It's my daughter's birthday, today. It's also the anniversary of the day she died in my arms, following (appropriately), the longest night of the year, and the longest night of my life - awaiting a Caesarian section I did not want, not knowing if she would live or die.
No birthday cards, no excited one-year-old to share the day with. No decisions to make about how to divide presents up for Christmas and birthday. Instead, I'll be bringing Christmas magic to other children, performing in three shows today... Which is by far the best place for me to be.
It turns out, in many ways, anniversaries are no harder than any other day - because I don't need reminders about my daughter. On some level, I think of her every minute. In fact, over the last year, I've learned that I think of my son and daughter with equal frequency. At first, I waited for the day I would be able to control the memories. I knew I would never forget, but I mistakenly thought there would come a time when I would be able to actively choose when I thought about her. Perhaps there would be reminders that brought her to the forefront of my mind. It turns out, I was wrong.
I didn't truly understand until I became a parent, that your children are always, constantly on your mind. This is true regardless of whether or not they are physically present. My son is sometimes apart from me - at school, or at home while I'm working, or even just in a different room - but I think of him all the time, as any parent does. My daughter is not physically here with us. But I think of her all the time, too. In that way, my children are equal, and parenting a living child is no different to parenting a child who is no longer with us. There is no such thing as a "reminder," she is just there. Present, in my thoughts, and always will be.
A year on, we still do not know why she died. We have been told there is no possibility of answers before March at the very earliest. I can't say more about that right now, because although I have learned to cope with grief, I have yet to learn to cope with uncertainty and lack of answers, and that is something I can't dwell on today. Let's just say that it never even crossed my mind, that a year after her death, I would be facing her anniversary without being any closer to knowing what caused her to be taken from me, and this ongoing lack of closure has been one of the hardest hurdles.
I do know Holly Rose is as much loved today as she was for the few minutes I got to hold her, before she passed away. She only ever knew two things: love, and music. She listened to me sing as she died, and I could not have wished for more than for her short life to be filled with those two things.
Today, as every day, I will be singing for her (albeit through a cold!).
Here's "Holly's Carol," which I recorded for her funeral (again, I was ill at the time, so the recording is less than perfect, but it is raw, and real, and filled with love for my daughter). It's Christmas, so what better timing that to listen to this traditional carol, which I associate with my beautiful little girl?
Many thanks to Michael Lovelock for the musical arrangement and instrumental backing, and to Jill Priest for the vocal recording and mixing.
Saturday 22 December 2018
Wednesday 31 October 2018
It's Halloween: Let's Talk About Death
Please excuse the following rant in advance. I’ve never been particularly comfortable with some aspects of Halloween, I just think our version is a grotesque concept. For one thing, Trick-or-Treat = standing on a stranger’s doorstep and basically threatening them unless they give you something nice, despite having done nothing to deserve it…
In the UK we have this ghoulish, horrible, frightening representation of the dead. We never really talk about death until October, and then it’s represented by blood, gore, and horror. I just find it so incredibly tasteless and unhealthy. We all die. It’s the one certainty in life - even more certain than birth or marriage, or all the other things that are expected and celebrated in life. It’s the one thing we know will happen, and it doesn’t have to be hideous.
Death can be beautiful, but nobody ever talks about it. My daughter’s birth and death were peaceful and beautiful. Sad. But beautiful. Even after she died, she was beautiful. I do not, cannot, and will not associate her with the awfulness that seems to represent death in this country. She was not hideous, she was not scary, she was not gross, or ghoulish, or disgusting, or any of those things that seem to appear at this time of year. I find it upsetting that death is treated like such a horrible, terrifying thing.
I feel like Halloween turns death into some gory spectacle. It's not just “harmless fun” (which is the argument I’m always given when I try to start a dialogue about death, and yes, a part of the old me can appreciate the "harmless fun" of kids dressing up, and getting high on candy). But I think it’s damaging that death is represented in such a negative way, and then generally silenced for the rest of the year. Death should be part of an ongoing conversation, so that when it happens, it’s easier to deal with. It shouldn’t be hidden away until October, and then paraded around like some frightening freak-show.
Holly’s death was beautiful. God knows it wasn’t what I wanted for her, or for me, but if there is a right way to die, then she died with dignity and it is one of few things I was able to do for her. At the other end of the spectrum, my elderly Gran’s death was equally beautiful, in a different way. My Mum was with her, and she quietly just slipped away, and was released from the horrendous illness that had been so cruel to her for the last years of her life. Her death was liberating, it set her free.
But here we are on Halloween, surrounded by these awful, upsetting, hideous representations of death. I wish I could see it as just harmless fun because my six-year-old wants to go trick-or-treating, and I suppose, to him, he only sees the “fun” side with all the sweets and candy, and I don't want to deny him that. But I just can’t help feeling this representation of death is not healthy. I don’t want to be around it. I don’t want my beautiful daughter to be associated with it. I want to protect her from any negative associations and Halloween to me this year, just feels so oppressively negative.
I have always tried to turn her life - and death - into something beautiful. To create positive memories, rather than remember her only with sorrow. So, while everyone else is surrounding their homes with macabre images, I took her beautiful bauble (containing her ashes) outside into the autumn sunlight, and photographed some tributes to her. There is beauty in everything, if you look for it. Even in death. At this time of year (and I admit that I am probably being over sensitive during the run up to the anniversary of Holly's birth, and I'm prone to overthinking everything anyway), I'm doing my best to hold onto that, in spite of what feels like an onslaught of grotesqueness associated with death...
And off I go... Trick-or-Treating with my son... in a controlled, and sensible way, in spite of my own feelings... Because that is what parents do for their children, and I don't want to deprive him of his "fun."
In the UK we have this ghoulish, horrible, frightening representation of the dead. We never really talk about death until October, and then it’s represented by blood, gore, and horror. I just find it so incredibly tasteless and unhealthy. We all die. It’s the one certainty in life - even more certain than birth or marriage, or all the other things that are expected and celebrated in life. It’s the one thing we know will happen, and it doesn’t have to be hideous.
Death can be beautiful, but nobody ever talks about it. My daughter’s birth and death were peaceful and beautiful. Sad. But beautiful. Even after she died, she was beautiful. I do not, cannot, and will not associate her with the awfulness that seems to represent death in this country. She was not hideous, she was not scary, she was not gross, or ghoulish, or disgusting, or any of those things that seem to appear at this time of year. I find it upsetting that death is treated like such a horrible, terrifying thing.
I feel like Halloween turns death into some gory spectacle. It's not just “harmless fun” (which is the argument I’m always given when I try to start a dialogue about death, and yes, a part of the old me can appreciate the "harmless fun" of kids dressing up, and getting high on candy). But I think it’s damaging that death is represented in such a negative way, and then generally silenced for the rest of the year. Death should be part of an ongoing conversation, so that when it happens, it’s easier to deal with. It shouldn’t be hidden away until October, and then paraded around like some frightening freak-show.
Holly’s death was beautiful. God knows it wasn’t what I wanted for her, or for me, but if there is a right way to die, then she died with dignity and it is one of few things I was able to do for her. At the other end of the spectrum, my elderly Gran’s death was equally beautiful, in a different way. My Mum was with her, and she quietly just slipped away, and was released from the horrendous illness that had been so cruel to her for the last years of her life. Her death was liberating, it set her free.
But here we are on Halloween, surrounded by these awful, upsetting, hideous representations of death. I wish I could see it as just harmless fun because my six-year-old wants to go trick-or-treating, and I suppose, to him, he only sees the “fun” side with all the sweets and candy, and I don't want to deny him that. But I just can’t help feeling this representation of death is not healthy. I don’t want to be around it. I don’t want my beautiful daughter to be associated with it. I want to protect her from any negative associations and Halloween to me this year, just feels so oppressively negative.
I have always tried to turn her life - and death - into something beautiful. To create positive memories, rather than remember her only with sorrow. So, while everyone else is surrounding their homes with macabre images, I took her beautiful bauble (containing her ashes) outside into the autumn sunlight, and photographed some tributes to her. There is beauty in everything, if you look for it. Even in death. At this time of year (and I admit that I am probably being over sensitive during the run up to the anniversary of Holly's birth, and I'm prone to overthinking everything anyway), I'm doing my best to hold onto that, in spite of what feels like an onslaught of grotesqueness associated with death...
And off I go... Trick-or-Treating with my son... in a controlled, and sensible way, in spite of my own feelings... Because that is what parents do for their children, and I don't want to deprive him of his "fun."
Tuesday 16 October 2018
Baby Loss Awareness Week
It's the end of Baby Loss Awareness Week, 2018 (#BLAW2018). I'm not sure how this week makes me feel, because for me, I don't need to raise my own awareness; baby loss is part of my reality. My blog is not limited to one week, it's part of a continuous narrative, sharing my ongoing journey through baby loss. One day, I intend to transfer these blog posts over to a new website, specifically for the purpose of remembering Holly Rose, but in the meantime, I'll continue to post here, and on Instagram (under the hashtag #RememberingHollyRose) where I've posted a few mini blog posts over the course of the last week.
Yesterday, I tweeted about baby loss awareness, and it was picked up and quoted by the press. Part of me wishes I had never strayed into the online world of social media on a day which made me feel vulnerable. But part of me is proud to continue to raise awareness, and to speak on behalf of myself and other baby loss parents who shouldn't feel silenced. So I'm sharing below one of the news articles that quoted me, along with the response I felt compelled to write in response to some unsympathetic comments I read.
I'm sure many of you are sick of #babylossawarenessweek (then again, maybe you didn't even know about it). Yesterday it concluded with the #WaveOfLight which was about remembering babies who died, worldwide. I attended a lovely service with a shocking number of other bereaved parents (literally - a shocking number, and that was just one service). Meanwhile, Meghan and Harry announced their pregnancy yesterday.
For many people, pregnancy announcements in general are a painful trigger, as a reminder of what they have lost - particularly if the loss is more recent. That can't be avoided. But this particular announcement completely took over the news, and overshadowed the wave of light on the one day of the year it takes place, during the one week when we can theoretically openly talk about #babyloss without the stigma of silence so frequently associated with it. That's the whole point of baby loss awareness week - to #breakthesilence - as it so often feels like something nobody is willing to talk about.
At least three news articles (that I know of) quoted me from Twitter, in articles about the royals announcing their pregnancy on #waveoflight day. On some sites, I read hurtful comments about "PC gone mad," and how everyone is so easily offended. It's not about being "offended," offended isn't even the right word. It's about being hurt, and you simply cannot tell people who are hurting, not to be hurt. Nobody is upset with Meghan and Harry for having a baby. But their advisers could have done better research, and if they genuinely didn't know about the timing - to me, that's even more sad. #Babylossawareness is needed. It's needed because when you've lost a child, you need to feel able to talk about them. That's all we ask, and for that to happen, there has to be understanding.
I've subsequently been trolled by people who presumably read my comment in one of the media articles. So, I apologise if you don't want to hear or think about #babyloss. Neither do I really, but it's part of my reality all day, every day. I'm sorry if my posts "offend" anyone. But #babylossawareness is needed for the sanity of parents like me.
Just a small number of the candles representing lost babies at one of the many "Wave of Light" services held for Baby Loss Awareness week.
My lovely boy, remembering his little sister at the Wave of Light.
#RememberingHollyRose
My Friend Mo
Dear Mo,
Looking back, I didn’t really have a "happy childhood." Hard to say why, there was no specific reason. Just an overwhelming sense that by school-age, I didn't really fit in. I liked books, words, and writing. I liked losing myself in an imaginary world somewhere between pen and paper, somewhere far away from mundane reality. You were the first person who shared that world with me.
