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.

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.
20141103_103210_resized

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.

Weaning gradually, with love

If new breastfeeding mothers had a cent or a penny for every time they got asked:

“How much longer are you going to nurse that baby?”

“When are you going to wean?”

“Surely she’s too old for that now?”

they’d probably have a good start on the child’s college fund.

When two of our six were tandem nursing, I was told authoritatively by a family member:

“You have NO LIFE!”

which meant: “you can’t come to concerts and the pub and places where real life is happening because you’re always with those babies!”

Ah those babies!

Little hands, little gurgles, little night time snuffly noises when they wake to nurse and don’t have to work themselves up into a frenzy to find you because they’re right beside you in the big bed and you can just snuggle and think of all the women who right at this moment are with their breastfeeding babies throughout the world:

in hammocks

on straw mats

in apartments

in farmhouses

in one-room dwellings with three generations sharing living space

in penthouses/palaces(?)…

you get the idea.

I found it hard to watch the news when my babies were very small. Any story about children being hurt, by accident or evil; any sad family tale would cause me to be a snivelling wreck (and the empathy with suffering people only deepened with each new baby). A side-effect of mothering hormones?

Language is so important.

There’s a wonderfully warm, supportive facebook group in Ireland called “Extended breastfeeding”. I joined before the membership was 100 and now it’s over 4,000. But what counts as “extended”? (Certainly, a distractable 5 month old wanting to watch their sibling playing and forgetting to unlatch before turning their head during nursing might fit the bill!)

There have been times I have answered the “and how long did you nurse your babies?” question with a truthful-but-not-the-whole truth reply on the lines of “well, they all had the World Health Organisation and Irish Department of Health’s recommended 2 years and beyond”…

The last child to wean was curious as to how long each of his siblings had nursed. On hearing that one had weaned at 3 years and 2 months of age, his thoughtful six-year-old reply was “that sounds like an early time to stop breastfeeding.”

Now, where could he have gotten that idea?!!