April 1st

I have a confession to make.

I did something insensitive.  It was years and years ago, but this day now reminds me of it.  It was at a time when I was young and stupid and didn’t know better- but I feel so horrible about it now.  Though I have renounced any formal religion, the Catholic guilt can still get me, so I’m hoping confession will relieve me a bit.

Some background first.  I remember being on a family trip when I was a kid- a young teenager I think.  One day in the hotel room my siblings and I were just fooling around and we somehow figured out that most of us could push their stomach out in a way that looks pregnant.  My older sister could do it, my 9 and 10 year old younger brother and sister could do it.  It was funny seeing a sight on such a little person.  Oddly, I couldn’t.  Maybe I wasn’t coordinated enough or didn’t have the abs to do it, but I felt a little left out.

Fast forward to many years later.  I was in my early twenties and my sister had showed me a photo of her looking pregnant (with the whole push out your belly trick)- though it seemed hilarious because we knew she most certainly wasn’t.  So I tried it too, and this time I did it!  I was so impressed with myself.  The older me laughs a bit at this- having been asked many many times in my career “are you pregnant?” when I most certainly wasn’t.  Way to make me feel fat.  But in my skinny little 23 year old body, faking it was some sort of accomplishment.

I took a photo.  And posted it.  It wasn’t April fools (thankfully) but it was still a joke in my mind- seeing if anyone would comment.  I don’t think I got many responses.  I wondered about that- perhaps because it didn’t look as real as I thought, perhaps because I had no back story or perhaps because people were just being polite.

I am horrified that my younger self did this.  I was soooo far from the world of wanting to be pregnant, it seemed harmless.  My friends on social media were right there with me- I didn’t know anyone my age who pregnant, let alone trying or experiencing loss.  That, I am grateful for.  Though there could have been.  We all know that the loss and infertility world is often a silent one- we don’t always know who is grieving.

Today, April 1st, can be a significant one in the babyloss community.  Apparently it can be “a thing” to do an april fools pregnancy announcement on social media.  I am fortunate in that so far, I have not seen any… yet.  I hope that you all are in the same boat.  This day could be hard- or if there are no insensitive jokes, it could be a day like any other for most of us.

But today I also think of a friend, who will undoubtedly will be having a hard day.  She lost her son a year ago today- the cruelest of all jokes.  Thinking of her and Anders today and apologizing to the world for my young, insensitive self.

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.

Mabel

 

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?