Thanksgiving

My Nana died when I was 14. She gave me a suede brown shirt the year before she died. She taught me how to play poker. And she made the best eggs-on-a-raft (a toad in a hole, to others). She also hosted Thanksgiving for years and years. One holiday, the event was big enough that we divided up into two tables. Someone had the bright idea to have a lottery system; rather than dividing up into the sensible kids and adult tables, we all drew numbers, with most landing at the dining room table and a few unlucky souls ending up at the less desirable kitchen table. I scored a seat at the main table, but a great aunt was stuck in the kitchen. As we prepped and got ready for our seats, my dad pleaded and bribed me to swap seats with my elder relative. Little stinker that I was, I stubbornly refused. I must have seemed like an incorrigible kid, but really I just wanted to sit at the same table as my Nana. I would have sat in the kitchen easily if she was seated there too.

When my Nana got sick with cancer, she moved in with her daughter, my aunt, who took over Thanksgiving that year and has since hosted.

Today is a day when we are supposed to be outwardly thankful, announcing our gratitude frequently and publicly. I have spent the past nine months working hard on finding gratitude on a daily basis- today I’m taking a break. It’s not that I’m not grateful-I have so much to be thankful for- health, family, friends, work- but I’m feeling rather melancholy. I woke up thinking of my Nana. I made myself an egg on a raft in her memory.

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Mabel is of course on my mind. This time last year I was pictured attending the next year’s Thanksgiving with a baby. She’d be wearing little leg braces for her clubbed feet and would be still working on eating solid foods. I was optimistic, but realistic. Today, after some debate, I will attend my family’s Thanksgiving. It will be hard, as I go through the motions of living out the next holiday without my baby.

Every action today is a reminder that my baby is not here. I will go be with relatives whose lives have moved on while mine has stood still. I’ve debated skipping to simply avoid the pain, the memories and the reminders- but there are some things I have to face and it’s time. If it’s too much, I’ll simply leave. For now I’ll focus on the good food in my near future. I look forward to the carrots my mom makes every year.

My therapist said it best as we said our goodbyes last week- I hope you have the best Thanksgiving you can.

What is Thanksgiving like for you today?

singsong baby voice

She sat across from me in my office.  Clearly excited about another pregnancy, but also distracted by her one year old.  She used that baby voice- the kind that is singsong, the rises and falls of her tone easily grabbing the attention of her toddler. My questions interrupted her playful talk.

“Any family history of thalassemia? sickle cell? congenital heart defects? Down Syndrome?”

She answered easily without taking her eyes of her son who was exploring the bookshelf, then the chair, then the picture frame.  I was very attentive to their interactions, ones that would solicit coos and oohs from most people, but from her perspective I likely seemed immune.
All I could think was- my baby died.  I will never develop that singsong voice with my baby. She’ll never explore a doctors office like he was.  This child was three months older than what Mabel would have been and he was developmentally age appropriate.  He did not wear leg braces to correct clubbed feet or have any marks from heart surgery or kidney dialysis.  I realize that the pairing of this mother and her healthy child would never have been like that of me and my sick one, had she lived. I grieve not only the child she would have been, but also the child I  know she wouldn’t have been.  I was jealous of this mother and her seemingly easy parenting.  It was hard not to think it was being flaunted in my face, though I do recognize she had no idea the pain it was causing me- and I didn’t expect her to.  She was just doing what she should be doing, mothering.
Where have you seen pain in day to day interactions?

Day 27: Express

36+2

Today I have been without Mabel more days than I had been with her. For 36 weeks an 1 day she was safe. Despite the low fluid, my body nourished her, grew her and comforted her. All her needs were met and she wanted for nothing. She was safe. She didn’t need kidneys or lungs- my placenta did all their work for her. Her clubbed feet fit nice and snugly in my uterus. The holes in her heart made no difference- just added to the flow. Her extra chromosome was invisible inside me. I would have kept her in longer if I could. A few days before labor I asked if we could push out my induction for two more weeks and was thrilled and relieved when my high risk doctor and midwives thought it was a good plan. Mabel thought differently. She decided at 36 weeks that she her time inside me was up. I like to think that had she stayed inside longer, she might have died or had such distress I would need a c-section, and so she chose to come on her own so that I could meet her alive and have the vaginal birth I had hoped her.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

Today is 36 weeks and 2 days since that day. She has been out longer than she has been in. In a few more days she’ll have been buried, in the dark of the earth, longer than she had been snuggled in the dark of my womb.

