Julz: Right Where I Am 2018: 6 years 3 months 27 days

Today is 28^th July 2018. I am Six Years, three months, and 27 days since she died. That is 2309 days since I last felt her heart beat, since I felt her warm fuzzy face against my own. 55416 hours since we saw her pink cheeks fade away. Since everything changed. Nothing is at it was back then.

There are still the two lives which are before and after. “When we had Melody.” She was only here for just five weeks, but she impacted on us so much, forever.

Six Years and five months and three days ago, she was still waiting to be born, there was hope that we wouldn’t deliver as early at 28 weeks. She was alive she seemed safe.

Six Years and five months ago and three days ago, we weren’t quite parents of a premature baby, let alone a baby who died. . We were given a dangerous thing – hope. You don’t realise how important hope is, until it is snatched away from you in a moment.

This year I am at the point where I am not as drained as often as I used to be, I am not sure whether that is down to the time scale, or that I have made myself busy. I have increased my hours at work, volunteering, family life and plans with friends. Too busy to think, sometimes too busy to even breathe let alone think about the baby who died six years ago.

Then I get moments of guilt, because I haven’t thought about her for every minute of the day.

I have recently been involved with the new Tommy’s Campaign – Together For Change through my own blog Melody and Me. To say the least I am proud to have been a part of something special to raise awareness; to get people talking about this incredibly taboo subject. To help reduce the stigma behind the baby loss topic.

However I have found myself feeling completely detached from the whole thing. I have shared it across my social media to help break the silence. But I am struggling to see what any of it has to do with me. I can watch my interview; I can see the stills and read the pieces about our story. But I can’t for one minute feel like it is our story, or that it is me helping to make a difference.

I sometimes feel like I am talking to a brick wall, that the people who were around have disappeared, I often get reminded that they don’t matter – but they do. Some are the last links our daughter when she was alive, some are a reminder of all that was. The detachment from her death, is leading me to worry that my memory of her is fading. Those days when I don’t think of her or mention her, these are when for a moment I have forgotten about all of it – even her. I don’t want to forget her, I hope I don’t – but it is a strange feeling between wanting to protect myself from the painful thoughts that I do have a dead daughter; by letting her fade into the darkness. Or embracing what this is all about, and forcing myself to remember.

Sometimes, I just want to feel normal; sometimes I even wish I had never met her. But I can’t imagine my life not speaking about her, just as much as I cannot imagine a life where she is alive and well.

