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.

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at the dog park

At the dog park, we watch our dogs run around and play together.  We refer to each other in relation to our pets.  “I’m Muppet’s mom.” and “Oliver’s mom brought dog toys.”  We swap names of groomers, complain about those who don’t clean up after their dogs and laugh our dogs romp around.  Occasionally, the conversation turns to life outside of our dogs.  Bringing Felix to the park often invites this kind of conversation.  Today, I had the same question, but different conversations.

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“He’s been cranky all day, which is not easy when I work from home!” I shared when someone asked about the little guyI was wearing in the baby bjorn.

“What do you do for work?”

I explained about my two jobs- I work part time as a midwife and part time for a non profit. Usually people, especially other women, pounce on the midwifery as an area of interest.  But this time it was different.

“What non profit?”

“Hope After Loss- we support the pregnancy and infant loss community. We run support groups, do outreach and give financial support for burial and cremation.”

“Oh….” the light hearted tone of the conversation had changed.  A beat later, the lightness returned as she changed the subject. “How was your labor with him?” she asked, nodding toward Felix.

“Hah! That’s a story!”

“Oh, was it long?”

“Oh no, it was super quick,” I said as I gave her the breakdown of how after a fifteen minute labor he was born into my hands over the toilet.

“Wow! And he’s you’re first!?” she said questioningly.

“My second, that’s why he came so fast.”

“How old’s your first?”

“She would have been 20 months…” I could see the confusion in her face as she tried to understand the past tense.  “But she died.”

Her face fell as she struggled to comprehend. “Oh I”m so sorry… She lived for 20 months?”

“No, she lived for six hours.”

“I’m so sorry,” she repeated, looking distressed.

“Thank you.  I like talking about her,” I reassured her.  Then followed a short conversation about my daughter.  It felt good to be open and honest.

As we wrapped up the details of Mabel’s birth and death, she looked at Felix in the baby carrier and said “at least you have him now.”  Looking for the silver lining in the death of a baby.

I kissed my son on his head and said “Yes, I am so grateful to have him.  But I miss his sister still.”

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“Is he your first?”

“My second.”

“Oh, well then you know what you’re in for!” she said with a smile.

“Nope.  No I don’t.” Except I didn’t say that.  I thought it.  I thought about saying it, especially after the previous conversation I had. But I didn’t.  There’s just a split second I have to make the decision, whether I tell her.  I spent that split second thinking and not speaking and the moment was over.  Sometimes I wonder what the conversation would have been like had I spoke.  It’s just so much easier to answer direct questions rather than volunteering the information.

How old is YOUR baby?

“How old is your first?”  another question that keeps coming up.  This time (at the dog park again- I take my furbaby there almost daily) it was from an older woman making very nice small talk.  I know her only as Luna’s mom.  Luna is an older, somewhat toothless dog that has an affinity for puppies.  Luna and her mom are regulars, as Muppet and I have become.  It’s funny because our talk usually centers around our dogs or the weather, but on that day it ventured into family life.

“She would have been fourte…fifteen months,” I stumbled.  She was so appropriately sympathetic- not ignoring the odd tense I used, responding how hard this pregnancy must be.  I think the responses from the slightly older generation have often been most gentle- I’m unsure if it’s a maturity thing or a generational thing.

But I was horrified.  I can tell you exactly how old my puppy is, but I stumbled over the age of my daughter.  I was brought back to a month after Mabel was born and the seamstress asked how old the baby was, after spying my post-baby pooch and first asking incorrectly if I was pregnant.  I stumbled then too and was horrified that I could say off the tip of my tongue how many weeks old my baby would have been.  On this day at the dog park, I was thrown right back there, making me feel like a bad mom.  I know I am not- and it was just a passing feeling, one that was totally self imposed, but do you ever feel that way?  How old would your baby have been?

The same question over and over.

We stood in the middle of the dog park watching our dogs romp and run.  She commented on how cute Muppet was- not an unusual thing.  Muppet is surprisingly well loved among the regulars at the dog park.  I guess not too surprising- she’s a lover of people and dogs alike.  Playful, soft to the touch, recognizable.  Even a quasi-celebrity after she survived a near attack by another dog, which was photo documented on the park’s facebook page.  Muppet was doing her typical zoomies around the park, trying to get other dogs to engage in a game of chase.

