World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

***

In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

 

Good Bye, Paul

My friend Paul died this week. To be honest, I was not very close to Paul. I probably haven’t spoken to him in ten years, but social media has kept me connected in that voyeuristic kind of way and I have followed his story the past couple years. His death has hit me hard for such a long ago friend and it has ripped me open a bit.

I first met Paul, or Pubby, as he was introduced by his long-standing family nickname, at a summer camp I worked at during my college summers. It was an alumni family camp for my university- staffed by current college students. Job positions were competitive- hundreds applied for sixty spots and those accepted were often known for their creativity and outgoing nature. The fun from those summers spilled into the school year as well, as my new group of incredibly bonded friends reunited on campus. It was like Dirty Dancing- but wilder and more fun- skinny-dipping, costumes, secret parties. Once I became “Staph” I joined a community of welcoming, free spirited people to whom I was always bonded, for years to come. I became instant friends with Staph from years past, even if we never worked together, simply because they were part of the community. I think Paul and I overlapped one summer there- he was a few years older- but I do remember he was a bit of a legend, as many of the older Staph were. I even kissed him once at a party, because that’s the kind of place it was- kisses were given out rather freely. I often told friends that little tidbit, because I was just so proud that I once kissed someone like Paul.

When went to midwifery school, I was accepted to a good program in a city in CT, I arrived at the school with my tiny car (one of those new VW Beetles) packed with all my earthly belongings. I came site unseen. I had interviewed over the phone and had only driven through the city on the highway, remembering the reputation it had as being a dangerous place. I left my car parked on the street and walked timidly around the med school campus trying to find the dorm I would be staying in. I was terrified- I didn’t know anyone or anything about the place. I thought my car would be broken into. And as I found the dorm and was walking up the path, I spotted a familiar person sitting on the lawn outside. “Pubby!” I walked excitedly to him and was greeted with a hug. He was in med school there and having lunch with another med school classmate (also former Staph, no less). He was such a warm welcome on my eyes, and my fear of this scary city began to fade- because I knew someone, someone nice and cool and welcoming there. He made my first day ok.

Throughout those years I saw him on and off, mostly in group settings, though I remember having dinner with him and his then girlfriend, now wife, Lucy- and I always still felt that sense of awe for being friends with someone like Paul. I guess I felt like he was out of my league in a way. He never made me feel that way- it’s just that he was so smart and funny and simply just cool. He and Lucy moved away to California for residency and I stayed behind in that fearful city I grew to love. I kept tabs, like everyone does these days- through facebook mostly. That’s how I learned of his illness. He was at the end of his neurosurgery (yes, brain surgery- he was that smart) residency when he was diagnosed with lung cancer. Lung cancer. A non-smoking physician in his mid 30s. What? He was a rarity. He continued to practice and wrote a lot about his unique diagnosis and how it affected his thoughts on the world, on medicine. His words and his story were fascinating, coming at a time when I needed to hear them. I didn’t talk to Paul directly during this time- just occasional messages on his health update blog, but I followed his publications. His wife even reached out to me while I was pregnant and while I was grieving and we corresponded a bit.

When I was pregnant with Mabel, he wrote this piece, which struck me. The uncertainty of prognosis. Here’s someone like Mabel- diagnosed with a rare disease, so unlikely. No real prognosis can be given. He understands that. But look! He’s living, beating the “odds.” Paul’s diagnosis and continued life gave me hope for my baby. And then my baby died; she didn’t beat the odds, but not everyone can. But Paul was doing it. When he and his wife announced their pregnancy after Mabel died, I didn’t cringe in the way I normally did when others announced such things. I actually thought, “good for them.” Maybe a little part of me was envious because I thought Paul would live- but they understood struggle, so it was ok.

I can’t believe he’s dead. He was young and fighting a rare disease. He wrote about his struggles so prolifically, beautifully, thoughtfully- I thought perhaps writing the words themselves could somehow stave off what apparently was inevitable.

My facebook feed is filling up with photos of Paul and his articles. My first instinct is that I want to look away- it is just too sad. But I don’t. Because I know Lucy can’t look away. I couldn’t look away in the early days after Mabel’s death and I envied those who could just go about their normal lives without the heavy burden of loss. They could feel sad on their own time, while I was trapped in a prison of grief- hard enough to simply be there, but worse to be there alone. It reminds me of when people say “I can’t imagine what you’re going through…” The thing is, I can imagine it. I don’t know what she is going through- my husband has never been diagnosed with a terminal illness, never died. But I can imagine it. I can imagine the sorrow and it’s terrifying. I have actually imagined losing my husband- because that’s what the death of a loved one does- it made me worry about losing anyone close to me.

