Bravery

Sometimes I need to be reminded that I’ve done some hard things. I have survived. I am brave. I am brave because….

I hung up the phone, the news of a Down Syndrome diagnosis for my baby still ringing fresh in my ears. I took a deep breath, basked in a moment of acceptance and relief, and then continued on my day, keeping my personal life and professional life separate. I continued seeing my patients that day, all pregnant with healthy babies, all while holding my news secret.

I said yes.  Yes to a baby with special needs.

I walked into the CT Down Syndrome Congress annual conference, scared but trying to keep an open mind to learn all I could about what life is like parenting a child with Down Syndrome.

I left the hospital with a likely life limiting diagnosis for my baby, choosing minimal fetal monitoring until the baby had any hope of survival, knowing that I was choosing to preserve my fertility over heroic measures for a baby that would likely die, knowing that I might forever struggle with guilt if she was stillborn before the set date we were willing to intervene.

I told the doctors to take out the vent and held my baby as she died.

I held my lifeless baby.

I handed my baby to the nurse, never to hold her again.

I left the hospital empty handed.

I continued to live life.

I went to my first support group, though I cried tears of fear in the hallway before going in.

I went back to work and told hundreds of people, “my baby died,” and continued to care for them with a smile.

I chose a new career path.

I talk about my baby to strangers, to try to break the silence.

I try to ask for what I need.

I had had another baby despite crippling anxiety that I might lose him too.

I’ve been to baby showers.

I’ve held babies.

I write about my feelings here, for all to see.

Why are you brave?

There’s nothing in there.

“You got anything in there?”

A hand laid on my belly, with a knowing smile.

“Any more babies?”

Since when is my fertility anyone else’s business?  I know that these comments were either well intentioned or just causal banter, but their intention still hurt.  The askers know about Mabel, which in my mind should have made them more sensitive.

I have held on to some of the baby weight.  I could make excuses for why- but they’re irrelevant.  Either you’re calling me chubby (insult) or you’re assuming I can just have babies whenever I want (ignorance). Either way, the comments make me feel like a failure. I’m failing at losing weight and I’m failing at getting pregnant.  I’m only 10lbs overweight but my abs are non existent thanks to two babies in a short time.  Though since I have only one visible baby, I feel like my body is a mismatch. I also would love to be pregnant- but I don’t think it’s going to come easy.  And since I’m still nursing, my body hasn’t given any signs that it’s ready for another pregnancy.

Hearing these comments makes me realize people want another one for me (so do I), but it feels like expectation, pressure.  It’s the reason that I didn’t tell anyone about being pregnant with Felix until 12 weeks- I didn’t want to disappoint them if I miscarried.  I know I have no control over it- but my disappointment was going to be enough.  I couldn’t handle anyone else’s.  The same applies here.  I worry that I won’t be able to have anymore- I’ve learned there are no guarantees- and my own self imposed pressure is more than I can handle.  Please don’t give me anyone else’s.

“No.”

“There’s nothing in there.”

“I wish.”

A rogue wave

As a midwife, my colleagues and I usually meet once a month to discuss protocols, clinical issues and patient care.  I enjoy these meetings because it’s rare that we actually see each other in person.  I’m in an office with maybe one or two other midwives or docs on any given day, but even then we are all busy seeing patients, often working through our lunch hour.  It’s a pleasure to spend some time face to face with my coworkers- even if it’s entirely work focused.

Recently our monthly meeting has been cancelled or rescheduled for all sorts of logistical reasons, so when we had our first one in several months earlier this week, I was looking forward to it…even though it’s at 7am.  The hour long meeting flew by and I was leaving the hospital, where our meeting is held, in a good mood.

Until I walked out the main entrance.

Sitting there as I was leaving was a woman with a newborn carrier waiting for her ride home.  My heart clenched and I was thrown backward in time. Here I was, leaving the hospital, empty handed once again.

So much has happened since that first time I left the hospital without my baby.  I returned many times- for meetings, to visit staff and friends. I even finally had the chance to leave the hospital with an actual living breathing newborn. But it had been a while since I’d been back at the hospital and it’s amazing how even though it’s been two and a half years since I said goodbye to my Mabel, like a rogue wave in a quiet sea, the grief can still hit hard out of nowhere.

I don’t spend much time actively grieving these days. I often feel that my other job- working for Hope After Loss, the non profit that supports the pregnancy and infant loss community, is my way of grieving. I get to speak of my daughter often and empathize deeply when I’m speaking new a new loss mom or dad.  What I realized earlier this week at the hospital is that though I may be honoring Mabel in my role at Hope, I still compartmentalize my feelings.  It’s protective.  Grief is hard work.

Seeing this mom and her newborn, I was reminded I still have work to do.

I miss her, my baby Mabel.

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.