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“Is this your first?” she asked me, nodding at my big belly.

“My second,” I smiled politely.

“Oh good!” she said, relieved, as she watched my puppy and her boundlesss energy.

I didn’t think much of the comment until  not a few minutes later, in a different spot, I had basically the same conversation with another woman.

“Oh, good,” she commented when learning this was not my first baby.

Perhaps I’m over-analyzing but, do they feel better about my crazy energetic puppy because she is supposedly used to having another kid in the home?  What if I told them there was no other child in the home?  I wasn’t angry, just perplexed about their responses.   I know, I’m extremely sensitive in general to that seemingly harmless question.  But what do you think they meant by their responses?

Earlier that day I was at bootcamp and was paired up with a woman I had seen before but don’t think I’d even spoken with.  After introducing ourselves, she asked it this was my first. I shook my head with a small smile.

“What else do you have at home- boys, girls?”  she asked pleasantly.

I relied on my standard response. “I had a daughter,” I said simply.  Usually that’s the end of the conversation- I often think people either don’t pick up on the past tense or do, but don’t know how to respond.  Or perhaps because I don’t elaborate, they think I’m unfriendly.  But this woman surprised me.

“So you have this one and your angel in heaven?”  My face lit up with a mixture of surprise and happiness.  She not only got the reference but actually acknowledged it!  It doesn’t matter that I don’t envision Mabel that way; it just matters that she understood the meaning behind those four words.  She understood that I was trying to tell her that I had a baby and she died -in a gentle way- to give her an out, killing the conversation.  But she made my day by really hearing what I said and not being afraid to respond.

I looked at her and gave her a real smile, nodding and saying “yes.” This time I was the one who didn’t know how to respond.  I tried to convey in my eyes and grin, how grateful I was for her simple comment.

By the end of the class she offered to give me a baby carrier she was trying to give to a good home.  It was almost like having a mommy friend.  So that’s what it feels like!

It certainly beats the “make sure they go to bed at the same time!” piece of advice I was given by a fellow bootcamper, after she asked it it was my first.  People so very much want to relate to you when you’re pregnant.  I didn’t have the heart to tell this other woman that my daughter was eternally sleeping, so I I just nodded and tried to seem receptive to her advice.  Really I was just speechless- I often look back at these moments and wonder how I would have felt if I responded differently.  I am proud that I can reflect on these interactions thinking about how  would have felt and not necessarily pondering how I would have made the other person feel by announcing my daughter’s death.   Clearly I still have concerns, or it would simply roll off my tongue- “my first child died.”  But instead I’m subtler, hinting, without being ether obvious or lying.  In the moment I might still be protecting others from the horror that is child death, but now I can analyze the interaction later really just wondering if I had the best response for me. 

How have your responses to these type of questions changed over time?  Are you able to think of yourself as the most important person in the conversation? Do you still struggle worrying about how others feel when mentioning your loss?