Lucy announced that Paul passed away with their baby daughter resting on his chest.   The imagine… it’s the mirror image of my loss last year. My baby resting on my chest as she ceased to breathe. Paul’s daughter resting on his chest as he ceased to breathe. So beautiful. And so so wrong too. Babies aren’t supposed to die and babies’ dads aren’t supposed to die.

I am so angry at the injustice. This post is about Paul, about Lucy, about their baby. But clearly it is about me too. I wanted to write an unselfish tribute to this man, who touched so many lives both before and after he got sick and I hope some of that came through. He wasn’t supposed to die.

I think of Lucy, and her family of three- though one is now here only in memory and I think of myself and my family of three, though one is now here only in memory. Paul will forever be tied in my mind to Mabel because their stories are so different, but also so similar. Good bye, Paul. I wish you were here.

one of his most recent pieces….

http://stanmed.stanford.edu/2015spring/before-i-go.html

An interview years ago… (scroll down to the “His Girl Lucy” section.  so worth it, I promise)

http://www.thequietquiet.com/archives/doctor_paul.html

 

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.  

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.

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.

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.”

• Flowers at Mabel’s grave

• 

  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…

• Gifts for children’s hospital in Boston and Indianapolis
• Shoveling neighbors snow in Massachusetts and Connecticut
• cards! so many cards!
• 
• 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
• 
• 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
• 
• Letters from Thai high school students
• 

Gracious in Grief

I am not gracious.

There is an ideal bereaved mother image I have in my mind- she is gracious through her grief. Yes, she is sad and angry, but her feelings are directed in productive ways. Her anger is anger at the world in general, that circumstance would let her baby die. She is not angry at other people for having babies after her, for getting pregnant easily, for being joyful instead of scared in their own pregnancies. She is sad, but her sadness is pretty- the kind that makes people want to wrap their arms around her for comfort, not avoid because they don’t know what to do with such ugly sorrow. She understands how hard it is for others to understand babyloss and so gives them leeway when they do avoid. She is easy to forgive, understanding in others reactions and expressive of her grief in socially acceptable ways. She holds other babies easily, not thinking of how they remind her of her dead daughter. She can be genuinely happy for others in their family announcements, rather than cringing, cursing the world and letting her deep jealousy show. She is able to separate her loss from others gains- she does not see the face of her dead baby in those born around the same time as hers, she is able to return to work, full fledged caring for other women in their joys, while she suffers her sadness at home. She is like that bible verse, recited at weddings “She is patient, she is kind. She does not envy…” She is gracious in her grief.

I am not gracious.

Do you ever wish you could grieve differently?

The anger-sadness balance

On New Year’s day I sat on my couch, scrolling through my old facebook posts. I was looking for my New Years post from the previous year as a comparison to how I felt this year. A year ago I thought I had been through the biggest rollercoaster of my life- finding out I was pregnant, learning about Mabel’s Down Syndrome, embracing and preparing to raise a child with special needs and then learning my baby’s birth defects might not be compatible with life. It was, at the time, the worst year of my life. I was unsure how 2014 would turn out and low and behold it turned out to be worse. Some beautiful moments- the birth of my daughter followed by the darkest, her death and the grieving that came with.

In my scrolling, I came up across the posting about her birth and death. In reading the words I had written and gazing at the photos above them, I was struck by sadness. I couldn’t believe that it all had actually happened. That I actually had a baby. That she actually lived. That there was a moment when she had been placed, warm and goopy on my belly just seconds after birth. That she lay quite still on a warmer, struggling to breathe despite numerous tubes and interventions. That we actually had to tell the doctors that we were ready- ready to let her die. That she actually died. That we actually buried her.

Tears ran down my cheeks. Wanting to really let myself really feel the sadness, I then pulled up the video I had made:

I cried and I cried. I also cried because I realized how long it had been since I cried like that. I have just been so angry, there hasn’t been any room in me for sad. I know more sad is needed, but I can’t seem to force it. So how do I do it? How do I balance anger and sadness? How do 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

She came to me in a dream

She came to me in a dream last night.  I’ve known many bereaved mothers who have hoped to dream of their children.  I think what we want is for our child to appear and let us know everything will be alright- for them and for us- to be reminded of their faces in 3-d, not just flat glossy photos.  I’ve had several dreams about my Mabel.  They are quick, never lasting long enough.  One where she was alive and I was nursing her.  One where I traded her in for another baby.  And then last night.

