Leora’s Story.

Today I’m sharing a guest post by Leora Leboff.

Leora is an Aromatherapist and massage therapist specialising in pregnancy. This special interest was sparked by the devastating experience of losing a baby in 2003. Leora has two children aged 12 years and 7 years old; her two energies of inspiration. Her website is www.auraholistictherapies.com.

I’m taking the step of including a trigger warning here. This is a very sad story of infant loss due to termination, so if you’re not up to reading on, please put your own self-care first. I have close friends and family members who have had to make the devastating decision to end their pregnancies for medical reasons and I hope that Leora’s bravery in sharing her story will help others realise they’re not alone.

In loving memory of baby Harry, who joined the angels ten years ago, today. Sleep tight and sweet dreams.

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Loneliness. It’s been a recurrent theme since losing Baby Harry.

From the moment I was told at my 20 week scan that my baby had a series of anomalies and that I may need to terminate the pregnancy. Not long after I knew I was expecting him, I had instinctively felt something wasn’t quite right. However, it didn’t make the process any less shocking as I wished at the time that my instincts had been completely wrong. When the anomaly midwife sat my husband and me down in a side room, I didn’t know how to process the information I was receiving.

In the coming days I was surrounded by my loving husband and the dearest of friends, but I felt lost and alone. I didn’t sleep for days, my mind buzzing with possible decisions. Or maybe I didn’t sleep as I just wanted to spend more time with my baby.

In the weeks and months after, I found it hard to burden anyone with how it feels to have the bottom of your world swiped away from you in this way. Sometimes the loneliness was welcome. After the termination when I was recovering, often it was almost too much to get out of bed to pick my son up from nursery. I just wanted to stay curled up under my duvet, away from the world and work through the pain.

I did try to keep myself occupied while I was signed off work by organising a 75th birthday bash for my Dad. I’m so happy that I did this for him, as just three months after Harry was born my Dad suddenly and unexpectedly died from a heart attack. Let’s just say it was a truly challenging time as three months prior to losing Harry, my Mum had lost her run in with cancer and also passed on. So when a cuddle from my darling Mum was most needed, she wasn’t there – loneliness. Three different kind of bereavement within 6 months of each other to deal with. My friends were amazing and my husband a huge support, but as I said it felt difficult to burden them with the indescribable intensity and confusion of emotions that were hurtling around. Luckily I started seeing the women’s services counsellor via the maternity unit . She was a darling and literally a life saver.

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Another form of loneliness or isolation has been present for me over the years; something about this particular form of baby loss. Losing a baby through anomaly and termination is often not included with other types of baby loss. I recently sponsored a colleague who was taking part in a charity event for miscarriage, still birth and neonatal death. I sponsored her because it was for a hugely important cause that is close to my heart, but I did feel a twinge if sadness that anomaly and termination was not acknowledged.

Perhaps it is because when you lose a baby in this way you have had to take an active role in the process – to actually terminate the pregnancy. How incredibly hard it was taking the medication that I knew would end the life of my baby. Up to 20 weeks you have to take medication, after 20 weeks an injection is given to the baby to ensure s/he is not born alive.

This is just one of the painful realities involved with termination. How my little boy lived to 20 weeks in utero was amazing; he had brain, heart and kidney anomalies. He didn’t appear to have a stomach and when he was born they were unable to tell us if he was a boy or girl as his genitals were malformed. We had to wait until the results of the amniocentesis came through a week or so after the birth to be able to name him. He had Patau Syndrome or Trisomy 13, a chromosome abnormality. My pregnancy had become a 1 in 5000 statistic.

As the years have moved on, the loneliness has continued as it is socially expected that past events are consigned to the past.

Only recently the full understanding has hit me that our lost babies are not meant to be forgotten. Why else were we given pictures of him dressed in a little angel style outfit, and his tiny hand and footprints? I want to remember Harry; he is part of our family. My daughter never knew her other older brother but my eldest son, who was 2 when Harry was born, cried deeply last year when we went to visit his grave; he cried for the brother he could have shared time with and the older brother he could have been.

It’s not about forgetting. In my experience it is about moving along to a place where it’s a bearable memory and the physical and emotional trauma, which may be unique to this kind of baby loss, is worked through and acknowledged with kindness.

As a massage therapist, I chose to take a special interest in pregnancy and I teach infant massage. When I trained in pregnancy massage, my counsellor asked me, “isn’t working with pregnant women like nails going down a chalkboard?” For me it was the only direction I wanted my work to take. Over the years I have treated and supported women who have experienced still birth, miscarriage and fertility issues. My heart is with them.

Today is the fifth of November and ten years since Harry was born in stillness and soundless.

Harry is buried in a Woodland Memorial near Bristol and we visit him a couple of times a year to see the maturing trees. Strangely the tree near Harry isn’t growing as vibrantly as the others. I recently went there with my son and he commented that perhaps the tree is reflecting that Harry died so young; neither of them can grow up. One thing I do hope, that he’s not lonely.