z

Not faking it

At the dog park, a tall man stood next to me dressed in fatigues.  Because the dog park is such a friendly place, we chatted and I learned about his dog- name, breed, age, rescue.  He told me how he was a supply officer for the army- things like that come up when dogs are prancing on you with muddy paws and we talk about what we wear to the dog park.  We exchanged tricks we were working on with our pooches.
He was laughing a bit one time when I scolded my pup “Muppet, off!” I shouted as she jumped excitedly on a new human arrival to the park.
“I love that name Muppet! it suits her.” he chuckled.
“Sure does, ” I replied.
“I have a 17 month old at home and she just is getting into the Muppets.  WE put them on the tv and her face just lights up.”  He laughs at the image in his head and tries to imitate her expression.
I gave a weak smile.  I’m not proud of not really faking it then, but I just wasn’t in the mood.  Being at the dog park, I feel a little like a parent.  THat’s how we refer to each other- Muppet’s mom, Rosie’s dad, etc.  We don’t actually learn each others names.  We talk in ways I imagine parents of living children talking.   So we he brought a real live child into the conversation, reminding me that my bay was a furbaby, not the toddler kind she would have been, I kind of shut down. I hope I didn’t seem rude
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I was at the lunch table at work, happily chatting away with my staff.  I don’t always get a lunch break- let alone a lunch break that I can enjoy with my coworkers.  I’m often sitting at my desk eating as I chart or grabbing bites between patients and phone calls if it was a really busy day.  As I ate we small talked, I heard a secretary give a little squeal outside the lunch room.
“Look who I found in the lobby!” she sang.
Behind her was a man holding a 8 month old baby.  The son and husband of a coworker who was pregnant when I was and had her baby a few months after me.  She got to bring her baby home.
She has been very tactful around me- as most of my staff has.  I’m very grateful for that.  They also didn’t come into the lunchroom.  Those who wanted to see the baby got up and went out.  I sat and finished my lunch and scrolled through facebook.
Again, not proud of not faking it.
I know in both these circumstances I didn’t do or say anything especially rude, but it was my lack of response that was a response in itself.  I hope I didn’t seem rude.
Have you had any situations like this, where you felt your inaction made a statement?

Hi from the silence

Hi, I say meekly.

I’ve fallen off the map.  Everyday I want to write, I want to connect with the community that has held my hand through the past year and a half, I want to tell you all what’s in my head.

I’m ok.  I just wanted you to know that.

I”m just swamped!  I’ve taken on a second job, which I”ll write more about as soon as I can rightfully.  I feel like I have so little time- most of it I try to stay on top of reading other’s blogs so I feel more connected.  But the longer I stay away from writing, the harder it seems to restart.

So for now, I’ll write just a snippet.

Today I was at the dog park and there was a woman there with a teenage girl with Down Syndrome.  She had dark hair and glasses, very high functioning with good conversation skills from what i could overhear.  I so so badly wanted to tell both her and her mother about Mabel.  I wanted to talk to the girl- get to know her.  We exchanged a few words- about our dogs and about a lady who was holding her tiny dog in the pouch pocket of her sweatshirt.  I hung out close to them, trying to figure out how to start more conversation, but then it was time for them to go.  That sweet little interaction made my day.

Play Date

I was at the dog park with Muppet and she was having her usual blissful time running around with the other dogs. The snow has begun to melt creating a large muddy patch at the park, which of course tends to draw all the dogs. Muppets fur soaks its all up and she gets crazy dirty, loving every minute. This day she found a couple of puppies that she played so well with. Coco was a brown and white dog (I am terrible at remembering breeds) just a few months older than Muppet and about the same size. They romped happily giving chase and play biting.

Dog parks are friendly places. Conversation seems to flow easily between puppy parents.

“Which one is yours?”

“What’s his name?”

“How old?”

“Where do you get her groomed?”

We exchange advice on boots for the snow, where to get a cheap light up collar, where there is a do-it-yourself dog bathing station near by.

On this day, Coco’s mom and I struck up conversation. She seemed about 15 years older than me and very friendly. She spoke with an accent and I soon learned she was from Columbia. She told me how she met her husband, an American, while she was vacationing here and ended up moving here for him.

“Our puppies get along so well!” she said. “If you ever want, we have a fenced in yard and live down the street. You can come over with Muppet and they can play!”

She told me how she works, but her mother is at home with Coco during the day.

“but she doesn’t speak English,” she warned.

“Esta bien. Hablo espanol!”

Her eyes widened and she smiled! “That’s great! She would love you! Even if you speak just a little Spanish.” She wanted to know what I did and I explained I was a midwife (“una partera o comodroma” I said when she wasn’t familiar with the English word. “pero en la hospital,” explaining that here midwives practice a little differently). I joked about how my obstetrical and gyn spanish was much better than general conversational Spanish, so hopefully her mother wouldn’t mind if I talked about vaginas! She laughed.

I left the dog park with her name and number to later arrange a puppy playdate. I thought, is this what parents with living children do? Would I be making similar playdates for Mabel, had she lived? Or not because she would have been sick?