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

 

My 35th Birthday

My birthday was last week. I turned 35.

I used to be all about birthdays.  As someone who chose a career that plays such an integral part in birth-days, and who even started a non profit centered around birthday celebrations, I can say I really did find people’s birthdays very meaningful. It was the one day of the year, where we exclusively celebrate someone’s life- we show our delight and appreciation that this person is in our life and has lived another year. Sure, we should be doing this throughout the year (kind of like Valentine’s Day- we should be celebrating our loved ones every day, not just on the commercial day), but there is some fun in make a big hoopla about someone on their birthday.

Last year I celebrated my birthday in the hospital. It was still a joyous time. I still had some hope- the reality of a dead baby hadn’t hit yet. After Mabel died, I pretty much stopped with the birthday hoopla. My birthday non profit went on hiatus (for other reasons as well). I stopped doing call- being such an intimate part of a baby’s birth-day. I stopped posting cute facebook messages on people’s birthdays. In fact, I barely recognized anyone’s birthday. And for those reading, who did not get the usual birthday love from me this year, I am sorry. I thought of you but could not write the words. The celebration has been sucked out of me.

So this year, my first birthday since Mabel died, I wasn’t particularly excited for my birthday. I wasn’t dreading it- it just simply seemed another day. Chris is away on business, which also took the kabash out of it. I filled the day with work and appointments and had a very nice dinner out with friends. But the reality is, my birthday came and went, seemingly uneventfully, and now I am one day closer to my daughter’s birthday (or death day?). Our birthdays being so close feels like my birthday will always be a reminder of what day is to come next. I’m not sure if I’ll ever feel like truly celebrating knowing what happened a little over week after my 34th birthday.

But it’s ok. Because it’s really just another day.

How have your birthdays been since your loss?

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?

New Year, New Necklace

 

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

I quickly answered, “No.”

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

 

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

 

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

 

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

 

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

 

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

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

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

 

So my resolutions? New year, new necklace.

Do you have any resolutions?

Friends remembering

My friend is a high school teacher and he recently posted on my facebook wall “Today in class, I reordered students seats by placing them in alphabetical order by middle name. One girl’s middle name was Mabel. I told her that my friend had a beautiful daughter named Mabel; she should wear it with pride.”

******

At the Buddy Walk, a fundraiser for out local Down Syndrome congress, we walked with Jenna’s Journey- the team in support of a lucky little girl who I had the pleasure of helping into this world six years ago.  This year they walked in in honor of Mabel and Jenna’s mom had some great bracelets made.  There were many left over after the walk and I gave some of them to some of the donors to my next walk- Footprints on our Hearts, supporting my local babyloss bereavement group. The other day my friend was telling me how her daughter had taken a liking to the bracelet I had sent her.  Her daughter knew Mabel’s story- she remembered the day when her mom was really sad because of a baby that died- and so she understands the significance of that bracelet. Recently her daughter was changing and my friend noticed that she was wearing the bracelet around her ankle.

 

Nine months later and Mabel lives on.

 

Have your friends done anything in honor of your lost ones?

Day 20: Breathe

“Step outside today and find a spot to sit or lay down on the ground. Switch off for a few minutes. Stare into the clouds and sky and notice your surroundings,” the prompt says today.  I left the house at 6am- it was dark.  I returned at 6:30p- it was dark.  There was no laying outside and remembering to breathe.

I breathed as I did sumo squat jumps and burpee after burpee at bootcamp.  I breathed as I found myself angry at something I saw on facebook- something that did not deserve my anger but received it in my mind anyways… because I’m not always in control of my feelings, justified or not.  I breathed as a a patient joked to me about wanting her tubes tied because her uterus worked too well- she’d be happy to donate it to someone!  I breathed when a coworker commented on how cute my new baby is- my puppy baby, that is, not my dead baby.  I breathed as an old friend reconnected with me and told me about the loss of her first child, something I had not known.

I took many breaths today, none of which were outside lying on the ground, staring at the sky.  But I breathed… as best I could throughout the small trials of my day.  And when it came to an end, after dinner was made and eaten, after the puppy peed on the floor, after lunch was packed for the next day, I finally did what the prompt wanted. I sat on the floor and lived in the moment.  The puppy came and plopped herself down on my lap and the light, warm weight of her body soothed me for a moment.  She weighs 7.8 lbs, roughly the size of a newborn.  She jumped from 4lbs to almost 8lbs in between vet visits, so I missed that magic 5lb 5oz, the weight of my daughter.  Perhaps it’s for the best, because as comforting as the Muppet puppy is, she is not my baby girl.  I will take her, though, for now, as a simple reminder to sit on the floor and breathe.