We were in the hospital, the NICU, and I could take her home.  My younger sister was in a wheelchair with her in her arms, both of them being wheeled towards the exit.  I put my face down close to Mabel’s and she smiled and reached out to grab at my hair.  I smiled because I could take her home.  We were going home, all together, as a family.

This might be the kind of dream others like me hope for.  I could read into it and claim all sorts of messages.  But truth is, I didn’t like dreaming of her.  This one was a good one; I was happy!  So very happy I could take her home.  But then I woke up to reality- that life where she did not ever meet my sister, where she didn’t smile or reach out, where I did not take her home.

These dreams just leave me sad.  The only interpretation I can give is that my dreams play out my anxieties and my emotions throughout the night- sometimes they are fantasy, sometimes reality based.  I dreamed I got to take her home, because that’s what I think about all day- I wish I could have taken her home.

The highs and the lows

I came away from my support group last night on a high.  It’s the second meeting of this particular group and I was looking forward to it.  It’s a funny bond to share.  There are people in the group I really like and we are slowly forging friendships.  It is so comforting to talk about my baby easily- talk about the good things and the sad things.  No judgment.  No worries about whether mentioning her name will kill the conversation.  No secret burdens to bear.  I shared my excitement about some future projects I want to develop to help this new community I have found myself a part of.  I drive home grinning, thinking about how one of the familiar faces at the group looked at me and said, “It’s good to see you smiling.”  I usually cringe at comments that mention how good I look.  I interpret them as relief that I’m better; that I’m no longer sad about my daughter.  In this group of the babyloss, I know that they don’t think that.  They are not over their sons and daughters and never will be, just like me.  They know that I’m not better- I am just different.  I drive on, thinking about how much I like these people, wondering how to incorporate them more in my life.  They round it out.

And then I come home.  I see on my very carefully selective social media feed the hint that someone is in labor.  I am reminded once again how I have no baby.  The world goes on.  The newborns in my family now number two in one week.  It was due to come and at least it’s over.  I no longer have to wait on bated breath wondering how I will feel.  I am in it.  That gorgeous, freeing high I had felt just moments ago is lost.  I am angry.  Angry that I am alone in my sorrow.  Angry that I had finally felt some sense of peace and it was ripped away from me.  I am a puddle of tears heaped on the floor of my living room, the laundry needing to be folded pushed aside, the glass of wine on the coffee table forgotten.  I hate this!  I hate this!  I scream in my head, teeth gritted as the howls come out.  As I lie on my side, curled up in a ball, chest heaving, hands covering my face trying to hide the stream of tears, I think if only people could see me now.  THIS is how it feels to have buried your baby three months ago. THIS is how I am. 

The low continues on.  Sleep can often reset my emotions- a new day, a new outlook.  But as I sit at my breakfast table, looking out on my sun streaked lawn, facing a beautiful day, I find myself in tears.  Angry, forceful tears over how I spend my days reading online posts about babyloss and grief.  Sad, mean tears over how my bereavement group is the thing I look forward to most these days.  Lonely, hot tears over how buying a bouquet of flowers for my daughter’s grave is the only way I know how to mother her.  Today’s sunshine is lost on me because I am sad.  So very very sad.

I miss my daughter.

The Worst

When I was trying to get pregnant, every time my period came I was so disappointed.  I thought that that was The Worst.   The worst thing possible.  I would see patients, pregnant and not even realizing how great it was.  Then when I became pregnant and had an ultrasound that suspected I was miscarrying, I thought, nope this is The Worst.  I went to work nauseous and devastated, carrying this secret. When we found a heartbeat a week later I was thrilled but had that constant fear of miscarriage in the first trimester. I knew what it felt like to think I was losing the pregnancy and going to work everyday.  I didn’t want that again.  I thought then that living those first trimester months in such anxiety was The Worst.  Then at the first trimester screen, the 13 week ultrasound that was supposed to give me reassurance, I was told that there was something wrong.  I thought those two days of waiting to see if my baby would have a chance at life were The Worst.  When I got the results it was Down Syndrome, at first there was a little relief, thinking at least my baby could live.  But learning the risk of stillbirth made me think that going through pregnancy worried about a 12-20% chance of loss was The Worst.  At 27 weeks, learning my baby’s kidneys were failing and lungs would be compromised and my risk of stillbirth skyrocketed, I thought that was The Worst.  Now that I’ve survived a pregnancy with the knowledge that my baby might die and then holding my tiny, warm baby in my arms as she took her last breathes, I know that that’s not The Worst.  I’ve learned that whatever life hands me there can be something worse.  I’m scared.  I’m scared that I might not get pregnant again.  That if I get pregnant I might miscarry.  That if I don’t miscarry, I might lose the baby later.  That I might lose Chris in someway.