You were not the most "popular" teacher in primary school. Your teaching methods were somewhat old-fashioned; you were strict and, by modern-standards, unconventional. But you saw something in me that others didn't. And I saw you in return. You were not just my teacher, you were my friend when I felt I had so few of them.
Our friendship transcended a gap of several decades. My favourite memory of you is the time I reduced you to tears, and somewhat-undignified snorts of laughter (I'm sorry to tell you that your snorting was much mocked by other pupils), over a slightly ridiculous English exercise from a set-text book. The chapter related to the postal service, and the specific task was "draw what you think a 'Dead Letterbox' looks like"... Even at the age of nine or ten, I questioned the educational value of the task, and mockingly took the instructions literally. I drew a faded letterbox on its side, at a 90 degree angle, with cracking paint, cobwebs, and a birds-nest balanced on top (and with pretentious attention to detail I knew only you would appreciate, the initials ‘VR’ for Victoria Royal): I will never forget queuing up with the other pupils, patiently awaiting my turn to have my work checked, knowing that the ludicrousness of the drawing would appeal to your sense of humour. Sure enough, you cackled and snorted for several minutes, while the other children stopped their chatter and sat in silence, staring at you. (I think it was quite a shock to them, that even teachers have a sense of humour).
The year after I left your class, during my final year of primary school, you made Christmas cards with your class. You’d made your own, by way of example, and I remember how special I felt, when you presented me with the card you'd made. It said, "I was trying to think of someone special to give this card to. It had to be you"... And so began the tradition of our annual Christmas cards to each other... although I wasn't to know, aged ten, that the tradition would continue for almost thirty years.
You retired from Ridgeway Primary School, just as I graduated up to secondary school, and our friendship could have ended there. Secondary school was a disappointment to me, and by December, aged 11, I was already struggling with a sense of isolation, and the feeling that nobody understood me. That year, you sent me another Christmas card, delivered to my home address. Again, I've never forgotten your words, they have stayed with me all these years. You wrote, in your familiar spidery handwriting, "I miss our conversations, your acute observations, of people and of life." And you stopped signing yourself "Mrs Burdett." You signed yourself, "Mo." And I knew then that you were no longer just my old teacher. You were also my friend.
Every year (admittedly, with the occasional late exception), I wrote back to you; sometimes at length, and sometimes just a few words. Meanwhile, your Christmas cards became more elaborate. Homemade cross-stitching, in festive patterns. I kept them all, too precious to part with - most years, I still display them. And I'd sometimes drop in to visit you when passing through Ridgeway, with a bunch of flowers or a belated update. Sometimes years would pass, but friends always pick up where they left off, and you would always pop the kettle on, with an amusing anecdote. Even after your beloved Hal passed away, you retained your sense of humour.
You always said I “had a way with words," and you encouraged me to use them. You told me more than once that there was a space saved on your (burgeoning) book shelf for my first novel. I took your confidence in me to heart. You taught me the importance of words, and the weight they carry. Whenever I write a piece I'm proud of, or read a favourite phrase, I always think of you, and will continue to do so.
In recent years, you had become physically frail, but your mind was as sharp as ever. Your Christmas cards were no longer hand-stitched, and some years they didn't arrive at all, but I always knew the kettle would be on if I called in to visit. The last time I saw you (only a few weeks ago), I was overjoyed to finally meet Rachel, your daughter, who I had heard so much about, after living all those years in Japan. Somehow our paths had never managed to cross, but I felt I knew her. So much of your wisdom is in her, and I felt I'd found an instant friend. It can't be coincidence I met her when I did, and I hope in years to come, I can pick up my friendship with her where my friendship with you left off.
My only regret is that I am writing these words to you now. Now that you can't read them. The last time I saw you, I felt compelled to write you this letter, and most of it was already mentally penned... I only wish I had not delayed sending it.
Life has taught me, there is no point telling people how you feel at funerals. Tell them now, while they can still appreciate the sentiment. Nobody knows better than myself, that you cannot know what tomorrow will bring. Don't put off until tomorrow what you can put in words today.
I wanted you to know that although it is many years since you first encouraged me to write, there is still a novel in me. I don't know the exact content yet, but I do know that you have to live before you can write. For that reason, I have taken my time, but one day, Mo, there will be a novel on your shelf (or maybe Rachel's), and it will have your name on the opening page, dedicated to you, because you were the first person to believe in me, when I desperately needed someone to.
I wish I had told you all this when I last saw you, and I felt the compulsion... Premonition, even. I should have trusted my instincts. But still... Words speak volumes, but actions speak louder still, and so, I hope you knew. I hope that you knew how much you meant, because you will not be forgotten.
So I can only echo your own words back to you, today. The words you wrote to me, aged 11, in a Christmas card. "I miss our conversations, your acute observations, of people and of life."
I will miss you, Mo. A good teacher is never forgotten, but a good friend, even less so.
With all my love to Rachel and David,
Rosanne.
xxx
Looking back, I didn’t really have a "happy childhood." Hard to say why, there was no specific reason. Just an overwhelming sense that by school-age, I didn't really fit in. I liked books, words, and writing. I liked losing myself in an imaginary world somewhere between pen and paper, somewhere far away from mundane reality. You were the first person who shared that world with me.
You were not the most "popular" teacher in primary school. Your teaching methods were somewhat old-fashioned; you were strict and, by modern-standards, unconventional. But you saw something in me that others didn't. And I saw you in return. You were not just my teacher, you were my friend when I felt I had so few of them.
Our friendship transcended a gap of several decades. My favourite memory of you is the time I reduced you to tears, and somewhat-undignified snorts of laughter (I'm sorry to tell you that your snorting was much mocked by other pupils), over a slightly ridiculous English exercise from a set-text book. The chapter related to the postal service, and the specific task was "draw what you think a 'Dead Letterbox' looks like"... Even at the age of nine or ten, I questioned the educational value of the task, and mockingly took the instructions literally. I drew a faded letterbox on its side, at a 90 degree angle, with cracking paint, cobwebs, and a birds-nest balanced on top (and with pretentious attention to detail I knew only you would appreciate, the initials ‘VR’ for Victoria Royal): I will never forget queuing up with the other pupils, patiently awaiting my turn to have my work checked, knowing that the ludicrousness of the drawing would appeal to your sense of humour. Sure enough, you cackled and snorted for several minutes, while the other children stopped their chatter and sat in silence, staring at you. (I think it was quite a shock to them, that even teachers have a sense of humour).
The year after I left your class, during my final year of primary school, you made Christmas cards with your class. You’d made your own, by way of example, and I remember how special I felt, when you presented me with the card you'd made. It said, "I was trying to think of someone special to give this card to. It had to be you"... And so began the tradition of our annual Christmas cards to each other... although I wasn't to know, aged ten, that the tradition would continue for almost thirty years.
You retired from Ridgeway Primary School, just as I graduated up to secondary school, and our friendship could have ended there. Secondary school was a disappointment to me, and by December, aged 11, I was already struggling with a sense of isolation, and the feeling that nobody understood me. That year, you sent me another Christmas card, delivered to my home address. Again, I've never forgotten your words, they have stayed with me all these years. You wrote, in your familiar spidery handwriting, "I miss our conversations, your acute observations, of people and of life." And you stopped signing yourself "Mrs Burdett." You signed yourself, "Mo." And I knew then that you were no longer just my old teacher. You were also my friend.
Every year (admittedly, with the occasional late exception), I wrote back to you; sometimes at length, and sometimes just a few words. Meanwhile, your Christmas cards became more elaborate. Homemade cross-stitching, in festive patterns. I kept them all, too precious to part with - most years, I still display them. And I'd sometimes drop in to visit you when passing through Ridgeway, with a bunch of flowers or a belated update. Sometimes years would pass, but friends always pick up where they left off, and you would always pop the kettle on, with an amusing anecdote. Even after your beloved Hal passed away, you retained your sense of humour.
You always said I “had a way with words," and you encouraged me to use them. You told me more than once that there was a space saved on your (burgeoning) book shelf for my first novel. I took your confidence in me to heart. You taught me the importance of words, and the weight they carry. Whenever I write a piece I'm proud of, or read a favourite phrase, I always think of you, and will continue to do so.
In recent years, you had become physically frail, but your mind was as sharp as ever. Your Christmas cards were no longer hand-stitched, and some years they didn't arrive at all, but I always knew the kettle would be on if I called in to visit. The last time I saw you (only a few weeks ago), I was overjoyed to finally meet Rachel, your daughter, who I had heard so much about, after living all those years in Japan. Somehow our paths had never managed to cross, but I felt I knew her. So much of your wisdom is in her, and I felt I'd found an instant friend. It can't be coincidence I met her when I did, and I hope in years to come, I can pick up my friendship with her where my friendship with you left off.
My only regret is that I am writing these words to you now. Now that you can't read them. The last time I saw you, I felt compelled to write you this letter, and most of it was already mentally penned... I only wish I had not delayed sending it.
Life has taught me, there is no point telling people how you feel at funerals. Tell them now, while they can still appreciate the sentiment. Nobody knows better than myself, that you cannot know what tomorrow will bring. Don't put off until tomorrow what you can put in words today.
I wanted you to know that although it is many years since you first encouraged me to write, there is still a novel in me. I don't know the exact content yet, but I do know that you have to live before you can write. For that reason, I have taken my time, but one day, Mo, there will be a novel on your shelf (or maybe Rachel's), and it will have your name on the opening page, dedicated to you, because you were the first person to believe in me, when I desperately needed someone to.
I wish I had told you all this when I last saw you, and I felt the compulsion... Premonition, even. I should have trusted my instincts. But still... Words speak volumes, but actions speak louder still, and so, I hope you knew. I hope that you knew how much you meant, because you will not be forgotten.
So I can only echo your own words back to you, today. The words you wrote to me, aged 11, in a Christmas card. "I miss our conversations, your acute observations, of people and of life."
I will miss you, Mo. A good teacher is never forgotten, but a good friend, even less so.
With all my love to Rachel and David,
Rosanne.
xxx
Friday 5 October 2018
Instagram: #TheGoodTheBadTheVainAndTheUgly
I've recently started using Instagram, since the purchase of a new phone with sufficient memory to enable me to download the app. For whatever reason, I'm currently finding it quite a liberating experience. It's the only place online where I merge all of my personas into one, and don't feel the need to filter my life. Consequently, my page is a bit of a mismatch of professional shameless self-promotion, everyday silliness, cute furries, dark days of grief, and everything in between. A combination of the vain, the mundane, the happy, and the heartbreaking. All part of the journey of self-acceptance since losing Holly Rose. Occasionally, I use it for a mini vent, and I find the sense of community there to be supportive and understanding. Social media can be both a blessing and a curse when you have experienced loss, and so I think it's important to share both the good days and the bad, rather than create a misleadingly perfect narrative.
On one of my down days, I recently wrote this "mini blog post" (complete with #hashtags), accompanied by the following picture for Instagram, and I'm sharing it here too. Feel free to follow me, and be prepared for an influx of random uploads, through good times and bad, and everything in between.
You may be wondering about the influx of selfies on my Instagram feed. (Those who know me will tell you I was never really a selfie-taker, and never quite got the hang of it). My newfound vanity is an attempt to accept "the new me." I long ago accepted that I will never again be the same as I was before - mentally, or physically. An attempt to see myself as others see me. People tell me "I look great," (I must admit, every "like" helps) but I look in the mirror and fail to see it.
Yesterday was a good day... Today... Not so much. I just watched a video of myself in the show I've been performing in for the last four months. (I'm proud to be in that show, it's helped me to regain a little of "the old me" in ways that nobody will ever really know). But all I see are the physical changes which represent the difference between "me now" and "me then". It's a painful visual reminder of the difference between who I am now, and who I was before.
