Monday, April 11, 2011

What's your sign?

Do you believe in signs?

Today, on this anniversary of sorts, I can firmly say that I do.

It has been one year since the day I received the call that our son, our unborn son, still safely tucked inside, had Down syndrome.  Shortly before the complication that led to further testing, I was celebrating the fact that we had made it through the first trimester and that the pregnancy was likely to last.  This was cause for celebration because the two pregnancies immediately prior had ended in miscarriage.  And, then, the news.  At the time, I remember thinking it was devastating, that we would have to come to grips with it.  I was full of fear.  And, it was just the beginning.

The news led to further testing, genetic testing, that my husband and I had never had done before. But, now, we were being tested.  And, all the while, we were having weekly ultrasounds because our son had health issues beyond his bonus chromosome.  It didn't take me long to realize that Down syndrome was not going to be the toughest challenge our son faced.  In fact, his challenges would be immense.  And then, he was gone.  Six short and difficult weeks later.

The day we lost our son, I received another call.  I had already begun to dread the phone ringing and avoided it at all costs.  It was our genetic counselor again.  This time, she was calling to let me know that my Tay-Sachs test result had come back and that there was a very strong possibility that I am a carrier.  And, that my husband would need to be tested right away.  I barely remember this call.  I was very upset over the loss of our baby and was given medication by my doctor.  I had never taken anything like this before and it made me very groggy.  The call came during my slumber.  Later in the day, when I woke up, I couldn’t be sure it had actually happened.  The caller ID made it a reality.  

I called the counselor back to hear it again, to be sure I had it right.  The issue with the Tay-Sachs results was terrifying.  Our genetic counselor explained that if I am a carrier and my husband is a carrier, then there was 25% chance that our living children, the very breath of me, my heart and soul, could have late onset Tay-Sachs, a debilitating, ultimately fatal, neurological disease.  This may not seem like much of chance.  But, we had landed on the slim end of so many statistics that I was genuinely, truly terrified.

I left town.  I went to my mom and dad’s house.  I retreated.  My husband got his blood drawn and made his way there, too.  I had no idea when I would return.  I had no idea how I would make it through the day.  Then, the results came back.  My husband was a carrier, too.    

This did it.  I came back to Atlanta to learn what we needed to do next to get the answers we needed.  One option was to have the kids tested.  But, I knew I could not do that.  I knew I could not sit and wait for that call to come in again.  The other option was to have more invasive DNA mapping done on my husband and I which would not only tell us definitively if we are carriers, but it would tell us which tiny portions of our DNA carried the disease.  This, I could do.  The problem was the wait.  There are only a few labs in the country that perform this level of testing.  Thankfully, one was Emory.  Unfortunately, the wait was one year.  One year of waiting, wondering, torture. 

Our genetic counselor is a miracle worker and managed to work it out with the lab.  We would get our blood drawn in her office and they would courier it to Emory and then she would deliver our results when they came in.  It would take 3 months.

Our summer went on.  I started to feel stronger.  I worked in the garden.  I made plans.  I prayed.  I bargained. I begged.  I wanted a sign.  I remember one very specific occasion where I literally crouched in the garden, sobbing, shattered, and begged for a sign that everything would be okay.  It didn’t seem to come.  But, I still believed it would.  I steadied myself and continued to wait for it.

At the end of the summer, we made a trip up to Martha’s Vineyard to spread our son’s ashes.  He now rests amidst the sand, surf and sun in one of the most beautiful places in the world to me, the Children’s Memorial at the Edgartown Lighthouse.  Ironically, this is the very spot where my husband proposed to me many years ago.  Back then, we could not have imagined that this would also be the site where we would visit our son for the rest of our lives.  At the time, it was just a pretty lighthouse.  During our marriage, the lighthouse had undergone restoration and it was made into a memorial.  Sometimes, I can't help but wonder at the string of ironies and coincidences.

Upon landing in Atlanta on our return, literally, I turned on my phone while taxying to our gate and it immediately rang.  My heart sank when I saw who it was.  It was the genetic counselor.  Again.  Her timing, impeccable.  I answered and got the news that we were in the clear.  The carrier testing was wrong.  We were not carriers.  Our children would grow old.  We would watch it all.  I was relieved.

Time kept going.  Some days were hard.  Some days less so.  I didn’t know what would be next.  There would be no baby.  There would be something though.  I didn’t know what.  But, I continued to believe.  So, I continued to get out of bed.  Then, I decided to start living again.  I enrolled in the Master Gardener program.  I started to say yes again.  Yet, I still wanted a sign.  Something to let me know I was on the right path, that I was making the right choices.  I needed more than just my instincts and my belief.  

A few weeks ago, an opportunity arose.  The Spruill Art Gallery is installing a vegetable garden.  They needed someone to lead it.  I considered it.  I agreed to meet with Pattie Baker at the site to assess what would need to be done.  You cannot get to the garden without passing a sign.  It is large.  It is not hidden.  It is in plain sight, facing the main road.  And, yet, if you can believe it, I had never noticed it before.  There was no missing it on this day.  My path led me straight to it.   

I finally got my sign.  And, so, of course, I said yes!  Archie, my sweet boy, this one’s for you!


  1. Oh Shawn - you are ok! You really are! Words can't express how much you, your blog, everything mean to me!

  2. I must say I too love those little signs. They come you know, not when you want them, but when you are ready to receive them. Keep your heart open and listen they will be there. . .

  3. Way to go, Shawn. You have survived the unbearable and somehow ended up still fully human, able to endure the beauty and sadness at once--not wishing it away or pretending, but walking through the grief with honesty and heart...on to the next sign that things will be okay. And they are, right? You are one scrappy chick--SO proud. I only wish I was there to play in the dirt with you. xoxo

  4. oh, Shawn, that was truly beautiful.

  5. I have learned that life is not fair. It is what you do afterwards
    You chose to live and celebrate life in a new way
    I called it GIFTS.
    We look around and we see God's gifts that we may not have seen before
    Through our losses and pain we find those gifts and give to others
    I am honored to have meet you and look forward to us working together

  6. Thank you, everybody, for your kind support. It means so much to me.

    Bob, what you said about gifts really hits home. Just this morning, in one of those moments, I was thinking of the many gifts this past year has brought me. Thank you for understanding and validating.

    XOXO people!

  7. You are a beautiful writer Shawn. I love you. I'm sorry for the pain you've been through, but I'm so happy you've found so many ways to have joy in your life. You're a wonderful Mom, and your light shines on everything you do!

  8. I have never heard your full story. Thank you for sharing this.

    I know I cannot fully understand, but from one blogger to another, I offer you this amazing blog, from a woman who also lost her son: