Celebrating the birthday of an adult who was my baby

Glass of wine?
Check
Reminisce with baby photos?
Check
Sentimental movie?
Check (The Time traveller’s Wife)
Chocolate?
Check (A tub of Heroes, intended for 5 weeks time!)

I have a curious sense of dislocation with going through the hours of this day, when 28 years ago I was giving birth to my first boy. It’s not the time that has elapsed which gives me this sensation but it’s the fact that he lives far away on Maui, Hawaii with a time difference of 10 hours between us. It can be hard to get a mutually acceptable time to talk on the phone. Thankfully, there’s post and text and facebook messaging and so many ways to keep a connection.
It’s odd to be celebrating in his absence, but it affirms for me that this day was SO significant for me and needs marking, even without the guest of honour.
I remember the details so clearly.. my Dad driving me to the hospital in Dublin and then leaving me and returning to Wexford.
Does anyone labour without a support person of their choosing now?
I was 19.
I had done antenatal classes in a group of 5 women with a local midwife, in her home. When she finished the business part of the evening, we would lie on the floor of her sitting-room, eyes closed, relaxing to soothing music, while she made tea. I think now that those classes were more about educating me to accept the hospital procedures than about helping me make informed decisions for mine and my Baby’s care.
I was told I was “going nowhere fast” as the partogram was consulted… imagine the cheek of me, to not dilate at the required rate of 1 cm per hour. So my labour was speeded up with oxytocin and after 2 hours of that, I was going mad and asking for pain relief. I was assessed as being 3-4 cms at this stage.The pethidine made me space out and I remember a midwife being annoyed that I wouldn’t focus on her when she wanted me to. 10 mins later, I told them I needed to push.
“Nonsense!” I was told briskly.
Then she put her hand on my stomach and there was a sense of urgency as I was wheeled from labour to delivery…. honestly, who designed this notion of orderly women dilating at a set pace, in a certain room, which then had to change DURING TRANSITION?!!!
In my 4 home births, I have laboured in the kitchen, sitting room, bedroom, bathroom, polytunnel, lane … oh, and in the mobile home for one birth… but I never moved much for the grand entrance moment… that was about being in my space and being comfortable and reassured with my trusted midwife, whom I’d gotten to know during the pregnancy and previous births.

And who had the bright idea that labouring and birthing women should lie prone? I was squatting for my home births.

The pethidine made Darragh drowsy and unresponsive.

“He has no rooting reflex!” I told the medic who let me hold him for 5 minutes before taking him away for 12 (!!!) hours.
“Are you a nurse yourself?” was the response and then the condescending you-would’nt-tell-these-porkies-to-a-child: “He’s a bit tired; we’re just taking him for observation”.
I was brought to the ward and told to sleep.
Sleep?
I lay there thinking: these are the MOST important hours of his life and I should be with him.
I got up at various times and asked several people could I see him and was told to wait til morning.

Now, I would roar til I got to be with my son, but then, I was too compliant and a “good” patient. Back in 1986, there was no rooming-in at this (or any?) Irish hospital.
Despite the separation and the staff feeding him formula without my permission, when my chart clearly said “breastfeeding”, we managed to get breastfeeding happily… thanks in no small measure to having seen my 5 siblings breastfeeding and believing it was natural and having been loaned La Leche League’s “Womanly Art of Breastfeeding”.

I was sure of two things: I was absolutely besotted with this new person, (the song I couldn’t get out of my head was Billy Ocean’s “Suddenly”, with the line “you wake up and suddenly, you’re in love”) and there had to be a better way to give birth.
Thanks to the Home Birth Association (then Home Birth Centre) and some home educators I met who had home births, I discovered that birth can be empowering and even ecstatic.

I’m grateful that we bonded fiercely, despite hospital interference, and that our connection feels strong and true.

Happy Birthday, my firstborn, Darragh!