How is any of that right? This is not how I am meant to feel about my own child.

~~~~~

You can read Julz' previous posts here:

Right Where I Am 2017: 5 years 3 months 26 days
Right Where I Am 2016: 4 years 3 months
Right Where I Am 2015: 3 years 3 months 26 days

Right Where I Am 2014: 2 years 2 months 3 weeks 4 days

Right Where I Am 2013: 1 year 3 months 4 days

Lindsay: Right Where I Am 2018: 5 years 18 days followed by 4 years 11 months 3 days followed by 3 years 4 months 6 days followed by 2 years 9 months 10 days followed by 2 years 2 months 20 days

I'm finding writing this post much harder than in previous years. In the past I was just sad and over time I had worked out how best to cope and process those feelings. Now there's such a mix of emotions going on inside of me I can't pinpoint how I truly feel, it's such a jumble. On one hand I do know I'm happy, so that has to be a good thing. I have a lot in my life to be happy about as it's been 15 months and 7 days since we welcomed our third born daughter, Iris, into this world and 15 months 6 days since we brought her home from the hospital. On the other hand I'm not ok. I am not ok, but I don't know in which way. (I've typed, deleted and typed that again and again, but it's ok to not be ok, right?)

As hopeful as we were, after several years and so many losses...well it's hard to cling on to a thread of hope. It takes its toll. And the grief... The grief which comes along with that degree of heartbreak doesn't just disappear. I don't think it ever will go away completely and I'm fine with that.

The thing is, whilst I am happier now than I have been in many years, I still feel as if I'm grieving and I know to some extent I always will, but I don't feel as if those around me fully realise this. Apart from my husband everyone else was at least one step removed from the crippling pain that we went through after each loss. (If you're reading this and you've suffered your own loss(es) then you know the pain I'm talking about. The right in the middle of your chest, take your breath away emotional pain – often accompanied by the long silent sobs which can end up with you sitting in a crumpled mess on the floor...those ones. The ones you try for so long to keep hidden.) I still feel that pain sometimes and at the moment I feel as if I don't have a right to. It's as if everyone else thinks my grief is done with and everything is suddenly fixed because my daughter is here. She's amazing, but no child can ever replace another.

I love being able to mother one of my children each and every day, but I still get sad. Not because of her, of course not, but because of all the things I know I've missed out on with the others. That's natural, isn't it?

Some days the sadness doesn't affect me at all, even when I'm thinking of my children who aren't here – my son, Hunter (who would have been going to school this year), my two daughters, Esmae and Freya, and the two little ones I never got to meet - I think of them with a smile.

Some days are hard.

On the tough days I used to look on Pinterest for quotes that summed up just an ounce of how I was feeling and I'd share them on social media, almost as a cry for some support or a nudge to everyone around me that I was still going through this. I never wanted anyone who saw those posts to feel sorry for me. I just wanted them to remember (me), to understand. Each time I go to post something now I think twice as I can't afford to isolate myself even more from those around me (at least that's how it feels).

At the moment I feel as if I can't reach out in the way I need to to the majority of my friends or family as (I feel) it's hard for them to understand that the past has not changed. To put it simply, I'm still sad. Recently I tried to let a group of friends know via a message that I was struggling. Perhaps I was too subtle, but as I saw each one of them read and not reply to my message my paranoid self shouted at me “they are sick of this (you)”, “you have your daughter, just be happy”. I hope I'm wrong, I'm almost sure I am…

I don't feel like myself, although who I am these days I'm really not sure. I barely remember the person I was five years ago and after such a long time and after so many losses I feel as if it's become too much for those around me to bear. My conscious paranoia feeds the feeling that I have pushed so many people away to the point of no return. Firstly by avoiding them whilst they were pregnant (only in a desperate attempt to keep my sanity and in a strange way to try to keep the friendships intact) and secondly in the way I have been vocal about what I've been through and how I still feel. I know this level of loss, this level of grief is difficult to comprehend (the emotive subject of baby loss is enough for people to want to leave you alone) and as more and more time passes it gets easier for others to ignore, but it's isolating.

I feel as if I've lost my place in the world and I'm lonely. There are few who understand, and if they do then they're tackling their own grief.

My thoughts circle constantly – all the good, the bad and the ugly which I feel I can't control. Those thoughts never stop. I sometimes feel them getting out of control, racing around in my head and whilst I can slow them down a little they never stop. They are full of anxiety, paranoia, gratefulness, happiness, household tasks, guilt, annoyance, shopping lists, stress…

I have to bite my tongue and push down the anger and hurt I feel each time my daughter is referred to as our/the 'first'. She is not. How can I have given birth to, met and helped name four of our six babies and only have one child?

I struggle when someone else mentions their children, especially the children mine should have grown up alongside.

I still get that lurch in my stomach when I hear about friends' pregnancies – I don't know if this is fear, anxiety, jealousy, an involuntary reflex... I am happy for them, but the news makes me think of my own pregnancies and this in turn makes me feel so selfish.

I cringe (and then immediately feel guilty for doing so) each time I bring up my previous pregnancies or my other children with the new mum friends I have made. I hear them in my head saying 'she's not going on about this again…’

I feel guilty each time I breathe a sigh of relief when my daughter (the child I so desperately, desperately wanted) takes a nap just so I get some much needed time to catch my breath, to gather up some of those whirring thoughts...

I'm already worrying about how anyone reading this who has no living children has taken that last statement.

I worry about a lot of things - too many things perhaps.

Even with all of these thoughts going round and round I feel numb an awful lot of the time and that's the worst feeling. I stop and think about something and often there's just nothing. Maybe I developed such a good coping technique of blocking out so much of the world that it stuck.

I used to calm myself by writing down how I was feeling, but I haven't made enough time for that recently and it shows. This piece is all over the place. And maybe that's where I am right now...all over the place, but ironically almost always here...stuck inside my head with the many, many frantic thoughts.

~~~~~

You can read Lindsay’s previous posts here:

Right Where I Am 2018: 2 years 11 months 1 day followed by 1 year 2 months 20 days followed by 7 months 24 days
Right Where I Am 2015: 1 year 11 months 18 days followed by 14 weeks 1 day

Shona: Right Where I Am 2018: 6 years

As I write this on Sunday right where I am is full of memories of another Sunday exactly six years ago.

July is full of the before and after. On the surface I am a busy working mother of three facing the constant juggling that entails, particularly during the summer holidays. Not far beneath is another self, mostly hidden from the world at large.

A holiday in the Lake District is full of reminders of another much rainier July when I was happily expecting our third child but starting to wonder why my rain jacket wasn't getting any tighter.

Another trip to London this time and at a service station I am right back to the floods of 2012 and a journey back from my cousin's wedding, a party punctuated by observations about my small bump.

As we juggle the demands of holidays, childcare, long car journeys with the added bonus of chickenpox it's hard to find time for my real self to get a look in this year. But inside my thoughts are filled with the little boy who we barely got to meet but without whom I don't know where I'd be right now. Certainly I was a different me then. This year is the first where the days of the week are the same as that summer.

