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.

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?

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.

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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.

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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!
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  • 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
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  • 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
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  • Letters from Thai high school students
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New Year, New Necklace

 

My cousin asked me “Do you have any New Years Resolutions?”

I quickly answered, “No.”

But I’ve been thinking about this more as the days pass. I was never much one for resolutions. I do remember making some in college- one of which was to be nicer, which several of my friends are adopting this year (though I find it a little humorous, because they are my friends. I think they are nice anyways). A lot of people put exercise on their resolution list, and as much as I support good exercise, I sometimes get a little annoyed because, as a regular gym goer regardless of the season, my familiar territory becomes super crowded. As this article suggests, priorities change after trauma and loss and they can be reflected in our resolutions. Yes, I may vow to eat more vegetables, but I’ve been doing that everyday- New Year’s doesn’t change that for me. Instead, despite my quick response to my cousin, I might have a few resolutions.

 

When I first lost Mabel I was so hungry for support, especially from people who had been through something similar. I joined lots of facebook groups-Down Syndrome Bereavement Group, Grieve Beautifully, Loss Parents Walking Alternative Paths, All That Love Can Do <3, Remembering Our Babies After Stillbirth/Neonatal Loss and Life After Loss of your Baby/ Surviving Stillbirth/Neonatal Loss. These groups helped me immensely in the beginning, but I’ve found they bring me down lately- a lot of people in stages of grief that are painful for me to observe. So I’ve stopped following them.

 

I’m taking down Mabel’s sign at work. I originally put it up to help ease the burden of people asking about the baby and saying painful platitudes in response to the answer. Plus, I’m not sure people are reading it anymore. I still get an occasional “How’s the baby?” and I can now easily say, “I have sad news…” I can do it without being tearful and can redirect the conversation back to the patient. Oddly, I don’t always want to talk about her in the exam room anymore. I still have one month of overlap- last January I was heavily pregnant and so I may still see some patients who saw me last with child and they may ask, but now I’m readier.

 

I’m going to work on my anger. I find it’s turned me into a bitter, jealous person. Recently at my December babyloss support group, my anger was evident and there were new people at the group. Though it’s a safe space to be able to express our feelings, I fear that my anger scared some of the new people who are far earlier in their grief. I also heard of someone I know who not long ago had a miscarriage- and my thoughts about it were horrific. I, who supports loss is loss, had trouble finding sympathy because this person had a living child. I was angry that she had even tried for two children when I’m still waiting for one living one. What kind of mean, bitterness is that? It’s not who I want to be.

 

I’m going find some peace at work. I constant fear, especially as the one year anniversary approaches, that my job will pressure me to go back to doing call. All I can say is I’m not ready right now (will I ever be?). I need to address this fear so I can continue my job peacefully.

 

I’m wearing a new necklace. I have been so kindly gifted many necklaces for Mabel. The first one I received I immediately put on and wore every day since, despite the little carrot charm falling off every now and then.

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So I received a new one- very similar with the carrot, but this one with color.

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I think it reflects how I want to feel this year- adding a little more color into my life. Embracing gratitude, be less angry, finding some peace.

 

So my resolutions? New year, new necklace.

Do you have any resolutions?

Day 24: Forgiveness

I have a lot of forgiveness to dole out.  I have been angry at people, felt hurt by people and been angry at myself and hurt myself.  I need to soften my heart and let the forgiveness seep in.

But I’m not ready.

Tonight I cried to Chris in the car, “I don’t like being angry. I just don’t know how not to be right now.”  It’s been a tough week for me emotionally and so today’s prompt has been a hard one.  The concept of forgiveness has sat with me all day- I thought about while doing planks at bootcamp; I contemplated it while trying on clothes at Kohl’s; I reflected about it while driving and walking the dog; it was even on my mind while I was hanging out with friends.

The idea is there and today I planted a seed, as the prompt says.  Someday, I’ll be able to welcome it and be the person I want to be.  In the meantime, I decided to work on forgiving myself.

