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?

Sunday Synopsis

Why mentioning a Loved One who Has Recently Passed Away Matters–  Yes- please speak the name of our children. yes, at parties.  Yes, even when we seem happy- it will not bring us down.  Only joy knowing that our children are remembered.

WHen I’m asked how many children I have, I always say, “Five, but one died.” I”m glad I”m not the only one.

What I wish more people understood about losing a child–   Yes yes! Especially the one about not fixing us.  I’ve really come to focus on this recently. It’s hard to see us sad and people want to make us happy.  But sometimes when people try to make us happy, they invalidate our feelings of grief.  I may feel jealous of others- but I”m ok with that feeling. I don’t to be reminded to think of others’ burdens- it wont take away my jealousy, it only makes feel like a bad person.  Sometimes food intentions hurt.

Beloved fist bumping Bruins fan is running for cancer group’s man of the year-  You know what I love about this? Liam is presented simply as a child with leukemia. He is a sick child first; his Down Syndrome is only a detail. Leukemia is more common in children with Down Syndrome, so why not make him the Man of the Year!

It’s none of your business how many kids I”m having-  Oh man, this hit home. As if we have full control over how many kids we’re having.  I’m having as many kids as my body and mind will let me- but sadly that is not as many as I wanted- because one of my children will always be missing.

Grief Support Groups: Positives and Negatives- I go to a babyloss support group- overall it’s been super helpful, though there was one group meeting that didn’t go so well- some new people, one of which led the conversation into dark angry places that were not therapeutic.  But overall I’m a big fan of the right support group.

Things never to say to couples without children– “From a well-intentioned friend, family planning questions can hurt or offend a childless couple. When in doubt, respect a couple’s current family without prescribing decisions for their future. ‪#‎BabyTalk‬” from george takei’s fbpage

 

Grief exposed

It was the end of my day and I walked my last patient up to the front desk. “She needs an appointment in 4 weeks,” I told my secretary.   As she searched the schedule, the patient tapped me gently on the arm.

“And how’s your little one?” she asked, continuing some of the friendly banter we had started in the exam room. She remembered that I had been pregnant the last time I saw her.

I am so prepared for this question. I’ve answered it time and time again. I’ve come to terms with the fact that people will ask- a lot of people, because I have a lot of patients who saw me pregnant. Probably hundreds of them. Some know what happened and some don’t. I no longer get emotional or shut down when asked. I have my go-to words that fill the once awkward space the question leaves.

But this time was different. I had an audience. I am usually asked about my baby when it’s just me and the patient in the exam room. I don’t think I’ve ever been asked in front of others who know and here I was, with the patient, sweetly asking in about my daughter with my front desk staff there to witness. I felt self-conscious.

“I have sad news about the baby. She died last year,” I told the patient. She was kind- gave me a quick hug and expressed genuine condolences. And then I quickly moved on and brought the conversation back to the future appointment for the patient.

It was a little different than what I usually do in privacy with the patient. If it’s someone like this patient I usually give a little more space for them to react and leave room for conversation if it happens. I think it helps me and it helps the patient. But this time I felt almost embarrassed that my staff had to watch this awkward interaction, perhaps thinking about how awful it must be to get this question over and over. Part of me is glad they witnessed- people getting a little window into the ongoing grief I have, but another part of me is so very shy about it. I can open up about the raw grief I have more easily in the privacy of an exam room, but not while being watched.

Have you had this question asked in a group setting? How have you reacted?

World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

***

In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

 

A patients grief for her dad

I was reviewing her medical history and when we went over her family history, she told me that her father had died last year.

“I’m so sorry to hear that,” I replied.

She told me how his birthday just passed and the anniversary of his death was coming up. I asked if she did anything for the birthday or was planning anything for the anniversary. She peered at me with a look of surprise- like she never thought about doing something in remembrance.

“It’s just been so hard, losing my dad…” she started. She was young- younger than me by ten years at least, which meant her dad died young. She mentioned how her live-in-boyfriend didn’t quite understand, especially now that it’s been so long. She shrugged her shoulders, brushing it off a bit.

I looked at her in the eyes, trying to drum up all the compassion I could. “There is no timeline on grief,” I spoke the words I have read over and over again on blogs and articles and have tried to convince myself are true. “You will be sad forever. He was your dad. It’ll change over time, but you can always be sad. I’ve learned a lot about grief over the last year and one thing I know is that you grieve how and for as long as you need to.”

