Sunday Synopsis

Changing early pregnancy etiquette– I like this article because it keeps on the theme I”m seeing more and more of in mainstream media- let’s talk about our losses!  espeically miscarriage- the hush hush secret.

THe healing power of animals.  This is like my story, sort of.  We got our puppy six months after Mabel died.  I needed something to love and mother.  It’s not a save-all.  Getting my puppy doesnt undo the grief of burying my child, but I found comfort in it.  Do you have an animal in your life that has helped you in your grief?

I hope that you never know.  I love this article for addressing the grief olympics that sometimes comes in the bereaved world.  I also love that it says “be there…even when you are pushed away.” to those who want to support us.  I can’t say how important this one line is to me.

Couples who chose not to have children are selfish, Pope says. Not to bring in any debate about religion, but any thoughts on this?  I think of couples who lost babies to due multiple miscarriages, due to life limiting conditions, due to stillbirth, due to reasonless reasons.  What if they choose not to go through the pain of another pregnancy?  What of the couples who struggle with infertility?  There just feels likes there’s too much behind being childless for people (religious heads or not) to judge.

Advertisements

She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

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 weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

Is Mabel a real person?

“Is Mabel a real person?” the woman behind the counter asked. I had called a week before to order a custom cake. I picked out a decadent flavor and frosting combo. The only things I said was that I wanted it to say “Happy Birthday, Mabel” and for it to have carrot decorations on it.

When this woman, who I could tell was the decorator, asked if she was real, I was yet again taken aback about how to answer.

“She was,” I answered quickly with a half smile.

In the car, I relayed this exchange to Chris. A strange question, we decided. I must have said something when ordering that was a little out of the usual. Perhaps they thought I was ordering a cake for a rabbit?

“I wish I had answered differently,” I told him. “I wish I had said, “Yes, Mabel’s my daughter.” But instead I said what I said, leaving them thinking that Mabel was some 85 year-old grandmother who passed away, and isn’t it sweet that we still remember.

There’s a first time for every question. Right now I can answer “how’s the baby?” and “Do you have kids” very easily, with responses that leave me satisfied. In the beginning these questions would cause my heart to race, my face to get hot and tears to well and I’d stumble over an inadequate answer. With time I learned the replies to such inquiries that left me feeling true to my daughter. If I’m ever asked again, that strange, hear-swirling question “Is Mabel a real person?” I’ll be better prepared.

The question did come at an interesting time. It’s been a full year since she was a “real” person. Sometimes I wonder, did it all really happen? Was she really here? Here I am, 21 months out from that positive pregnancy test, eight full months of pregnancy later- the discomforts, the kicks, the ultrasounds that proved there was really a baby and yet, no gurgling baby to show for it all. It feels so unreal. My life in many ways is the same- go to work, come home, care for just myself and Chris. There are many ways I remind myself that things are different- the work changes (still not attending births), the photos that line my house of a child I once held, the stretch marks on my breasts- but I am still thrown a bit when asked “Do you have kids?” Because even though I know I am a mom in a sense, I know I had a daughter, I still feel a bit like an imposter, like I made the whole thing up.

Do you ever feel that way?

Sunday Synopsis

Brides are now donating their wedding gowns to an amazing cause–  At the end of my pregnancy, I remember looking online for a baby burial outfit- just in case.  Not much out there.  The closest I could find were christening outfits- but they were gender specific and we didn’t know if we were having a boy or a girl.  I also worried they would be far too big for the small baby I was expecting.  I eventually stumbled across the perfect outfit which came just in time before we had to bury our little one.  It’s hard enough to have to even consider buying a burial outfit that small, so it’s heartwarming to hear that some people are trying to make that terribly sad and taboo task a bit easier.

NILMDTS photographers camera stolen-  Remember this?  Camera card returned to the news station!  expensive camera equipment weren’t but the memories were so gratefully returned to the bereaved parents.  there’s even a fund started to help replace the photographers equipment.

These photos show what women really look like after pregnancy  *TRIGGER WARNING* this has moms with babies in it.  I post it because I still get so upset even seeing this headline. I feel like the moral of the photo story is- it’s all worth it because, look, we have these beautiful babies to show for it.  The 4th trimester.  What about us?  We are not even underrepresented- we are passed over entirely.  It angers and saddens me.

Bridging the gap between the baby bereaved and those who love them–  I stumbled across this at such an opportune time.  It touches on something I’ve recently been trying to work on- rebuilding some lost relationships since my daughter died.  It’s not easy because I had built up walls.  I like how this article makes it a two way street- we are often quick to blame others for not understanding, not reaching out.  But we also play a role. In the time leading up to ThanksgivingI was dreading some face to face time with a baby around Mabel’s age.  Her mother reached out to me a few days beforehand, recognizing how the holiday might be hard for me and asking if there was anything she could do to make it easier.  It was such a gift- to be asked directly.  I was able to answer honestly about my concerns regarding seeing the baby and give warning about my unpredictable reactions.  It was SO much easier to be asked than to volunteer the info.

Meet the first model with Down Syndrome to walk at New York Fashion week.-  Love this!  It’s great to see more positive images of people with Down Syndrome in the media.

 

 

 

 

A little gift

 

From the individual who took cupcakes to my care teams on Mabel’s birthday

nurse

“As I walked out of Labor & Birth I heard someone call out to me. It was the girl at the front desk at the NICU where we had dropped off cupcakes earlier. She said one of the nurses wanted to see me. The nurse came out with tears in her eyes and gave me a huge hug. She told me that walking through Mabel’s life and death with her family was one of the most profound, beautiful experiences she has ever had. “It changed me and the way I practice. Please give Meghan and Chris my love and tell them I still think of them and Mabel every time I walk by that space.”

Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  FullSizeRender_2

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

FullSizeRender_1

I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

FullSizeRender

Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

  • Donations to children’s museums- in CT, in RI
  • Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
  • "we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes."

    “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

  • Flowers at Mabel’s grave
  • play dough too!

    play dough too!

  • Carrot soup
  • Books that showed up as gifts (including the one on the right that came from unknown sender)
  • did any of you send the Help Thanks Wow book?  it came without a sender...

    did any of you send the Help Thanks Wow book? it came without a sender…

  • Gifts for children’s hospital in Boston and Indianapolis
  • Shoveling neighbors snow in Massachusetts and Connecticut
  • cards! so many cards!
  • FullSizeRender
  • Donation to help migrant workers and their families in Florida
  • Diapers and kids treats donated to a homeless family in North Carolina
  • Donation to a Down Syndrome organization in Virginia
  • A children’s book donated to my town’s library
  • Letting people go ahead in the airport line
  • Buying ice cream for the kids at the next table
  • Dinner buying for a cancer survivor
  • Baking carrot cake for a friend
  • Coffee bought for people in line behind the buyers
  • A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
  • A donation given to a homeless man in a wheelchair
  • A donation to the Perinatal Mental Health task force in LA
  • Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
  • A carrot hat given to me
  • FullSizeRender_2
  • Presents donated to a local shelter including a carrot stuffy
  • Donation to a high school lunar rover team in CT
  • Handmade carrot wreath for my door
  • FullSizeRender (19)
  • Letters from Thai high school students
  • FullSizeRender_3