Let this be the place we allow the beauty of Down syndrome to shine on the world.   

The Diagnosis: Why We Never Felt Sad

The Diagnosis: Why We Never Felt Sad

Doctors babbled on and on that entire day. Mechanically my head nodded to confirm I was still listening. Oh, I heard them, and it was all I could do but to contain the thoughts that were screaming inside my head. Six specialists took turns explaining the options for terminating a pregnancy at 26 weeks gestation. The pregnancy to which they referred, was mine. More accurately, they were referring to the two beautiful baby girls, half me, half Cody, fully loved from day one, growing within me. ‘We just need to give you this information,’ they said, ‘in the event the babies do indeed have (voice drops to a whisper) Down syndrome.’

Truth be told, in that moment I did feel fear. I did feel grief. My emotions however, were completely unrelated to the possibility of Down syndrome. It was not only that I wanted to keep my babies, it was that I was terrified already to lose them. The only aspect I wanted desperately to abort, was the thought of another one of my children enduring heart surgery.

We found out our girls may have Down syndrome because of a common association between an Atrioventricular septal heart defect and Trisomy 21. Our 'Baby B' was indeed showing that the middle of her heart had failed to form. There was a 50% chance that this was related to both of them having three copies of the 21st chromosome.

After being filed through each specialist and getting the ‘your options’ spiel for an entire day, my husband and I finally began our drive home. I had long awaited for this moment of privacy to discuss our day. I knew exactly how I felt. Would we be on the same page?

'So what are your thoughts?' I ventured, attempting nonchalance. I discretely studied his face for hints, trying to mask my already set and passionate feelings on the matter. Cody, driving through the night's dark blanket by glow of headlights, echoed my thoughts without hesitation.

'I hate that they have heart defects, but if they have Down syndrome, we will have a different adventure and it will be awesome.' 

....I love that man.  

Then we giggled the rest of the way home. We imagined two spunky girls with pigtails and almond shaped baby blue eyes. I could already picture them chasing each other down the children’s hallway at church. We thought of our sons, being overly protective big brothers. We watched a YouTube video of a set of twin girls with Down syndrome and we nearly died from the cuteness. We quickly envisioned a future with our two beautiful daughters, two handsome sons and a lovely home abounding with life and laughter. We cried, and laughed, and then, we froze at a realization: it was still only a 50% chance. 

Since then I've read books, booklets, blogs, pamphlets and articles. 'Welcome to Holland', 'Bloom';been there, read that. The lines blur together and overlap. Accounts depict responses of denial, anger and depression. Over and over I read messages of condolences and reassurances to and from parents who spent the initial moments of hearing their child's diagnosis in fear. This is sadly, the majority. There is a social bias and stigma that is starting people off on the wrong foot. Whether this news comes during pregnancy or after, parents are often placed at the trail head of a path that can be confusing and overwhelming. 

If I was to direct parents just receiving the diagnosis that their child has Down syndrome, I would lead them towards a glimpse of the joy we have in store. Here are some things I have found both helpful and encouraging.

  • YouTube: enjoy cute videos of the many adorable children, being adorable children.
  • Hashtags: join me in my addiction of making heart eyes on pictures of children and families on Instagram under tags like, #changingthefaceofbeauty , #shouttheirworth or #upsyndrome.
  • Podcasts: hear the stories and feel the warmth from other moms in your shoes through podcasts such as, 'The Lucky Few Podcast.'
  • Welcome baskets- Order (or have your friends order) a welcome basket! You can find them from Brittany's Baskets of Hope, Jacks Baskets or Adele's Over the Rainbow Baskets.

These are just several doors into a new diverse, wonderful, radiant community. These tools paint a new, more accurate image, helping parents, like me, skip sadness and giggle with anticipation. The world needs more giggling don't you think?

This message is not meant to condemn grief. Grieving is natural, healthy and can bring healing. Nor am I trying to ignore or pretend to be oblivious to the obstacles that come with parenting a child with special needs. I simply want to guide others to an alternative route. A pathway that leads towards love, understanding and joy. I want people to hear their child may have Down syndrome, and hope the odds are in their favor.


 What Not to Say

What Not to Say

Down syndrome: Your role as a parent

Down syndrome: Your role as a parent