Today we were invited over to carve pumpkins with friends.  I decided I wanted to go but wasn’t going to carve a pumpkin.  I’d go for the company alone.  I have no inclination to celebrate holidays this year- a bit out of protest.  They shouldn’t exist if my baby couldn’t be here to enjoy them.  I certainly shouldn’t enjoy them if Mabel can’t.

As pumpkin carving time approached, I let that word forgiveness seep in a bit and decided I could, if nothing else, forgive myself.  I could allow myself to celebrate a little tonight.  So I did.

#CaptureYourGrief

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Day 9: In Memory

“Is this new?” my acupuncturist asked looking at my tattoo as he placed tiny needles into my foot.

“Yes.”

“You  must really like carrots,” he said with a chuckle.

“It’s for my daughter.  When I was pregnant with her, we used to call her out little Karate Carrot.”

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I love that my memorial is subtle, requiring a little explanation.  I’m grateful that we came up with a nickname for her that stuck and is real-world enough that I get to see reminders of her from time to time.

***

“Why do you have a carrot necklace?” the daughter of my friend asked.

“I had a baby who died and we used to call her our Karate Carrot.”

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***

“What’s with the carrots?” the little boy asked.  We were seated around a large round table, drawing on small index cards.  Taken together they would fill up a mural in a Mother’s Day remembrance activity for the babylost.  He was drawing something for his little brothers, twins gone too soon.  Chris and I were each drawing carrots in our own way.

“We used to call our daughter Mabel our Karate Carrot.”

“Hah! That’s funny.  A carrot doing karate.”

I smiled.

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#CaptureYourGrief

 

 

 

A tattoo is worth a thousand words

“Do you always take so many pictures?” Her question didn’t have any judgment in it. It was the kind said to get conversation flowing. While seated on the cushioned table, a sort of hybrid between the kind in a doctor’s office and the ones in a massage studio, I sat with my left foot splayed out and my phone in hand documenting each part of the tattoo process.

She knew a little bit of our story. Chris and I had come three months before to discuss getting matching tattoos for Mabel. We brought some inspiration with us and I thought it was important for her to know the meaning behind the tattoos. “We had a baby in February and she died shortly after birth, “ I told her then. “We used to call her the Karate Carrot, when I was pregnant with her, so that’s why we want a carrot tattoo.”

Now, seated in the studio, I hammed it up for the camera, instructing Chris on which angles I wanted and then grabbed the phone from him so I could see and take some of my own.   Chris rolled his eyes and shook his head while keeping a little smile on his face, in that way he does that lets me know that he thinks I’m silly but that my silliness is endearing too. So when she asked if I always take a lot of pictures, I felt a need to explain.

Of the two of us, Chris rarely takes photos. I’m usually the one making him smile and telling him “Now take one of me, like this!” as I posed in some ridiculous way in front of a landmark. We have a nicer camera, but it’s an effort to remember it and when I want to document the more mundane moments of everyday living, I usually grab what I have- my cell phone. The only exception to this habit was this past year, when I shied away from the camera.

“We found out our daughter had Down Syndrome when I was 13 weeks pregnant,” I told the tattoo artist. “And there is a high chance of stillbirth with Down Syndrome, so in the beginning I didn’t take a lot of photos because I thought if I lost the pregnancy, the photos might make me sad. Then later we found out she had some birth defects and the doctors had no idea whether she’d live or not. We wouldn’t know until she was born. So my reluctance to take photos got worse. But now that we’ve been through it, now that we’ve lost her, I am so sad I don’t have more photos of me pregnant. They were part of her story. So now whenever I do anything related to her, I try to take lots of photos to make up for it.”

She nodded in understanding, as she dipped her ink needles, changing the color from green to orange. There was no pause in the conversation, no awkward “I’m sorry”s, no weak platitudes. A simple nod of understanding as she went on creating the life long tribute to my daughter on my ankle.

***

I chose my ankle because I wanted something I could easily show or hide, depending on the circumstance.  It’s also by the foot, reminding me of Mabel’s clubbed feet.  Chris chose the side of his chest, where the kidneys meet the lungs, reminding him of the organs that made her existence so short, but so special.