Six years ago last Tuesday I walked across the Meadows to Lauriston for a scan. I was 21+2 weeks pregnant. Having already had a late miscarriage in our first pregnancy I have never been excited for scans and after two healthy pregnancies since I had a feeling about this one. My rain jacket getting looser even - was I imagining that? I hadn't felt this baby move much either. As I walked to the appointment I was already trying to work out how I would word an out of office reply if there was a problem.

When you have a scan late in the afternoon and are given an appointment with fetal medicine for 9am the next day that adds to the knowledge that there was something very wrong. From the scans no one could tell us what was wrong but they all agreed on one thing, that this baby wasn't going to survive.

On this day six years ago I went first thing to obstetric triage to take two tablets.

Two days later we left our girls at nursery and went to the labour ward where a few hours later we met our only son. We didn't know he was a boy that day and we couldn't give him a name until two weeks later. We had so much more to learn about him.

Callum died at 22+2 due to to an inherited disease Smith Lemli Opitz syndrome.

It's amazing how many cars round here had the number plate SLO5 back then.

It was hard at first to know where I belonged. Hard to admit to anyone other than those closest that we had in fact ended our pregnancy. Termination is such a negative word and it has only been much more recently that I have been able to say or write it. Compassionate induction is a much more appropriate term but I only heard it very recently. I bared my soul more openly than before in a post I wrote before the Irish referendum earlier this year. I'm not going to get into politics here. Baby loss is hardly spoken about but this type of loss is even more hush hush. I want others going through the same to know they are accepted in the baby loss community, that they are welcome, and I'm proud to be involved as a befriender for SANDS Lothians in our group with ARC.

I have learned that grief doesn't go away, it evolves. I am happy. For a while I didn't know if that would ever be possible. It is a different sort of happy. People talk about finding a "new normal". Right where I am is a new happy. Grateful for three healthy daughters who beat the genetic lottery. Grateful for the youngest ginger whirlwind who we never would have met if Callum hadn't died. A new kind of happy that coexists with sad. Now the memories aren't all sad but tinged with happy remembering when he was still here, before. On Tuesday we will have a family day together and the whole me will be more visible, even the small blue piece of my heart.

Six years ago on Tuesday I forgot to kiss him goodbye, but a tiny part of him is with me forever xxx

For Callum 24/7/12

Juliet: Right Where I Am 2018: 1 year 8 months 3 days

It's been a while since I've put my feelings about the loss of you down on paper, a while since I have written to you, as I used to do all the time. Realising that fills me with guilt. I'm sorry. I'm sorry my sweet girl.

So where am I now? It's difficult to say, difficult to know. I'm sitting here now, your little brother asleep in my arms and I'm happy. I'm happy. How can that be? I'm happy that he's here, happy he arrived safely (after a bumpy start), happy the wait for him is over, happy because he was worth every second of worry, he was worth every tear. I'm happy I have your big sister and your Daddy, happy we are all together, happy because I love my little family. And for that I feel guilty. Guilty that you might feel left out, loved less, forgotten - replaced. None of that is true, it never could be, yet still the guilt persists.

I'm happy, yet I'm still sad. Often when I'm alone, or just before I sleep, the familiar ache of your loss fills my chest. When I give in and cry, when I feel the pain, when I wonder and regret ~ what would you look like now? What would you feel like in my arms? What would you sound like? Why didn't I undress you again? Why don't I remember what you tummy looked like? Your legs? Your bottom? ~ when I am overcome with grief and sadness, I feel guilty again. Guilty because I know I'm blessed, guilty because I should be happy.

Guilty because I am, guilty because I am not.

Right where I am now is learning to navigate a baby after loss. Learning to navigate life again. With you and without you. Our little family of five.

My Grace you are loved. You will forever be loved. Please know that.

~~~~~

You can read Juliet’s previous post here:

Right Where I Am 2017: 8 months 15 days

Jessica & Laura: How do you remember the baby you lost?

Jessica Zucker is a Los Angeles-based clinical psychologist who specializes in women’s reproductive and maternal mental health. She is the creator of the @ihadamiscarriage campaign. Find her online www.drjessicazucker.com and on Twitter @DrZucker.

Laura Norkin is an editor at InStyle; her work has appeared on The Cut, Glamour and Refinery29. She tweets at @inLaurasWords.

This article is republished with kind permission from Dr Zucker and was originally published on Elle.com.

~~~~~

Kay Kremer was in a therapy session for perinatal depression when she felt her baby stop moving. She was 32 weeks pregnant, far enough along that a fetus usually makes its presence known through near constant jabs and wiggles, even pelvic pressure signifying that it’s almost ready to press on through. That wouldn’t come to pass for the now 37-year-old makeup artist. Her son, whom she named Sullivan, was born still the next day, July 5, 2015.

