We were so thrilled when Daragh came to complete our family, or so we thought at the time! There was 20 months between Daragh and his older brother Nathan and when we noticed that Daragh wasn’t meeting his developmental milestones at around 2 and a half, we realised he might have autism. I remember thinking that a younger sibling would really help to bring him on, that it would be great for him to have one each side of him.
Naoise was born and Daragh took to her fantastically, he adored her. Then our rascal Layla arrived and our family was complete!
We realised that the world wasn’t built for Daragh so rather than make him fit, we did what suited him. That meant that we missed out on a lot of things that other families did but it worked for us and the other kids never once complained.
Daragh’s autism was moderate to severe. He had behavioural issues and some days were very challenging but at the back of my mind I always tried to remember that no matter how hard it was for us as parents, it was so much harder for him. No matter what kind of day we had, one of us went to bed with Daragh every night and I kissed the face off him and said ‘tomorrow is a new day’.
He was so affectionate and lovable and needed lots of hugs and kisses from Paul and I. He was the heart of this home, even down to the layout of the house – he liked things perfect and in a certain way. We scoured the internet to find a place suitable to go on holidays – it had to be somewhere that Daragh couldn’t escape. When we found it, we went there for four years.
Daragh was always laughing, jumping and running. He loved Peppa Pig, ice cream and going to the beach. He loved winter, the fire lit on darker evenings and all six of us in the sitting room. The expression on his face when Paul and Nathan would get home from football on a Friday evening! He just wanted us all to be together.
Nathan, Naoise and Layla were amazing with him. We went to the cinema to see Toy Story and Woody and Buzz talk about friendship and Daragh tapped Naoise on the shoulder and said ‘you’re my best friend’. Naoise has such a vivid memory of that, she was so happy because he didn’t always express himself like that. He had a unique bond with each of them.
Just before Daragh got sick, I was due to go on holidays with my sister and my parents. After one particularly bad day, I rang my Dad and told him that we all needed a holiday, not just me. So we all went – my parents, us and my sister’s family. I really feel that we were all meant to be on that holiday together.
Daragh turned 11 on that holiday and I remember thinking that we could buy him anything but it wouldn’t compare to what he got out of sitting in the water with his brother. That was the last day he was well.
He went off his food but nothing that would alarm you. I put some of it down to his autism and being out of routine but I brought him to the GP when we got home. They thought it was a viral infection but as the week went on I could see this speckly look on his face. I know now it’s called mottled skin. We went back to the GP again and then the doctor on call that weekend, who gave us a letter to go to the hospital on Monday.
When Daragh woke on Monday his face was so swollen and he said his head and neck hurt and he actually wanted to go to the hospital. They got an army of people together to take his blood and said he had a serious infection in his right lung. We were sent to Temple Street by ambulance and the next morning he went to theatre to put a drain in his lung.
I put my face up to his face and I told him he was Mammy’s best boy ever. I thought that was the hardest thing I ever had to do.
We were waiting a lot longer than we had expected and when the doctor came in with a team of doctors, I just knew by the look on her face. She held our hands and and us that Daragh had cancer.
I could feel everything leaving me. It was like I was looking at myself getting the news. How were we in Spain last week and now this? Our phones were hopping with family looking for updates and I thought, how do I say these words. I knew once I said it, it was real.
Daragh was critical and in ICU. They didn’t know if he would survive the night but he did and was able to be moved to Crumlin. By week three he was doing really well and I actually went and did the Christmas shopping, I was so confident that he would be home.
But they just couldn’t manage to take him off life support and eventually we had to say stop and he died with Paul and I and my parents in the room with him. Afterwards, they moved him to a room with no machines and he had his Peppa Pig teddy and his Disney music and we got into the bed with him and held him and cuddled him. The nurses were all lined up outside the room to say goodbye to him.
He was sick for five weeks and five days.
We had his funeral the week before the Toy Show almost three years ago. Daragh loved the Toy Show and was mesmerised by it. We had to have the Christmas decorations up as soon as any Christmas ads came on the telly. I don’t know how, but that week, we put the decorations up for the Toy Show. I think Daragh gave me the strength, it’s what he wanted.
We went back to Spain this year. We were so anxious and highly emotional before we went. I was expecting a massive pang of grief but instead I felt a warmth inside and so did Paul. The kids got into the pool and we saw a white butterfly flying around them. It was like he was with us the whole time.
Daragh had so much to contend with but the love and laughter he brought was just unbelievable.