Her eyes got a little wet and she gave a small smile.

“Thank you.”

Have you been able to comfort someone in their grief?

Recurrent miscarriage and anxiety

Her blood pressure was high- she told me soon after we started her annual visit.

“I just get so nervous at doctors offices…especially the OBGYN.”

I explained to her it’s very common- there’s even a name for it “White Coat Syndrome.” She seemed relieved. We talked of ways to make sure her general blood pressure was normal outside my office- like at her primary care provider or at-home monitoring. She went on to tell me she has been feeling anxious lately. She’s always had anxiety but the past few months it has been ramped up- every since her miscarriage.

Reviewing her OB history she told me she had an unplanned pregnancy a few months ago and a few days later miscarried. The experience plunged her into a deep anxiety. She had a family member announce her unplanned pregnancy around that time too, which added to her complex emotions. We launched into a conversation about loss. She has had multiple miscarriages and two living children. Her recent miscarriage made her realize she how she in a way would want another child but doesn’t think she could handle the anxiety behind the risk of miscarriage. We were able to come up with a reliable birth control plan that would take away that anxiety. “It made me realize I guess I should be happy with the two children I have.” I understood her thinking, but wanted to shout, No! You can want more children! You deserve to go through a pregnancy without anxiety! I instead comforted her how I could. We side tracked a bit and talked of her family member who announced her pregnancy early, about how difficult it can be to watch others go through pregnancy without any obvious worry, without the real threat of miscarriage and loss hanging over her head. She was tearful at times and I think it felt good for her to say the words and feel validated.

At the end of the visit, she looked at me, tears still in her eye. “Have you gone through something like this, “ she asked hesitantly.

“I had a baby last year and she died after birth,” I told her. “I’ve never miscarried before. It’s a different kind of loss, I know, but I do know what it’s like to have the same feelings you do.” We talked a little more about loss and watching others seemingly easy pregnancies. She was good to me- expressed her sincere condolences and was very sweet. But what I appreciated most was the gratitude in her eyes. I could tell she just felt so thankful to have someone who understood.

Have you been on the other side of things- able to be the comforter, showing understanding?

Unmastered question

Muppet and I preformed a rescue mission last week. It was my day off and a particularly warm day for those of us in the northeast. My car thermometer hit the 50s as we drove to a local hiking venue. The snow on the main and easiest path is usually packed down enough for hiking up to the top in just hiking boots and the day was no exception. There were several other hikers, many with dogs, out that day too. We had just turned the first few bends of the path when we stopped in front of a lady crouching down, two dogs at her side.

“Is this your dog?” she asked somewhat confused. I then realized that one of the dogs was leashed and the other she had by the collar alone. When I spoke my no, she then asked “did you see anyone looking for a dog?” Apparently she found this dog walking down the trail unaccompanied. I took a turn holding the dog, calm and content sitting with us, as we investigated his collar for tags. His name was Max and we found some phone numbers. The other woman tried one, but had no service. After a few attempts I was able to get someone on my phone. Before I had a chance to speak, a woman’s voice asked “do you have a little brown dog?” She wasn’t far downt he trail and Max apparently was a little hard of hearing, but we held on to him until his owner appeared and leashed him up.

Pretty content withourselves, Muppet and I continued up the trail with the original woman who found Max. We chatted for quite a bit- mostly small talk, about things like our dogs and the weather. I remarked how it has been frustrating taking a puppy out so much in the freezing temperatures, always on a leash. I went on to say how the past weeked was really rough because it was cold, but I was also super sick and had to take care of the puppy alone, because my husband was out of town.

“Oh, do you have kids then?”

Such a benign question in most other scenarios. I sighed mentally as I tried to decide how to answer. I still hate denying Mabel’s existence with a simple “no.” And the “none living” doesn’t sit well with me either. But this woman was a complete stranger- we hadn’t even learned each other’s names. I knew far more about her dog and her previous one than I did about her and here I was debating how to tell her such an intimate detail of my life.

“Not in the house…” I mumbled awkwardly. Ugh. I didn’t want that to be my answer. I just needed more time to think about it and craft the words that I really wanted to say. The conversation continued, but my response was still on my mind. But another opportunity presented. I can’t remember what exactly brought us to it, but I found myself saying, “Well, I had a daughter last year, but she died after birth. I got Muppet as a puppy not long after, so she could help fill that space. She’s my baby now.” My tone was cheerful and loving and her response was the appropriate “Oh, I’m sorry.” I was able to transition the conversation back to the dogs, talking about how protective I am of my puppy and the small talk flowed.