With the help of a bereavement nurse at her Shawnee, Kansas hospital, Kremer and her husband had photos taken of Sullivan, and planned an open-casket funeral at their church. “I want people to fully acknowledge Sullivan as my child and as a real baby,” she says. And so she set about to concretize this loss—to make real someone who had only been ephemeral; a life that wasn’t lived, but nonetheless existed, acutely, for her.

“I got a tattoo. And then another one. And, well, let me count,” she says, before landing on the total of seven pieces of forearm art, nine hours under the needle. First came his name, then she added a foot and handprint. A few months later came the date and time of his birth. Over time she added angel wings, the letter “S,” blue jay and cardinal feathers, and finally a black heart with a puzzle piece taken out to represent what’s missing from hers. She says the process of getting tattoos was healing: the adrenaline numbed her pain, and the ink became a wearable memorial and an invitation for others to ask questions she was eager to answer. “It meant that I could share my story with people.” She also shares her story on an Instagram account, @DedicatedToSullivan, where her followers will frequently see the black-and-white images of Sullivan’s still face, a family photo where a little-boy shaped silhouette joins the couple and their two living children, Layla, now 6, and Adler, 13 months.

While there is no blueprint for how families manage this kind of loss, there are repetitions on a theme—take photos, make art, hold objects—anything to make meaning you can keep, hold, and carry. Several women interviewed for this story echoed this sentiment: We want to acknowledge our losses, and the way we do that—the way we each mother our dead children—is different.

The American Pregnancy Association has a page devoted to what you do when your baby is stillborn—from how to “survive emotionally” to how to memorialize the loss. And nearly each idea (preserve a sprig of her hair; have photographs taken; jot down her measurements) represents a cottage industry that has sprung up. There are professional photographers, specifically practiced in the art of capturing the deceased baby to look like a sleeping one (which, while healing for some, is not without controversy). A Google search for “stillborn baby keepsake box” surfaces 124,000 results, ranging from Etsy shops and Pinterest boards to Hallmark items; and charity programs from the U.K. to Seattle to Philly.

Samantha Gadd, 28, a loss mom (a shorthand way some women who've been through this refer to themselves) in Canton, Ohio, focused her grief on raising money to help other families in her area enduring loss. In early 2017, when she lost her daughter, Victoria, at 22 weeks, she wasn’t afforded a Cuddle Cot, specialized resting places that act as the opposite of an incubator: They refrigerate an infant’s remains “to slow down the decomposition process,” she explains. Each one costs $2,500 to be installed in a hospital, and it serves no medical purpose; it’s there to help parents honor their loss. “It buys families time to hold their babies and look at them, because the process happens so fast,” she says, adding that they're usually used for babies delivered closer to full-term, and that having hers dismissed as not legitimate in the same way sharpened her pain. And so raising money for a cot at the hospital where she lost her daughter felt like an urgent way to make her pain be of some use. “I was hoping it would be one of those hospital devices that sat in a corner and gathered dust,” she says, nevertheless needing it to be there, so her daughter’s name would be for a memory. Two months after it was brought in, that Cuddle Cot was used by a local family whom Gadd knows.

There isn’t always a body to hold and look at, and so concretizing loss can also take less literal forms. Some look to the trees. After three early miscarriages, Paula Knight, 49, Bristol, U.K.-based author of the graphic memoir The Facts of Life says she became drawn to seeds. She and her husband collected acorns and planted three oak saplings in The National Forest in central England, which was being reforested after, “rather fittingly,” she says, “the land had been left barren by mining.”

A page from Paula Knight’s graphic novel Facts of Life.

Writing her book about coming to terms with childlessness was a long term goal and a distraction, she says, though it kept difficult emotions raw for quite a long time. The trees, on the other hand, provided catharsis. “Trees last longer than people, and it felt good to be contributing to the future as well as to the environment,” she says. She and her husband did go back to visit their corner of the forest once, three years later, and she was surprised to find her trees now stood nearly leaf-to-eye with her. “They grow up so fast, don’t they?”

For Leata-Mae D'Avoine, 28, a London-based doula, a favorite tree became the final resting place for the idea of her daughter Ada—a pregnancy she lost at nine weeks along, and never got to know beyond what she calls her “womb life.”

“We wanted to have a goodbye ceremony because we never even got to say hello,” she says. So she and her partner made one up as they went along, burying under a tree a bowl in which they had placed pieces of their own hair (“to represent that she was part of us”), a rose quartz representing unconditional love, and a slip of paper on which they had scrawled the name Ada. Though it was too early to tell, she says she knows her fetus was a girl. Naming her, and speaking about her, was central to Leata-Mae’s healing, which she says is ongoing. She opened up to her family first, and then on Instagram. “Finding a community, one of silent understanding, helped me face my grief head on. You don't really heal from ignoring it. You have to face it,” she says.

Leata-Mae D’Avoine, pregnant with her daughter Iah, who was born in April.