#Grief doesn't disappear, we just learn to live with it. Maybe we simply become better at disguising how we feel. In the wake of loss, every emotion has a duality about it - happiness and sadness occur simultaneously. So I can post "flattering" selfies on the same day that I can post this slightly more realistic, honest #selfie of how I'm actually feeling right now.
#Loss has taught me that I am never alone. There is always someone who relates; but in order achieve understanding, we need to be #honest and open, in a way that people don't necessarily want to hear about, especially on social media.
I have always worn my heart on my sleeve, so I don't want to hide the bad days. Sometimes those bad days are also the good days. Everything is a grey area, there is no such thing as black and white.
I still get through very few days without crying (more now than I used to... and even that admission is tinged with guilt). I am also learning to live with myself, and attempting to love myself, as I am now. Sometimes that might mean using #allthefilters to paint myself in a #positive light - the way I'd like to be seen - the person I catch fleeting glimpses of.
Some days, I also look like this. And that's the #truth.
#babyloss #nofilter #HollyRose
On one of my down days, I recently wrote this "mini blog post" (complete with #hashtags), accompanied by the following picture for Instagram, and I'm sharing it here too. Feel free to follow me, and be prepared for an influx of random uploads, through good times and bad, and everything in between.
You may be wondering about the influx of selfies on my Instagram feed. (Those who know me will tell you I was never really a selfie-taker, and never quite got the hang of it). My newfound vanity is an attempt to accept "the new me." I long ago accepted that I will never again be the same as I was before - mentally, or physically. An attempt to see myself as others see me. People tell me "I look great," (I must admit, every "like" helps) but I look in the mirror and fail to see it.
Yesterday was a good day... Today... Not so much. I just watched a video of myself in the show I've been performing in for the last four months. (I'm proud to be in that show, it's helped me to regain a little of "the old me" in ways that nobody will ever really know). But all I see are the physical changes which represent the difference between "me now" and "me then". It's a painful visual reminder of the difference between who I am now, and who I was before.
#Grief doesn't disappear, we just learn to live with it. Maybe we simply become better at disguising how we feel. In the wake of loss, every emotion has a duality about it - happiness and sadness occur simultaneously. So I can post "flattering" selfies on the same day that I can post this slightly more realistic, honest #selfie of how I'm actually feeling right now.
#Loss has taught me that I am never alone. There is always someone who relates; but in order achieve understanding, we need to be #honest and open, in a way that people don't necessarily want to hear about, especially on social media.
I have always worn my heart on my sleeve, so I don't want to hide the bad days. Sometimes those bad days are also the good days. Everything is a grey area, there is no such thing as black and white.
I still get through very few days without crying (more now than I used to... and even that admission is tinged with guilt). I am also learning to live with myself, and attempting to love myself, as I am now. Sometimes that might mean using #allthefilters to paint myself in a #positive light - the way I'd like to be seen - the person I catch fleeting glimpses of.
Some days, I also look like this. And that's the #truth.
#babyloss #nofilter #HollyRose
Sunday 2 September 2018
Grieving Twice: Past and Future
"Be grateful you already have children," they say. And I am. And so I wrote this.
Some days, I feel like I am grieving twice. Those days creep up on me, when least expected. Often it's not the anniversaries (which one might expect), or even the physical reminders. More often than not, it's some innocuous trigger. An unanticipated reminder of a past that's long gone, and a future that will never come to be.
A video popped up on my Timehop. A joyful, nine month old Rowan, standing up six whole years ago. Propped up, holding on to his nappy chest, delightedly squeaking with uninhibited pleasure, while flapping the contents of the chest with his pudgy fist. His continuous smile, never dropping for an instant: I had forgotten that high-pitched squeal. In the background, behind the camera, I am laughing contentedly. An uncomplicated laugh that I was capable of then; free from the double-edged, dual-sided, guilt-tinged happiness I can just about muster up now. (Complex, simultaneous emotions are something I think you can only truly relate to when you have experienced loss. How I envy the simplicity of my past, of feeling only one emotion at a time).
For the first time, I realised that my children's birthdays are less than ten days apart. I mean, I suppose I knew. But in the immediate blur of reality that descended upon me so suddenly last Christmas, it never really sank in, and it's never occurred to me since. Holly would have been the same age now, that Rowan was in that video. She would have been nine months old. Admittedly, she would probably have been behind Rowan, so perhaps the comparison isn't a fair one (given that she was born prematurely). But even so. Out of nowhere, the realisation hit me like a tonne of bricks.
Perhaps she would have been standing. Maybe she would have been squeaking. Certainly she would have been smiling... Of course, all of these comparisons make the impossible assumption that she wasn't ill... and that simply wasn't the case... And so I never got to see her smile, or laugh. I never got to hear her voice. Newborn Holly was so very much like newborn Rowan, that I really don't have to look very far for a comparison. I know what her face might have been like, had she lived. I see her in my son's baby photos, as he grew.
And so, often, I feel like I am grieving twice: once for the past - the babyhood my son has outgrown, that I loved so much; and then grieving once again for the future - the babyhood and childhood my daughter will never experience. For the fact I thought I would re-live those baby days. For the hand-me-downs I'd lovingly kept, expecting to use again, that will never again be used for purpose, and are now doubly laden with sadness that they have been outgrown, and will also never be grown into.
I am eternally grateful for my son - more so now than ever. I can't even begin to describe the gratitude I feel, or the love I have for him. I will never, ever take him for granted, and I hope I can be the best parent to him that it's possible to be. But knowing how much I love him only serves as a reminder of how much I've lost in her. Every beautiful memory, every baby photo I have of him, is tainted by the bittersweet realisation that I will never have the opportunity to recreate those moments with her. I don't have to wonder how much I would have loved her. I already know, because I have him. My son is my constant and wonderful reminder of how amazing she could have been too. Loving him reminds me how much I miss her. I know exactly what I've lost, because I know how much I love him.
There are no winners in this game of loss. No one loss is easier than another, no matter what our circumstances in life. Nobody wins because it isn't a game anyone would choose to play.
I grieve for his past, and I grieve for her future. His firsts, are my lasts - they will never come around again. And while grieving, I'm simultaneously trying. Trying to be grateful for every moment. Trying to be strong for him.
Tuesday 26 June 2018
Holly Rose's Garden
In lilac and lavender, I sense your sweetness,
Your sunlight smiles upon me.
Where butterflies swarm to greet you, I too,
am drawn to gather memories
like nectar. Your scent revives me.
Deep in the greenwood, your presence lingers,
Vines intertwined,
Within prickled leaves of aged evergreen,
I will always find you. Everlasting, eternal:
You were the first tree. First, and last.
Through birdsong you sing anew;
transient nightfall owl lullabies,
joyous chorus with the dawn, ever hopeful.
Evensong, fading into mournful silence:
They know the score, those songbirds.
In blooms of white, you deliver peace.
Scarlet reflects my love, my love.
Your petals could not be kept,
nor contained. Your thorns cut deep,
but you grow, untethered, adored.
I seek you in friendships;
New, old, revived.
And find you in olive branches,
Echoed by those who speak your name.
I glimpse you in my own reflection,
Altered - scarred - healing.
Conflicted in time; frozen,
yet fleeting. You are spared
age’s indignities.
No mortal restrictions
confine your horizon.
You exist everywhere,
In everything, you live…
Only the edges are erased.
Photo added retrospectively. I created the image to match the poem.
Your sunlight smiles upon me.
Where butterflies swarm to greet you, I too,
am drawn to gather memories
like nectar. Your scent revives me.
Deep in the greenwood, your presence lingers,
Vines intertwined,
Within prickled leaves of aged evergreen,
I will always find you. Everlasting, eternal:
You were the first tree. First, and last.
Through birdsong you sing anew;
transient nightfall owl lullabies,
joyous chorus with the dawn, ever hopeful.
Evensong, fading into mournful silence:
They know the score, those songbirds.
In blooms of white, you deliver peace.
Scarlet reflects my love, my love.
Your petals could not be kept,
nor contained. Your thorns cut deep,
but you grow, untethered, adored.
I seek you in friendships;
New, old, revived.
And find you in olive branches,
Echoed by those who speak your name.
I glimpse you in my own reflection,
Altered - scarred - healing.
Conflicted in time; frozen,
yet fleeting. You are spared
age’s indignities.
No mortal restrictions
confine your horizon.
You exist everywhere,
In everything, you live…
Only the edges are erased.
On your birthday, I gave you song. On Holly's Day, I give you words.
But if I could, I would have given you the world.
Photo added retrospectively. I created the image to match the poem.
Holly's Day
A year ago, I woke up in the spare bedroom (I don't recall why I was in the spare bedroom. Probably because I was too hot. Possibly because I simply like it in there). I thought I ought to check I wasn't pregnant - just in case - although as usual, I had very little idea of where I was in any kind of cycle (in life, or otherwise).
I rummaged around in the back of a drawer, and found an old, spare, pregnancy test (they tend to come in packs, you know, even if you only need one - rendering the others 'spare'). To my surprise, a few seconds later, there were two undeniable lines. Those lines sprang up remarkably quickly. Not like my first pregnancy (which gave me several false negatives, before ultimately - many weeks later - proving to be ectopic, which explained the lack of a definite line).
Not like my pregnancy with Rowan, which was so unexpected (following the ectopic pregnancy, and having lost any hope for an easy conception after surgery) that I didn't even bother to test until he was already fairly well established...
Holly gave me a definite line. Right on cue. A positive line. A strong line. Positive, in more ways than one.
If I am honest, I was not instantly overwhelmed with joy. Holly wasn't "unplanned," but nor was another baby the focus of my future. We left it to chance, and circumstance provided. If truth be told, I hate pregnancy. Even without the ectopic pregnancy (no... not "the ectopic pregnancy"... Ivy. Her name was Ivy), which robbed me of any joy from Rowan's pregnancy, I still hated the experience of carrying him.
I was filled with excitement and anticipation, but that was separate from the feelings associated with actually being pregnant... which honestly, I hated. I felt like I had lost my own identity, giving up my body in order to grow another person... I love my career, and throughout the "obvious" stages of pregnancy with Rowan, my professional life suffered a hiatus, and I despised it, whilst I awaited the arrival of my new life - his new life - our new life...
And of course, at the end of it all, following a ridiculously easy birth (I feel justified in gloating over his easy delivery, given the comparison to Holly's birth), it was absolutely worth every moment. Every second, and then some. I loved being a mother. I loved those newborn days. To my surprise, I loved all the baby days. I loved maternity leave. It was magical. To me, it was magical, and while at times it was trying, I shocked myself by loving every moment. Who knew?
Last year, when those lines appeared, my life would never be the same again (although I hadn't yet anticipated that I would never again be the same person). I wasn't instantly overjoyed, because I knew it would mean a temporary career hiatus. It would mean putting "myself" on hold, while I prepared to be a mother to someone else - an entire, separate person, entering my life. Someone I knew my son would adore. Someone I knew that I would ultimately love beyond anything else. I wasn't instantly overwhelmed with joy, but I accepted this new direction my life would take, because I knew - without a shadow of doubt - that it would ultimately be worth it. I knew that my heart would expand.
Days later, I became overwhelmed with sickness. Sickness that never left me throughout pregnancy. I'd experienced brief nausea with Rowan, but this was different. It was constant, overwhelming, and it sapped almost every ounce of my energy. Nevertheless, I carried on. Professionally, and personally. I knew it would be worth it. I knew she was worth it.
I also knew she was a girl. I knew. (As I did with my first pregnancy, and as I knew that Rowan was a boy). My daughter. I longed for her, she was eagerly awaited, even if it pains me to admit how much I hated carrying her... I knew it would be worth it.
"Rowan's Day" is the 13th of May. It's the day I found out I was pregnant with him, and we celebrate it every year. I have never missed one, we treat his special day with greater importance than his birthday (due to the fact he was born within a week of Christmas, and it's nice to spread the celebrations out throughout the year). This year, "Rowan's Day" was his best yet. He had a well-attended party, with friends from near and far. It was the kind of party I always coveted (yet never achieved) as a child - and I hope he knows how lucky he is, and remembers in years to come.
"Holly's Day"... the day I found out I was carrying her.
So much has changed within a year. I am not the same person now that I was then. My life changed on that day, forever, although not in the way I thought it would. She came into existence, and she has never left. But part of me died the day that she did.
I never thought I would get hung up on dates. I never thought I would count the days, I am not generally one to dwell on reminders, I'm not overly sentimental. I'm extremely forgetful, and I am "that friend who will almost certainly forget your birthday" because I don't know what day of the week - or even month - it is.
I can't overlook "Holly's Day," and I can't believe that a year... but also a lifetime... has passed. Time has a contradictory quality, following loss. It stands still - it seems like an eternity has elapsed. And yet, somehow, it still keeps turning, and suddenly... who can believe a year has gone? Time slowed down while I was pregnant. It felt like I was awaiting her arrival forever. I wished my pregnancy away, but I never expected it to conclude the way it did - two months early. No, I didn't wish for that, and I carry the guilt of despising being pregnant, because it was the only time I got to spend with her. I can't sugarcoat the way I felt during that eternal pregnancy, but all along, I knew it would be worth it... And then after she arrived - lived, and died - time stopped moving altogether. It often feels like not a day has passed since that day in December. Yet... here we are... a year on since everything changed.
Holly's Day is just another day. Nothing has changed, and that's what hurts - there is nothing to celebrate. It is (to re-use my own phrase) "significantly insignificant." There are reminders of this time last year everywhere. I may not generally be overly sentimental, but reminders are all I have of Holly, and I see them in everything. The sunlight is the same. The house is the same. The hot, restless nights are the same. My life is outwardly the same... But everything... everything is different. And I will never be the same again.
I'm sorry, my love, that I can't buy you toys. I'm sorry you have no need for the pram in the cupboard, or the multicoloured, knitted baby socks I cuddled daily while I was touring - the first gift I bought for you. I'm sorry I cannot give you "Holly's Day" in the same way that your big brother has always been spoilt on his special day. I'm sorry I can't look back and wistfully wonder how a year has passed since that day, because it flew so quickly. That day is an eternity ago. An entire lifetime, because I was not the same person then.
I can promise you, that never a day, never an hour, goes by when I don't think of you. And it never will. I can promise you that "Holly's Day" is special to me, and always will be. I promise that every year, I will honour your day, just as I do for your big brother.
On your birthday, I gave you song. It was the only gift I could grant to you, and it comforts me to know that it was the only thing you heard. On Holly's Day, I give you words. Words that I can share with you, and with anyone who chooses to read them. I wish I could give you more.
Holly Rose, I can never repay the gift that you gave to me. You gave me gratitude. You grew my heart - double the size it was before. I will never, ever forget.
I rummaged around in the back of a drawer, and found an old, spare, pregnancy test (they tend to come in packs, you know, even if you only need one - rendering the others 'spare'). To my surprise, a few seconds later, there were two undeniable lines. Those lines sprang up remarkably quickly. Not like my first pregnancy (which gave me several false negatives, before ultimately - many weeks later - proving to be ectopic, which explained the lack of a definite line).
Not like my pregnancy with Rowan, which was so unexpected (following the ectopic pregnancy, and having lost any hope for an easy conception after surgery) that I didn't even bother to test until he was already fairly well established...
Holly gave me a definite line. Right on cue. A positive line. A strong line. Positive, in more ways than one.
If I am honest, I was not instantly overwhelmed with joy. Holly wasn't "unplanned," but nor was another baby the focus of my future. We left it to chance, and circumstance provided. If truth be told, I hate pregnancy. Even without the ectopic pregnancy (no... not "the ectopic pregnancy"... Ivy. Her name was Ivy), which robbed me of any joy from Rowan's pregnancy, I still hated the experience of carrying him.
I was filled with excitement and anticipation, but that was separate from the feelings associated with actually being pregnant... which honestly, I hated. I felt like I had lost my own identity, giving up my body in order to grow another person... I love my career, and throughout the "obvious" stages of pregnancy with Rowan, my professional life suffered a hiatus, and I despised it, whilst I awaited the arrival of my new life - his new life - our new life...
And of course, at the end of it all, following a ridiculously easy birth (I feel justified in gloating over his easy delivery, given the comparison to Holly's birth), it was absolutely worth every moment. Every second, and then some. I loved being a mother. I loved those newborn days. To my surprise, I loved all the baby days. I loved maternity leave. It was magical. To me, it was magical, and while at times it was trying, I shocked myself by loving every moment. Who knew?
______________________
Days later, I became overwhelmed with sickness. Sickness that never left me throughout pregnancy. I'd experienced brief nausea with Rowan, but this was different. It was constant, overwhelming, and it sapped almost every ounce of my energy. Nevertheless, I carried on. Professionally, and personally. I knew it would be worth it. I knew she was worth it.
I also knew she was a girl. I knew. (As I did with my first pregnancy, and as I knew that Rowan was a boy). My daughter. I longed for her, she was eagerly awaited, even if it pains me to admit how much I hated carrying her... I knew it would be worth it.
"Rowan's Day" is the 13th of May. It's the day I found out I was pregnant with him, and we celebrate it every year. I have never missed one, we treat his special day with greater importance than his birthday (due to the fact he was born within a week of Christmas, and it's nice to spread the celebrations out throughout the year). This year, "Rowan's Day" was his best yet. He had a well-attended party, with friends from near and far. It was the kind of party I always coveted (yet never achieved) as a child - and I hope he knows how lucky he is, and remembers in years to come.
"Holly's Day"... the day I found out I was carrying her.
So much has changed within a year. I am not the same person now that I was then. My life changed on that day, forever, although not in the way I thought it would. She came into existence, and she has never left. But part of me died the day that she did.
I never thought I would get hung up on dates. I never thought I would count the days, I am not generally one to dwell on reminders, I'm not overly sentimental. I'm extremely forgetful, and I am "that friend who will almost certainly forget your birthday" because I don't know what day of the week - or even month - it is.
I can't overlook "Holly's Day," and I can't believe that a year... but also a lifetime... has passed. Time has a contradictory quality, following loss. It stands still - it seems like an eternity has elapsed. And yet, somehow, it still keeps turning, and suddenly... who can believe a year has gone? Time slowed down while I was pregnant. It felt like I was awaiting her arrival forever. I wished my pregnancy away, but I never expected it to conclude the way it did - two months early. No, I didn't wish for that, and I carry the guilt of despising being pregnant, because it was the only time I got to spend with her. I can't sugarcoat the way I felt during that eternal pregnancy, but all along, I knew it would be worth it... And then after she arrived - lived, and died - time stopped moving altogether. It often feels like not a day has passed since that day in December. Yet... here we are... a year on since everything changed.
Holly's Day is just another day. Nothing has changed, and that's what hurts - there is nothing to celebrate. It is (to re-use my own phrase) "significantly insignificant." There are reminders of this time last year everywhere. I may not generally be overly sentimental, but reminders are all I have of Holly, and I see them in everything. The sunlight is the same. The house is the same. The hot, restless nights are the same. My life is outwardly the same... But everything... everything is different. And I will never be the same again.
______________________
I'm sorry, my love, that I can't buy you toys. I'm sorry you have no need for the pram in the cupboard, or the multicoloured, knitted baby socks I cuddled daily while I was touring - the first gift I bought for you. I'm sorry I cannot give you "Holly's Day" in the same way that your big brother has always been spoilt on his special day. I'm sorry I can't look back and wistfully wonder how a year has passed since that day, because it flew so quickly. That day is an eternity ago. An entire lifetime, because I was not the same person then.
I can promise you, that never a day, never an hour, goes by when I don't think of you. And it never will. I can promise you that "Holly's Day" is special to me, and always will be. I promise that every year, I will honour your day, just as I do for your big brother.
On your birthday, I gave you song. It was the only gift I could grant to you, and it comforts me to know that it was the only thing you heard. On Holly's Day, I give you words. Words that I can share with you, and with anyone who chooses to read them. I wish I could give you more.
Holly Rose, I can never repay the gift that you gave to me. You gave me gratitude. You grew my heart - double the size it was before. I will never, ever forget.
Two lines that changed everything.
Friday 22 June 2018
Ama
Six months ago today, my daughter graced us briefly with her presence. I spent yesterday's Summer Solstice by the seaside, trying not to think about where I was six months ago on Winter Solstice, awaiting her delivery in hospital, not knowing if she would live or die.
No hefty blog posts today. Just this incredibly beautiful video, "Ama" by Julie Gaultier.
Sunday 17 June 2018
Reminders
In the playground, with my son, it's a lovely sunny day, as he plays contentedly on the swing. We are joined by a mother and her toddler-aged daughter after nursery-school. The little girl is beautiful - laughing and smiling, fiercely independent - pushing her Mum away, wanting to prove her abilities alone. She climbs to the top of the slide, and then changes her mind about her independence, calling for her Mummy. I watch them slide down together, the child on her Mum's knee, blissfully giggling
The child walks with a gait; her feet are clubbed.
Holly's feet were clubbed.
Behind my sunglasses, my eyes stream with tears. I hide them: I have become an expert. The mum introduces herself, and I like her a lot. She is friendly, eloquent and easygoing. I am enjoying her company, but my mouth is dry. The playground is spinning, and I am unable to swallow. I recognise the signs of an oncoming panic attack, but I try to suppress it. I do not wish to cause offence. I cannot explain to a woman I just met, that her daughter is making me cry with envy.
Part of me wants to know the cause of her clubbed feet. I want to discuss it with her, but I equally don't want her to think that I consider her daughter to be anything less than perfect. I cannot find the words. Part of me wants to blurt out the story of the last year of my life. But it's irrelevant because by now, I cannot speak; I am struggling to breathe. Perhaps it is a blessing that I am unable to make conversation. In the event that this beautiful little girl shares Holly's condition, I know that I will find myself uncontrollably screaming.
The child falls over. My son rushes to pick her up. He comforts her, putting his arms around her. My jaw is clenched. I try not to scream.There are moments when I catch a glimpse of how my life could have been. Reminders of an alternative world, in which she might have lived.
In my mind, there are two versions of my little girl - my daughter - who lives on in my imagination. There is the version I pictured throughout pregnancy. The daughter I imagined from childhood. The baby who should have been born in February, kicking and screaming, bearing a different name. Brought into the world through a home birth, celebrated with bubbly. Healthy, chubby, and sharing so many of her facial features with my son. She would have been four months old, now, adored by her big brother. I find her in my son's baby photos, and in the dreams I had for her. In the small box of new baby clothes I'd bought for her (still untouched, brand new with tags), and in the pram that is folded away in the cupboard - unboxed, but unused.
That version was fantasy. She never existed, though I wasn't to know it. I loved the notion of her, the future I planned for her, the anticipation of who she might become. But she was never destined to be.
Then there is the version that is closer to reality. The poorly little girl born too soon, named for the timing of her premature Christmas birth. Imperfectly perfect, she would be six months old this week. The visions I have when I imagine my daughter Holly had she lived, range from a life spent on a hospital ward, unable to move, eat or breathe... to the little girl in the park, barely inhibited. The real version of my daughter was just as loved as the expected one.
