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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So lucky

I took Muppet to a new vet- one a little closer and smaller, looking for a more personal (and cheaper?) experience than the VCA where we usually go. Right next to the vet was a groomer, so we popped in to ask about prices. As we stood in front of the counter, one of the groomers came around to look at her for a proper estimate. She saw Felix in the carrier and cooed a bit, asking a common question,

“Is he your first?”

“My second,” I answered easily.

“What is your first? A boy or a girl?”

“ I had a daughter,” I replied trying to put a little emphasis on the past tense. I seem to think people will pick up on it, but I have to find someone who actually does.

“Oh my gosh, you are SO lucky! I have two boys- but look at you, you got one of each! You are just so lucky!”

I almost told her.

But I didn’t.

I am so lucky. I am lucky to have Felix. I am lucky to have met Mabel- to have been given 36 weeks with her, to have gone into labor on my own, to have the precious skin to skin time I had hoped for, to have her born living, to have had her declare to us very clearly that there was nothing we could do to save her, that we could hold her as she died peacefully in our arms. Yes I am lucky in many ways, but not the way the groomer meant. I have my boy. I had my girl.

I made a lady cry

Yesterday I took Muppet and Felix out for a walk. We have a path in our town (that connects to several nearby towns) converted from a railroad track to a walking path- perfect for a stroll, a bike ride or a jog. I went there frequently after Mabel died because they plowed two legs of it in the winter, so it was one of the few places I could get out and get some fresh air safely. I met many friends there for walks as the air warmed. I remember my achey pelvis after the first few walks. It’s also a place where I would eventually take Muppet when we first got her. I guess it’s a place where I take my babies- whether they be dead and I take them in memory or whther they be furbabies. Yesterday I took my first living baby along with my furbaby.

We had a nice walk, with some interaction based mainly around muppet. She’s such stinkin’ cute puppy, its hard for her not to attract attention. I kept Felix well covered by a blanket over the stroller so no one would really see him and spread their germy germs to his fragile immune system. As we neared the end of our walk, a friendly woman walking alone approached and asked politely if she could pet my dog. She got right down on the ground with Muppet and gave her all sorts of puppy-loving. Muppet makes friends easily and loves just about anyone who will pet her.

After a few minutes of pets and belly rubs, she asked, again politely, if she could see the baby. I lifted the blanket and she was just awed by his small size.

“Yeah, he’s 10 days old. This is our first trip out.”

“My, look at you- a baby AND a puppy!! Wow! Is he your first?” she asked innocently.

“My second,” I answered with a smile.

“So does he have a brother or sister at home?” It often amazes me how many ways this question can be worded but my answer can be very different depending on the wording. So far I try to answer honestly and answer the question how its asked- though I’ve learned sometimes it makes me feel like I’m lying by omission- but it seems the right way for now. The same question can be phrased in many ways- is your first a boy or a girl? How old is your first? Do you have a son or a daughter? How many kids do you have? So many variations Presented with the question worded this way by the woman on the path, I felt the need to explain.

“He had a sister, but she died last year.”

The friendly, almost unctuous smile quickly melted into a deep expression of sorrow. Tears immediately filled her eyes and she began to cry a bit in front of me.

“Oh, I am so so sorry,” she said- and her empathy was genuine. She seemed at a loss for words for a bit and kept muttering apologies over and over. I smiled in a way that I hoped appeared gracious and resisted the urge to comfort her with “it’s ok,” when we all know its not ok at all.

“Thank you” I said softly in a tone trying to comfort her.

“It…just …makes you…think about…what’s important. The things we stress about…Oh gosh,” she stammered through tears.

I was kind of in awe about this woman’s outward display of emotion. She exuded joy with my puppy and now sadness hearing about Mabel. In some ways it seemed a bit over the top from a stranger, but in other ways it seemed so genuine.

I decided to comfort her a bit with words that I have already learned seem to make people feel better.

“Yes, so we are especially grateful for him.”

We soon parted ways, but I was reminded of the many times I was asked in pregnancy about whether it was my first or not. Some of those innocent conversations led to the admission that my first baby died. Awkwardness still followed, like it did before I was visibly pregnant, but my large belly and now the little human in front of me gave me an out. I can now comment on how fortunate/grateful/happy I am to have Felix.

This is all true- but a part of me cringes saying this as well. It implies a happy ending, that I’m no longer sad because I have a new baby (not true); that I’m less sad now that I have a new baby (both true and not true). The idea that having another baby makes everything better. When my only child died, I was so hopeful for another, thinking it would make things easier- and I’d be lying if I said it didn’t. But it doesn’t change the fact that my baby died. I didn’t know when or if I’d get pregnant and if I’d stay pregnant and if that baby would be free of life limiting birth defects. What I needed to know then was that I’d be okay no matter what happened- whether I was fortunate to have a rainbow or not. We all know that not every story ends in a rainbow, and I feel like I want the world to know that too.

