Monday, July 20, 2015

Combating Helplessness

I feel helpless---And so do all my friends.  As I try and process my feelings after Adeline's premature birth and death, I think the most overwhelming thing I feel is helplessness.  I feel helpless when I think about the night I went into labor-- How I "fought" for her, and tried to hang on until morning when the ultrasound would tell us what was wrong.  How I reassured her "Mommy's here, it's going to be ok." How she looked when she was born-- everything.  I just feel helpless.

My friends and family are struggling with it too.  What do you say to someone you love when they go through something like this?  What can you DO when nothing you can say will make it better?  I'm writing this blog post because I've come up with some productive ways to combat this feeling of helplessness and I wanted to share them.

1. Adeline's Garden:
I am Adeline's Mommy. Even though I'll never know her, I still feel the need to do nice things for her-- because I love her.  Also-- and this is important--- I really need to build memories around her that are separate from her death.  I'm finding healing in a few activities, which can honor her memory, and also allow me to think of her without focusing on the horror of the day she was born and died.

The first thing I did was plant a garden.  Specifically, I planted a garden over the spot where we buried her ashes at our church.  We requested that she be buried in a more "unloved" section of the garden, so that we could care for it particularity and give it new life.  I makes me feel really good to go out there and sweat. Whenever I bring her fresh flowers from our yard, our just go out there and pull weeds, it gives me a chance to talk to her, and interact with her in a way that's healthy for me.

Here are a few images of the garden before and after. I chose plants that are significant to me, or symbolic, like forget-me-nots.  We also had her grandparents bring dirt and plants from their yard to plant there with her.  Over her grave, I planted three bleeding hearts, one for me, one for Sean, and one for Millie.

After the first round of planting.

2. Hospital Care Packages
The next thing I did was start knitting. When Adeline was born, we brought her to the hospital.  She was already dead, and we had no idea what to do.  Sean and I were swallowed up by shock and grief. The nurses there were very kind, and offered to take her to the nursery and get her cleaned up.  When they brought her back, she was wearing a hand-knitted baby hat. They said it was the smallest premie hat they could find.  It was enormous, but it has become our most treasured keepsake.

Over the next month, I had severe health complications.  The doctors still aren't quite sure what was happening, but almost every night I was loosing progressively larger amounts of blood.  Their best guess is that it was a condition called placenta accreta-- a rare and life threatening condition for mothers. One night, I lost a quarter of the blood in my body in under an hour.  My blood pressure got down to 60 over 30. I had four blood transfusions, and three surgeries. I went to the hospital 7 times.  Needless to say, I spent a lot of time laying on the couch in recovery mode, and also became very grateful for the wonderful doctors, nurses, and staff on the labor and delivery floors who helped me whenever I was admitted.

I decided to put together care packages for the staff (I was at two different hospitals, so there are two care packages) in appreciation for them, and in honor of Adeline.  I started knitting, and I made all sorts of baby hats, and created patterns for them.  Some of the hats I made are sized for full term babies, but others are designed for premature babies, or stillborn babies like mine who were too young to survive.

Each care package had a photo of our family and a note to the staff, 14 hats, a copy of Millie's Book, and a ton of fancy chocolate and other candy. 

Adeline Hat (Click here for knitting pattern)
Sarah's Premie Hat (Click here for Knitting Pattern)
Rainbow Heart Premie Hat (Click here for knitting pattern)

At least for me-- making these packages has created a sense of activity, and a way for me to participate in my grief. My friends have participated too.  My sister and sister-in-law made hats with me.  My friend Elizabeth crocheted 6 baby hats on her summer vacation.  My friend Heather went to the store and bought me the softest yarn she could find, and my parents donated lots of yummy chocolate to the packages. 

3. Leaning on Friends and Family
We have the best Friends-- we really do. There are so many people in our community who have stepped up and asked "can I do something?" I think, like me, people feel helpless and even though they can't make it better--- want to do something to show that they care. A lot of people brought us food, which was a big help.  Still more wrote us cards, often sharing their experience as members of the super secret awful club.  Once, when I had to rush to the hospital, my neighbors invaded our house and vacuumed, did laundry, dishes, and even cleaned out our fridge. Some people walked our dog. Some people watched our kid.  Some people sent flowers or live plants. My mother-in-law stayed with us for a week, and meticulously wiped down ALL of our surfaces, even the ones behind the microwave and toaster ovens.

I'm not saying any of this has cured my helplessness, but every bit helped.  I'm still really struggling with my emotional recovery, and seeking out professional support.  Just this morning, as I was crying and blow drying my hair, Sean came in with a package.  It was from my best friend, Stacy.