My 6 babies have made me a mother. Just as well there’s more than a handful of them and they are all so different, as I’m such a slow learner!
Here are just a few photos from the years, as Darragh turns 28 tomorrow and celebrates halfway around the world, on Maui, Hawaii, where he lives.
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But this is us, before we got home from the National Maternity hospital.
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This is my mother with Darragh, her first grandchild.
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Here’s Darragh, aged 9 months.
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Darragh (7) and Oisín, 2 weeks.
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Darragh’s Turtle phase!
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A sunny day in Tullow, at Nanny’s and Granda’s home.
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In our kitchen in Summerhill, Co. Meath… November 1994, just a week before Oisín’s 1st birthday, and 11 days before Darragh’s 8th.
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All the lads, on holidays in Courtown.
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Browneshill Dolmen near Carlow town, a favourite (free!) spot to bring visitors.
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Darragh (16) with Oran (2). So heartening to see the children loving each other.
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Eddie and Darragh, at Darragh’s Graduation in Cork.

Some lessons babies taught me

This time 21 years ago, I was eagerly looking forward to having my second baby, and to helping to heal the first child’s actively managed hospital birth, by having this birth in the comfort and security of our own home, with our trusted midwife, Ann Kelly.
I resented having to get up to the toilet at night as the growing baby took up some bladder space. It hit me one evening, braving the cold outside the bed covers, “there’s a person inside me!”.. I can still feel the shock, the realisation, the “don’t be such a bloody moaner”; count your blessings!
I called out Ann Kelly 10 days before my due date, with vague contractions and what became a thumping headache. She stayed with us overnight and when she took my blood pressure, she told us gently and firmly we needed to go to hospital. We had no car, and no arrangements to care for Darragh, nearly 7 years old. So she drove us to hospital and had Darragh to her home for the day.
A lovely midwife said into my ear, as I heard our baby’s heartbeat on the scan, “dear, we have to lower your blood pressure and we have to deliver your baby.” 2 hours after arriving there, Oisín was born by caesarean section under general anaesthesia and I had round-the-clock midwifery care for 48 hours until my blood pressure stabilised.
I don’t remember when I first saw him. I only know that whenever I woke, I begged to see him and to have him breastfeed.
We were in hospital for 10 days and lucky to have a midwife sit for 3 hours one night helping us to get a comfortable position and latch, made difficult with the c. section scar.
I recognised the kind midwife (who had taken the time to explain what was happening) 3 months later when I was back in hospital for a kidney check-up. I had no visual memory of her (apparently due to high blood pressure and medication) but I knew her voice and thanked her for taking the time to treat me as a sentient being.
There was so much to deal with in the aftermath, happiness at Oisín’s health, sadness at not having the homebirth, scar healing and a windy, sometimes unhappy baby. The words of one doctor were ringing in my ears: “I know homebirth is a nice IDEA but you’ll never be a candidate!”
4 homebirths later, the first 20 months after the c.section, I know that it’s possible to be grateful for medical expertise and yet seek other opinions and research; to count the blessings of a healthy baby and alive mother but still mourn the experience I’d hoped for.
I treasure the words of Mary Cronk, amazing midwife:
“SOME BIRTHS IN SOME CIRCUMSTANCES NEED SOME HELP”
I guess the expertise comes in knowing which are those births!

