A special daughter....

I am writing this on in February 2021, on the day that Siobhan would have turned 37. It has been 37 years of heartache and laughter, of hardship and fun, of great new friendships and terrible loneliness. Mainly it has been 37 years of love, unconditional, uncomplicated love.

Siobhan was born with a rare chromosome disease, it is so rare it doesn’t even have a name, just a description. It is called ring-chromosome 8, because her chromosome 8 lost bits of the ends, and instead of looking like the v-shapes you usually see on pictures of chromosomes, the end where the bit broke off, turned in towards each other and stuck together, making a ring. As far as we know, Siobhan is the only person in the world with her particular disorder, so a very unique young woman.

When she was born she was really small, 1.65 kg. She was breech as well.  I was in Airmount maternity hospital in Waterford, and she was rushed across town to Ardkeen, so I only saw her for a couple of minutes. Alan went to see her later that night, and just remember how small she looked, with wires connected to her everywhere. After a few weeks her paediatrician decided to run a genetic test, and that was when we discovered ring chromosome 8. We were told that she would be severely disabled both intellectually and physically, and that chances were she would not survive her first year. We were devastated, and now had to go back and tell our families.

My own family are in Norway, and it is one of the times when you really miss your family, I could have done with their practical and emotional support, and the phone connections in 1977 were rubbish! Most of Alan’s family were also away, in London, and Alan’s mother Lettie….well, she was just unbelievable. She accepted Siobhan totally and she loved her unconditionally, and Siobhan loved her back. When Alan went back to work, on big oil tankers (ships!!!), she would look after Siobhan every afternoon for an hour while I took Towser and her dog Ringo, for a walk. It was a life line, just to get out and clear my head.

Siobhan was baptised in our local Church of Ireland church St.Mogues, incidentally the first baptism for decades. She was always a good humoured baby, and from the start we put her to sleep in her pram in the sitting room. I am the eldest of 9 children, and know from experience that babies don’t care if it quiet or not around them, so we wanted to get her used to sleeping without having to tip-toe around the house. It worked, till the day she died she could go to sleep anywhere. Except we went through a stage where I fell into the BAAAAAD habit of holding her until she fell asleep…..very bad idea. I remember watching John Treacy getting silver in 1984 Los Angeles Olympics Marathon, with Siobhan on my lap. In my memory it was like 3 in the morning? We did manage to break the habit, but it took a few sleepless nights….

The first year Siobhan had a lot of problems with kidney infections, and she was one of the first children to get a treatment called the STING, in Our Lady’s in Dublin. It worked, and only for it Siobhan would probably have died very young. But we did discover that there was a serious problem with her kidneys, she was missing one and the other was working at about 60%.  Later on she also developed epilepsy, and when she first had a epileptic fit, it was the most frightening thing ever!

When she turned two I was introduced to St.Claire, a day centre for children with intellectual disabilities. It had been set up a few years earlier by several parents with severely disabled children that had no services at the time. It was run out of two tiny rooms in Bride street in Wexford town. They were open three mornings a week, from 10.30 to 13.30. Every morning when they were open, we would drive in to Wexford, we felt it was vital that Siobhan got professional input, and even if there was very little of that, they at least had a Montessori teacher. Since Siobhan was totally non-verbal, she never used any language or anything like it, we always felt she suffered quite badly from the lack of speech therapy.

 

Really there was no access to any sort of therapy or education of any kind available to our children. We had to fight for everything. We went to genetic counselling—well, counselling is a bit exaggerated, we went to see a genetic counsellor for an hour. At the time there was only one genetic counsellor in the whole country, I think because people connected it with family planning and abortion. We did get to see him though, and our chromosomes are fine, Thank you very much! Siobhan’s chromosome disorder is an accident not caused by anything special, in the building of a baby, sometimes things go wrong, and that is what happened with Siobhan. From she was a year old, she also attended the Central Remedial Clinic in Clontarf. That was where we got most of the professional help, she saw speech therapists, physiotherapists, she attended the seating clinic to get her wheelchair and she even saw a psychologist.

The HSE or at the time it was the South Eastern Healthboard had very little input into her and our life. We would see the public health nurse maybe every second year, we never saw a social worker, in later years she would see  physiotherapists, occasionally a speech therapist and I think twice a dietician in Ard Aoibhinn while she was growing up. It is known today that early intervention is vital for children with disabilities, and it is shameful to see how little have changed in the last 30 odd years.

One thing that has changed is that all children are entitled to an education. When Siobhan was of school age, the State seriously maintained that children with severe or profound disabilities were ‘uneducationable’ so they refused to provide any teaching of any kind to our children. Siobhan was 13 before she finally got a few hours in an outreach class connected to St.Patricks Special School in Enniscorthy. She loved it, and we felt it was really beneficial for her. Unfortunately education was only until she was 18, even though we managed to sneak in an extra year out of it.

Siobhan loved life and loved other people. She was very good at social interaction. People would often ask: ‘How do you know what she wants?’ Well, if you met Siobhan you would know the answer! She would pull your face to look at her, she would use your hand to pick up things, she would bully you until you did as she wanted. As all young women she loved young men,  and would push away anybody else to get to a particularly nice young man, she would be ruthless!

She loved a snuggle with Mammy in front of the telly. Her favourite thing was to turn pages in new crispy magazines, and we would get them form friends and family all over, because the crispiness would disappear quick and then the magazines would be ruthlessly thrown away. Going for a walk with Daddy, visiting friends and neighbours and sharing a cup of coffee and a chat was very popular.   ,Her very,very favourite activity was going for a drive with Daddy, the two of them spent many happy Sunday afternoons examining the sideroads around Soutwest Wexford.

She loved going away on her own, she would have four weeks of respite in the last few years, and absolutely loved going to Gorey and to Windrock outside Wexford town. It is vital for people with disabilities to be able to build a life independent of their parents, just like any other young adult.

When Covid hit and all her services stopped it got very difficult. For people with disabilities their services are their only contact with other people with similar abilities and interests. Lucky for us Ard Aoibhinn stayed open , and we made arrangement for her to attend 2 or 3 days a week. Unfortunately the usual transport arrangements were also cancelled, so we drove her to Wexford and picked her up in the evening. She loved it, but we had started to notice that Siobhan was getting very tired, and there was times when we decided she was not up to going in. In the end of July we brought her to Ardkeen hospital, now Waterford University Hospital. There it was discovered that her last kidney had now stopped working and we took her home to share the last days together as a family. She died on August 4, nice and peaceful. We were lucky, it was between the lockdowns, so family from Norway and the UK was able to come and share with us this difficult time. We had a lovely funeral, we were able to walk the coffin down to the same church where Siobhan and her Daddy had both been baptised and confirmed. Neighbours and friends line the road including  all the staff from Dillons Foodstore . We had a beautiful simple funeral for a maybe not quite as simple girl. She will be part of us forever, and we will love her forever.

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