As time goes on, reminders of the first version of my daughter - the healthy little girl I believed I was carrying - become fewer, as she slips further from my reality. At the start of this journey, I grieved for the future I'd pictured. Every baby, every bump, was a painful reminder of what I'd lost. But I no longer suffer that jolt back to reality simply from walking past the baby aisle in the supermarket. I am now able to genuinely congratulate others on their pregnancies and new babies without resentment. I am no longer jealous of those other babies. Other babies are not her. And she was unique.
But sometimes, at unexpected moments, I catch a glimpse of who she might have been, if her illness had allowed her to live. This version feels closer to the truth, and as such, when those moments strike me, it takes my breath away. I grieve all over again for the loss of my beautiful little girl - exactly as she was.
Friday 1 June 2018
Another Unexpected Twist
In another unexpected twist, we were eventually referred to the geneticist, and have now been given a THIRD diagnosis for Holly's cause of death. At this point, I am beginning to accept that we will probably never know for sure what caused her condition. The certainty I wanted and needed looks increasingly less likely, and we will have to settle for a "best educated guess" having ruled out other testable scenarios. It will be four-five months before DNA testing rules out a genetic cause. After that, we have to go with the geneticist's theory of "most likely cause" which is Amyoplasia, a developmental muscular condition with no known reason for onset, but which occurs at some point in pregnancy and is not usually fatal. Unlike both previous diagnoses, there is no explanation for this condition; it is neither genetic nor chromosomal, and is not present from conception. It is not degenerative, and not usually considered "incompatible with life," all factors we had previously accepted and "come to terms with." We now have to come to terms with the fact there is really no explanation or reason, and it seems incredibly unfair that she died, where other children have lived.
I will spend the rest of my life wondering if I caused her condition in some way (did I drink too much before I knew I was pregnant? Did I have the bathwater too hot? Logic says no. Medical professionals say no. But nevertheless, I will always wonder, and I will have to live with those questions).
I have been in touch with a British charity who specialise in "Arthrogryposis Multiplex Congenita" which is the umbrella term for her condition - most likely Amyoplasia (a form of AMC). They have been able to answer many of my questions, as I basically hit a brick wall trying to research this condition. It's fairly rare so there isn't a huge amount of information out there, and I was unable to find other examples of infants who'd died at birth. The charity were able to help me understand a little better, and basically, I have to mentally accept that despite this new diagnosis and the fact that others have lived with this condition, sadly in Holly's case, she was just too poorly. It wasn't Edwards Syndrome as initially thought, but it did have the same effect, the same physical symptoms, and ultimately - the same outcome. I have to accept that nothing could have been any different. I've had to re-read my own blog post in light of the most recent diagnosis, and try to reassure myself that nothing has changed. The reason behind her condition may be different but the end result was exactly the same, and there is nothing we could have done to save her.
Again, it is a lot to get my head around. This third diagnosis lacks the certainty I craved, and it raises more questions than it answers, making it hard to accept. Assuming that it is correct, I am of course, incredibly relieved that there are no further implications for my immediate family. But it is hard to accept that there is no explanation for why it happened, we were just incredibly unlucky. It's equally hard knowing that in theory, she could have lived... But in practice, the fact remains... She lives on, only in my memory, and through those her story touched. I can only hope and pray that her life meant something, and she is never forgotten.
I will spend the rest of my life wondering if I caused her condition in some way (did I drink too much before I knew I was pregnant? Did I have the bathwater too hot? Logic says no. Medical professionals say no. But nevertheless, I will always wonder, and I will have to live with those questions).
I have been in touch with a British charity who specialise in "Arthrogryposis Multiplex Congenita" which is the umbrella term for her condition - most likely Amyoplasia (a form of AMC). They have been able to answer many of my questions, as I basically hit a brick wall trying to research this condition. It's fairly rare so there isn't a huge amount of information out there, and I was unable to find other examples of infants who'd died at birth. The charity were able to help me understand a little better, and basically, I have to mentally accept that despite this new diagnosis and the fact that others have lived with this condition, sadly in Holly's case, she was just too poorly. It wasn't Edwards Syndrome as initially thought, but it did have the same effect, the same physical symptoms, and ultimately - the same outcome. I have to accept that nothing could have been any different. I've had to re-read my own blog post in light of the most recent diagnosis, and try to reassure myself that nothing has changed. The reason behind her condition may be different but the end result was exactly the same, and there is nothing we could have done to save her.
Again, it is a lot to get my head around. This third diagnosis lacks the certainty I craved, and it raises more questions than it answers, making it hard to accept. Assuming that it is correct, I am of course, incredibly relieved that there are no further implications for my immediate family. But it is hard to accept that there is no explanation for why it happened, we were just incredibly unlucky. It's equally hard knowing that in theory, she could have lived... But in practice, the fact remains... She lives on, only in my memory, and through those her story touched. I can only hope and pray that her life meant something, and she is never forgotten.
Friday 27 April 2018
A Beautiful Life and Death
An update, for those following. Please be aware the following blog post references the birth and death of my daughter, via C-Section, and may be distressing reading to some.
We are currently no further along with genetic investigations, and a definitive answer. I know I will not rest until I have definite answers for what caused her condition, and an explanation of the wider implications for my family (specifically, I am still worried about my son and desperately need to rule out any risk to his health).
However, in the meantime, we have received a copy of her postmortem report, as requested, and I have to say it has brought me a certain amount of peace and clarity. Although we still don’t know the cause of her complications, the paperwork has enabled me to better understand her condition itself. I now have a more comprehensive understanding of why she was unable to live; why the pregnancy appeared normal and there was no indication of her illness; and I have even gained some insight into what her “life” might have been like, had it been prolonged.
The night before my C-Section, when it had become obvious that there was a significant problem with the baby, but we were still unaware of the cause, I stayed awake and, in a moment of certain clarity, I re-wrote my birth plan. I had wanted an intervention free home-birth (assuming all was well with the baby), and I already knew that, for her sake, any semblance of that plan was gone. But it seemed important to me to maintain what little control I had, in a situation where control had effectively been taken completely out of my hands. My “revised birth plan” only had two options - one for if she lived, and one if she died. I wrote it on my computer, ready to show to the paediatrician in the morning.
When morning came, we were asked difficult questions. We were asked how far we wanted doctors to take Holly’s treatment, in the event that she was very obviously, seriously unwell. Options were discussed for “comfort care” and we were asked if we wanted to prolong her life “at all costs” (those were not the words used, but it was the gist of what was said). In response, I showed the paediatrician my written birth plan. She read it carefully, and I recall her exact response, “I completely agree.” I still have the words I wrote on my computer, and have copied and pasted them below.
"We want you to do all you can to save our baby. However, in the event that she clearly doesn’t have long to live, please allow us to hold her and avoid any painful interventions. I would prefer her to pass away with dignity, and without pain - in our arms, in preference to someone else’s or an incubator. If her life is going to be short, we would prefer it to be as free as possible from pain and distress.
In the event that the baby is healthier than expected, if there is any way to offer skin to skin at the earliest opportunity, please do your best to allow this. If not, I understand."
Because of this discussion, when Holly was born, the doctors did their best to resuscitate her, but it became obvious within minutes that she was not responding to treatment. The words “comfort care” were used, and we knew instantly, as our beautiful daughter was handed to us and placed into our arms, that it meant she was dying.
Somehow, despite the rapid escalation of events leading up to this moment, I’d had the presence of mind to bring recordings of me singing into the operating theatre. As we held her, we played her recordings of me singing “The Rose,” and “Baby Mine.” She looked comfortable. She looked peaceful. She never opened her eyes, nor did she move her limbs. I saw her lips move, once… It was impossible to know at which moment she left us. But I do know she heard me singing, and I do know that in spite of such awful circumstances, we gave her “a beautiful death.” She was surrounded by love - not only from us, but it was evident in the tears of everyone present in that room. It was tranquil, and sensitive, and when I recall the brief minutes of her life, it is with a sense of peace. Considering that the C-Section was the last thing I wanted, and had in fact been my worst fear, it is the beauty of her death that I remember. She died with dignity.
In the early days following her death, I never doubted that we had done the right thing for her. The sense of peace and even acceptance that she left behind, stayed with me. I was sad for her loss, but I had absolute confidence that we had done the very best for her that we could; we had granted her a beautiful death, and the gift of song.
As time wore on, I lost sight of the beauty of those moments. Without answers about why she died, my certainty that we had done the best thing for her gave way to questions and doubts. I began to wonder if she could have lived, if we should have tried harder to save her, if I could have done something differently at any point in my pregnancy. My faith that her short time on earth was the best it could be for her, gradually eroded. Without answers, I found myself questioning everything, replaying the moments of her life overlooking the fact that her life - and death - were beautiful.
With the postmortem report we received this week, I was able to pore over medical terminology, and research what her condition would have meant for her. Holly was “normal” and perfectly formed in so many ways. Her brain would have functioned as any other baby, and (most comforting of all), I can confirm, having read her postmortem, that her hearing would have been fine; she would have heard me sing (I can’t tell you how grateful I am to be able to draw the conclusion that she would have heard me sing while pregnant, and during her short life). Her condition meant that her muscles didn’t develop properly. Her otherwise normally developing brain was trapped in a body that was incapable of breathing for herself, swallowing for herself, or even moving her limbs. The heart is also a muscle, and hers, tragically, was simply not capable of allowing her to live. In a degenerative, untreatable condition, there is no hope of improvement, only decline.
The more understanding I’ve gained of her physical condition, the more I am able to grasp that my poor, beautiful, and likely intelligent daughter, could never have “lived,” even if we had made different choices at her birth. Even if we had requested every intervention possible, “at all costs,” even if machines had taken over her breathing, she would never have been able to come off life-support. She would never have left NICU. She would never have been able to physically respond to us, even if she was mentally alert - she would have been trapped in her own body, and she would never have improved. God knows, I did not want to lose my daughter, and I wish she had lived… but not like that. I would not have wished to extend her suffering “at all costs,” even if it had meant I got to love her for longer… Even if I had known then what I know now. If I had months to research and prepare for that moment. If I somehow could have predicted the future… I would not have done anything different: it could not have changed the outcome. I am so grateful for that moment of clarity when I wrote those words with absolute certainty that I was doing the right thing for my daughter.
The erosion of that certainty over time has been a hard journey to bear, and I still have moments of questioning and doubt… But I now understand why the paediatrician came to thank me in person after Holly’s death for writing those words (I didn't fully grasp this at the time, though I was touched by her sincerity). It would have made her job easier, knowing that she was acting in accordance with our wishes. She must have known with a greater understanding than we did at the time, that there was no hope for my poor little girl. That extending her life artificially would only prolong the inevitable outcome, but with less dignity, less beauty, and more suffering for all concerned.
It has been a long, hard, journey. And I am still a long way from the “closure” I need from this awful situation. I won’t be able to truly achieve tranquillity and genuine acceptance until I have the answers I need and am able to understand to the best of my ability how and why this happened, and how it might affect the future of my family. However, with a better understanding of Holly’s medical condition, and all of its implications for her, I do at least feel a certain restoration of the clarity of conscience that I experienced in those early days. I like to believe that peace and acceptance was the gift that Holly imparted to me when she left. For a while, that gift has seemed out of reach, but I am beginning to believe that I might, once again, be able to grasp the tangible positives she left me with. That I might ultimately be a better person because she touched my life, so briefly.
