Will my baby live?

When I got that news that Mabel had low fluid, I truly understood that the prognosis was bad, but it was hard to really wrap my head around the idea that she might actually die. Part of the difficulty was that no one would actually say she was going to die. Obstetrics would hint, very strongly at it, but couldn’t tell me with certainty. Pediatric specialists wouldn’t comment at all- they all simply said we’d have to see when she came out.

At one point we met with a neonatologist that was finally a bit helpful in that respect. I had been getting weekly ultrasounds for several weeks when we saw him- had had one that day even, which at that point had shown anhydramnios, or no fluid at all. When he heard that, his expression became very serious. He too couldn’t tell us for sure our baby would die, but he was able to get across the point that he was not optimistic for our child. It’s possible he told me nothing new, and after several weeks I was finally able to really hear someone tell me bad news. But I think it was also helpful that he dealt with babies like Mabel. Before him, those giving me the dire prognosis were in OB- they didn’t deal with the baby when she came out, so I didn’t give them as much credit as I should have.

Despite my better understanding of her poor chances, I still remained hopeful. Perhaps it would have been easier if someone could have just told me she would die- her condition was incompatible with life. Then I might have reframed my pregnancy differently.

Later, when I was hospitalized, my midwives came by daily to check in on me. I had many visitors, and everyone tried to remain upbeat. I was pretty positive myself, finally feeling “safe” on continuous monitoring. But I had my moments too- I often just wished I knew what was going to happen (so I could prepare- I thought.)

One day when one of my midwives was visiting, we were having a more serious conversation- about the what ifs. Of all my care team, I talked to her most about the what ifs- what if my baby died? How do I be a midwife? How do I answer when asked if I have kids? She had given me the book “An Exact Replica of a Figment of my Imagination” that just felt so powerful and helpful at the time. For some reason, I could talk to her most easily about the hard stuff. Maybe because others would say- “don’t think like that!” or “no! Miracles happen! Babies surprise us!” or “you don’t know what’s going to happen, why plan for the worst?” But she wouldn’t. I suppose she was the perfect example of empathy. She would stop and really think about what it must be like to be facing such an unknown reality. On one of our visits in the hospital, I asked her “Can I ask you something honestly? Do you think my baby is going to live?”

“No,” she said softly.

And at that time, it was helpful. Partly because I had been asking- not simply being told. Partly because it was her- she wasn’t trying to get me to understand, she was simply imagining it for herself.

I recently saw her for a concern of mine- one that got me super nervous.   Leading up to my appointment I was calm, pushing away bad thoughts- but once I got there, I couldn’t hold back the tears. At the end of the visit, one she basically spent reassuring me, I stopped her and said,

“When I was pregnant with Mabel, I asked you if you thought she would live. You were honest with me. That was really important to me. Today, what do you think- will I be ok??”

“Yes,” she said softly, in that same tone of voice she used with Mabel.

And I believe her.

Do you have someone you trust to tell you the truth? Someone you can hear the truth from? Is there someone you look to for reassurance that everything will be ok?

Alive

I recently reconnected with an old friend/colleague who had moved away. She had learned of Mabel and her story from some mutual friends and called me. Her message seemed urgent and when we finally were able to link up by phone, I understood her urgency. She too had lost a baby. I had known her for many years and knew of her two living adult children, but I didn’t know that there was a child that came before. She told her story; I told mine. Thirty years and very different circumstances separated our children, but some of the emotions were the same.

She relayed a story about one of her living children, a daughter in her 20s who is trying to find herself, her career. Her daughter asked her, “Mom, growing up, what did you want for me? What did you want me to be?”

In her head the answer was clear: “Alive! All I wanted was for you to be alive!” It was not the answer she gave- she spoke of happiness and fulfillment, but her thoughts are so true of those who have lost a child.

What do I want for any future children? I used to think about how I wanted them to go to good colleges, for them to have good friends, for them to be kind, compassionate children. Then I was told Mabel would have Down Syndrome and realized a good college was unimportant. I focused more on hoping she would meet other kind and compassionate kids who would befriend her. I had no doubt that she herself would be kind. I secretly hoped she would still excel in her own way- she was the daughter of two well accomplished adults who would teach and love her in all sorts of ways. Then I was told Mabel would be sick- very sick- and she might not live. She might not live through pregnancy even. I didn’t know what to hope for- hope that she was born alive and we would be faced with all sorts of difficult decisions, worrying about our child suffering or hope that she died in side of me, where she only knew the comfort of my womb, but I”d never hear her cry. I think I ultimately hoped she would be born alive and we would take the decisions as they came. I hoped she would defy the odds, hoped that the doctors were wrong, hoped that she would live. Not just be born alive, but actually live.