Yesterday we visited Harry’s grave with a big family cuddle. Today I plan to be reflective and at peace with my experience.

I hope that sharing my story will honour Harry’s memory and raise awareness of this fairly unspoken kind of baby loss.

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The charity Antenatal Results and Choices (ARC) is the only charity in the UK to support the 35,000 women a year who are told after screening that their baby may have a serious foetal anomaly www.arc-uk.org. Donations can be made via their website.

Make Sure They Know.

(Sorry, Mum. Best get the tissues now).

I’d like to tell you about my mother’s brother, my Uncle Stephen. He was born on the fifteenth of July 1953; sixty years ago today. When Stephen was about seven years old an optician discovered a tumour behind one of his eyes. There began a long, but thankfully successful battle with cancer. It left him partially sighted and hard of hearing which obviously affected his life quite considerably but he survived against the odds.

Growing up, I was aware of what Stephen had been through as a child, but it was one of those facts from the past that I just accepted. It was the reason why he was a little bit different. I can’t say that I dwelled on it regularly.

One thing I’ve learned during the past four years is how much your perspective changes when you become a parent.

The horrors of serious childhood illness are never more than a headline away and often, sadly, far closer to home. In my life pre-children my heart would break for sick children. I remember organising a charity parachute jump in aid of a local meningitis sufferer when I was twenty. I just felt like I HAD to do something to help her.

But I never really gave thought to the parents of sick children, not in the same way that I do now; It wasn’t until I became a mother myself that I really considered what Stephen’s parents (my grandparents) must have endured, seeing their child go through such a dreadful ordeal. My mum would have been about four when her older brother was taken ill. The same age as my son is now. How terrifying it must have been for her. I can’t bear to ask or even to think about it.

I didn’t have this perspective in my early twenties. I was busy with my career, my friends and trying to be a good daughter, sister and grand-daughter. But truth-be-told, a good niece I was not.

Stephen was a doting Uncle. I remember him collecting encyclopaedias for my brother and me when we were still at school. Bringing them round for us each week. I can’t remember, however, showing him a great deal of gratitude for that. He would call us often, and liked to talk to us at length about what was going on in the world. In my teens and early twenties I didn’t register the fact that he lived alone and was lonely.

I simply didn’t make enough time for him. I suppose I thought there would always be tomorrow.

I can clearly recall one of the worst arguments I’ve ever had with my mum. It was eight years ago today, on Stephen’s birthday and I hadn’t called him. My mum told me that I needed to make more time for my uncle and implied that I was selfish. I was devastated an affronted. But my mum was right. Of course I pointed out (at considerable volume outside Southwark Station) what a dutiful daughter and granddaughter I am. How much I did for others. How I rarely put myself first.

Looking back now, and knowing myself better than I did back then, I realise the words that sting the most usually have some truth in them. That’s why they hurt. I didn’t make enough time for Stephen. I didn’t and I should have.

Nine months later I received a phone call at work. Stephen had been hit by a car. He’d been taken by air-ambulance to the Royal London Hospital in Whitechapel.

Every day Uncle Stephen walked from his flat to his favourite coffee shop, usually to meet his father (my Poppa) for lunch. Each day he literally went out of his way to cross where he knew it was safe, waiting for the green man and the beep to signify that it was safe to step out. The crossing was in the opposite direction to where he was headed, but was the safest option for him.

That day a ninety-three year old man was driving back back from visiting his wife’s grave. His son was in the car and they were arguing. He didn’t see the red light. He didn’t see my uncle, already in the middle of the road. He thought he’d hit a bird and didn’t even stop immediately.

I remember running down a very long flight of stairs from my office as I couldn’t wait for the lift to arrive. I remember phoning my future husband in hysterics. I don’t remember the tube journey, but I do recall running to the hospital from the station. I remember Stephen laying in the A&E bay. I remember my mum calling me much later that night, after she and my Poppa had made the devastating decision to turn off his life support machine. Stephen was fifty-three.

I thought there would be a tomorrow. There wasn’t.
There was no tomorrow for Stephen and it was too late to let him know how sorry I am. For not making time for him. For sometimes rushing him off the phone. For being young and self-absorbed. Sorry for assuming there would be another birthday phone-call or visit.

I now have nieces and nephews. The huge love I have for them overwhelms me.
To think that Stephen probably felt that love for me makes my heart hurt and my eyes water. I just hope that wherever he is now, on his sixtieth birthday, he looks down at his great-nieces and nephew and knows how we miss him. How my son is named after him and how I write, now. Like he did. I hope he knows I think of him every day and sometimes dream about him.

This heartbreakingly sad story has taught me such a valuable lesson. I’m not going to pretend that I seize every day as if it were my last, as I don’t think that’s realistic. But if I love someone, I try to tell them. I need them to know. I need my family to realise how much they mean to me because I know that there is no guarantee of a tomorrow.

I can’t change the past but I hope I’ll keep learning.
So in honour of Stephen today, please tell someone special that you love them. Please make sure they know.

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