The youngest of our four children, Seán was a fine, strong fella for his age at 16 months and just learning to walk, regularly falling down and getting up again. But on the evening of Friday, June 15th in 2006, he became unwell at our home in Kenmare, Co Kerry and vomited. We thought it was just tonsillitis and put him to bed.
The following morning we couldn’t wake him; his arm was extended straight and we couldn’t bend it. We brought him to the doctor who, suspecting meningitis, sent us to Kerry General Hospital in Tralee.
After the start of treatment for meningitis, however, one of the doctors noticed a bump on the side of Seán’s head and that one of his eyes was not reacting to light. It was then deemed he had a head injury.
“Did you not see, did you not know?” they asked. “Did he fall yesterday?” The answer was yes he did, but he was falling three times a day and we didn’t see anything out of the ordinary.
Deteriorating rapidly, Seán was put into an induced coma and transferred by helicopter to Cork University Hospital. There he had a cranial evacuation, basically drilling a hole to drain off the blood, to relieve the pressure of the extradural haematoma. He was in intensive care, and I, my wife Kathleen and members of our family took turns to sit with him 24/7.
With cat scans coming back clear, they took him off the ventilator after a week. But then he took a turn for the worse. He was extremely ill and taken out of intensive care because they didn't think they could do any more for him. All I could see was a little white coffin at that stage, to be honest.
Holding on
I don't know what happened but, over the next few months, he started to claw his way back. He had a thing called cerebral irritation – an itchy brain – and he couldn't scratch it. He cried for days and days and days. It was very upsetting.
The stress of it caused internal bleeding in his gastro system – it was horrifying and there was no stopping it. He was transferred to the children’s hospital in Crumlin for a week for the gastro problems and then returned to Cork. He couldn’t sleep; he had lost his swallow and was just limp in our arms. We were distraught.
The doctors said an MRI scan showed multiple areas of damage and they talked of long-term, profound disability. The fact that he had lost his swallow meant there would be tube feeding.
They suggested we would not be able to manage Seán at home and needed to start looking for a nursing home to take him.
It was a nurse who first mentioned that there was help out there for us – the Jack & Jill Foundation, which I had never heard of. A Jack & Jill nurse came to see us, and it was not so much about what they were going to give us or what they were going to do for us, but the sense of support – we are with you in this one.
Seán was in Cork until the end of September and then went to the National Rehabilitation Hospital in Dún Laoghaire, Co Dublin. He would probably have had a lengthy stay there but for the fact that we live 250 miles away and they decided after a few weeks that he would be better off in his own environment.
When he came home at the end of October 2006, he was weak and puffy with drugs. He had lost all of his mobility. He couldn’t walk, couldn’t talk, couldn’t feed himself and his swallow was precarious.
But we had hope. We had no choice: you have to get up and get on, but it wasn’t always easy.
The Jack & Jill nurse would come in for a few hours a week, sometimes just to take him away for a drive to give us a break. This is what makes home nursing possible, otherwise you couldn’t deal with the pressure. If you’re a nurse, you’re a professional; if you’re dealing with one of your own, your emotions are tied up in it – it’s very difficult.
However, we’re lucky because Seán has come home from hospital and has been getting better. Other children who Jack & Jill helps to nurse at home, up to the age of four, never get better.
Seán has made a fairly miraculous recovery. He has gone from saying nothing but “ah”, to almost a full vocabulary. He has trouble putting sentences together – he knows what he wants to say but the door to the library is not fully open and he can’t get the words.
He walks with a limp and is blind in one eye, but he has come so far we are not complaining. We were building wheelchair ramps at the back of the house at one time. His mobility is good and he is mad for basketball and soccer.
At the age of five, Sean went to the local national school and got a special needs assistant. We later applied for him to be transferred to another school in Killarney, 25 miles away, to a special language class. It follows the normal curriculum but there is a speech therapist with them three hours a day.
It was a very difficult decision, one we mulled over for months, because we were wrapping him in cotton wool and didn’t want to send him out into the big bad world on the bus to Killarney. But it was the right thing to do – he has been there two years and it has made a huge difference.
Our other children, Tom (14), Karen (13) and Abby (10), were fantastic in Seán’s recuperation. They brought him on so much. Everything he had to relearn, he learnt from them. It changed their childhood as well; they weren’t able to go places and do things that other kids did because it was always “we can’t do it because Seán . . .”
Seán, who will return to the local national school in September, is a graduate of the Jack & Jill Foundation – an example of how the model of the home nursing care it promotes works. Without its support, we probably wouldn't have been able to deal with the whole thing.
Running up that hill
I wanted to give something back to Jack & Jill and came up with the idea of a 10km run/walk – "Jack and Jill Go Up the Hill" – around Kenmare, which is now in its sixth year. With an emphasis on fun and family, it is about more than fundraising, it is also about building awareness of the charity.
Seán hasn’t had any scans for a long time. There’s no point because all they are going to tell us is that there are areas of his brain that are damaged, but nobody knows what’s going to happen next. We just take it at one day at a time.
In conversation with Sheila Wayman
“Jack and Jill Go Up the Hill” takes place in Kenmare, Co Kerry, this Saturday, April 27th, and entries (adults €20; children €5) can be registered right up to the 3pm start. For more information, see jackandjill.ie