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?

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A white lie

I lied….sort of.

Chris did the Best Buddies ride up in Cape Cod- a 100 mile bike ride to fundraise for the organization that helps people with intellectual and developmental disabilities- people like Mabel or who Mabel would have been. And so Chris rode in memory of Mabel. Turns out it’s good training for him, as he’s doing a half iron man next weekend (who is this guy??).

Our plans were a bit interrupted. We originally planned to spend the night before at my parents house, which is 20 minutes from the race start, but Muppet decided to eat one of Chris’s inhalers the day before and had to spend a night at the vet for monitoring. So Chris got up at the crack of dawn (before dawn actually- at 330am) to make it up to Boston to check in and ride at 7am. I stayed behind to retrieve the silly, but stable puppy and drove to meet him at the finish line on Cape Cod. We spent that night at my parents’ house instead of the one before. As we walked the puppy outside that evening, we ran into a neighborhood couple. My parents live in a community of town houses along the water, with a nice walking path right outside their doorstep. Neighborhood people often walk along there and this couple was very friendly. The man introduced himself and was quite chatty, in a way that made me wish my dad was with us because I’m sure they would have gotten along quite well (my parents were in Florida at a family funeral- one I would have attended had I not been grounded by my midwives due to my late gestation and history of preterm birth).

After the appropriate petting and cooing at the puppy, he amiably commented on my protruding belly. “Congratulations, I see!”

“Thank you,” I smiled softly (can one smile softly? I think so). I’m still working on accepting congratulations gracefully.

“Is it your first?”

“No, my second.”

“Oh boy, you’ll have some sibling rivalry, then, huh?”

“Mmm hmm.” I lied.

“We have two daughters five years apart. They warned us the older one might regress. I thought, no way- not at five. But they were right!”

I smiled politely at his story trying not to betray my reeling mind and pounding heart. I was still thinking about the subtle accession I had made with my simple “Mmm hmm.” He thought my first child was alive and I didn’t correct him. It wasn’t an outright lie- but it felt like one. I couldn’t do it though, not with this man, who I would likely never see again. I don’t think I’ll ever deny Mabel’s existence, but for the first time I denied her death. This protruding belly is an announcement to the world, something that people happily comment freely on, a public billboard inviting strangers to ask usually harmless, friendly questions.

I know this is a common conundrum among us. I’ve read so many of your posts in how you respond and yet I’m still caught off guard at my own response this time.

So tell me again, how do you respond to strangers?

A memorial day BBQ

I went to a BBQ this weekend at a friend’s. It was great- I needed some friend time, since Chris was away visiting his brother for the weekend and had lots of unused burgers and sausages that needed to be eaten. I debated bringing Muppet with me- I had asked my friend if I could, because it was an outdoor affair and I felt like I hadn’t spent enough time with her that day. But she can be a handful and I wasn’t sure I wanted the responsibility of watching her every move or causing trouble at someone else’s house (she is still a puppy and gets into all sorts of puppy mischief). In the end, I’m glad I did.

The BBQ was small- a couple generations- friends and some of their parents. I liked the mix of it. Muppet was a hit among the parents, which made me feel good. I needed the down time sitting in a chair with friends. Food was delish- extra so, because someone else cooked it! And a couple hours into the party, some friends came with their five week old newborn. I knew they were coming- the host had given me a heads up (which I so very appreciated) and so I tried to mentally prepare. I’ve been trying to face some situations more head on, less avoidance, though my feelings are still the same in these scenarios as they were a year ago- I can just control my emotions more. And I recognize I can’t avoid forever. I still think my feelings are valid, but now that it’s been over a year, I know that others might not understand why it hurts to see newbors or kids Mabel’s age.

It’s harder with friends and family, actually. Stranger babies are easier to see and forget, but I care about my friends and family- I care about their babies. So seeing them is actually harder, balancing my care and my sorrow.

IT was how I expected- there was no dangling the baby in front of my face, pretending that I had never buried my own baby. They were subtle, but they were also new parents, proud of the baby they had made. The older generation was smitten, practically arguing over whose turn it was to hold the baby. They asked questions to the new mom about sleeping and when she was returning to work.

I sat politely through it, my heart aching because I couldn’t help but think about how I didn’t get that with Mabel. How badly I wanted that simple interaction, those simple questions. How maddeningly unfair it was that I had a baby but didn’t get todo any of the normal baby/new mommy stuff. It felt like it never happened, which hurts even more! I wasn’t angry at the new family, I was simply jealous and reminded of the hurt. It really hurt. I felt so so cheated.

I think one friend might have recognized this a little- she pulled me into conversation when everyone else’s talk started to focus on the baby. I was so grateful for that, whether she did so knowingly or not. So we talked about non-baby things, while I reached down and petted my puppy, happy she was there with me.

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I stayed for more than enough time after, but was the first to leave, tired from a busy day and too much emotion.

Have you felt cheated lately?