Keeping my nerve on a road less travelled

When I first thought about home education, my son was 9 months old. I had met only one family, with a toddler and 2 children under 10. I knew no home educated teenagers or adults. Before this family loaned me their John Holt books “How Children Learn”, “How Children Fail”, “The Underachieving School” and their Education Otherwise (UK) newsletters, I hadn’t thought about the concept of children continuing to learn at home within the family, just as they learn to sit, crawl, walk and talk. Because I was born in Brisbane, I had a vague notion about the Australian “Schools of the Air” where children on remote farms maintained radio contact with a teacher and worked somewhat independently on their studies. We moved to Ireland when I was 6 and my parents’ idea was “the more education, the better” and for them, education=schooling.
I have to credit La Leche League and the concept of “mothering through breastfeeding” with giving me enough courage for each day’s challenges. My mother breastfed all 6 of us and I’m the eldest. There was never any formula in our house. I remember one brother having a bottle of diluted blackcurrant as an older child and that same lad, 21 months old when his “baby” status was displaced by another, asking for a soother. My mother got him one and it was soon discarded. No drama, no fuss.
La Leche League also hosts an annual conference, which has become an unmissable highlight in our year. There are often talks relating to education as part of the programme. Some of the most encouraging talks have been from parents who are home educating, telling their stories, being honest about what worked and what mistakes they made on the journey of accompanying their child’s learning. The conference bookstall has been a source of much take-home inspiration: Agnes Leistico’s books: “I Learn Better by Teaching Myself”, “Still Teaching Ourselves”, and Mary Griffith’s “Homeschooling Handbook”
We were weaned early, though. I first met a breastfed toddler when I was 16. I was highly impressed that when I took this child, aged 18 months, to the corner shop he asked for “babu” – his word for apple – and ignored the rows of chocolates and sweets. His mother loaned me her La Leche League book “The Womanly Art of Breastfeeding” 3 years later, when I was having my first baby. There was so much love and wisdom and many powerful, gentle examples in that book. It’s still a book I return to, and recommend highly to anyone seeking reassurance in following her/his heart in parenting.
So wobbly days, questioning myself days, wondering if this unusual path is really right for us? Dara Molloy from the Aisling Árainn network on Inis Mór, organised an “Alternatives in Education” day in Clonmacnoise in the summer of 1988 and from that, a list of home educators in Ireland grew and a newsletter “Sa Bhaile” (Irish for “At Home”). It gave a vital link to other people in Ireland whose children were learning at home and was a crucial channel of support and inspiration.
It’s funny how our ideas can grow and develop. I thought all my children would get a college degree. Eddie thought they would all do the Leaving Certificate (exam taken at around 18 years of age, on which access to college is largely based). So far, with 3 adults, we’ve both been wrong! The eldest did a few Fáilte Ireland courses in bar skills and hotel management after he sat the Leaving Certificate exams. The next did Leaving Certificate and 2 years of acting courses. The third is in third year of college (studying for a degree in music) without having attended any school or sitting the Leaving Certificate. He gained entry to college by studying piano at home and then attending a one year course, aged 16, in a local college and achieving a FETAC (Further Ed. and Training Awards Council) Level 5 in Music and doing well in the college entrance exam and audition.
I am amazed now at my daring, really. There have been times when I did the soul-searching: “Is this really the best path?”
“Am I cutting off some possibilities from their futures?”
When Darragh, now 27, was home from his travels, I had one of those moments and enough humility to ask him:
“Did I do ok? Did I give you enough? Do you regret the home educating?”
His reply was one of those “real Mother’s Day” gifts:
“Mam,” he grinned, reassuringly, “I LIVE in Hawaii!”

Discovering Our Baby Has a Condition

Discovering our baby has a condition
Once upon a time, a boy was born in January, beside the fire in his parents’ bedroom. He had 4 older brothers and a sister and he was ADORED. His mother was 40 years old, celebrating this milestone a few months before her eldest turned 21, and felt very blessed to be gifted with such a joy. Like his siblings, he was carried in a sling and breastfed whenever he wanted and life was just peachy.
When he was 5 months old and liked to sometimes lie on a blanket on the floor, he started to get bruises on his back. The first time, the family tried to reason what had caused this. He had startled in his mother’s arms; maybe that had somehow been the cause? The family often welcomed foster children… could some-one have hurt him? But he was never out of sight and hadn’t cried or been upset…
Two weeks later, he was having a bath with his mother and she saw a great fat purple-black bruise, like a slug, on his back near his shoulder. They had been at a birthday party with a bouncy castle but he had been in arms the entire time and nowhere near the castle….it was a mystery. The parents went to bed that night thinking “who can we ask for advice?” In the morning they thought of the lovely midwife, K, who had welcomed him with them. She was very clear. This needed investigation. So for the first time since his postnatal check, he saw a doctor.
“Tell me what you think it might be” his mother asked, as she was told to go to the hospital for tests.
The doctor didn’t want to guess. So the mother decided to list out anything awful she could think of so she would hear this expert deny it.
“Leukaemia” she said.
“He’s too young.”
“Haemophilia” she said.
“Your father would have to have it.”
He wrote the referral letter for them to attend the paediatrician in the hospital 30 miles away.
“No rush” said the doctor kindly. “You could go tomorrow.”
But she had to know as soon as possible.
She drove there that day and waited while the medics tried to get a blood sample from her distressed son. Then home and distractions, waiting to hear.

The phone call the next afternoon was quite casual.

“Something was a bit strange with one test. Please come in tomorrow to have it repeated.”
No clues, no hints.
“DON’T look on the internet” his aunt advised.

