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.

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.

Two lines that changed everything.

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.

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.

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.

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.

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.

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.

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.

Click here to view online photo book

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!

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.

Snow settling on the holly tree.
"The first tree in the greenwood, it was the holly."