Sophie Anne.  It means gracious wisdom.

Sophie was born a day before my half-birthday.  I threw up in the car when our grandparents drove me and my other sister, Mari, there.  My dad did Tai Chi outside the hospital. She went straight into surgery within 24 hours.  She was in the NICU for six weeks.  There were tubes everywhere.  We celebrated her first poop.  Mari and I built a mini NICU in our basement, with babydolls covered in real tubes, which were attached with real medical adhesive, all donated to the cause by NICU nurses.  The lite-brite became an ECG monitor.  I think it was our way of making sense of the situation.  I had several friends with new siblings.  All of them came home within the first few days.  Mine didn’t.

The rest of my childhood was marked by therapy appointments, IEPs, and Buddy Walks.  The vague memories that I have are overwhelmingly positive.  My sisters and I were close, my parents were involved and supportive, and Sophie united us all against the rest-of-the-world-that-didn’t-understand.  I know that my parents were very stressed, but I didn’t realize that when I was younger.  I think that speaks volumes to how incredible both of them are.   It takes a very special person to parent a child with special needs and two other siblings and have them all turn out as happy, loving, and resilient as we all are.

How has Sophie affected my life?  Sophie has become my life.  So many of my actions, and so much of my personality has been beautifully molded by the bond I have with her.  I wouldn’t have it any other way.  My passions, my future goals, and my current projects and priorities are so embedded in my love for her and all individuals with disabilities.  While in college, I have pursued opportunities to work on projects involving disability rights and access to services, worked with a multitude of children and adults with special needs in various settings, and promoted equality and acceptance for everyone.  After I graduate from college, I plan to go on to pursue a graduate degree in Occupational Therapy and plan to work in pediatric settings with kids of all disabilities.  Being an OT means that I will work with kids to allow them to be as independent as possible, and to pursue fulfilling, meaningful relationships, jobs, and hobbies throughout their life.  Right now, I’m working on becoming involved in the National Down Syndrome Society’s advocacy program, which promotes legislation, like the ABLE Act, that supports social programs and rights for people with Down syndrome and all other disabilities.

But I also learned some hard truths about what is often an unfair world at a young age.  Why do bad things happen to good people?   Why can’t I have a normal family? Why can’t I fix my sister?

I don’t think I’ve ever shared with anyone how truly painful the experience of loving someone with mental or physical limitations can be.  I cannot escape this reality, and I am also powerless to make her ‘better’.  My friends don’t really know that Sophie is struggling in school. Math is very, very hard.  She doesn’t like to read.  She is also almost exclusively in a Special Ed classroom now.  I say, “My sister has Down syndrome – but she’s very high functioning!”  Sophie is bright in many ways, and she is high-functioning, but she also struggles.  A lot.  And I am terrified to admit that to anyone because it will make it real. I always had hoped that Sophie would be the exception to the rule.  She would break down all of life’s barriers, graduate from a 4-year college, become a self-advocate for change and a leader in disability rights.   Maybe she still will.  But she will always have Down syndrome, and I am only just now beginning to understand what that means.

In conclusion, a note to my fellow ‘Sibs’:

The other day, I held the little sister of a boy with regressive autism in my arms.  She is five and I see so much of myself in her.  The patience, compassion and love that she has not only for her older brother, but for all of his classmates, shows wisdom and maturity well beyond her years.  Selfless as she is, I see that she is lonely and always looking for more attention at home.  I held her because the weight of that loneliness was too much that day.  She was so sad.  I told her that I loved her and that I understood.  But the most important thing was just that I took time to hold her.

Being a sibling is hard.  It can often be beautiful and rewarding, but is also isolating and painful.  I think that it defines us, unites us, and makes us into some of the strongest and most compassionate people there are.  I have a deep, protective love for each of you, whether or not we have ever met or ever will.  You are important, valuable, and part of one of the most accepting communities there is.

Winston Churchill once said, “Never give in, never, never, never, in nothing great or small, large or petty – never give in except to convictions of honor and good sense.  Never yield to force.  Never yield to the apparently overwhelming might of the enemy.”  Life will be overwhelmingly difficult and sad sometimes, but you will emerge shining all the brighter!  Never give up.

Here’s a short video compilation I put together of Sophie: 


  1. I am sitting here bawling. Thank you so much for sharing your beautiful honest heart. Your love for Sophie is awesome, and so is she. I hope my typical sons grow up to be like you.

  2. I really, really appreciate your honesty, Emily. I'm sure writing this post was not easy for you. But I can see the love you have for your sister and it is amazing. You are both lucky to have each other. I wish you the best of luck on your journey to becoming an OT; you will do amazing work.

  3. Emily...as a stepmom of a down syndrome son, i know the life you have lived and i salute your honesty. always know that it is ok to feel all the emotions that go along with coping with down syndrome. enjoy the good...acknowledge the bad ... as both exist. Sophie (nor any of us) can be fixed, but she has far more potential than anyone would imagine. look closely for her gift in life, as it is there. once you identify it....nurture it. never believe the myth..."oh thats the way down syndrome people are"...any more than you can lump any/other
    catagory of people into one scenario. go to www.companyddancers.org and see what my son and his dance group have accomplished when you find the gifts, nurture them, and then realize theres really nothing you'd want to fix. hard? of course it is! Normal as most folks know it? no... not at all. but i came to the conclusion a long time ago when people question why God 'let' this happen is that God is perfectly happy with all his creation...even down syndrome kids... and that it's more about how the rest of us react to it. and i think you are reacting just perfectly. you are honest, open and focused. and while you totally sensed the need to hold the little girl to help her...dont forget to let others hold you along the way as well. love from memphis tn

  4. I am bawling, too. My 9 year old at times seems to carry the weight of the world on his shoulders. He is a great big brother to our 7 year old with Down syndrome, but I think your note to Sibs closely reflects some of what he is going through. Thanks for sharing this.

  5. Wow. As a sibling of a CI sister I know what this is like. I can barley see as a type this because I'm crying. Sometimes I wish when I was younger I had someone to hold me. I plan on being a person to hole sibs when they are lonely when I'm older. I'm 15 and I want to make change. Thank you. This post was so true.

  6. Emily, you already know my thoughts on this post as I have been emailing them to you! I just want to say that I am so proud of you for being my guest blogger. I love your writing and your honesty.

    It is also great to see all of you commenting on this post. I know that it is tough to read without tears in your eyes!

  7. This really touched me. Thank you. It's a never ending journey, isn't it?

    Sue H.


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