I don’t dare say that losing Mabel was The Worst.  I don’t want to tempt fate that way.  Losing Mabel was and is awful beyond words, hurts in a place deep in my chest that I never knew existed, seems unsurmountable at times.  I wrote earlier in pregnancy that I didn’t dare complain about anything because I was just so happy to be pregnant.  I worried that if I complained, fate or the universe would take it all away.  Well, I don’t think I complained that much and look what happened.  I know that there are so many things we don’t have control over, but it just hurts when you want something so bad, have done everything right, have come so close and you don’t get it.  I tried to be a good person- to plan ahead, treat my body right, to say yes to everything that was handed to me.  Everything.  I thought that if you’re good to the universe, the universe will be good to you.  I’m still waiting for my good.

I’m angry.  Why did this happen to me?  Why do some people have babies they don’t even want?  That they didn’t have to work for?  Angry that I have to watch Chris play so brilliantly with other people’s kids, when he should have one of his own.  Angry that I have all this love, energy and devotion saved up for my child with special needs and medical issues and no outlet for it.  I’m jealous.  Jealous of the people who are sleep deprived because a baby wakes them up at 1am, 3 am and 5am.  I’m jealous of the women who wish they waited more time between their kids, to have the luxury of being stressed about the work of two kids.  I’m jealous of the women who are still pregnant, with the baby in their ribs and pushing on their bladder.  I’m sad.  I’m sad that I had to bury my baby. I’m sad that she only knew life on a ventilator.  I’m sad that my daughter will never see the inside of the home we bought just for her.  I’m sad she won’t snowboard or play in the fort her dad would make for her.  I’m scared.  Sacred to hope things will get better, because hope has disappointed me.  Scared of whatever “worst” life has in store for me.

I’m angry and jealous. I’m sad and scared.  And waiting for my good.

So much love.

I’ve never felt so much love before all this.  I thought I had- when I got married, when I was hospitalized (between the care packages and the visitors, I didn’t have time to be bored).  But I’m feeling it even more now.   Phone calls, texts and emails.  Comments on the blog.  Visitors who look at pictures. This is what gets me through the day.

 

“Condolence cards…  felt like oxygen, and only now do I fully understand why: to know that other people were sad made Pudding [my stillborn son] more real.” –Elizabeth McCracken

 

The cards have been pouring in.  And I savor every one.  I read the printed words and the handwritten ones.  It amazes me that there are so many different cards made to send to people who have lost a child, a baby, a daughter.  The have come from so many people.  My community has rallied- cards from people who I work with in the hospital and office.  I am surprised by some of them, people from other practices, people who came to calling hours, friend’s mothers and my parent’s friends, whom I’ve never met.  It’s lovely.  We now have a stack of cards next to Mabel’s photos and I want to tell her, see how many people wanted to meet you?  One of my midwives wrote in a text, “Amazing how attached one can feel with no time to get to know her.”  All this love makes me think of the times I didn’t send a card to someone.  That will change.  To know others are still thinking about me, about Chris and I, about Mabel, makes the days a little more bearable.

 

When people cry….. Hearing how others heard the news consoles me in a way.  Hearing how they cried when they heard about little Mabel.  Some still do when talking to me.  It helps.  Their tears make Mabel more real.  They validate my sadness.  This really did happen and it is really really sad.  It’s ok for me to be sad.  Because burying your child is one of the hardest things to do.  Because babies are supposed to live.  Because I have dedicated my career and lifestyle to help other people have babies and I should get one too. Because this just sucks.

 

I’m trying new things- the things that help others.  I did a hot yoga session with a friend (I should probably call it warm yoga- it was hot for me, but apparently it’s one of their coolest classes).  Yoga helps her distract and ease stress, so I gave it a try too.   I’ve also been invited to a dance-exercise class.  I have no rhythm, but I’ll probably try it.  My friends (and healthcare providers at that) want me back at bootcamp with them.  All good things to help clear the mind and rebuild the body.  People reaching out with what helps them, hoping it might help me.

 

And there is always the food.  I learned this early on in pregnancy, when my cousin brought two large containers of local ice cream.  And in the hospital- the chocolate, the cookies, the cheese that poured in.  People like to feed you when you’re pregnant.  They really like to feed you when you are hospitalized.  They can not feed you enough when you are bereaved.  Food has shown up on our doorstep.  From close friends locally to from my sister’s job in California.  Food is love.

 

At least while I wade through all sadness and grief, I have all this around me.  It doesn’t take my grief away, but it buoys me.  It reminds me that I’m not alone and that though I am so unfathomably sad, I am also loved.