Down Syndrome at the Dog Park

There is a dad who comes to the dog park with his large golden doodle and his young son.  I’ve interacted with them before, like many other dog park regulars. We usually talk about our dogs- asking their names, ages, where they are from.  On this one day, though, I felt moved to say more.

When the three of them came into the park, the dog took off leaving dad and son to walk up the path.  I yelled an excited “Hi, Pete!” to the blur of a dog as it ran by.  The dad heard my greeting and walked over.  “I’m sorry. I don’t remember your dog’s name,” he said apologetically.  When I named Muppet. He responded, “and what’s your name?” shaking the small fist of the baby strapped to my chest.

“Felix,” I said smiling.

As he asked me about Felix’s age, his son came over and simply put his head up against Felix’s belly.  I smiled an decided to do something a little courageous.

“Does your son have down syndrome?” I asked.

“Yes,” he responded, hesitantly, almost protective.

“My daughter had Down Syndrome,” I could see his expression soften, “but she died after birth. It makes me happy seeing your son interact with Felix because it let’s me picture what it might have been like if she lived.”

We then proceeded to exchange diagnosis stories- him at birth, after normal testing. Me, in pregnancy after very abnormal testing.  Both of us “young” in the obstetrical world- without risk factors (though most babies with Down Syndrome are born to mothers who are medically “young.”) Both of us shocked. We talked about our connection to the Connecticut Down Syndrome Congress. He told me how is his native country, Russia, Down Syndrome is almost something to be ashamed of, giving me insight to his initial protectiveness, when I asked about his son.  It also made me thankful that I live in a country where the two words that make up Down Syndrome are not a cause for shame. There is still a long journey towards inclusion and acceptance, but it’s progress.

My testaments

I was recently introduced to this video.

http://www.huffingtonpost.com/entry/dad-breaks-down-in-tears-explaining-what-he-knows-about-down-syndrome_us_56cddfd6e4b0928f5a6df16e

It spoke to me on man levels. There is the obvious reason- it’s about Down Syndrome.  But there is a more subtle reason- it’s about a parent wanting to speak up for his child but struggling to find the words at the right time. I feel so connected to that feeling. How often do I want to speak about Mabel, but I don’t know quite how?

The dad felt like he failed his son, so made a video about it- as a testament. I come here and I post on facebook, saying her name, posting about baby loss, writing about grief. These are my testaments.

Things I learned from Mabel’s second birthday

Don’t be afraid to ask for the support you need or want.  I dreaded last year’s birthday and was quite sad. This year I tried to think of something that would help me anticipate the day in better spirits. Throughout the year, people often send me photos of things they find with carrots, reminding me that they’re thinking of my baby. These little sentiments mean so very much to me, so I thought I’d see if I could concentrate them all in one day.

I am still vulnerable.  So. Very. Vulnerable. Yes, I may talk a lot about babyloss. In fact, I’ve made somewhat of a career out of it, with my nonprofit work and my midwifery interest in it.  However, I am still a grieving mom and a relatively new one at that. Two years is just a drop in the bucket. So I sam still sensitive to people’s remarks, or lack thereof. After some unanticipated and unwelcome commentary, I had a breakdown and found myself in a very dark place, thrown back to those early grieving days. It took some time to crawl out of that hole and even though I did, I was scarred.  The day was the slightest bit tainted.

I’m still figuring things out. Last year I encouraged random acts of kindness and had a little birthday party with cake. This year I asked for Carrot selfies and spent the day mostly by myself and had cake with just my husband.  I’m not sure what I’ll do in future years. But as I try things on, I’ll find what I like.

I miss my forever baby. Despite those early wishes, the world did not stop turning when my Mabel died. My life move forward too-my once empty arms are now filled and the constant ache has softened. But I still miss all five pounds, five ounces of my firstborn, chunky cheeks and all.

People are awesome. I asked and boy did I ever receive.  Dozens of people posted on facebook, on instagram, via email and text.  Others donated to Hope After Loss or St. Jude in her name. I was overwhelmed by the response.

Thank you- so very much.

Ikea, revisited

Remember that time I was in line at Ikea? I saw someone I knew with her two young kids and I couldn’t bring myself to say hello- her with her two living, breathing children; me with only the memory of my dead one.

I saw her again.  At our local walk to remember.  I was there to remember my Mabel.  She was there to remember her first child, born still.

Oh, the stories untold.

Lunch date

They sat at the table next to us.  We were on a lunch date, me and Chris.  They were on a lunch date, mom and daughter.  Mom had the brussels sprout salad, daughter had the fried calamari, scrunching her face at the pieces with tentacles.  “Is that octopus?” she asked.  They both had fish for the main course. We left before they ordered dessert.  “Sociology,” the mom said. “No, he texted me! He said psychology!” The daughter corrected.  She was in high school. They had an easy banter between them, not “best friends” but clearly mom and daughter.

I know Mabel and I would never had had such a lunch date, nor easy banter with big words like sociology or psychology.  She would never had lightheartedly mentioned texting.  Yet I was envious of them.  In a different world, fifteen years from now, I could have been taking Mabel out for our own kind of lunch date. She would have been so proud to be out with her mom in a fancy restaurant, ordering from a grown up menu.  She would likely have squealed at the tentacled pieces of calamari and ordered the fried food over the vegetables.

An unexpected reminder of what will not be.

Damned if I do….

October 2013- that was the last I had seen her.  I knew because that was the date on the last note I had written.

You had a baby! Congratulations!

Thank you, I smiled warmly.

So much has happened since I was here last!

Yes- a lot has happened. The emphasis in my words hinted at a hidden story…

Well now you really know what it’s like, huh? she jested, referencing my my former life as a midwife who hadn’t given birth, who didn’t have kids yet.

My heart beat a little faster and my head spun a little- it was the shadow of a feeling I used to know very well, in the early days.  I used to tense up- heart racing, palms sweating, chest tightening- when someone would ask “How’s the baby?” or “Do you have kids?” It’s a feeling of fear, grief, sadness, anger all mixed up, when asked a question I wasn’t quite sure how to answer.  It was a feeling of anticipation- wondering how the other person would react, how to tell of my daughter without making the situation overly awkward.

Now the situation has changed. The tense feeling has softened.  She didn’t ask if he was my first.  There was no question to respond to.  It was all assumption.  The only way she could know the whole story was if I volunteered the information, something I have yet to master in a way that feels good. I wanted to say. I sure do! Two kids since I’ve seen you last! But doing so would only lead to follow up questions- how old is your first... I’d share that she had died and the requisite polite words or unhelpful platitudes would come. And it would feel like I’m fishing for sympathy.

I chose the path of least resistance-maybe not an outright lie but a lie of omission almost. It didn’t feel great.

Not telling the whole story felt wrong, telling the whole story felt wrong.  Damned if I do, damned if I don’t.

what do you do?