“The only way I memorialize is through acknowledging I was pregnant,” says Imani Payne, 26, who works in human resources in San Francisco. She experienced an ectopic pregnancy rupturing her Fallopian tube before she had even known she was pregnant. “I didn't get to experience the joy of being pregnant before I experienced the loss of it,” she says. But she was fascinated by pregnancy even before that, which her ob/gyn knew, and so she captured a unique memento. “She took pictures inside of my ruptured tube and gave them to me so that I could have photos of this pregnancy,” Imani says. The proof that it happened is meaningful to her now, five weeks after the birth of a healthy baby. “I never wanted to act like my pregnancy with my son was my first.”

Imani Payne, pregnant with her son Leon, who was born in March.

Rachel Darlin, 27, a doula in Arizona, gave birth to her first son, Jameson, stillborn, two weeks before his due date, this March. Proving and remembering his existence is an urgent priority for her. “I wanted to remember every detail of my son... his hands, his hair, his feet, his body,” she says, and so she had a friend come take photos in the hospital. “His skin was paper-thin, and was tearing; but I wish I could have done more skin-to-skin and looked him over more,” she says. She was able to lay together in a queen-sized bed in the hospital with Jameson and her boyfriend, Tanner, before they chose to have his remains cremated. The hospital had given the couple a memory box, including some of Jameson’s hair, a cement footprint, ink handprints: “I kept anything he ever touched in the hospital: the blanket, his clothes,” she says.

After leaving the hospital, she and Tanner got matching daffodil tattoos, three of Jameson’s birth flower, to signify the three of them together forever. Six weeks later, for Mother’s Day, they took a trip to Hawaii. There, they had a wooden box hand-carved where they would place Jameson’s ashes. As part of her healing, Rachel pumped and donated 100 ounces of breastmilk, and now she feels a strong pull to work as a bereavement doula to help other mothers going through this. “We eventually want to buy a little plot of land and call it Jameson’s Garden and plant a tree and go there on his birthday, and eventually it would be a lush, full garden where other families can go who have lost a child, and you can see things people have left for their children, like stones.”

Rachel and Tanner’s tattoos memorializing Jameson.

The choice whether or not to bury a child was fraught for a lot of the mothers we spoke with. Samantha Gadd felt strongly that she and her family—Gadd has two older sons and a daughter, Abigail, born at the end of last year—have a place to return to to visit Victoria, their stillborn daughter. But, the business of it was a challenge. “I never realized, because luckily I never had to bury anyone, how expensive it is,” Gadd says over the phone while tooling around Target with her kids. “We were prepared to buy a crib, not a plot, a casket, and a headstone.” But they found a way to make it work, and they still return once or twice a week to check in. When Abigail was born, a friend decorated Victoria’s plot with a “big sister” banner. It’s a must stop on all holidays for Gadd’s family, but—as when grieving adults—some families see the finality of a gravesite as difficult to face.

Kay Kremer, Adler, and Layla visit Sullivan’s grave.

“It’s my duty as his mom to visit him, I feel guilty if I don’t,” says Kremer of her son Sullivan. But it’s not an easy task. One can sense she undertakes the rather painful outing as a parental obligation to her lost son. “I have a love-hate relationship with the grave, because I could only visualize the casket for a while, the trauma.” Still though, she and her family come with picnics sometimes, and she says she decorates the tombstone. This weekend, for Sullivan’s third birthday, they placed potted flowers, balloons, and small toys around his headstone. In short: “It’s just as I would do for my living children.”

For every grieving parent decorating grave sites and adding tattoos to their skin, there’s one who prefers not to lend any more tangibility or permanence to their loss. “I sat with my sadness, guilt, and anger, and wondered, did I do something wrong? I thought maybe I was even being punished for something,” says Janel Martir, 30, a doctor in New York City, who experienced a miscarriage early in her second trimester. In spite of her medical background she felt guilt, which she worked through quietly, often in her dreams. “It’s only recently that I have dreamt of having a calm pregnancy and a healthy baby: a resolution to my fear and anxiety.”

There is a stigma and silence around this kind of loss. What these mothers have shown is that coming out from under that shame and trauma is an even more acute need, often expressed by finding something tangible to have, to hold—and to represent that so much has been lost.

Fliss: Right Where I Am 2018: 6 years 5 months 12 days

2355 days since our lives changed forever. Since I held her in my arms as she took her last breath.  I felt my soul shatter and I couldn’t understand why people could not see right through the hole within me.

A lot has happened since then, another child has come into our lives, our beautiful rainbow who brings us joy every day, along with his brother, who still talks of his sister at times.  I’m not anywhere near where I was, that awful dark place is somewhere I never want to return to but is still there, in the shadows of my mind. Occasionally the memories rear up and the pain is there but on a daily basis I am able to function like an almost normal human being.