We are currently no further along with genetic investigations, and a definitive answer. I know I will not rest until I have definite answers for what caused her condition, and an explanation of the wider implications for my family (specifically, I am still worried about my son and desperately need to rule out any risk to his health).
However, in the meantime, we have received a copy of her postmortem report, as requested, and I have to say it has brought me a certain amount of peace and clarity. Although we still don’t know the cause of her complications, the paperwork has enabled me to better understand her condition itself. I now have a more comprehensive understanding of why she was unable to live; why the pregnancy appeared normal and there was no indication of her illness; and I have even gained some insight into what her “life” might have been like, had it been prolonged.
The night before my C-Section, when it had become obvious that there was a significant problem with the baby, but we were still unaware of the cause, I stayed awake and, in a moment of certain clarity, I re-wrote my birth plan. I had wanted an intervention free home-birth (assuming all was well with the baby), and I already knew that, for her sake, any semblance of that plan was gone. But it seemed important to me to maintain what little control I had, in a situation where control had effectively been taken completely out of my hands. My “revised birth plan” only had two options - one for if she lived, and one if she died. I wrote it on my computer, ready to show to the paediatrician in the morning.
When morning came, we were asked difficult questions. We were asked how far we wanted doctors to take Holly’s treatment, in the event that she was very obviously, seriously unwell. Options were discussed for “comfort care” and we were asked if we wanted to prolong her life “at all costs” (those were not the words used, but it was the gist of what was said). In response, I showed the paediatrician my written birth plan. She read it carefully, and I recall her exact response, “I completely agree.” I still have the words I wrote on my computer, and have copied and pasted them below.
"We want you to do all you can to save our baby. However, in the event that she clearly doesn’t have long to live, please allow us to hold her and avoid any painful interventions. I would prefer her to pass away with dignity, and without pain - in our arms, in preference to someone else’s or an incubator. If her life is going to be short, we would prefer it to be as free as possible from pain and distress.
In the event that the baby is healthier than expected, if there is any way to offer skin to skin at the earliest opportunity, please do your best to allow this. If not, I understand."
Because of this discussion, when Holly was born, the doctors did their best to resuscitate her, but it became obvious within minutes that she was not responding to treatment. The words “comfort care” were used, and we knew instantly, as our beautiful daughter was handed to us and placed into our arms, that it meant she was dying.
Somehow, despite the rapid escalation of events leading up to this moment, I’d had the presence of mind to bring recordings of me singing into the operating theatre. As we held her, we played her recordings of me singing “The Rose,” and “Baby Mine.” She looked comfortable. She looked peaceful. She never opened her eyes, nor did she move her limbs. I saw her lips move, once… It was impossible to know at which moment she left us. But I do know she heard me singing, and I do know that in spite of such awful circumstances, we gave her “a beautiful death.” She was surrounded by love - not only from us, but it was evident in the tears of everyone present in that room. It was tranquil, and sensitive, and when I recall the brief minutes of her life, it is with a sense of peace. Considering that the C-Section was the last thing I wanted, and had in fact been my worst fear, it is the beauty of her death that I remember. She died with dignity.
In the early days following her death, I never doubted that we had done the right thing for her. The sense of peace and even acceptance that she left behind, stayed with me. I was sad for her loss, but I had absolute confidence that we had done the very best for her that we could; we had granted her a beautiful death, and the gift of song.
As time wore on, I lost sight of the beauty of those moments. Without answers about why she died, my certainty that we had done the best thing for her gave way to questions and doubts. I began to wonder if she could have lived, if we should have tried harder to save her, if I could have done something differently at any point in my pregnancy. My faith that her short time on earth was the best it could be for her, gradually eroded. Without answers, I found myself questioning everything, replaying the moments of her life overlooking the fact that her life - and death - were beautiful.
With the postmortem report we received this week, I was able to pore over medical terminology, and research what her condition would have meant for her. Holly was “normal” and perfectly formed in so many ways. Her brain would have functioned as any other baby, and (most comforting of all), I can confirm, having read her postmortem, that her hearing would have been fine; she would have heard me sing (I can’t tell you how grateful I am to be able to draw the conclusion that she would have heard me sing while pregnant, and during her short life). Her condition meant that her muscles didn’t develop properly. Her otherwise normally developing brain was trapped in a body that was incapable of breathing for herself, swallowing for herself, or even moving her limbs. The heart is also a muscle, and hers, tragically, was simply not capable of allowing her to live. In a degenerative, untreatable condition, there is no hope of improvement, only decline.
The more understanding I’ve gained of her physical condition, the more I am able to grasp that my poor, beautiful, and likely intelligent daughter, could never have “lived,” even if we had made different choices at her birth. Even if we had requested every intervention possible, “at all costs,” even if machines had taken over her breathing, she would never have been able to come off life-support. She would never have left NICU. She would never have been able to physically respond to us, even if she was mentally alert - she would have been trapped in her own body, and she would never have improved. God knows, I did not want to lose my daughter, and I wish she had lived… but not like that. I would not have wished to extend her suffering “at all costs,” even if it had meant I got to love her for longer… Even if I had known then what I know now. If I had months to research and prepare for that moment. If I somehow could have predicted the future… I would not have done anything different: it could not have changed the outcome. I am so grateful for that moment of clarity when I wrote those words with absolute certainty that I was doing the right thing for my daughter.
The erosion of that certainty over time has been a hard journey to bear, and I still have moments of questioning and doubt… But I now understand why the paediatrician came to thank me in person after Holly’s death for writing those words (I didn't fully grasp this at the time, though I was touched by her sincerity). It would have made her job easier, knowing that she was acting in accordance with our wishes. She must have known with a greater understanding than we did at the time, that there was no hope for my poor little girl. That extending her life artificially would only prolong the inevitable outcome, but with less dignity, less beauty, and more suffering for all concerned.
It has been a long, hard, journey. And I am still a long way from the “closure” I need from this awful situation. I won’t be able to truly achieve tranquillity and genuine acceptance until I have the answers I need and am able to understand to the best of my ability how and why this happened, and how it might affect the future of my family. However, with a better understanding of Holly’s medical condition, and all of its implications for her, I do at least feel a certain restoration of the clarity of conscience that I experienced in those early days. I like to believe that peace and acceptance was the gift that Holly imparted to me when she left. For a while, that gift has seemed out of reach, but I am beginning to believe that I might, once again, be able to grasp the tangible positives she left me with. That I might ultimately be a better person because she touched my life, so briefly.
Tuesday 17 April 2018
Lack of Closure
For those outside of immediate family, who don't already know. We had an appointment yesterday to discuss Holly's cause of death. It wasn't Edwards Syndrome (which was the diagnosis we had expected, and "come to terms with"). We won't have definite answers until further levels of genetic testing, but it appears to be a rare congenital muscular myopathy, which in many ways, is the worst possible news because it means we still don't have the closure we needed. There will be another, potentially long wait for answers, and those answers may have wider implications for immediate family. It is a major setback, and I do wonder (foolishly, perhaps) just how many "worst-case-scenarios" life intends to throw at me.
When Holly first died, I was obviously incredibly sad for her loss, but grief I could cope with. I felt peaceful, I felt acceptance. I felt like her death was some sort of spiritual enlightenment, that there was a reason behind it - part of a bigger picture that I couldn’t yet understand, but would eventually become clear to me. I felt she served a purpose. I dared to believe that my life, and those around us would somehow be better because she had so briefly been a part of it.
Maybe it was shock. Maybe it was oxytocin. I don’t know, but in those early days I felt like I was functioning on some higher level of consciousness. In the weeks that followed, I felt productive and positive. In spite of the awfulness of Holly’s death, I was proud of her funeral. I was proud of the beautiful death we were able to give her. I was proud of my ability to parent my living son, despite the family’s loss. I was proud to be Holly’s Mummy, and of keeping her memory alive through my blog and my writing…
As time has gone on, it has become impossible to maintain that sense of peace, of acceptance, or pride. Without answers, without closure, I have tried so hard to remain positive and keep going, but some days I don’t even know who I am any more. In recent weeks, I have dealt with setbacks, and lack of certainty, PTSD, memory-loss, and debilitating panic attacks. It has been a difficult journey, and a long wait for answers, culminating in yesterday's news, which was not only unexpected, but it was my worst-case-scenario, and triggered a series of panic attacks like nothing I have ever experienced before. (There was a time, back in my former-life, when I didn't even believe that panic attacks were a "real thing"... oh, the irony!). The likelihood is that Holly's condition was genetically inherited, not the random strike of bad-luck we thought we were dealing with (although that in itself was hard to accept, but at least the story had an ending). Instead of closure, a vast number of chapters have been added to this already epic tragedy, and suddenly the novel has become more widely distributed because from now on, every potential outcome has wider repercussions. Specifically, I cannot rest until any risk to my son's health has been categorically ruled out.
We have been told by multiple specialists, that my boy is fine. That I shouldn’t worry. But at every step of this impossible journey, it has defied all odds to create the worst possible case scenario. So how, at this point, am I supposed to remain positive and convince myself that he is safe?
I am a factual person, who takes comfort from knowledge, and struggles with uncertainty. I need answers. In the meantime, I don't mind admitting, this has been a major blow, and I am struggling.
When Holly first died, I was obviously incredibly sad for her loss, but grief I could cope with. I felt peaceful, I felt acceptance. I felt like her death was some sort of spiritual enlightenment, that there was a reason behind it - part of a bigger picture that I couldn’t yet understand, but would eventually become clear to me. I felt she served a purpose. I dared to believe that my life, and those around us would somehow be better because she had so briefly been a part of it.
Maybe it was shock. Maybe it was oxytocin. I don’t know, but in those early days I felt like I was functioning on some higher level of consciousness. In the weeks that followed, I felt productive and positive. In spite of the awfulness of Holly’s death, I was proud of her funeral. I was proud of the beautiful death we were able to give her. I was proud of my ability to parent my living son, despite the family’s loss. I was proud to be Holly’s Mummy, and of keeping her memory alive through my blog and my writing…
As time has gone on, it has become impossible to maintain that sense of peace, of acceptance, or pride. Without answers, without closure, I have tried so hard to remain positive and keep going, but some days I don’t even know who I am any more. In recent weeks, I have dealt with setbacks, and lack of certainty, PTSD, memory-loss, and debilitating panic attacks. It has been a difficult journey, and a long wait for answers, culminating in yesterday's news, which was not only unexpected, but it was my worst-case-scenario, and triggered a series of panic attacks like nothing I have ever experienced before. (There was a time, back in my former-life, when I didn't even believe that panic attacks were a "real thing"... oh, the irony!). The likelihood is that Holly's condition was genetically inherited, not the random strike of bad-luck we thought we were dealing with (although that in itself was hard to accept, but at least the story had an ending). Instead of closure, a vast number of chapters have been added to this already epic tragedy, and suddenly the novel has become more widely distributed because from now on, every potential outcome has wider repercussions. Specifically, I cannot rest until any risk to my son's health has been categorically ruled out.
We have been told by multiple specialists, that my boy is fine. That I shouldn’t worry. But at every step of this impossible journey, it has defied all odds to create the worst possible case scenario. So how, at this point, am I supposed to remain positive and convince myself that he is safe?
I am a factual person, who takes comfort from knowledge, and struggles with uncertainty. I need answers. In the meantime, I don't mind admitting, this has been a major blow, and I am struggling.
Thursday 8 March 2018
International Women's Day
On International Women's Day, as every day, I wonder about the girl and woman my daughter might have grown into, and the relationship I might have had with her. Who she might have been, what she might have achieved, and how her world might have differed to mine.
"Lucky," they all said. "One of each, the perfect family."
"A daughter's a daughter all of your life; a son's a son 'til he takes a wife"...