Her memory fades with time. Sometimes it’s hard to believe that she was real- that this really happened. Holy sh*t, I had a baby. I was a mother. My daughter died. I don’t remember what it felt like to be big and pregnant except for the random phantom kicks I still get. They are sparse and an awkward reminder because my baby had no fluid, so she wasn’t the biggest kicker. My pregnancy almost feels invalidated by her death. No one will ask me about my experiences when they are pregnant for the first time. No one will seek my advice. No one will ask for baby clothes hand me downs. And then they’ll have their babies and I ‘ll be even more useless, because though I had a baby I know nothing of parenting a live child- unless of course someone wants advice about taking their baby off life support.  I know a few things about that.

I thought I would do something to mark the day I turned 36 weeks and 1 day without Mabel, but the day came and went. It feels like my due date felt- an end to something that I don’t want to end.

Today I’m sad that the time I will be without my daughter will continue to grow longer and longer but my time with my daughter will forever be shorter.

#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!

 

Walks in honor of Mabel

One year ago this month, Chris and I learned that our unborn child would have Down Syndrome.  We accepted her with that news and all that the diagnosis would bring.   We loved her when we saw that she’d have clubbed feet.  We loved her when we discovered her kidneys weren’t working.  We loved her when they told us her lungs might be too small.  We loved her even though we knew we might lose her.  And we loved her when we said good bye after six short hours with her.
To honor her, we are taking part in two walks that are very important to us: The Buddy Walk supporting the CT Down Syndrome Congress on September 27 and Footprints on Our Heart Walk supporting Hope After Loss, my local bereavement group for perinatal loss (which has been so very helpful) on October 5th.  Please consider donating or joining us in either or both of the walks as a way to support us in the joy that was our daughter and the sorrow we have in her loss.
Buddy Walk:
(we are joining team Jenna’s Journey-  headed by five year old Jenna, who has Down Syndrome and who I helped bring into this world!)
and
Footprints on Our Hearts Walk by Hope After Loss

The foot photo/my baby is not a monster

On bulletin boards in our offices hang photos and birth announcements of many of the babies we have delivered over the years.  Patients like seeing their children’s faces up there and most people smile and gaze at the cherubs in the photos as they pass by.  At this point in my life, I avert my eyes when walking past.  In the lunch room in one of my offices hangs the birth announcements of those who work there.  I sent each of my offices a thank you card, telling them how grateful I am for the support they have given me through a difficult pregnancy and the death of my daughter.  I enclosed a 4×6 photo collage of my favorite pictures of Mabel.  There in the lunch room, next to the announcements that are now 9 months old and three years old is my thank you card and the photo.

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I had suspected they would put it up and I am very thankful and warmed that they did.  But seeing the photo there made me sad.  It hung next to photos of two babies that lived.  Their babies were smiling, eyes wide, gleeful.  My photos showed either a baby that was sick, attached to wires and a vent or a baby that was dead or dying.  The contrast was painful.  And their babies’ faces adorned beautifully crafted birth announcements.  Mine was a glossy photo from CVS.  Another contrast- I didn’t get the professional photos or make a formal paper announcement.  I would have, if she lived.  But she didn’t.  I know I can still make a formal birth/death announcement (I still might), but it feels a little silly now that I’ve mailed photos with all my thank you cards.