This interaction has sat with me though, now days later. I thought I was good at answering that dreaded question, especially when I’m in my office, where I hear variations of it most often. But I suppose I was unprepared on the trail. I guess I need to learn to be prepared all the time. I think I would have been happier if I answered “Yes- a daughter” or “I had a daughter” and see where the conversation went. Perhaps next time.

Has this happened to you? Thought you had mastered something in your babyloss world, only to be caught off guard and stumble?

The Muppet Puppy, dog rescuer.

Sunday Synopsis

Listening to the screams of a bereaved mother–  We are not always easy to be with in our grief.  Our sorrow is uncomfortable.  Our moans of sadness are hard to hear.  But it is our right.

My right to be a mother- an honest mom speaks out.   Postpartum depression after miscarriage is real.

Annie Lennox: Son’s death Changed my Life.  We don’t often hear of celebrities who have experienced babyloss, so I am struck when I hear of one.  As sad as I am to hear there are more of us in the club, I am thankful that those with star power can speak out and bring more of a face, more attention to babyloss.

TTC After Loss: The Negatives: Whew! this one is right on if you’ve ever tried to conceive after loss.  The hope that comes with the idea of another baby (not a replacement one, as we all know) can seem so uplifting.  But we have to remember that with trying to conceive comes disappointment for some or many.  Trying to conceive after babyloss can be miserable.  miserable.

The unique grief of mothers without living children.  I found this article so accurate.  I especially appreciate the part about a rainbow not making it better- that not everyone gets a rainbow.  We need more help and support learning how to cope without or despite a rainbow.

What it means to hold space-Who holds space for you?

A grieving mom’s request A Short, concise, well written article, which sums up some of my requests.  How about you? (thanks to LosingBennyBear for sharing!)

The due date revisited…

One year ago today was Mabel’s due date. Honestly I might not have even remembered it had a friend not mentioned it yesterday. A year ago this day meant so much more. I had already birthed Mabel, but the passing of the day felt like the passing of the time I was supposed to be pregnant. One of the many concrete days that marked the end, reminding me I was not longer pregnant with my baby… the one that died. I knew I would not see March 14 while pregnant. The risk of stillbirth with Down Syndrome gave me the option for early induction, which I would have gladly taken. Then the oligohydramnios diagnosis moved the induction date even earlier- to 37 weeks. Only in my last week of pregnancy di we witch it back to 39 weeks. Mabel has us all humbled, thinking we could actually predict the day she came, when she decided to make her entrance into this world at 36 weeks. So all the planning, the dates, ended up meaning so little.

Last year I was sad on this day. Today I am emotionless. I didn’t even remember. Got me thinking…

Did I not remember the day because now her actual birthday means so much more? Did I not remember the day because I am moving forward (not moving on… I don’t like that term)?   Is this progress? Do I even try to make meaning of my forgetfulness?

Good Bye, Paul

My friend Paul died this week. To be honest, I was not very close to Paul. I probably haven’t spoken to him in ten years, but social media has kept me connected in that voyeuristic kind of way and I have followed his story the past couple years. His death has hit me hard for such a long ago friend and it has ripped me open a bit.

I first met Paul, or Pubby, as he was introduced by his long-standing family nickname, at a summer camp I worked at during my college summers. It was an alumni family camp for my university- staffed by current college students. Job positions were competitive- hundreds applied for sixty spots and those accepted were often known for their creativity and outgoing nature. The fun from those summers spilled into the school year as well, as my new group of incredibly bonded friends reunited on campus. It was like Dirty Dancing- but wilder and more fun- skinny-dipping, costumes, secret parties. Once I became “Staph” I joined a community of welcoming, free spirited people to whom I was always bonded, for years to come. I became instant friends with Staph from years past, even if we never worked together, simply because they were part of the community. I think Paul and I overlapped one summer there- he was a few years older- but I do remember he was a bit of a legend, as many of the older Staph were. I even kissed him once at a party, because that’s the kind of place it was- kisses were given out rather freely. I often told friends that little tidbit, because I was just so proud that I once kissed someone like Paul.