I watch my children grow together, play together, laugh and fight together and it doesn’t break my heart as much as it once did.  I’ve worked hard to move away from the place I was, support workers, counselling, online support groups and finally after a lot of resistance (from me) I was prescribed medication.  Not for depression but for PTSD and anxiety that has come from the loss of my child.

One of my biggest achievements I feel is making new friends, one has a daughter who is in the class Ayla would be in and I just know they would have been best friends.  She has 2 brothers and along with my two boys and our other friends 2 sons, she is surrounded by boys.  This does hurt. My heart aches when she mentions that she has no girl to play with.  However, whereas before I would have pushed her and her mum away and actively avoid becoming friends this time I have stepped in, not allowed my pain to stand in the way of what has become a wonderful friendship that I truly value and has led to another equally valued friendship too.  I also have a relationship with her, she’s ace, we have a great time together and she runs to me for hugs and kisses.  These have helped my playground life be a bit easier and not the nerve wracking fear inducing horror that they once were for me.

Ayla has brought some truly beautiful people into my life, some from afar, some much closer, some for a short while, others to stay the distance and show me what having true friends actually means.  All of them I love and appreciate more than they will ever know and because of these people I know that I’m ok, Ayla lives within me, within her Daddy, her brothers and all the many people she has touched the hearts of.  What an amazing girl, it is an honour to be her Mummy, even when it hurts.

~ ~ ~ ~ ~

You can read my previous Right Where I Am post by clicking on the link below:

Right Where I Am 2012: 4 months 2 weeks

You can read more my story here:

Incompatible with Life

Baby loss aware?

Letter to my Ayla

Lynne: Right Where I Am 2018: 4 years 11 months 25 days

Right where I am... 4 years, 11 months and 25 days (written on 15 July 2018)

Tomorrow 5 years ago is the day of the scan where our world fell apart. When we realised you were so sick that you would not survive. When we realised we would have to say goodbye before we’d even had the chance to say hello.

Some might say stop living in the past. Stop torturing yourself but dates and milestones are all we have. We don’t get to watch you and kiss and cuddle you every day. But you are part of our family, our lives, our past, our present and our future.

I’ve learned to ride the waves of grief. I now accept I can be plodding along just fine, happy even, when crash the floodgates open and the pain resurfaces as raw as those early days and my heart aches all over again. Dates such as tomorrow are never far from my subconscious.

But despite the pain Findlay I would never change any of it. I am so so proud to be your mummy. I treasure every single second you lived inside me, every second we spent together, taking in every single detail of you so that it would be forever etched in my memory, never wanting to forget a single thing. In some ways I welcome the pain as it makes it real. Makes you real.

In two days time we will celebrate your little brother’s 4th birthday. He talks about you. It pains me that I will never see you play together but it makes me smile knowing you will always have a bond. We smile and enjoy family time but never a day goes by that we don’t think of you and wish you were here.

Every milestone we enjoy with your brother there is a dull ache knowing we will never experience those with you. You should start school this year. You would have the same circle of friends as your brother which is heartbreaking yet comforting all at once.

20th July is your 5th birthday we will do something as a family. I know you will be with us.

I love you and miss you more and more every day precious boy. Death cannot break our bond. I will always be your mummy and you will always be my son. The greatest privilege I could have ever dreamed of.

I love you to the moon and back Findlay always and forever. Every breath I take I take for you. You will be remembered always.