I know what you're thinking--Yes, my best friend IS awesome.

It was a beautiful pair of earrings with a supportive and loving note, just to say "I'm thinking of you, and I know you can get through this." It's hard to feel helpless when you have friends like that.

I hope this post is useful to others if you are struggling like me. I hope you can find a positive outlet for your grief and energy.  If you are looking for ways to support someone else, know this-- your kind actions are so important and buoying-- even if your friends are to numb to acknowledge them at the time.

Tuesday, June 23, 2015

The Service

We had a service for Adeline.  It was hands down, the best thing we've done to help us heal.

I am so grateful to have had the support of our priest, Brian-- who not only came straight to the hospital the day Adeline was born/died, but also helped us navigate funeral arrangements and options.  It was Brian who first suggested that we have a service for her.  It was also his suggestion that we cremate her and spread her remains in the beautiful garden outside of our church.

I really hope no one reading this post is going through what we went through. But-- since we know that it's all too common--- let me say this.  I don't know if you are religious or not religious, but for us, having a ceremony of some sort to honor our daughter helped us build memories around her that were separate from the horror of her death. The day of the service was the best I've felt since it happened.

All of the details leading up to the service were hard.  It was agony to visit the funeral home, and even to visit the garden where she would be resting.  During the meetings we had with father Brian to pick out bible verses to read at the service, I was a mess.  Finally, when we picked up the plain, white box that her ashes were delivered in,  I lost it.

In the end, these steps were good for me. I took the plain white box and drew flowers on it (bleeding hearts.)  We wrote messages of love to Adeline, and had friends and family do the same-- wrapping her in the words from the people who cared for her.  We gave Millie a whole side to scribble on in magic marker.

Messages of love scribbled on her cardboard casket

It was a beautiful day when we laid her to rest. I cried much less than I expected and even found myself comforting others. When the service was over, they let me grab the shovel, and I scooped load after load of dirt onto her grave.  I packed the dirt in on top of her and pressed it close with my hands-- this one and only chance I was given as her mother to tuck her in.

In the end, the gratitude I feel for this service is inexpressible.  I am including the passages we chose below in case they are helpful to others.  I also want to thank Father Brian Wilbert of Christ Episcopal Church in Oberlin for guiding us through this process-- so essential to the healing of our family.

Ecclesiastes 3:1-11 (Good News Translation)
Psalm 23 (King James Version)
Romans 8: 18-25 (Good News Translation)
Mark 10:13-16 (Good News Translation)

Wednesday, June 17, 2015

Literally, the Least You Can Do

The Thursday morning after we lost Adeline, I turned to Sean over our morning coffee and asked, "Do you think there is ever going to be a morning again when I don't wake up in tears?"  I know that may sound a little dramatic, but it's really how I felt.

In general, Sean and I are solidly happy people.  We haven't dealt with much grief in our lives, and things have a way of working out for us.  We tend to joke our way through uncomfortable topics, and hard times, and we laugh while we cry, which makes things so much better.

That's why what happened at lunch on Thursday was so great.  We went to a sushi restaurant.

I love Sushi.  Sean knows I love sushi.  When our friend's Matt and Heather were offering to bring us dinner after hearing about Adeline, they asked Sean what I would like.  Sean texted back, "Katie wants Sushi, soft cheeses, and a bottle of bourbon."

At the sushi restaurant, something incredible happened.  We started cracking up.  Here's how it happened.  While we waited for our food,  we went through the large stack of papers the hospital had given us on miscarriage, postpartum depression,  and the assorted prescriptions given to me at the hospital.

In the "miscarriage," Packet there was a small section titled "Advice for Dads." But Sean decided to to rename it--- "Literally-- the least you can do." 

Here is a small sampling of their advice, with Sean's commentary below in italics:

1. You and your wife may be experiencing grief.  Remember to be kind to her.
Hey. Assholes. Don't be mean to your wife just after your kid dies.  This is literally the least you can do. 

2. Remember, your wife may not feel up to cooking dinner.  Try preparing dinner yourself, or ordering takeout.
Jack-holes. Pick up the phone and order a pizza. It's not hard. Also, you are a grown up. Learn to cook one thing. 

3. If you already have children, play with them.

And so it went on.  Sean reading aloud to me, and us cracking up, strung out and exhausted though we were.  The truth is-- I don't know if there ever will be a morning again when I don't wake up crying.  Most likely there will be, but right now the grief is still to fresh.   In the meantime, it's nice to know that there will also be some lunches where we can sit together and laugh.  Even when times are hard-- it's literally the least we can do.