I was lucky. Mabel was born alive. She lived- six short hours, but she lived. In my grief, I try to remember to be grateful. I recognize I am among the fortunate in the babyloss community, if there is such a thing. My baby lived. Barely, shortly and sometimes even suffering- but she lived. I hope that she did not suffer long and I am grateful that she died in my arms.  Not every parent can say that- many are separated from their child when they die.  Many children suffer longer than Mabel.

What a weird world I live in to be grateful my baby lived a whole six hours.

Regardless of whether our babies lived only inside of us, lived for a few hours, a few days, a few months, regardless of where and how long they lived, we all had the same hope for our children and my friend put it well. We hope that they are alive.

How did your hopes for your child/children (living or gone) change with your loss?

Sunday Synopsis

Two Friends with Down Syndrome Kickstarter: This is beyond awesome!  Try not to fall in love with these kids, I dare you!  The best part is what you’re gifted when you pledge.

Our Mommy Problem. This article was posted by another blog I follow and felt the urge to comment.  Part of me wanted to be bitter and say, “at least people recognize you as a mom!” but I knew that wasn’t fair or productive.  I was compelled to comment, though and so I wrote something else.  I’d be curious what some of you moms think- those with living children and those without.   Here’s my comment: “think this article was well written- I appreciated how it seemed to tackle an issue that many women face (how to integrate the mom identity into her other identities and not let it take over) without being whiny (I have no patience for whiny). To throw another perspective in the boat- I adore being addressed as mom. It is a part of my identity that people don’t see because i don’t have a living child to prove it. But being called “mom” or better yet “Mabel’s mom” is like Christmas to me. And I know of many people who would do anything for that title but life circumstance hasn’t given them the chance. I comment not in any way to say that women shouldn’t complain about being called mom by certain people- the comment in the bar about mommies night out irked me too!- but I wouldn’t want people to stop using the term either- I’m sure the woman with a child after years of infertility might still glow at even an insensitive use of the term. I think this article has made me more mindful of how I use the moniker mom.”  

Who Has it Worse? This hit home hard for me.  No one has said it out loud so much, but I often feel like people think it’s easier to know ahead of time.  This article does a good job of saying it’s not.  It’s not easier to know and it’s not easier to not know.  Both are hard.  Both suck.

Have you read anything that has really hit home this week?  Any thoughts on these articles?

 

Frozen

On a cold night in January I made Chris take me to see a movie in the theater. I was feeling badly- my mood was really low, which was not uncommon. When you’re told that the baby you’re carrying, your first child, a strongly desired baby, will likely die because her kidneys are broken, making low fluid and causing her lungs to be really small, sometimes your mood gets low. In was one of those days and I just couldn’t shake it. Chris asked me what would make me feel better and I told him going to the movies. It was a good idea too even in our hopeful times. Our baby’s death was not a certainty. It was possible she could live and if she did she would be medically complicated needing lots of care. If she survived, a night out at the movies would be impossible, so might as well do it while we could.

“Frozen. I want to see Frozen,” I told him.

“Are you sure?” he asked me. “There are likely going to be lots of kids there.”

I was sure- I wanted a movie that wasn’t real and I’ve always been a fan of kid movies. So after a near miss (the first movie theater we went to had lost power), Chris and I found ourselves walking carefully across an icy parking lot to the theater. He held my arm the elbow as I maneuvered my thirty two week belly around.

“I can’t fall!” I said to Chris almost jokingly. “We’re not monitoring!”

In pregnancy, if you fall, especially in the third trimester, it’s standard to be seen in the hospital for some monitoring of the baby afterwards- to make sure there are no contractions or signs of a placental abruption. We had had to make some difficult decisions regarding monitoring of our baby. With no fluid, there was a great risk for stillbirth. The baby’s heart rate could be monitored for signs of distress, but it’s an inexact science and most stillbirths in these circumstances happen practically in an instant. We had the option of being admitted from the diagnosis at 27 weeks and monitored 24/7 or we could do weekly (or any other chosen interval) monitoring or we could do no monitoring. Choosing monitoring meant we were willing to have an emergent c-section- potentially affecting my future fertility- and allowing our baby to be born prematurely. We made a highly researched and educated decision (met with many specialists) that our baby had the best chance of life if she was born after 34 weeks. We chose no monitoring until then, recognizing if she had distress before then we would lose her. Upon admission we would take no chances and I would be admitted for 24/7 monitoring. So at 32 weeks, if I fell, I would have to decide whether I’d want to break that plan and be monitored, risking early delivery if there was distress. On the flip side, if there was distress, we wouldn’t know about it and my baby could die inside me.