When went to midwifery school, I was accepted to a good program in a city in CT, I arrived at the school with my tiny car (one of those new VW Beetles) packed with all my earthly belongings. I came site unseen. I had interviewed over the phone and had only driven through the city on the highway, remembering the reputation it had as being a dangerous place. I left my car parked on the street and walked timidly around the med school campus trying to find the dorm I would be staying in. I was terrified- I didn’t know anyone or anything about the place. I thought my car would be broken into. And as I found the dorm and was walking up the path, I spotted a familiar person sitting on the lawn outside. “Pubby!” I walked excitedly to him and was greeted with a hug. He was in med school there and having lunch with another med school classmate (also former Staph, no less). He was such a warm welcome on my eyes, and my fear of this scary city began to fade- because I knew someone, someone nice and cool and welcoming there. He made my first day ok.

Throughout those years I saw him on and off, mostly in group settings, though I remember having dinner with him and his then girlfriend, now wife, Lucy- and I always still felt that sense of awe for being friends with someone like Paul. I guess I felt like he was out of my league in a way. He never made me feel that way- it’s just that he was so smart and funny and simply just cool. He and Lucy moved away to California for residency and I stayed behind in that fearful city I grew to love. I kept tabs, like everyone does these days- through facebook mostly. That’s how I learned of his illness. He was at the end of his neurosurgery (yes, brain surgery- he was that smart) residency when he was diagnosed with lung cancer. Lung cancer. A non-smoking physician in his mid 30s. What? He was a rarity. He continued to practice and wrote a lot about his unique diagnosis and how it affected his thoughts on the world, on medicine. His words and his story were fascinating, coming at a time when I needed to hear them. I didn’t talk to Paul directly during this time- just occasional messages on his health update blog, but I followed his publications. His wife even reached out to me while I was pregnant and while I was grieving and we corresponded a bit.

When I was pregnant with Mabel, he wrote this piece, which struck me. The uncertainty of prognosis. Here’s someone like Mabel- diagnosed with a rare disease, so unlikely. No real prognosis can be given. He understands that. But look! He’s living, beating the “odds.” Paul’s diagnosis and continued life gave me hope for my baby. And then my baby died; she didn’t beat the odds, but not everyone can. But Paul was doing it. When he and his wife announced their pregnancy after Mabel died, I didn’t cringe in the way I normally did when others announced such things. I actually thought, “good for them.” Maybe a little part of me was envious because I thought Paul would live- but they understood struggle, so it was ok.

I can’t believe he’s dead. He was young and fighting a rare disease. He wrote about his struggles so prolifically, beautifully, thoughtfully- I thought perhaps writing the words themselves could somehow stave off what apparently was inevitable.

My facebook feed is filling up with photos of Paul and his articles. My first instinct is that I want to look away- it is just too sad. But I don’t. Because I know Lucy can’t look away. I couldn’t look away in the early days after Mabel’s death and I envied those who could just go about their normal lives without the heavy burden of loss. They could feel sad on their own time, while I was trapped in a prison of grief- hard enough to simply be there, but worse to be there alone. It reminds me of when people say “I can’t imagine what you’re going through…” The thing is, I can imagine it. I don’t know what she is going through- my husband has never been diagnosed with a terminal illness, never died. But I can imagine it. I can imagine the sorrow and it’s terrifying. I have actually imagined losing my husband- because that’s what the death of a loved one does- it made me worry about losing anyone close to me.

Lucy announced that Paul passed away with their baby daughter resting on his chest.   The imagine… it’s the mirror image of my loss last year. My baby resting on my chest as she ceased to breathe. Paul’s daughter resting on his chest as he ceased to breathe. So beautiful. And so so wrong too. Babies aren’t supposed to die and babies’ dads aren’t supposed to die.

I am so angry at the injustice. This post is about Paul, about Lucy, about their baby. But clearly it is about me too. I wanted to write an unselfish tribute to this man, who touched so many lives both before and after he got sick and I hope some of that came through. He wasn’t supposed to die.

I think of Lucy, and her family of three- though one is now here only in memory and I think of myself and my family of three, though one is now here only in memory. Paul will forever be tied in my mind to Mabel because their stories are so different, but also so similar. Good bye, Paul. I wish you were here.

one of his most recent pieces….

http://stanmed.stanford.edu/2015spring/before-i-go.html

An interview years ago… (scroll down to the “His Girl Lucy” section.  so worth it, I promise)

http://www.thequietquiet.com/archives/doctor_paul.html