Do you carry anything with you to remind you of your baby or one that you’ve lost?  If you were to get a tattoo (or if you have one) what would you do to symbolize your little one?

The studio had much to keep us entertained.

The studio had much to keep us entertained.

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

The design.  The top images were inspirations we brought in, including a carved a carrot given to us by friends and a temporary tattoo chris gave me for mother's day.

The design. The top images were inspirations we brought in, including a carved a carrot given to us by friends and a temporary tattoo chris gave me for mother’s day.

Before

Before. Please disregard the bug bites.

transposing the image

transposing the image

Deciding whether I like the placement

Deciding whether I like the placement

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It kinda hurts!

It kinda hurts!

such a ham!

such a ham!

Chris's turn next

Chris’s turn next

Needlework

Needlework

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Showing off the new tat

Showing off the new tat

Finished!

Finished!

Finished!

Finished!

 

Take your daughter to work day

The noise of the clock radio wakes me.  Despite fourteen years of use, the ugly, boxy alarm clock still doesn’t fail me.  I am not in a deep slumber; the light from the early morning had already awoken me once.  I am surprised how light it is at 5:45am.  So different from the dark mornings of winter that last had me up for this routine.  I gather all my preparations from the night before- bag with a change of clothes, work backpack, lunch, tea, smoothie and head to the door.  I pause, remembering one of the Mother’s Day gifts Chris got me and I am momentarily distracted, getting it so I can take it with me.

Bootcamp is a welcome distraction.  I’m trying to make things normal, to feel like any other day.  But I soon learn this pattern of bootcamp, shower at my cousins and off to work is nothing but reminiscent of my last days of pregnancy.  I go through the workout, wishing jam ball slams were part of the circuit.  I take deep breaths through the cool down, trying not to vomit from the exertion.  Up, down, jump forward, back, push up, band pull, climbers.  Maybe it’s the new tea I’m drinking.  Maybe it’s nerves.  Whatever it is, it passes.  I say a quick goodbye to my two work out partners, happy I was able to start the day with friendly faces.

After a shower and a good sit in my cousin’s kitchen to kill time, I get in the car.  In the days before, I had been sad thinking about giving up my alone, contemplation time, but now a new feeling sets in.  I’m  nervous. I don’t want to do this.  In the past three months I haven’t done anything I didn’t want to do.  If it’s too hard emotionally or I just don’t feel up to it, I pull the grief card.  But now this get-out-of jail-free ticket is worthless.  I have to go to work.  I drive the ten minutes to the office and sit in the parking lot for a few minutes, psyching myself up to start this day.

I was starting in one of my offices that has a back office- a whole separate work space, with it’s own entrance.  I could be apart, avoid the waiting room if I wanted.  But that’s silly, I would tell people, no big deal, of course I’ll go in the main entrance.  I’ll march right through the waiting room, saying hellos to the office staff with a timid smile.  Just like old times- just a softer, quieter entrance.

As I grab my bundles and head to the door, the main waiting room seems like too big a chasm to cross.  I can’t do it.  I turn the corner and enter the back office.  I see my nurse there and one of the doctors enters the room at the same time.  I’m welcomed with a hug and next thing I know, I’m more or less speechless.  I am here.  I don’t remember what they said, but I know there were kind words.  Maybe it was their compassion, maybe it was the onslaught of memories from a place I haven’t been since pregnancy, but I find my eyes welling up.  I’m crying.  I was supposed to be here while my baby was in day care.  I was supposed to taking breaks to pump milk.  I was supposed to be living a different life.

As the day wears on, I make myself useful- transferring paper charts into electronic medical records, scanning files and even calling one patient.  In the middle of the day I’m talking to my nurse and lift up my pant leg just a little.  I show her the Mother’s Day gift that Chris had given me, almost forgotten as I walked out the door.  I show her the little secret I have on my ankle.  “It’s take your daughter to work day,” I tell her.

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My temporary tattoo. One of my Mother’s Day gifts from Chris.