“No falling!” Chris assured me as he gripped my arm tighter. The ground glistened with black ice. We slipped and slided with several close calls but made it safely into the theater. I watched Frozen and was delighted.

When Mabel died, my family came for her services. I found a little joy in the innocence that was my niece. At 3 years old, she was rightly obsessed with Frozen. She would sing, somewhat unintelligibly and very much off key, the words to “Let it go” and dance around the living room. She built her very first snowman (a big deal for a kid who has only grown up in southern California) and named it “Snowloff.” In the weeks that followed, long after my little niece left, I found myself saving “Let it go” to my playlist. I’d sing along to the lyrics in my somewhat unintelligible and very much off key voice:

“Don’t let them in, don’t let them see

Be the good girl you always have to be

Conceal, don’t feel, don’t let them know!”

A perfect anthem for my grief.

This week I went clothes shopping. A secondary gain since my daughter died (I hate that term- is there a better one? An unintended benefit?) is that I’ve lost some weight. Extra time on my hands and needing an outlet for my anger and grief has brought me down below my pre-pregnancy weight. I know I am fortunate that this happened this time- in the past I’ve been a very emotional eater and gained when I was down. Now I’ve found that I don’t fit into my clothes. So I finally put the hopes of a future pregnancy aside and decided to invest into some clothes that fit. I needed to look somewhat professional in pants that weren’t super baggy. A quick trip to Kohl’s and I found some duds that fit the bill. As I was headed to the check out, a sweater caught my eye. I had wandered past the juniors department and just kept staring at this one sweater. I went up a size, figuring the juniors sizes would be ridiculously small and tried it on in front of the mirror. I was smitten.

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I like warm hugs

Chris rolled his eyes when I showed it to him at home. He said “o-kaa-ay” in that two tone mild sarcasm when I put it on to wear it out to the movies (now with no baby, we have the freedom to do so whenever we want). But I told him in the car how when I wear this sweater I think of Mabel- pregnant with her skating across the theater parking lot, my niece singing it before we went to Mabel’s wake and the lyrics of it’s main song that was the anthem to my grief. He held my hand proudly in the theater afterwards.

Mabel has her carrots, but she also has Frozen. I know I’m not alone in these comforts- there are Hugo’s stars and Gideon blue.

Do you have something you wear that makes you think of your baby?  

Day 26: Healing Ritual

I have lots of healing to do.  Too much anger and bitterness.  I work with my therapist several times a month on such things.  Before pregnancy I worked with her on my anxiety and some compulsions I had and then in pregnancy she worked with me on my fear of miscarriage and stillbirth and the anxiety around the unknown and poor prognosis my baby was given.  Sometimes we simply did talk therapy and sometimes she worked with me on techniques to deal with my anxiety.  What do you do when your anxiety is justified?  In pregnancy, mine was.  We worked on distraction- it was the best tool I had when things got bad.

There is no set ritual I have, especially nothing I haven’t already mentioned- exercise, puppy, puzzles, etc.  My ritual differs everyday.  My ritual is distraction.

Today my distraction was a book group outing to the farm.  One of our members moved to a quiet corner of the state and we visited her new house (old farm house) and met her new husband and acquired furry family.

#CaptureYourGrief

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Day 23: Inspiration

Midwifery is not just my job, it’s my lifestyle.  I often ask people “so, what do you do?” as a way of small talk.  I recognize that not everyone puts as much weight on this question as I do.  I have been spoiled- once I decided on my career and completed my training to start it, i found myself in a job that was fulfilling.  I get to help change people’s lives- whether it be welcoming their new baby into the world or putting in their IUD so they don’t end up with an unintended pregnancy.

Having an emotionally challenging pregnancy- first accepting the difficult diagnosis of Down Syndrome and then living with the poor prognosis that oligohydramnios  gave at 27 weeks, my view of pregnancy has changed.  Laboring with a baby that I very much wanted to keep inside me, knowing that her birth might also be her death, has changed my view of childbirth.  Helping women in their gyn life- wanting to get pregnant, wanting to avoid pregnancy- it’s all still assisting them in their childbearing life.