It was the day he turned 6 months old- Wednesday July 23rd 2008. She took a photo of him in a lovely outfit friends had sent from Australia.
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That would always be the photo of the day the world changed. The day when not-knowing became knowing.
The blood test seemed harder.
They tried to get it from his foot. But the flow stopped before the vial was full. The junior doctor said he would go with the sample and implore the lab to try to test it, as they often found it difficult when there wasn’t enough in the vial.
The baby calmed and nursed.
“What does he eat?” asked the paediatrician.
“He’s fully breastfed. He‘s six months old today.”
“So you’re going by the WHO guidelines?” said the paediatrician.
“It’s what I’ve always done. He has 5 siblings from 21 to 4. None of them had much interest in solids before 8 or 9 months of age. The guidelines kind of caught up with me.”
“But you give vitamin D?”
“No. As I understand it, the issue is about sunlight and if we get 20 minutes even in December our pale skins can..”
“3 hours per week“ he interrupted impatiently. “We can’t tell Irish parents that… they’d park the babies down the garden for that length and burn them!”
The room began to fill with student doctors, some of whose skin colour at our latitude might need more than 20 minutes to get their requirement of sunlight for vitamin D so the conversation ended.
The bruises were photographed.
Somehow the time passed.
A nurse said “If we don’t find a blood-clotting disorder, we will be talking to social workers.”

She did not know what to pray for.

And then it was explained: it’s the APTT blood clotting test. Normal clotting time is 38 seconds but his was taking 73 seconds.
The doctor phoned a haematologist at Our Lady’s Hospital for Sick Children in Crumlin, Dublin.
“She says, a male with that clotting time, almost certainly it’s haemophilia. Go to Crumlin tomorrow and they’ll do more tests.”

Haemophilia
Czars of Russia
Rasputin
Bleeding to death from a cut

That was all she knew
Lovely, blessed, cocooned ignorance

The phlebotomist in Crumlin was quick and sure when it came to taking a baby’s blood test so the distress didn’t last past a quick cuddle and breastfeed. The results would be available on Monday.
Somehow, the weekend passed.
There were lovely calls and emails from worried family and friends, promising prayers and candles and novenas and support. There was the usual family life of laundry and meals; routine things keeping a scaffolding around them as the world changed forever.

So on Monday, July 28th they were told he did indeed have Factor viii deficiency, Haemophilia A, severe. His body made no Factor viii (8), a blood clotting factor. The factors are like dominoes, the parents were told, so when 1-7 work fine , they try to set off 8 which is absent so 9+ can’t do their job. The most likely scenario was the baby would have bleeds into his joints which if untreated would cause arthritis. These would begin when he became more mobile and was walking so from around 2 years of age, he would need transfusions of Factor viii three times a week, for the duration of his childhood.
“We’ve never used a playpen” said his father. “Would it be helpful for him?”
“The bleeds are spontaneous” the doctor explained.
“What if we pad everything he might come into contact with when he’s walking?”
“The bleeds are spontaneous.”
“What if we…”
“It’s SPONTANEOUS bleeding” the doctor emphasised.
“Oh, so it doesn’t matter what we do?”

The hospital appointment explained many things. 30% of cases of haemophilia are new mutations, so having no family history. It’s rare enough.. About 100 people share the diagnosis in Ireland.
The specialist nurse and doctors assured the family the Factor was no longer from human blood but a recombinant product. Small children’s treatment was about €500 per dose, which the tax payer covered.
A social worker explained the supports that were available and asked them how they felt.
What the mother wanted to say was “stuff all the free meds and supports! I just want my little boy to be healthy.” So she said nothing. They went home with books, leaflets, a DVD, information about the Irish Haemophilia Society.
Time passed as it does.
The boy started to walk. He didn’t have bleeds.
She took him to Lourdes.
Twice.
He turned two years old.
They dared to hope he might be in the 10% who didn’t have joint bleeds.
He turned three years old.
And then one day, on St. Patrick’s weekend in March 2011, his leg was swollen and hot and he couldn’t walk. So he and his mother stayed overnight in Crumlin for treatment with the factor viii replacement transfusion. The hospital discussed starting regular treatment.
“Maybe it’s a once-off? Can we wait and see?”
But at Easter, he and his mother were back in overnight in the hospital for treatment.
He began receiving treatment every Monday, Wednesday and Friday.
In July he had a port-a-cath fitted in his chest so his parents could do his treatment at home and not have to travel to hospital so frequently.
When they go to hospital they see children who are very sick and so they try to count their blessings and be grateful.
Sometimes the boy asks why does he have haemophilia and he says how wishes he didn’t.
So does his mother.