Happy 5th birthday baby boy. Love Mummy xxx

Right where I am: I am living life. I am happy. I am a very lucky mummy to two special boys.

~~~~~

You can read Lynne’s previous posts here:

Right Where I Am 2017: 4 years 8 days
Right Where I Am 2016: 2 years 11 months

Right Where I Am 2015: 1 year 10 months 2 weeks 1 day

Julia: Right Where I Am 2018: 2 years 5 months 19 days

2 years, 5 months, 19 days, 7 hours, 6 minutes... I remember in the early days after losing Caius being told it would get easier, that time was a healer; and I wanted to scream, because every day, every hour and every second felt like I was getting further away from him, from the strength of his kicks and the excitement before his arrival, from the warmth of his body in the moments after he was born to the cool weight of him just the next day.

Nearly 2 1/2 years on and I know what they mean when they say that, but easier isn’t quite the word. The overwhelming cruelty of losing a baby does slightly subside as an inkling of acceptance starts to nudge its way in, but when I really think about it, the raw pain is still there.

But through the pain there is pride. I’m proud that I am able to function, that I can continue to be present for my eldest son Reuben, now 5 1/2, and not just present, I know I’m doing right by him, and while he still yearns for a sibling, it’s not as all encompassing as it once was. We are creeping towards acceptance that we will not have another baby.

With this in mind, I’ve been thinking about selling the pram. It wasn’t bought for Caius, it was Reuben’s, but Caius was to use it, so it’s been hard to let it go, and equally difficult to let someone else use it, especially if there were a chance of me seeing them using it, that would be painful; Caius should just be outgrowing that pram now.

I am now approaching my 36th birthday and will be glad to put 35 behind me. We always said that we would try for a sibling for Reuben until I was 35, because statistically, pregnancy is harder and more complicated after the age of 35. Of course we said that long before we knew what a journey our family would be on. As a result, turning 35 was a bit of a trigger for me, possibly also because Caius was born 1 day short of 35 weeks gestation.

After 4 early losses, a 5th, Elliot at 14+2 weeks, losing Caius at 34+6, then another loss at just 6 weeks, the thought of getting to the end of our attempts at growing our family was overwhelming, heartbreaking, too much to bear. So as an epic distraction, I decided to set myself 35 ‘challenges’ to complete throughout the year, particularly challenges that I wouldn’t have been able to do had I been pregnant. I haven’t yet achieved all 35, in fact I’ve managed ‘only’ 15 so far, and with 4 weeks to go, I know I won’t manage within my set time, but I will complete them regardless, and it’s been an amazing experience, to do things I would never have dreamed of, and especially in memory of my baby boy. His legacy is very much alive and well and I’m proud of myself. I never imagined I would be brave enough to attempt a bungee jump or to climb to the top of Ben Nevis!

Sadly, I have lost friends within the last year, I guess as a result of my loss, an inevitable reality it would seem. I’m such a sentimental person, so each and every secondary loss I have felt deeply and I carry in my heart. Self care is so important though. Many friendships have been strengthened by the compassion they have shown, and I have a good network of friends and family, including fellow loss mamas, who are all amazing and who I would be lost without.

So here we are. What amazes me sometimes is that I am still standing, that my little family of three living souls has survived so far. Sometimes it’s important to recognise the journey, how far I have travelled, and recognise that, while in those early days I felt further and further from Caius, I know that he is now with us, in our hearts, in our souls, in our very essence, and in every positive action every day.

Caius Jonah Hale, born 30th January 2016, 6lb 6oz, 53cm long, forever in our hearts.

Kristen: Right Where I Am 2018: 5 months

Five months ago today on the 18th February we met our beautiful daughter but not the way we ever imagined. Two days before, at 38 weeks and 5 days, we learned of Abbie's death. I had gone into hospital that Friday night with reduced movements to be told 'I'm sorry, there is no heartbeat' - the words that changed me forever.

Meeting Abbie was bitter sweet. She was perfect and looked like her big sister (our 3 year old, Holly). I couldn't believe we wouldn't get to take her home to meet Holly and the rest of our family.

Five months later and I wonder who Abbie would've been. Would she cry all night? Who would she look like now? Would Holly love her baby sister as much as we imagined she would?

Getting through a day is a challenge but is made easier with having a toddler keeping me busy. It's evenings I find difficult. With Holly in bed and toys away the house is very quiet and feels very empty. Abbie's things should be all around us instead of packed up in her nursery. I should be enjoying the very little precious time to myself but instead I'm counting down the hours until the next day starts again.

I still cry but not as often as before. I'm sad and miss Abbie more than I can express in words. I would do anything to bring her back and have her here with us.

What is different now though is that I'm now hopeful for the future. Hopeful that we will bring another baby home. Hopeful that we can introduce Holly to a brother or sister. Hopeful that we can experience joy again.

Emma: Right Where I Am 2018: 5 years 2 months

The first time I wrote a 'right where I am' was just 1 month after we had Oscar. In some ways it feels like no time has passed but in others it feels oh so far away.  The death of Oscar has changed my world and my soul more than I can describe. I'm not that same person I was back when I was happily expecting Oscar, but I don't think who I am is a bad thing.

Since losing Oscar I very quickly got involved with our local branch of Sands. I couldn't dream of returning to my job in mental health but I needed my time to be filled. Then in January 2016 I became chair of that local group, a somewhat unwanted change but one I put my whole heart into. Then, just hours from it being 5 years since we discovered Oscar had died, I got a call that I'd been offered the job I'd wanted within the charity Sands. Just moments before that call I was sobbing on a train, wondering why on earth I hadn't remembered to take this day as leave. Then the call came that signalled to me Oscar was looking out for me.

I've always been on the spiritual side and losing Oscar didn't really strengthen or weaken this. Late last year I went to a show of a medium I had been to before who is just amazing. I have seen many mediums who have given people such weak random messages but this lady is undeniable. Strangely enough on the way there that evening I'd given a little request to the sky and wanted my Nana to come through if possible. The lady came onto the stage and within seconds said she had a baby with her who was born sleeping and his name is Oscar. The gasp of my friend next to me led her to me and she continued to described his garden (grave) and the differences of him and his sister. He made a request for a tractor toy and told me he loved me. And then she was done, I had to sit for another 90 minutes listening to others messages when all I wanted to do was sit and digest the messages from my boy.

That night on my drive home something shifted inside of me. I realised for the first time I'd been able to hear from my son, what he wanted and how he felt and that was incredible. Since that night something is different, my relationship with my son feels strengthened and I can cry less for him.

So I realise that this 'right where I am' has been rambling but the message I guess I want to pass on is that 5 years later I still miss and love my son dearly but I'm ok. I've been led onto a different path and now work for a charity that is making things better for babies and families. I'm ok.