And then there are the feet.  My baby’s feet were beyond cute.  I would even venture to say, surprisingly cute.  I was worried they would look funny because they were clubbed and the lack of fluid would make them even more distorted.  But they were adorable- clubbed, yes, and still adorable.  She had the kind of toes you just wanted to kiss and nibble on.  My doctor took a photo of her feet, which have now because an almost iconic Mabel photo.  It’s adorable.  BUT I cringe when it’s the only photo used to represent her.  When I made the sign for my office, I wanted to put a photo of her on it to make her more real.  People suggested the foot photo, but I declined.  I wanted people to see the face attached to the story.  I also know a photo of her feet is hanging in my midwives office, which I appreciate greatly, but also think she deserves to have her face up there too.

 

those feet

those feet…

She’s more than just those feet!  When other mom’s show off their baby’s photos, you don’t only see the foot ones.  My baby has a face.  She was just as real as anyone else’s baby.  When the feet photo is used alone, it makes me feel like people think my daughter was a monster.  She wasn’t!  She was not deformed.  She was cute!  When I want to show her off I show a photo taken after she died, when the vent was out, so you can see her whole face.  I’m not totally out of touch with reality- I know looking at a photo of a dead baby, with the unusual coloring and slackness, can make some people very uncomfortable, so I show it in black and white.  I may be fooling myself, but I think it’s hard to tell she isn’t alive.

Mabel

The foot photo has its place.  I love that I have it as a “safe” photo- when I want to represent her in a way to protect her privacy.  The feet will show that she’s real, but I don’t have to give in to people’s voyeuristic impulses.  I’ll show her face to anyone and everyone who wants to know about her.  But I want to protect her from people who want to look at her, like they would look at photos of someone mangled in a car crash.

I am just like any other proud mother.  I want to show you my baby’s feet and I also want to show you her face.  Look what I made!

The “if our baby dies” vacation

Chris and I were leaving one of the many ultrasounds after the oligohydramnios diagnosis.  Still the kidneys looked small.  Again there was no fluid.  The doctor had given us a potential theory on what had happened- an obstruction that led to kidney damage.  I think we needed to hear over and over again that her kidneys were damaged to really understand what that meant for our baby and our lives.  We walked out of the building talking about dialysis.  We had learned that dialysis for a baby is a daily undertaking.  I realized that if my baby lived, she would likely daily dialysis until she was big enough to get a transplant- at age 2 at the earliest.  That meant essentially we wouldn’t be leaving the house for two years.  No vacations, no trips across country.  I wondered if we would be able to make the 2 hour drive to my parents’ house.

People I know who have had a baby often lament how hard it is to leave the house.  A night out with their partner sans baby is an unusual event.  They can’t remember the last time they even stepped foot in a movie theater.  When Mabel was diagnosed with Down Syndrome, we knew that she would need extra services- therapists of different specialties that would come to our house or her daycare.  We looked into daycares that have worked with special needs babies and the Birth to Three program.  I found a baby sling that was made for kids with Down Syndrome in mind.  I looked into learning sign language and setting up a special needs trust.  We knew that she’d be in leg casts for weeks and then strapped into a bulky leg brace for 23 hours a day, so I thought about what kind of clothes she could wear and whether cloth diapers would be appropriate for her and her little clubbed feet.  So when Mabel was diagnosed with kidney issues, I tried to envision what I could do to prepare.  This preparation was all mental, because we wouldn’t know what we were dealing with until she was born.  I envisioned taking a long leave from work, giving up attending births, leaving my job entirely to care for my baby.  I would be home for my baby.

I never had the opportunity to worry about when I’d ever see a movie in a theater again.  It was a given that we would be pretty much homebound.

So as Chris and I were leaving that ultrasound, we wondered should we go away?  Right now.  We had two weeks before I was to go into the hospital.  Could we make a trip happen?  It was the middle of winter, so the idea of some place warm sounded blissful.  I was 32 weeks pregnant with a high-risk baby, so I didn’t want to travel far and didn’t think getting on a plane was a good idea.  And Chris and I had missed so much work so far, we were hesitant to take more time off.  So we nixed the idea.  I asked Chris in that parking lot, if our baby dies, can we go somewhere?  To get away, reset and forget all this?  We would go somewhere warm.  So in some messed up way, if the worse thing possible happens, if our baby dies, we would have something to look forward to.