My hope for my only living child - who happens to be a boy - is that he will grow up unrestrained by stereotypes or societal constraints; one of which is still, to this day, gender.
If I can succeed in raising him as a person, and a decent human being, I hope the women in his future will wonder why #InternationalWomensDay was ever a label.
"Lucky," they all said. "One of each, the perfect family."
"A daughter's a daughter all of your life; a son's a son 'til he takes a wife"...
My hope for my only living child - who happens to be a boy - is that he will grow up unrestrained by stereotypes or societal constraints; one of which is still, to this day, gender.
If I can succeed in raising him as a person, and a decent human being, I hope the women in his future will wonder why #InternationalWomensDay was ever a label.
Saturday 24 February 2018
A significantly insignificant date
Saturday 24th February 2018. Today is my due date. The last official date connected with my daughter's existence. After today, all dates will be anniversaries: in days, weeks, months, or years, everything will be a marker of how much time has passed; she will only exist in the past tense. No more should-have-beens. She was. And she is no more. She is gone. It's final.
I wrote, and re-wrote an epic, wordy blog-post explaining the significance of today. But no words do her, or my feelings, justice. Suffice to say that in spite of myself, I have struggled in the run up to this date, it is impossible not to think about what should have been. And I wanted to commemorate the occasion in some way, I couldn't let it pass unmarked, forgotten.
So, I'd like to share her photo book, that I put together in time to mark today - her due date. I create a photo annual every year for her brother, and I wanted to make one for her, too. I'm going to let it speak for itself. She was (if I do say so myself) devastatingly beautiful... My God, she was beautiful... And yes, I am proud.
Before clicking the link, I'm going to add a "trigger warning." Not because the individual photos are disturbing (in my opinion), but because I can't deny, it is heartbreakingly sad, and therefore may be distressing.
Clicking the above text should take you to a virtual online version of her book*. It will only work on a PC with flash installed. If it doesn't work, or if you're on a mobile phone or tablet, then try the following link instead which will take you to an album of screensaves of the pages of her book.
Holly Rose photo album
Photos are mostly by myself, with some by Holly's Daddy, and some of the black and white ones taken by Remember My Baby. A few are mobile phone photos, because we didn't go to the hospital expecting her to be born, and so didn't have cameras with us, initially.
*I never pay full price for these photo books, I always wait for the right offer to come along in order to print them!
*I never pay full price for these photo books, I always wait for the right offer to come along in order to print them!
Sunday 21 January 2018
The New Normal
Sunday. Two days post-funeral. It is snowing. I am sitting, staring out of the window watching the snowflakes against the backdrop of an aged, evergreen tree. I am surrounded by beautiful mementos of my daughter, and the snow is settling on the holly tree... and I am crying all the tears that I never shed on Friday, at her funeral.
"Funerals are for the living, not for the dead," my partner has always said. Funerals allow those of us left behind to express grief over our lost loved one, who is already gone. I poured my heart and soul into Holly's funeral. I gave her in death all the things I couldn't give her in life. I spent the weeks since her brief existence, planning every moment, sourcing the right things to remember her by, making things by hand, recording the music myself. I even carried her up the aisle... And her funeral was everything I wished it to be. It was beautiful, and touching, and poignant. It was far better attended than I could have ever hoped for, and I am moved by all those who came to say goodbye to my baby girl, who they never met in life. Her funeral allowed everyone who never met her the opportunity to grieve. I never turned around during the service, but I could hear the crying behind me. It was as it should be... And yet, I barely shed a tear.
It took so much planning, so much mental effort. Adrenaline kicked in a few hours before the service, and in the immediate run-up, all I could feel was anxiety. I wanted it to be perfect. Then I was presented with familiar faces; faces of loved ones, in greater numbers than I had expected. I felt a strange contradiction of emotions; joy at seeing people I hadn't seen in a while, a strong desire to hug everyone, and to laugh with them... But everyone wanted to give me their sympathy, yet I wanted to smile, and laugh, and catch up, and hear good news about their lives! And there were enough people present to make it difficult to get around everyone... it felt important to mingle, to make sure nobody was missed out.
During the service, I never felt present. I stared at her beautiful tributes, and her sweet little casket (so like a Moses basket). But she was already gone. I didn't hear the sermon, except for the moment our lovely pastor choked up. It was the only time I zoned in. At the moment she cried for us, it felt real.
I knew the songs by heart, because I had recorded them myself. I knew the poems by heart (printed by hand). I can relive her funeral, and it was beautiful, but I barely shed a tear at the time.
Funerals are for the living, not for the dead. But, for me, I would go one step further. Funerals allow guests to grieve, and can even provide a sense of closure. I've been to funerals before where I have cried throughout the entire service and wondered how on earth the family are holding it together so well. When you "host" a funeral, it can be very different. When you have planned every moment, it may not be the "final goodbye" anticipated. For me, those goodbyes had already taken place... For some, a funeral is a necessary conclusion. But for some of us living on a daily basis with grief, a funeral changes nothing...
I am glad everyone else got the chance to meet her, and to grieve for her. I am proud of her send-off. I will remember it as a beautiful service. But I was not able to grieve. Not at her funeral.
Now two days on, I realise there is no conclusion - nothing has changed. And I am faced with a new reality. The feeling of emptiness that she left behind, that I have tried to fill with planning, and with words, and with "beauty"... that feeling will never go. That emptiness is part of my world now. The chasm didn't close with her funeral, the void lives on. After all the well-wishes, and the heartfelt condolences, and the fun-filled laughter of friends, I realise as I stare out of the window at the snow, that this emptiness is my new normal. There is beauty in sorrow, there is beauty in song, there is beauty in snow, and there is certainly beauty in friendships (I value those friendships now, like never before). But this emptiness, this silence... The emptiness is not beautiful. It is hard to accept. The emptiness hurts like nothing else.
I smiled, and I laughed with friends at her funeral. And I will smile and laugh again. I cherish the thoughts of well-wishers, the refrain of a song, the twinkling beauty of fairy-lights, the perfection of freshly fallen snow. And above all else, I cherish the cuddles of my wonderful son. In all of those things, there is gladness, and gratitude; there is beauty, and yes, there is happiness. But the emptiness will always be there, hidden behind the smiles. Emptiness is my new normal, and it always will be.
"Funerals are for the living, not for the dead," my partner has always said. Funerals allow those of us left behind to express grief over our lost loved one, who is already gone. I poured my heart and soul into Holly's funeral. I gave her in death all the things I couldn't give her in life. I spent the weeks since her brief existence, planning every moment, sourcing the right things to remember her by, making things by hand, recording the music myself. I even carried her up the aisle... And her funeral was everything I wished it to be. It was beautiful, and touching, and poignant. It was far better attended than I could have ever hoped for, and I am moved by all those who came to say goodbye to my baby girl, who they never met in life. Her funeral allowed everyone who never met her the opportunity to grieve. I never turned around during the service, but I could hear the crying behind me. It was as it should be... And yet, I barely shed a tear.
It took so much planning, so much mental effort. Adrenaline kicked in a few hours before the service, and in the immediate run-up, all I could feel was anxiety. I wanted it to be perfect. Then I was presented with familiar faces; faces of loved ones, in greater numbers than I had expected. I felt a strange contradiction of emotions; joy at seeing people I hadn't seen in a while, a strong desire to hug everyone, and to laugh with them... But everyone wanted to give me their sympathy, yet I wanted to smile, and laugh, and catch up, and hear good news about their lives! And there were enough people present to make it difficult to get around everyone... it felt important to mingle, to make sure nobody was missed out.
During the service, I never felt present. I stared at her beautiful tributes, and her sweet little casket (so like a Moses basket). But she was already gone. I didn't hear the sermon, except for the moment our lovely pastor choked up. It was the only time I zoned in. At the moment she cried for us, it felt real.
I knew the songs by heart, because I had recorded them myself. I knew the poems by heart (printed by hand). I can relive her funeral, and it was beautiful, but I barely shed a tear at the time.
Funerals are for the living, not for the dead. But, for me, I would go one step further. Funerals allow guests to grieve, and can even provide a sense of closure. I've been to funerals before where I have cried throughout the entire service and wondered how on earth the family are holding it together so well. When you "host" a funeral, it can be very different. When you have planned every moment, it may not be the "final goodbye" anticipated. For me, those goodbyes had already taken place... For some, a funeral is a necessary conclusion. But for some of us living on a daily basis with grief, a funeral changes nothing...
I am glad everyone else got the chance to meet her, and to grieve for her. I am proud of her send-off. I will remember it as a beautiful service. But I was not able to grieve. Not at her funeral.
Now two days on, I realise there is no conclusion - nothing has changed. And I am faced with a new reality. The feeling of emptiness that she left behind, that I have tried to fill with planning, and with words, and with "beauty"... that feeling will never go. That emptiness is part of my world now. The chasm didn't close with her funeral, the void lives on. After all the well-wishes, and the heartfelt condolences, and the fun-filled laughter of friends, I realise as I stare out of the window at the snow, that this emptiness is my new normal. There is beauty in sorrow, there is beauty in song, there is beauty in snow, and there is certainly beauty in friendships (I value those friendships now, like never before). But this emptiness, this silence... The emptiness is not beautiful. It is hard to accept. The emptiness hurts like nothing else.
I smiled, and I laughed with friends at her funeral. And I will smile and laugh again. I cherish the thoughts of well-wishers, the refrain of a song, the twinkling beauty of fairy-lights, the perfection of freshly fallen snow. And above all else, I cherish the cuddles of my wonderful son. In all of those things, there is gladness, and gratitude; there is beauty, and yes, there is happiness. But the emptiness will always be there, hidden behind the smiles. Emptiness is my new normal, and it always will be.
Snow settling on the holly tree.
"The first tree in the greenwood, it was the holly."
"The first tree in the greenwood, it was the holly."
Friday 19 January 2018
Farewell, Holly Rose: Her Funeral
Friday 19th January. Her funeral has been and gone. It was a lovely day, and I am proud to share it with you, for those who wanted to attend and weren't able to.
When Holly Rose first passed away, we initially thought we would content ourselves with a small, perfunctory service, just myself and my partner. Because she was born alive, and lived for a short time, it became our legal responsibility to arrange a burial or cremation, and along with that, we came to realise that perhaps a service for her would, in time, become something we could look upon with gratitude. I am so relieved that she had a proper funeral. I poured my heart and soul into her service, with a lot of personal, handmade touches, and in the end, I would not have wanted it any other way. I like to think we did her proud.
Holly didn't arrive at the funeral in a hearse, as I felt it was too formal, so she came in the funeral director's car. The service began with "Holly's Carol,"* which played while I carried her casket up the aisle, myself, accompanied by her Daddy.
When Holly Rose first passed away, we initially thought we would content ourselves with a small, perfunctory service, just myself and my partner. Because she was born alive, and lived for a short time, it became our legal responsibility to arrange a burial or cremation, and along with that, we came to realise that perhaps a service for her would, in time, become something we could look upon with gratitude. I am so relieved that she had a proper funeral. I poured my heart and soul into her service, with a lot of personal, handmade touches, and in the end, I would not have wanted it any other way. I like to think we did her proud.
We printed the order of service for guests ourselves (admittedly, after a certain amount of swearing at the reluctance of our irritating printer). Sweet and simple. And I will share the contents below.
Holly didn't arrive at the funeral in a hearse, as I felt it was too formal, so she came in the funeral director's car. The service began with "Holly's Carol,"* which played while I carried her casket up the aisle, myself, accompanied by her Daddy.