~~~~~

You can read Emma’s previous post here:

Right Where I Am 2013: 1 month

Clara: Right Where I Am 2018: 7 years 3 months 3 days followed by 6 years 2 months 13 days

Every year I wonder whether to even write this. And every year I do, although I wonder where to start and I struggle to find the words.

We are more than 7 years into this 'loss journey' now. I can't believe that amount of time has gone past. In the space of just 2 and a half years, we lost 5 babies - 3 miscarriages and 2 stillbirths, our precious girls Molly and Grace. Some days it feels like just yesterday that I held my girls for the first and last times. Those precious hours with them are so clear in my mind. It makes me smile as much as it makes me hurt.

The grief is still there. I don't think it every really goes away. But it changes all the time. It's both happy and sad. Days when it is raw, days when it just hovers on the edge, days when it's a little sign or a little reminder. It colours everything.

The grief will never go I don't think. How could it? How could anyone ever 'get over' the loss of a child? But life comes back in around it and time makes it easier to carry. Happiness comes back. Joy comes back. Life goes on. I remember talking to my gran after Molly died about her little girl who was stillborn in the late sixties. She was still grieving for that little baby. She was never allowed to see her or hold her or name her or bury her or talk about her. Although name her she did - baby Angela. I felt lucky that I had been able to hold my girls, cuddle them, dress them, name them, bury them. Molly's death gave us the impetus as a family to find out exactly where Angela had been buried by the hospital and we did. And 46 years after she was born, my grandparents were finally able to have her name added to the registry of stillbirths (at the time, stillbirths at full term - beyond 36 weeks - had to be registered, although they were rarely given names as it wasn't encouraged). They were also able to lay a stone at her grave. I know that brought my gran great comfort.

But back to me and my own personal journey...

I continue my involvement with Sands Lothians (albeit mostly behind the scenes dealing with their Twitter account), trying to give a little back in thanks to the lifeline they threw to me in those early years. I continue to dip in and out of online forums, trying to help and support others dealing with similar types of loss. I continue to research MPFD and passing on that research to all who contact me - it makes me so happy to know that others have gone on to carry healthy babies despite this awful condition.

My main battle over the past couple of years, however, has been living with the guilt that Cara will most likely never have a living sibling. And I am at the point where I have accepted this and it's okay. I used to find the 'is she an only one' and 'plans for more' questions really difficult, particularly when I didn't get a good response to telling people she will be an only child. Sometimes I explain why, sometimes I don't. Depends on the person and the moment. What I always make clear though is that she is such a blessing and a little miracle.

She is a happy and funny 4 year old who finds absolute joy in everything. She occasionally mentions Molly and Grace in conversation but she doesn't fully understand. And how could she? How do you process that at 4 years old? I don't want her to know that babies die. She has the usual childhood questions about death, particularly around her great-grandparents. We tell her people go to Heaven when they are very old as their bodies don't work any more. She has accepted this to a point. She will say that Molly and Grace are in Heaven. She knows that she couldn't grow in my tummy because 'it didn't work properly' and that is why her big sisters are not here with us. But I dread her asking me why did this happen if they weren't old but so far she hasn't asked that question. Yet.

(Cara checking out names written in the sand by big cousin Maia - Calgary Bay, Isle of Mull)

Ultimately though, we are surviving. We are living. We are happy. We have been lucky to have held and kissed all 3 of our girls and totally blessed to be able to kiss our youngest goodnight at every bedtime.

~ ~ ~ ~ ~

You can read my previous Right Where I Am posts by clicking on the links below:

Right Where I Am 2017: 6 years 4 months 3 days followed by 5 years 3 months 13 days
Right Where I Am 2016: 5 years 4 months 3 days followed by 4 years 3 months 13 days
Right Where I Am 2015: 4 years 3 months 1 day followed by 3 years 2 months 11 days

Right Where I Am 2014: 3 years 3 months followed by 2 years 2 months 1 week

Right Where I Am 2013: 2 years 2 months 2 weeks followed by 1 year 2 months

Right Where I Am 2012: 1 year 2 months followed by 1 month 10 days

You can read more about my condition and my story here:

Massive Perivillous Fibrinoid Deposition

My Story

When loss keeps on happening...