Chris and I are going to Fort Lauderdale for four days.  We leave today.  We plan to sit on the beach and do nothing.  This was that something I am supposed to be looking forward to.  I am and I’m not.  We are going on our “if our baby dies” vacation.  How do I look forward to that?

The statistic

I wrote this email on 10/30/13. It was from me to another pregnant woman who recently received a prenatal Down Syndrome diagnosis.  This is my second email to her.  In the first I introduced myself and reached out to make a connection.  She responded pleasantly but with a different coping mechanism than me.  She was relying on her faith to help heal her baby, who was given the likely diagnosis based on a blood test and ultrasound findings.

 

“No I do not think you’re crazy!  I think when we are given difficult diagnoses, we all look for ways to adjust and cope.  If I were religious I would be relying on my faith too.  I’m finding my own ways to cope.  I’m not sure if [our midwife] told you, I am a midwife myself and so as new things came up by ultrasound I coped by diving into the internet, research, journal articles and medical opinions.  Which was both good and bad at first. Sometimes it caused me more worry than I needed.  Now I only research the most important things and I’m spending more time making connections with people in similar situations and learning about their experiences.  I”ve been on some down syndrome message boards on facebook- which have been nice. And I’m a reader, so I’m reading some books- Bloom By Kelle Hampton and The Shape of the Eye by George Estreich.  And I”m a talker- I’m surrounded by medical people at work and so its nice to be able to talk to people who I dont have to explain everything to.  It can also be hard because at the same time I’m surrounded by pregnancy and can never really escape thinking about my situation. 

 

I can also understand about ultrasounds-  they are not perfect and I find myself hoping for the best too.  They saw an enlarged bladder on ultrasound and now its resolved.  They also see clubbed feet, but some people have told me that they were told their baby had clubbed feet on ultrasound too but turned out feet were fine at birth.  So there is always hope.  In the meantime, though I am hopeful, I am also preparing for clubbed feet, until I know more.  And I’m throwing myself into preparing about the down syndrome diagnosis, because we had the CVS, so I do know that for certain and it is nice I have something certain I can hold on to- because there is so much unknown.  

So, my apologies if this is rambling (i’m a talker).  Its just nice to know someone who probably has been having some similar thoughts and struggles. And to see how other people deal with them. I agree, it does take a special person to take news like this and look to a bright future, however we envision it.”

 

This woman recently had her baby.  I know that much.  Her baby lived and mine died.  I look back on this email and my heart aches for the person I was when I was writing it.  I had been scared of the Down Syndrome diagnosis and all it brought, but I was hopeful.  I was trying so hard to accept.  I look back and think how optimistic I was.  I don’t know any more about this woman and her baby- whether the Down Syndrome diagnosis was confirmed at birth, whether her baby had the birth defects they suspected on ultrasound.  I’m not sure I want to know- because I’m jealous.  And the unfairness of it all really hurts.  I had accepted what was given to me as fact and went with it.  And my baby dies?  And someone who was hoping for a different outcome gets a live baby?  I hope this doesn’t sound like I wish something bad to have happened to her baby.  It’s the opposite- I’m glad her baby lived and I hope she is doing well.  I just wish mine could have too.  I feel like I earned it.  Or maybe not?  I remember feeling lucky compared to her because her baby had suspected heart defects seen on ultrasound and mine didn’t.  That hurts to think about now.  Was I too arrogant?  Would she think that maybe my baby would have lived if only I prayed about her more?  Should I have prayed?

 

These are just questions that run wildly through my head.  I know there is no reason to it.  I know it’s just numbers- chance.  I’m not a statistic, I’m the statistic.  1/625 risk of Down Syndrome. 3% risk of renal defects in children with Down Syndrome.  If I did my math right that’s a 1/100,000 chance of this happening.  This is the only way I can think to cope.  What are the chances of it happening again- 1/100,000.  I can’t win the lottery twice, right?  I’ve had enough unfairness. Enough.

 

I’m going to try to remember my own words, written by a more hopeful, optimistic me.   Though today it’s hard.

 

“it does take a special person to take news like this and look to a bright future, however we envision it”