I’m not the only one who found breath and gratitude in their furry friends.  Seems a theme among the babylost.

#CaptureYourGrief

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3GoodThings

In the grief books I’ve been reading, in the babyloss online magazines I subscribe to and on many of the babyloss blogs I follow, I often see the theme of gratitude come through. Being grateful can help a person move through grief, to take it by the hand and walk side by side with it, rather than be smothered, motionless in the corner. Gratitude doesn’t make grief go away; it helps make life go on. I am in no way grateful for my baby dying, but her death has made me look at the world a little differently. I felt this way even in pregnancy when my baby was given a likely fatal diagnosis and wrote about it here. Sometimes now my grief can feel all encompassing and I forget all about gratitude.

In August, I was inspired by Leigh’s post on her blog, I nominated myself for the #3GoodThings challenge and followed through on facebook. For five days, I posted about 3 things that I was grateful for. After 5 days, I decided I needed to do more, so I extended to 2 weeks. The result:  (p.s. Day 4 is my favorite, I think)

 

in an attempt, to foster happiness I’m going to try this. I’m not really one for this kind of thing, but this one makes sense.

Every day I will find and post three good things about my day. I am tagging three people in hopes they will do it with me (please). Three friends, three different networks. And they can tag three people, spreading the happiness.

Gratitude helps create happiness.

 

#3GoodThings Day 1

1. It’s friday and I don’t have to work for the next three days
2. my husband cleaned up the kitchen
3. the comments my professor on my online writing course gave me regarding my homework made me feel good.

 

#3GoodThings Day 2
1. I caught up on a bunch of email and found someone sent me some pretty awesome photos (looking at you, caitlin)

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2. Found out my town is totally cool. Hung out at a local cafe listening to the sweet sounds of John Ciambriello with Michelle and Roo
3. my blog got mentioned here!http://en.blog.wordpress.com/2014/08/01/grief-roundup/ It may be a sad subject but it is a good thing for the community to be recognized

 

#3GoodThings Day 3
1. Swimming followed by milkshakes. Today was summer

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2. Beautifying my house with flower filled window boxes and planters on the front steps

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3. Chocolate cake and left over peanut butter pie with good friends ( Scott &Sabina) and winning a few games of the Sneaky Snacky Squirrel with their kiddos.

 

#3GoodThings Day 4:
1. After a morning of starting of wrong (waking up too early, forgotten shoes for bootcamp, running over a curb), I had a really nice lunch catching up with a friend at Bar taco which was amazing! Baja fish, duck and pork belly tacos!
2. Got chocolate chocolate chip ice cream with chocolate sprinkles with Abby.
3. while walking out of the ice cream shop, a chubby little girl with brown pigtails was standing on the old fashioned scale by the door. “I weigh 15 inches!” she announced proudly. I held the door for her as I left and looked down, seeing for the first time that she had Down Syndrome. My heart smiled.

 

#3GoodThings Day 5
struggling today. some days it’s easier to find the good things
1. chocolate bundt cake. I made this, inspired by a recent bundt baker friend Eleni, and ate two pieces today. two.
2. i remembered my sneakers for bootcamp.
3. i sat on my patio, eating homemade meatballs by Chris and enjoyed my backyard. i love my backyard.

 

#3GoodThings Day 6
1. saw a dog riding a motorcycle. he was wearing goggles.

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2. i bonded with a two year old in the office today. after blowing up a rubber glove balloon, playing with giant q-tips and a round of peek-a-boo behind the curtain, he didn’t want to leave. I put him down next to his mom and said good bye and he just raised his arms up at me with those sad little kid eyes that said “don’t leave me>” he also had a mohawk
3. green pizza truck + gelato + ocean views= a nice hello/goodbye party for the a big staff change over at work

 

#3GoodThings Day 7
1. Had a too quick lunch with a friend Amanda, a lunch that was a brief respite from the craziness of my work day. In the middle of the lunch I told her, “This is one of my GoodThings today
2. Got a great big hug from a great big Doodle, who smiled up at me while her doodle daughter watched.

