Some people raise their eyebrows if we use the word "dwarf". When I was pregnant I was told that Adam had Achondroplasia, which is another word for dwarfism. To be honest, at that stage when I heard the word "dwarf", I thought of the Oompa Loompas from Charlie and the Chocolate Factory. I remember thinking, I don't want one of those. Then Adam arrived and stole our hearts. Sometimes it seems his father, Noel, and I have spent the past 10 and a half years fighting to make sure he gets all the chances he truly deserves.
Adam was just four pounds when we brought him home from the hospital. We were told at the time that there was a 90 per cent chance that he would die before he was six months. Then we were given 50 per cent odds on him surviving for the next year. He had narrow airways and breathing problems, and we were constantly scared that he might choke.
If you came into this house when Adam was a baby the smell of Domestos and Milton would have knocked you out. If anyone sneezed in front of him, I was terrified. My attitude was, if he dies it won’t be my fault.
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We were always afraid of losing Adam. He was wrapped in cotton wool for the first two years. You do get over that phase.
It was clear very quickly that Adam was not meeting his milestones. There were problems with speech, hand-eye coordination, and walking. If you called his name he did not respond. But I taught him signals, and he and I could communicate. If he was dirty he banged his bum at the end of the cot and if he wanted his bottle he made a popping sound with his mouth. I knew exactly what he wanted.
Sleep apnea was a big problem; one of us slept with Adam until he was seven.
When a child does not meet their milestones there is an assessment of needs. But we always felt that they were not getting a true picture of Adam’s potential. When he was three, we were told that Adam would never have a conversation with us, that he would never be affectionate, and that he would never hold eye contact with us.
Well, we knew how much he loved hugs and kisses. We could see how frustrated he became when trying to form words. We have never been able to understand how they could say “don’t expect anything”. Surely a child should be given every resource to meet his potential.
He was diagnosed with autism when he was five, but we always felt there were other things going on. We really identified with Keith Duffy when saw him talking about his daughter on the Late Late Show. We felt that our child was being put in a box, but he was capable of so much more.
We know now that Adam has sensory deficit disorder. Eventually he was diagnosed with focal epilepsy. We did not realise for years that he was deaf.
If we change the carpet on the stairs, Adam will not stand on it for three months. If we put different covers on the bed, he will not lie on it. If we put the table in a different place, he will drag his chair over to where the table used to be. If we go out to a restaurant, it can still take five minutes to get him through the door.
The lights switched off
Adam was enrolled in the Holy Family preschool in Sligo. The staff were brilliant, but he was always sick. It was as if the lights were switched off and he would go into a trance. He lost weight. We had a child who was fading away. He used to blank out and fall. I wondered about epilepsy. We were petrified to let him out of our sight.
Then he had a huge seizure. He spent three days on life support in Temple Street hospital. We nearly lost him.
Adam was discharged from Temple Street but the same thing happened two weeks later. I will never forget the journey to Sligo hospital. We got a four-car police escort. Noel was doing 120 miles an hour and I was in the back with Adam. He had gone purple and was getting sick. His eyes were fixated. He was five at the time. We were at our wits’ end.
Adam was complaining of pain and his neck and his head were swelling. The pain was so bad that he used to open the freezer in the fridge and stick his head into it. He used to literally bang his head off the walls.
We were told it would take 18 months to two years to get an MRI done. My reaction was he could be dead by then. I am from Cork and we decided to approach the Mercy hospital there. Around this time the Adam Kennedy Trust was formed.
Horrific side effects
It was a huge breakthrough when they did an EEG in Cork in 2011 and focal epilepsy was diagnosed. But the side effects of the first medication they tried were horrific for poor Adam. He started to hallucinate. He used to squeeze in behind the toilet because he was afraid of us. He saw strangers in the corner of the room and he would scream the house down.
It was as if we had changed our faces and he did not recognise us. He also started pulling off all his clothes, as if something was crawling all over him.
Drawing has always been a way out of his distress. He has been painting since he was about three. He started painting on the walls – I did not paint them for about seven years – and on the patio doors. The sun would come in through the glass and he loved painting there.
Noel is a photographer and he took photos of the paintings. The worse the pain, the darker the paintings.
The Trust began selling framed prints at pop-up shops in Sligo. We must have sold about 300 of them. They helped to fund his education for a long time.
Compression of spine
When the MRI was done back in Temple Street, it showed compression of the spine. We thought at first that Adam would need major surgery. But in October 2012 a shunt was put in to drain fluid off his brain and he did not need the operation. And at last it fixed the pain.
Adam probably had a headache from the day he was born. Once they put the shunt in, we saw an immediate difference. His face changed and he became calmer.
If all doctors and nurses listened to parents the way Darach Crimmins [consultant neurosurgeon in Temple Street] and Olivia O’Mahony [paediatric neurologist at Mercy Hospital in Cork] listened to us, it would save children a lot of pain.
The Trust has helped to fund Adam’s education. He has a Portacabin at the back of the house. After just 12 weeks of Applied Behaviour Analysis (ABA) he said “Mammy” and “Daddy” for the first time. You can’t imagine what it is like to hear “mammy” after 10 years. (Of course he has picked up other words he shouldn’t repeat.)
And he is now nearly toilet-trained. We can’t believe the progress he made in the first three months. The aim now is to get him ready to go to school in September. But ABA is expensive. It could cost €20,000 this year.
We also need to adapt the house. Adam’s limbs are short. It is cruel to expect him to go up and down that stairs. We have to lift him in and out of the bath, and he is seven stone now.
What we want is some kind of independence for Adam. We want him to reach his own potential. Every day brings something new. If we did not fight like we did, where would he be now?
We have found out that the dwarfism gene started with Adam. We have another son, Luke, who is seven and is perfectly healthy. Whenever Adam had to go to hospital, it was always Luke who packed his bag and packed his favourite teddy.
When you are pregnant, you expect you will have a son who will play football and go to the cinema with his friends. the hardest thing I had to do was to bury that idea of the child I thought I was going to have. But now I have a new set of expectations for Adam.
In conversation with Marese McDonagh