Millie's Book

When I became pregnant with Adeline, we waited for quite some time before we told Mille. We wanted to avoid the confusion it would cause her if we lost the baby.  But, once we were out of the "danger zone" of the first trimester, we happily told Millie that she was going to be a big sister.  She was ecstatic.  Several our our close friends had just had babies, and she loved playing with those babies, and the babies at her daycare center.  Moreover, her two best friends from school had mommies who were pregnant as well, so she had the joy of running around with them, telling anyone who would listen "I'm going to be a big sister!"

So, when we unexpectedly delivered and lost Adeline at 4 1/2 months, we were obviously very concerned about how to tell Millie.  We knew she was too young to understand pregnancy that well, and so the grief probably wouldn't be as real to her as it would to us.  However, we also knew that she would be confused.  She would wonder why we were so sad, why I seemed to be suddenly sick, and what to say when people asked her "Are you going to be a big sister?" As they often did in our small town. 

Here we were really lucky, because Millie goes to an awesome childcare center.  We met with her teacher, and then with the director of her center, Jennifer.   Jennifer called a friend of her's who is a developmental psychologist and had experience in this area.  We pieced together this advice, plus the advice that we got from other resources, and here's what we came up with.

1. Develop a Narrative- Develop a narrative for what happened, and be consistent about it.  Make sure all the adults in her life- parents, teachers, grandparents, neighbors, etc... are using the same language when they describe what happened. Also, make sure this narrative includes being open about how we feel. 

2. Avoid Euphemisms- This one didn't come naturally to us, but it make sense when you think about it. As adults, we naturally want to soften our language when we talk about death to our children.  It may seem like a kindness to say to Millie "the baby is sleeping now..." But that's actually terrifying--- Millie goes to sleep every night.  Will she disappear too?  We can't say "the baby got sick," because Millie gets sick all the time.  What about "We lost the baby?" Millie's two year old brain would naturally want to go and look for her.  No, the kind thing for Millie is actually to explain to her in very clear terms, that the baby died. 

3. Be clear about what to expect-  In our case, we had a service for Adeline, and the Psychologist said that was a really good thing. She said to explain in detail what to expect-- who all would be there? Where would it be held? Would people be talking about God, Jesus, Heaven, etc...? If so, include this language in the narrative using concrete words.  Also, she reiterated to let Millie participate in the grief, and let her know that grownups my cry and why. But, she said to have someone on hand to take her away if people broke down.  She suggested packing a special bag for Millie with her favorite toys, foods, etc... 

With these bits of advice, Sean and I decided to put together a book for Millie. This would ensure that "the narrative" was developed, and it was easy for us to give copies to her teachers, etc and maintain consistent language, message, etc... I'm including the finished book below, which worked really well for us.  I really hope that no one reading this right now is experiencing what we did, but-- since we know it happens every day-- if any or all parts of this book helps you, please feel free to use it. 




We name her Adeline

As we were driving to the funeral home, Sean looked at me and said "Do you think we should give the baby a name?" I burst into tears.  But I had been thinking about this too.

"Yes, I said.  I think we should name her Adeline."

Adeline is the most beautiful name I could think of.  It seems fitting for her, such a tiny and beautiful thing.  Selfishly, it's also a pretty rare name, so I don't think I'll have the shock I would feel of hearing it mentioned all the time, in the same way we would feel if we named her Emma, Madison, or some other trendy name.

When we got to the funeral home, a very polite man with a diamond encrusted wedding ring escorted us to a room with leather chairs.  He filled out the paperwork and Sean answered his questions while I quietly sobbed.

"Did she have a name?" the man asked.
"Yes," answered Sean, "Adeline."
I cried even harder.

The man really was very kind. He told us they would cremate our daughter for $153.00. Which seemed  shockingly low.  We were too numb to process the cost, or anything else really.

I watched the man with the diamond ring write our daughter's name for the first time.  He was filling out the cremation orders.  He asked us if we wanted to send out an obituary to the papers, but we said no.  How could we write an obituary for someone we didn't know?

It was a really hard day, but I think giving her a name was a step in the right direction, for us at least.  It has given us a chance to think of her in a different way--it's been a way to try and give her some of the respect and dignity she deserved, and to think of her as an entity apart from the painful memory of her birth and death.

Start Here

Less than one in 10,000.  Those were the odds of us losing our unborn baby after our last doctor's visit. Those were the odds when I went into premature labor, and battled through twelve hours of painful contractions. And those were the odds when our baby girl was born at home, in the most undignified way possible, with no chance of surviving, but fully formed and sucking her thumb.