Daddy’s First Anniversary

This time last year, we were keeping a vigil in the hospital as Daddy was nearing his end. My sister, who with her family, took care of him for the last four years in their home, and before that, with increasing worry as he tried to live safely alone, phoned me to say he was in the ambulance. There was something different about this call. I packed a small bag, told the children I would be back but was unsure when and drove the hour to the hospital.
He was in a room in A & E and we waited for 2 of our 4 brothers to arrive. He was moved to a ward and the 4 of us waited that night til his breathing got easier. The next day, Friday 18th October, he was moved to a single room and the Celtic spiral “end of life” signs were hung discreetly on doors.
It had been some time since I’d heard his voice. He suffered with fluid on his brain (a form of hydrocephalus) and the surgery had given him very little improvement. He was bed-bound from 19 months previously and fed through a tube in his stomach for the preceding 15 months.
When I visited him in April, 6 months earlier, he had said “Not too bad” when I asked how he was and I’m pretty sure that was the last time I heard him speak.
Daddy had a lovely singing voice. He liked “The Galway Shawl”, “The Rose of Tralee”, “The Boys of Wexford” and “Boolavogue”. He loved funny recitations: “Nell Flaherty’s Drake“ and Pam Ayres’ “Oh I wished I’d looked after me teeth”, John O‘Brien‘s “We‘ll all be Rooned said Hanrahan“ and “The Trimmings on the Rosary“.
It was funny how in later years I always referred to him as Dad, but as he was dying over 4 days in hospital, I called him Daddy or even the more childish “Dada”.
Losing a parent is never easy, whether you’re 4 or 14 or 46. On a very selfish level, there’s no longer a generation standing between oneself and one’s own death. Particularly, if you have a difficult relationship, the death of a parent brings back all those conflicting memories, the good and bad times, the way you imagine they’d like to be remembered, listening, supporting and the ways you’d both rather forget, serious disagreements and interferences and lack of respect for autonomy.
So I sat and held his hand.
I prayed.
I sang.
I sang hymns he loved, like “Faith of our Fathers” and “Sweet Heart of Jesus” and “Salve Regina”.
After hymns, I went through what I remembered of “Boolavogue” and “Cavan girl” and “Follow me up to Carlow” and even “How much is that doggie in the window?”

My abiding memory is the early mornings, when the kitchen staff decided I needed to be fed porridge. The times the nurse would say “we need to settle up your Dad” which was code for “please leave as we are cleaning him” and required the help of an orderly to lift and move him. I’d go to the hospital chapel at those times and light a candle and plead “Take him! He’s suffered enough.”
You know he’s living longer than medical staff expected when the nurse who says good-bye on Friday comes back for her shift on Sunday and says “Are you STILL here?” in the tone usually reserved for women about to give birth whose babies are too snug (or just not quite fully cooked) and reserving the right to choose their own birthday if allowed.
Daddy was waiting for his own time and I wondered if it was my fault? His 2 youngest sons lived in Australia. They believed our brother when he passed on the code from nursing staff “tell anyone who needs to say good-bye to do so”. For one brother this involved late night faxes and diplomatic courtesies as he was issued an emergency passport. The Doctor wrote “we have advised the family to gather” which was a lovely piece of gentle code for the inevitable. But I had doubted that he could hold on. On Saturday, I said to one brother in Australia “ I’ll put the phone to his ear. Not on speaker. Say whatever you need to.”
He told me later he said “We love you Daddy. We’re on the way.”
So Daddy waited for them, despite the lovely nurse saying, “you know he can’t hold on” and we said “we didn’t ask him to”.
The lads from Australia arrived on Monday October 21st at 3.20pm and Daddy breathed his last an hour later.
A minor miracle in itself, a bit like life.

In loving memory of Michael O’Connor,
born 22nd January 1933,
died 21st October 2013.