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.

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.

Friday, 22 June 2018


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


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.