Mabel has made my work painful.  My once career-lifestyle has turned into just a job.  I have my fulfilling moments but they are balanced by painful ones.  Mabel has inspired me to look beyond midwifery, to realize that there might be other things I could do.  I don’t know what they are or if i’ll do them.  This inspiration might be temporary, but for now, it gets me out of bed in the morning.

#CaptureYourGrief

I don't know what color mine is yet, but I bet it's purple!

I don’t know what color mine is yet, but I bet it’s purple!

The High Chair

I’ve always been a fan of yard sales. Apparently what you call them hints at where you were raised- yard sale, tag sales, garage sale. I have memories of going with my dad to yard sales- once excitedly finding a Mr. Potato Head! We would hit up the annual town fundraiser, sometimes filling up a garbage bag and paying by the pound. Out of college, I hit up craigslist and estate sales to help furnish our first apartment. The habit continued into grad school and even when I was making a decent salary in my first job, I still was drawn to the yard sales. I often would pick up furniture left out for free on the side of the road, so I am no stranger to other people’s discardings.

After we had our big ultrasounds- the anatomy scan and the heart ultrasound- the ones that told us Mabel didn’t have any of the typical birth defects tht often come with Down Syndrome, I finally felt comfortable enough to start buying some baby supplies. Chris tacked down some secondhand cloth diapers on Craigslist and we nabbed a bunch of those. We drove an hour to buy the carseat we wanted from another ad on Craigslist. We made a trip to try out rockers at Babies-R-Us. We started a registry on Amazon. But when Chris came home one day with a high chair he picked up off the side of the road in our well-to-do town, I couldn’t find my usual warmth for this secondhand find.

Chris was confused. “We’ll bleach it,” he said, knowing my affinity for the cleaning product might sway me. I had already narrowed down the high chair I wanted, looking at reviews and prices. I think in my head I wanted to pick out the high chair special, not get whatever we could find. I agreed to hang on to it, figuring I’d eventually sway him into getting a new one. Until we deep cleaned it, it sat in the basement.

A few weeks later we were given the news that we might not need that high chair. The low fluid diagnosis at 27 weeks did not bode well for our baby and so we absorbed the words of the doctors when they said she might die.  Her kidneys weren’t working and the resulting low fluid would make her lungs small- perhaps too small to support her.  We stopped buying baby supplies. I cancelled my baby shower. We hid our registry. The high chair got moved to the basement.

A few months later, Chris packed up all the baby stuff and hid they in the attic, so I wouldn’t see the painful reminders of my dead baby. The high chair, though, stayed in the basement, tucked deep into the utility room so I wouldn’t cross its path when I did laundry.

Chris and I had a day off this week and ended up using it to simply do housework we had been avoiding. One task we crossed off the list was bringing the big pile of clothes and housewares to Goodwill. I threw the highchair into the car. I wasn’t fond of it before, but now I resented it, a symbol of what I did not get to have. Chris relented and we schlepped everything off to Goodwill. After unloading the bags and boxes, the highchair was the last item he brought to the storefront. He returned to the car with it in hand.

“They don’t take baby stuff.”

So we still have the highchair. I know of a few places that will likely take it, but they will take some extra coordination and trips.   We might just find a dumpster and ditch it, which we both hate the idea of because it’s in fine shape and there are people who would gladly take it.

I now hate that high chair. It’s haunting me.

What haunts you?

Day 17: Explore/ Day 18: Gratitude

“That’s really hard,” my colleague sympathized after I told him some of the things I was struggling with, aside from the obvious babyloss.

“Yeah,” I said with tears stinging my eyes. “My life sucks.” Before he could respond, I continued, “No. that’s not true. My life doesn’t suck. I’m just unhappy right now. I have many things I’m grateful for.”

We are told constantly in the grief community that gratitude is an important part of healing. It is an exercise I try to practice often. I tried to find things to appreciate when I was still pregnant with Mabel and learned that she would likely die. I’ve done two weeks of publically finding 3 Good Things about my day. When I sit down and really explore my grief, where I am in the “process,” I am doing okay. I am sad- some days very very sad. I am angry and I am jealous. But I also am realistic.