It was a girl.  We hadn't known that yet, because I was just 4 1/2 months along. She was one in 10,000.  If she was anything like her big sister, she was probably more like one in a million.  We can't know any of that though, because we never got to meet her. 

Over the last few weeks, we learned a lot.  We learned how much it is possible to cry in a single day. We learned about funeral costs for stillborn babies,  the developmental psychology of breaking the news of a miscarriage to our toddler, and how our awesome neighbors will deliver no less than 3 whole cooked chickens to our house in crisis situations.   I learned to loathe the word "Miscarriage," and that my husband just might be an actual superhero. I learned a lot about "complications," after weeks of scary nights trying to determine exactly how much blood I could lose without having to drive to the ER. I had three surgeries.  I had four blood transfusions.  I developed a new appreciation for the amazing people (most of them teenagers by the way) who are dedicated to donating blood in our community.

I learned more about how I feel about Millie. Wow.

Millie--- one day, when you are old enough, I will tell you about how you saved us on that awful day.  How your two adult parents leaned on you for support. How it felt to take you in our arms and to feel your warm heart beating.  One day I will tell you how your smiling, loving face did more than a million shots of morphine could, although admittedly, I was also on a lot of morphine when I saw you.

I don't know why I feel compelled to share the worst experience of my life in such a public way except a.) I was 4 1/2 months in-- so everyone knew already I was pregnant, and we never really had the option of anonymity. And, b.) The most overwhelming part of this to us has been how many families are affected by this.  So many women have sidled up to me and said, "Welcome to the club--- it's the super secret club that nobody want's to join, but you'll be amazed how many people are in it." 

So here I am.  Talking about it. The club. The secret super awful club. Please don't feel like you need to read any of this. But, it's my guess that a lot more women than most of us realize have been forever changed by a similar loss. It's so messed up--- in a society where we have ACTUAL COMMERCIALS ABOUT BONER PILLS, there is a taboo about speaking out about the death of the children we are carrying with us?  The parents of the 15% of confirmed pregnancies that end in miscarriage each year are expected to go to work the next day, pretending everything is fine.

Even the word "miscarriage" is insultingly tidy.  It sounds like something from a Jane Austen Novel. "....And then, Baron Boatright handed the Viscountess into her miscarriage and she drove towards her lodgings on Chambers street."

Ugh. Please don't say that to a woman: "I'm sorry to hear about your miscarriage." Instead, be a real human and acknowledge her experience.  First of all, acknowledge the fact that, most likely, there was a birth along with that death, and that what she went through was probably not clean or painless.  Second, acknowledge that a life she was looking forward to is lost from the world.  Say to her, "I'm sorry that this tiny person, who you were hoping to hold, and tickle, and put on restriction, and fight with about politics, is gone from the world.  Or, "I'm sorry that this person you were hoping to watch quietly as you slipped into your elderly years--- this person whose visits and photographs would occupy your aging mind-- this person who may even be there with you when you pass--- this person is gone now, and never will be." Say that. Or-- better yet--- don't say anything. Except "I'm sorry," or "I love you," or, "I'm here for you when you need me."

I had a woman (a hospital employee no less) say to me recently-- "I guess it wasn't meant to be."

Don't say that ever.

And women, please talk about this to your families.  Tell your daughters.  Tell your sons.  Tell your employees so they know that they can approach you if they come into a similar situation.
When I was a little girl, I learned all about my grandmother's family history. I  learned about her childhood as the daughter of german immigrants. I learned about the death of her younger sister, Jacqueline-- who was hit by a train.  I heard the story of her two dogs-- Dixie and Dolly- who rolled in some dead shark over a camping trip at the beach.  (I heard that story probably 1,000 times.)  Guess what story I never heard, not until recently?

Until recently, I never heard the story of the child she lost at 18 weeks--exactly the same as me. I never heard how she went into labor far too early and experienced the horror of giving birth to a baby who could not live.  She was in bed for two months.  She almost wasn't brave enough to try again, but-- thankfully for me-- she did and had my father.

I'm not trying to criticize my grandmother or other women who keep these things quiet.  What I am trying to say is that the societal taboos that make us feel like we have to keep these things quiet are unhelpful.  At least in my case, I'm choosing to tell my daughter a different story.





For more information on why we chose to present this information to Millie in this way click here.
We are still battling through post-partum and other emotions, but for an update on how we are doing, click here.
For information on the service we had, along with a list of bible verses, click here