Holly's Carol is known as "The Sans Day Carol," which is a traditional Cornish carol. I sang it every day throughout advent at Rowan's school, during the run-up to Holly's birth. It isn't a carol I knew prior to singing it daily with Rowan at his school, and because of the relevance of the lyrics, I wanted to play it at her funeral. I couldn't find a version I liked, so this version was arranged and recorded specially for her, with musical arrangement and instrumental backing by Michael Lovelock. Lead vocals by myself, with mixing by my sister, Jill Priest. Also featuring some backing vocals provided by Holly's auntie Jolly, and her big brother, Rowan - aged six.
Our former pastor, Jeannie Benger, from Chesterfield's Ikon Church then spoke a lovely sermon (although I confess I remember very little of it, due to adrenaline kicking in). However, we really appreciate your words, Jeannie. xxx
This was followed by Jeannie reading Psalm 139, Verse 1 - 18 "For the Director of Music."
Followed by a short extract from a children's book (frequently read to her brother),
"No Matter What," by Debi Gliori:
The final song was my version of "Baby Mine," with some re-written lyrics by myself. This was recorded some time ago, and I will always be grateful that I had the foresight to play this song and "The Rose" for Holly while she was with us.*
The curtain then came around Holly's little casket, and the tributes that we had arranged for her. She spent most of her existence on the stage with me (while I travelled the UK in a musical theatre tour while pregnant), so it seemed only fitting that her service ended with "the final curtain."
It was a short, but beautiful service, with almost everything hand-made by ourselves, from the printed order of service, to the flower arrangements. It was also far better attended than I had ever hoped for, and I hope those of you who were not able to attend will appreciate being able to share the moment retrospectively, via these photos and links.
Holly's floral tribute (the vase with the white roses) was arranged by me (although I did have a brief panic on the morning of her funeral, when I realised I am really not very skilled at floral arrangements!). It features branches from our Christmas tree (which I had preserved for the purpose), white roses, olive branches, holly from our garden, and rose hips. I also included some dainty fairy lights, because she was born so close to Christmas, and a bauble for the same reason.
She also had a holly wreath for her casket (this went with her), which was made by my Mum before Christmas, who also made the bouquet of red roses and holly.
Rowan, her big brother, wasn't at the service as he had already said his goodbyes in person. I felt that at his age, he would be restless and distracting if he was there, but he did meet everyone afterwards and contributed in his own way to Holly's various tributes.
On the back of the order of service, is a poem taken from another children's book, "On The Night You Were Born" by Nancy Tillman. I bought the book in time to take it with us to her service:
https://www.justgiving.com/fundraising/rosanne-priest
https://www.justgiving.com/fundraising/babyhollyrose
*If I could, I would have given you the world, my love.
In the end, the only gift I could grant you was the gift of song...
I can only hope you heard.
All my love,
Mummy.
xxx
Our former pastor, Jeannie Benger, from Chesterfield's Ikon Church then spoke a lovely sermon (although I confess I remember very little of it, due to adrenaline kicking in). However, we really appreciate your words, Jeannie. xxx
The next song was "The Rose," sung by myself and recorded by our very dear friend, Rod Munro, on the day I met him some years ago. This rough, one-take recording was played to Holly Rose during the brief time she was alive.*
This was followed by Jeannie reading Psalm 139, Verse 1 - 18 "For the Director of Music."
1 You have searched me, Lord,
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts,[a] God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
Followed by a short extract from a children's book (frequently read to her brother),
"No Matter What," by Debi Gliori:
"Look at the stars - how they shine and glow,
but some of those stars died a long time ago.
Still they shine in the evening skies
Love, like starlight, never dies."
The curtain then came around Holly's little casket, and the tributes that we had arranged for her. She spent most of her existence on the stage with me (while I travelled the UK in a musical theatre tour while pregnant), so it seemed only fitting that her service ended with "the final curtain."
It was a short, but beautiful service, with almost everything hand-made by ourselves, from the printed order of service, to the flower arrangements. It was also far better attended than I had ever hoped for, and I hope those of you who were not able to attend will appreciate being able to share the moment retrospectively, via these photos and links.
Holly's floral tribute (the vase with the white roses) was arranged by me (although I did have a brief panic on the morning of her funeral, when I realised I am really not very skilled at floral arrangements!). It features branches from our Christmas tree (which I had preserved for the purpose), white roses, olive branches, holly from our garden, and rose hips. I also included some dainty fairy lights, because she was born so close to Christmas, and a bauble for the same reason.
She also had a holly wreath for her casket (this went with her), which was made by my Mum before Christmas, who also made the bouquet of red roses and holly.
Rowan, her big brother, wasn't at the service as he had already said his goodbyes in person. I felt that at his age, he would be restless and distracting if he was there, but he did meet everyone afterwards and contributed in his own way to Holly's various tributes.
On the back of the order of service, is a poem taken from another children's book, "On The Night You Were Born" by Nancy Tillman. I bought the book in time to take it with us to her service:
On the night you were born,
The moon smiled with such wonder
That the stars peeked in to see you
And the night wind whispered,
“Life will never be the same.”
Because there had never been anyone like you… ever in the world.
So enchanted with you were the wind and the rain
That they whispered the sound of your wonderful name.
It sailed through the farmland
High on the breeze…
Over the ocean…
And through the trees…
Until everyone heard it
And everyone knew
Of the one and only ever you.
I am also including here, the final two pages from the book:
For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again...
Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.
Various floral tributes and mementos, including Holly's footprints, her blankets, the outfit she wore (formerly her brother's) in hospital, and her little hat. The teddy is one of two given to us when we left the hospital; the other one went with her and you can read about other items that stayed with her in a previous blog entry.
I'm also going to include Holly's charity links again in this blog post, for anyone who may still wish to donate. However, please don't feel any obligation. We are moved beyond belief by those who attended, and will never forget the kindness of all those who have supported us, in various ways. Her funeral was beautiful.
Thank you.
https://www.justgiving.com/fundraising/rosanne-priest
https://www.justgiving.com/fundraising/babyhollyrose
*If I could, I would have given you the world, my love.
In the end, the only gift I could grant you was the gift of song...
I can only hope you heard.
All my love,
Mummy.
xxx
Tuesday 16 January 2018
One Last Time
We went to visit Holly Rose at the funeral director's this morning. When we first met up with Anthony, at Gillotts (our funeral directors, who have been so wonderfully supportive), he asked us if we would want to visit Holly one last time, before the funeral. I answered honestly, that I would always want to see my baby's face again... but not if she looked "altered" after the postmortem, or if she looked distressing in any way. That isn't how I would want to remember her. So I trusted him to make the decision on our behalf, and let us know when she was safely in their care, whether he would advise us to see her again. We duly took his advice and went to see her this morning.
I'm not going to lie; Holly didn't look distressing, but she did look a little changed, and truthfully, she no longer looked like "herself." As my partner said, she just looked more "distant"... However, I am really glad we went. I suppose accepting that she's really gone is part of the process, and looking at her today, I knew that she was really gone. In some ways, that makes it easier to let go.
We sat with her for a while, and played her "Holly's Carol," which I've recorded especially for her funeral. And I left a hand-written poem with her in her casket. It's a poem I wrote seven years ago for her "sister," my ectopic pregnancy, who I lost via surgery at ten or eleven weeks pregnant, and I always believed was also a girl... (Yes, I realise this will also be news to many of you reading this. Nobody really talks about such things, but I lost another pregnancy before we had Rowan who I have equally, never forgotten). I felt that I wanted to acknowledge and honour both my lost babies - one of whom never even got the chance to be recognised, and putting the poem in with Holly was my way of saying goodbye to both of them. I have shared this poem many times since writing it seven years ago, with other women going through a similar loss. It was written for "Ivy" (my first pregnancy, who named herself seven years after the event, following Holly's birth). Every word remains true, and applies to Holly Rose, too.
Her eco-woven casket is really, truly beautiful (I am not sure these photos do it justice). I am so glad we chose it. It was important to me that it was an eco-friendly one, so that Holly can depart the world as she entered it - owing nothing, and with a clean slate. I will be able to say that she has only ever contributed positively to the world that she was part of for such a short time. But aside from being eco-friendly, it looks so like a Moses basket; very sweet, and so tiny. It's beautiful. It's lined with a gorgeous, soft cotton lining, and it really does seem like my baby girl is just sleeping, wrapped in her knitted blankets with her teddy. She is wearing a tiny babygrow and vest that was her brother's; nothing fancy, but I wanted her to be wearing something of his, and I'm really glad we visited her, so I was able to confirm for myself that she has been well looked after, and has all the things with her that I wanted.
On Friday, she will have a holly wreath for her casket (made by my Mum before Christmas, to hang on the door... it contains ivy, too). I have managed to keep it fresh, and will replenish it with a rose to match her floral arrangements, which I'm doing myself.
I really hope that nobody finds these photos distressing. It isn't my intention to upset anyone. Perhaps it may seem strange to share images of her casket, and talk openly about her death, and her funeral arrangements. Part of the reason I share these things is not just for my own benefit (although for some reason, I do find it comforting to write about her, say her name, and share her photos), but also by putting this blog in the public domain, there will (sadly) be other parents in a similar position... Parents who never expected to find themselves arranging a funeral, or choosing a casket in which to bury or cremate their child. Who probably never considered whether or not they would want to view their baby at the funeral directors. (I know this to be true, because until a few weeks ago, I was one of them). Perhaps somebody somewhere, may find these posts helpful when making their own difficult decisions, and for that reason, I am putting my thoughts out there.
I'm not going to lie; Holly didn't look distressing, but she did look a little changed, and truthfully, she no longer looked like "herself." As my partner said, she just looked more "distant"... However, I am really glad we went. I suppose accepting that she's really gone is part of the process, and looking at her today, I knew that she was really gone. In some ways, that makes it easier to let go.
If you had lived...
They say that some things are just not meant to be,
But nevertheless, you were special to me.
You were my hopes, and my future plans,
I imagined my world in your tiny hands.
In my thoughts, I had held you,
Pictured who you might be,
And I felt that I knew you,
Though you never knew me.
For weeks, you provided my secret smile,
And I'm proud that I carried you 'round, for a while.
I like to believe you are safe, up above,
But if you had lived - you would have been loved.
- Her teddy bear (we were given two in a memory box by SANDS when we left the hospital. One stays with her, and the other we kept).
- Her blankets (hand-knitted, and again, given to us by SANDS).
- Her brother's tiny baby clothes (I have kept the ones that she wore in hospital, but provided another set for the funeral directors to dress her in).
- My hand written poem, which I placed in the casket with her, for her and her sister, along with a note that I've photographed so I can remember what I wrote to them in years to come.
On Friday, she will have a holly wreath for her casket (made by my Mum before Christmas, to hang on the door... it contains ivy, too). I have managed to keep it fresh, and will replenish it with a rose to match her floral arrangements, which I'm doing myself.
Above photo taken in the hospital (not at the funeral directors),
of Holly Rose with her little bear.
I really hope that nobody finds these photos distressing. It isn't my intention to upset anyone. Perhaps it may seem strange to share images of her casket, and talk openly about her death, and her funeral arrangements. Part of the reason I share these things is not just for my own benefit (although for some reason, I do find it comforting to write about her, say her name, and share her photos), but also by putting this blog in the public domain, there will (sadly) be other parents in a similar position... Parents who never expected to find themselves arranging a funeral, or choosing a casket in which to bury or cremate their child. Who probably never considered whether or not they would want to view their baby at the funeral directors. (I know this to be true, because until a few weeks ago, I was one of them). Perhaps somebody somewhere, may find these posts helpful when making their own difficult decisions, and for that reason, I am putting my thoughts out there.
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