Wouldn’t it be great if it did

I finished ” When Breath Becomes Air” not too long ago. The book is memoir by my friend Paul.  Paul was sick- diagnosed with terminal lung cancer at age 36.  He and his wife Lucy were debating whether or not to have a child, knowing that his time with her might be brief. Paul wanted to leave Lucy with a piece of him- a child they had always planned on having.  Lucy worried that having a child would make his death more painful.

“Wouldn’t it be great if it did?” replied Paul.

******

There was a time when I wished none of it had ever happened.  The joy of becoming pregnant followed by shock of learning our baby had Down Syndrome and then the high risk of loss.  The gradual acceptance and even excitement that followed only to have that taken away, when we were learned she would likely die due to birth defects.  The magnitude of grief I felt after she died was overwhelming. I thought I was protecting myself by trying not to bond too much while pregnant with a baby with a life limiting diagnosis. I thought my grief would be manageable because I knew ahead of time.  I felt like there was an expectation (self imposed?) that I shouldn’t be that sad because I knew ahead of time.

When I was in my darkest times, I sometimes wished it never had happened. I would have never felt the pain. I would have just continued to live my life, innocent of such sadness, happily married, practicing midwifery.

But then there would have been no Mabel.

Now that my baby has been gone for over two years, I can see things a bit differently.  Oh yes, it hurt to lose my child- one that I had hoped for, one that I had said “yes” to under difficult circumstances.  But that pain was evidence to the great love I had.  Yes, Lord Tennyson, it is  better to have loved and lost than to have never loved at all.

 

Mattresses

I was listening to a podcast while I walked the dog this morning (yes, I know, I’m a nerd and I own it).  The podcast was about mattresses… why there are so many mattress stores and why they are always clustered together.  (#nerdentertainment) At one point it described a mattress ad explaining how buying the wrong mattress can be an 8 year mistake because it’s recommended you replace your mattress every 8 years (by whom? I don’t know).  Made me think about when we bought our mattress.

I remember the day in early december.  Chris and I were at the mattress store buying two for a trundle bed we purchased for the nursery.  The nursery seemed too big for just one baby so we figured a trundle for guests (and kids when older) would fill the space nicely.  I was 26 weeks pregnant, though it might have been hard to tell behind a big winter coat.  After picking out the mattresses we came for, Chris asked me if I wanted to test out some king-sized ones.  He knew I had been wanting one for a long time and now we had the space for it.  I jumped at the chance.  We literally lay on one that was too hard, then too soft and the middle one was just right. Our family was growing and I thought it was the perfect chance to expand our bed. When the salesman rung us up, we added a bed frame and mattress cover. He said the cover protects against all things- spills included.  “What about water-breaking” I half-joked.

A week later, I learned just how not-funny my line had been.  A week later, we learned my water would likely never break, or at least I wouldn’t know when it did because there was such little fluid around my baby.  A week later we were in the hospital, on a snowy weekend, learning the sad fate of our baby.  A week later we had to call on some friends to go snowblow our driveway and wait for the delivery guys to come deliver the mattress meant for a grwoing family.  A week later I arrived home to that mattress, the one bought for Mabel that she didn’t get to use.

The podcast made me realize I will easily know when my 8 years are up for my mattress.  The mattress is as old as Mabel would have been.

Mabel came to dinner

I made a grand entrance, practically somersaulting onto the patio as I lost my balance and landed on my side. I cradled Felix in my arms and ended up underneath him, cushioning the fall. He cried, startled from the sudden loss of balance but was easily soothed.  We were at a friend’s birthday party at a restaurant that hosts kid friendly happy hours on the patio on Sundays, picked so that it could be a family friendly event. The weather was beautiful as we sipped cocktails and let the kids roam by the planters.  I sat with Chris and Felix and made small talk with some of the other party guests- including the birthday girl’s parents. We knew a couple people well, but most of the guests were new to us, including the parents.  As I held a squirmy baby in my lap, the common question came up- “Is he your first?” the father of the birthday girl asked.

My husband was the first to respond.  I’ve answered the question many times but I haven’t had the chances to witness my husband answer.

“He’s our second.  We had a daughter, but she died after birth.”

“I am so sorry,” the father responded, easily. “I know what it’s like to lose a child and it’s never easy. I’m so sorry.”

It was perfect.  But of course it was- he was a bereaved parent. I had known he lost his son.  When Mabel died, his daughter and I shared some moments of understanding. We talked about how even simple small talk can be daunting when someone close to you dies.  I had to get used to the “do you have kids” and “is he your first?”  She had to get used to “do you have siblings?”  These questions can make it hard to make friends or even date easily.  Or perhaps they are great screening questions- a litmus test to see if people would be comfortable cavorting with the bereaved.

Later at the party, as the food came, I heard my cousin’s voice from across the table.

“Meghan, look! Carrots!” She offered up a small plate for me to see two carrots accompanying someone’s meal.

“Awww, look. Mabel came to dinner,” I said, easily, happily.  Smiling I took one of the carrots offered and crunched.

“How did carrots become her symbol?” asked another party goer- the birthday girl’s sister. After I told her the story, she saw my necklace and pointed it out. “Oh wow! Your necklace is a carrot too.” Though I didn’t know her well, she had known about Mabel through her sister.  And she asked easily, bringing Mabel into the conversation without hesitation. Because she knows too what it’s like to be bereaved.

And just like that, my baby was at the party.  She was the center of attention, she wasn’t ignored.  She was just there.  May all my social outings be so easy.

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.