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3. DuckTales, woo-oo! Watched Huey Dewey and Louie team up with Uncle Scrooge to beat the Beagle Boys. And was reminded that Gummi Bears was the best cartoon of my childhood.

 

#3GoodThings Day 8
1. Sleeping in with the help of my air conditioner (I’d be a hot mess with out it)
2. local brewery tasting with some new friends
3. Bacon s’mores.

 

#3GoodThings Day 9
1. Beached it out today. Ribby Roll and ice cream to boot!

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2. Felt some love today, during a challenging milestone.
3. Made stir fry complete with sweet peppers, hot peppers and carrots fresh from our garden.

 

#3GoodThings Day 10
1. I’m grateful for my health
2. I’m grateful I have a supportive partner
3. I’m grateful I had the chance to experience pregnancy
When things are bad, sometimes it’s important to remember the important things.

 

#3GoodThings Day11
1. Spent the day with our new doc observing me to learn the ways of our practice. SHe was enjoyable and so I think she’ll fit right in. But at the end of the day I realized I had someone with more training than me watch everything I do and I didn’t feel self-conscious. I do believe I’ve found myself in my career.
2. dinner made with veggies from the garden. I feel like a farmer.
3. I have good friends.

 

#3GoodThings Day 12
1. I like the rain. Nature’s way of watering my garden. And i just like the rain
2. long lunch with a friend Eliza who listened to me rant and rave a whole bunch
3. i did not work today, and any day not working is a good day. and I end it by sitting on the couch, watching Orange is the New Black, sharing a seasalt caramel chocolate tart with the handsomest man around, Chris

 

#3GoodThings Day 13
1. As I fell down through an emotional spiral today, I had several hands reach out to catch me. you know who you are and you are all good things today.
2. Even when I was in the midst of my own spiral (see #1), I was able to still do some good things as a midwife. I”m proud for these small victories.
3. I am fortunate to not have to worry about how I’m going to eat today; i have clothes to keep me warm and air conditioning to keep me cool. I garden “for fun.” I am surrounded by abundance, for which I am grateful.

 

#3GoodThings Day 14
1. I got out of work early today. I heart no-shows
2. headed to VT for some old fashioned fun with good friends.
3. got to visit mabel twice today. stopped by on my way to work but then thanks to #1 I swung back again before #2. she’s my favorite.

and that’s the end of my two week. thank you for humoring me.

 

Overall, it was a GoodThing for me to do. I might do it again sometime.

What are you grateful for? Are some days harder than others to come up with things you are grateful for?

BabyLoss: Pregnant Before and After Pictures

I saw this link on my facebook feed. (*warning to the baby loss- photos of pregnancy and newborns*)

http://beingmommydaily.com/pregnant-before-and-after-pictures-heartwarming

if you haven’t clicked, let me tell you: it’s a series of side by side photos with a woman very pregnant next to herself in the same clothes, standing the same way, holding her newborn at tummy level.

This was a link I would have clicked on easily in the before. My job as a midwife and my natural draw towards pregnancy and newborn photos would have made the link a good match for me.

Now, in the after, my facebook feed is pretty empty of kids, babies and bellies, thanks to my weeding out and unfollowing of friends who have such things. But I am also in the OB community and so some career related posts sometimes pop up.

I clicked on it.

I know what you’re thinking- I’m sure some of you babylost have your own idea. Perhaps I was a glutton for punishment. Like how even though I’ve blocked babies from my feed, I every now and then look at certain people’s pages. I make myself sad by doing it and perhaps that’s why I do it- I want to feel sad, on my own time, when I click, not when I’m surprised in my feed. Perhaps it’s training, recognizing that bellies and babies are a reality (an everyday reality in my working world), and forcing myself to look at these kinds of photos will help desensitize me so I can react in real life like a real human instead of the grief monster I have become.

But that’s not why I clicked this link.

I clicked because I honestly thought I would see some mothers empty handed.

Isn’t that crazy? Have I become too entangled in the babyloss world that my reality is blurred? Of course pictures of mothers with empty arms would not be called “heartwarming!” Maybe my facebook feed is so saturated with StillStanding Magazine and Down Syndrome Bereavement Support Group posts that I forget that there is anything else? Maybe I’ve become so open about my loss and have found so many of you out there to talk easily of our dead babies, that I expect the world to do the same?