I listen to audiobooks in the car and lately I have been drawn to memoirs about people who have survived tragedy- struggles far worse than mine, in my mind. A House in the Sky, a book about a journalist who was kidnapped in Somalia and held hostage for over a year and Finding Me: A Decade of Darkness, a Life Reclaimed: A Memoir of the Cleveland Kidnappings, the story of Michelle Knight’s eleven years in captivity, surviving rape, beatings and starvation by the hands of her friend’s father. Some would call these books depressing and hard to read; I find them uplifting and grounding. They remind me to be grateful for the simple things: freedom, food, a life free of assault.

I have much to be grateful for. I have a supportive family (even if I don’t always respond to their support). My friends and coworkers are understanding and caring. I have a job, and though it may be very painful at times, I can find moments of fulfillment and in the very least it pays the bills. I have met some of the most compassionate and interesting babyloss moms, online and in person, through my journey and new friendships with some especially kindhearted individuals, who aren’t even in the club, have grown. I don’t want for any of my basics- food, freedom, safety- and I have many luxuries. I have a puppy who sits on my lap and licks my hands in affection. But most of all, I have someone who rubs my back when cry in hysterics, who laughs with me in the good times, who said yes to a baby with special needs, who shed tears when the doctors said she would die, who held my hand as we left the hospital empty-armed, who allows me to take all the time I need as I grieve, who visits her grave with me, who pushes me to be social but doesn’t force me into situations I’m not ready for, who wakes up in the middle of the night to take the puppy out when I’m sick, who is just so handsome. I am grateful for him.

#CaptureYourGrief

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Day 13: Season

It was a very snowy winter.  We had bought a snow blower in preparation and got good use out of it.  It seemed like the snow came pouring down every time I was admitted to the hospital.

We had bought a king sized bed- my dream!  I had always wanted one and when we moved into our house with big bedrooms and were expecting a new little person to share time in bed with us, the expense suddenly seemed less frivolous.  I had passed the two major ultrasounds, in my mind, the anatomy scan and the heart ultrasound, so I figured we were safe.  The king sized bed was one our first major baby purchases (from which we would benefit as well).  It was due to be delivered on sunday.  The thursday before I had my ultrasound which showed low fluid and i was hastily admitted to the hospital.  We spent that weekend safely tucked into the hospital room as the snow piled up on the roads.  We had to ask a friend to pull out our snow blower and plow our driveway so the bed delivery truck could make it in.

In the time off my work had graciously given me to adjust to Mabel’s devastatingly poor prognosis, I visited my family for the holidays.  My parents and brothers were up at our family ski house in New Hampshire.  While the Chris and the boys hit the slopes, I waddled around on snowshoes with my mother.  As the snow fell around me, I listened to the babble of the stream beside the trail and took some deep breaths.  It was the first time in those first treacherous weeks that I could really breathe.

Snowshoeing around Christmas.

Snowshoeing in New Hampshire.

When I was admitted again in February, the snow storms continued.  A major one hit on my birthday.  My parents had come down for the day and we were celebrating by getting some lunch from the carts.  In front of our hospital, dozens of food carts from local restaurants set up to cater to the hospital and university staff that seek them out ravenously every lunch time.  They make a killing selling $5 meals of every different kind of ethnic food- chinese, thai, ethiopian, italian, vietnamese, gourmet cheese, sushi, salads, bengali, mediterranean.  I was excited to bypass the hospital menu to get some good eats.  Chris and my dad went down in the heavy snow to seek out which carts braved the weather.  We had two choices- thai and thai.

The next day I used the 45 minutes I was allotted of the monitor to get some fresh, but frigid, air in the Healing Garden at our hospital- an our door space for admitted patients and visitors to step outside.  I never bought a maternity coat- just shoved my bump into the jackets I had.

A quick trip to the Healing Garden to take in all the snow.

A quick trip to the Healing Garden to take in all the snow.

When labor started, it had snowed recently and since Chris was spending his nights with me, our house upkeep was totally neglected.  I asked Chris to stop at home on his way from work to get the special blanket we had ordered for Mabel.  We hadn’t plowed the driveway from the most recent storms and so Chris had to wade through thigh deep snow up to our house to get it.  Mabel was born on a cold winter morning the next day.  Before being discharged, we had to ask our friends to snow blow our driveway again, so we could get home easily.

The snow remained on the ground during the next week as we planned her serviced.  We buried Mabel under a blanket of snow, white and pure.

THe Cemetery: We buried her under a blanker of snow.

The Cemetery: We buried her under a blanker of snow.

What season do I associate with my child?

Winter. Snowy snowy winter.
#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!