I’m not sure why I thought they’d have empty-armed mothers there, but I think they should.

Perhaps this is a challenge. Could we come up with some of our own photos? Can you find a photo of yourself pregnant and restage it now? You can have empty arms or holding a photo of your child or a keepsake that reminds you of him/her.

Think about it.

If you do it, post it on your own blog and link it in the comments. If you don’t have your own blog but want to share, comment and I’ll email you for the photos to post on my blog.

What do think?

I didn’t have many photos of myself big and pregnant.  It’s one of my bigger regrets.  At the time I thought I wouldn’t want to be reminded later on, but now I cherish every pregnancy photo I have.  Here I am November 2013 and present day.

Babyloss: Pregnant Before and After

Babyloss: Pregnant Before and After

Signed, Bitter

Dear Facebook, I understand that you use some fancy algorithm to recognize my interests and post ads relevant to me.  I wish there was some way for your fancy algorithm to recognize the term babyloss.  Maybe, then, instead of ads for diapers featuring healthy babies, you’ll show ads for baby caskets.

Dear Pinterest, I can see you got savvy like facebook and started putting random “related pins” in my feed.  So now I get to see random photos of nurseries even though I’ve unfollowed all my friend’s baby boards.  I cant “unfollow” these related pins.  Maybe your algorithm will figure out that I’ve been pinning resources for grief and bereavement and will start showing related pins that are actually useful, rather than painful reminders of what I don’t have.

Dear whatever mailing list I somehow got on, please stop sending me envelopes with babies on them.  There is no baby in this home.

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Stop presuming that everyone takes her baby home from the hospital.   Tell me where is the box that says “my baby spent her entire life in the NICU?”  What box do I check?  I didn’t want to take your dumb survey anyways

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Dear world, i’m tired. Please give me a break.

Signed,

Bitter

First comes love, then comes marriage…

When I found out I was pregnant, I planned to announce it on facebook after the first trimester and six months later announce the birth.  When I was trying to get pregnant, hearing all the details of others’ pregnancies on facebook made me a little sad and jealous. And I didn’t even have to try that long!  I could only imagine how some others felt who were trying longer.  So I vowed to myself to limit how much I posted.  When the baby was diagnosed with Down Syndrome, I held to that vow.  I didn’t want any pity regarding the diagnosis because, though it was an adjustment, I was still happy ifnot a little worried to be pregnant.  So we announced just the pregnancy at about 15 weeks- on our 1 year wedding anniversary- with a wedding photo/birth announcement I had planned ahead.  I’m a planner. I didn’t know when I’d be pregnant but I thought a cute wedding photo pregnancy announcement could be handy.

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Outside of facebook, I told many people about the Down Syndrome: anyone who I’m close to or if it came up, I was very open.  I wasn’t hiding anything,  I have a large extended network on facebook and they would find out soon enough.

 

I had a plan- I was going to announce the birth of our child who just happened to have Down Syndrome on facebook in a special way.  I would play with the announcement in my head and knew eventually I would work on something concrete as we got closer.  It made me happy to think about.  It would go something like this [I chose “he” as the pronoun just because- not because I know anything]:

 

Today [insert name] joined us in the world.  He is perfect in every way.  Six months ago we learned that he would have Down Syndrome and welcomed him and all he would be.  He has [Insert health issues], so keep him in your thoughts and join us in celebrating his long awaited birth!

 

It was such a nice idea.  So simple.  Back when things were uncomplicated.  When I was diagnosed with oligohydramnios and the prognosis became poor, my plan didn’t change right away.  But soon there was a lot of updating to do.  Every ultrasound, every meeting with experts, I was reviewing with family and friends over the phone.  I didn’t mind talking about it at all (it became my reality) but it was just so time consuming.  So I decided to make my blog public- it was terrifying and a relief at the same time.  I have never been a writer and felt very self-conscious about my writing.  And I worried that people might find it dark or me too negative.  But I have been so pleasantly surprised by the support and love I’ve felt going public.

 

I wonder now what and how I will announce things on social media.  I will celebrate my baby’s birth in some way on facebook just like I would have before all the complications.  My baby deserves that.  I just wonder what I’ll be announcing.  So much uncertainty. So much unknown.