Waking Hours
Sinead Fidgeon (46) is a nurse and co-founder of The Perfect Gift. She lives in Knockbride, Co Cavan, with her husband, Martin, and their children — Sean (18), Annagh and Clodagh (both 15), Eoghan (10) and Grace (three)
Becoming part of the Down syndrome world
The alarm goes off in our house at 7am. We have five kids, aged from 18 down to three. Martin, my husband, gets the girls out to school, and on the bus for 8am. He’s a part-time farmer and a financial adviser. He used to be a dairy farmer, but he gave up a few years ago. Now he rears other people’s cattle on his land. It gives him time to be at home, and to do his other job, which he does when I’m not here.
I’m just not a morning person. Maybe that comes from years of doing night shifts. I’m a nurse, and I work from 6pm until midnight, in an out-of-hours GP service. Then, when I come home, I like to do some work on the computer for The Perfect Gift. We came up with the idea of a gift basket, which we send, for free, to parents all over the country who have just had a baby with Down syndrome. We want to spread the word, and we’d hate to think that we are missing babies. I love it. In a way, it’s my therapy.
In the mornings, I try to organise myself and get the kids out to school. My day is wrapped around Grace. She is our youngest. Grace was born with Down syndrome. We are very, very blessed to have her. During my pregnancy, we were told that we would lose her. Every week we’d go in and check the heartbeat, and they’d warn us — ‘Be prepared; one of these weeks, there will be no heartbeat’. So when she was born healthy and everything was perfect, it was a very joyous occasion for us, even though we knew Grace would have Down syndrome. That was never going to be an issue for us.
“My experience of having a baby with Down syndrome was a great celebration, but I realise that this is different for a lot of people. I remember that the paediatrician said, ‘I’m really sorry, she has Down syndrome’, as if we didn’t know. Even the other mums on the ward kind of avoided me. They all knew, and they didn’t want to look into the cot. That was very hurtful. One of the midwives whispered in my ear, ‘Sinead, she’s gorgeous, as cute as a button’. That’s what I carried out of the hospital, and that’s what a mum wants to hear.
Of course, Down syndrome is not something that you want, because the professionals tell you that your life is going to be very difficult. But they never tell you the good stuff. They never tell you what joy she is going to bring into a house, and what a joy she is to her siblings, and everyone who meets her.
We were so happy and delighted when Grace was born, that I think a lot of people were happy for us, too. But later on, I found that so many moms of babies with Down syndrome never heard the word ‘congratulations’. They were avoided, and a lot people just said, ‘I’m sorry’.
Even some of the professionals gave very old-fashioned opinions, telling parents that their child would never walk or talk. We’ve moved on from that now. We know that our kids can do anything that any other child can do, but it’s just at a slower pace.
I met Rachel Ni Chonaill, another mom, through a website which she had set up — Down Right Perfect. It’s a closed online support group for parents of children with Down syndrome.
We decided that we needed to do something to help these new mothers in hospitals. We came up with The Perfect Gift. We approached companies, and they were very willing to help us with beautiful products. We wanted these baskets to be full of nice things for the mums and the babies.
Dunnes Stores came on board, and gave us beautiful Leigh Tucker clothes, and MooGoo gave us lovely creams. From the start, people were amazing. We also include some books. One is called
“So many parents of babies with Down syndrome never heard the word ‘congratulations’”
Unexpected, by Jennifer Jacob and Joelle Kelly, which tells the stories of parents of children with Down syndrome. Now we get calls from hospitals and people all over Ireland, and we deliver the baskets. I deliver some, and we also use a courier. It started in 2014, and now we are a registered charity.
When the kids are at school, my day revolves around Grace. She has lots of different appointments — speech therapy and music groups. From the minute she wakes, she is laughing and smiling. She has problems with her eyes
— which is common with children with Down syndrome — and she is non-verbal. At the moment, she communicates with Lamh — Irish sign language — and the whole family has learned it, too.
I’ve been a nurse for the past 20 years, and in the past, I worked in disability services. I had seen Down syndrome, and I wasn’t afraid of it. Also, I have a little cousin, aged 10, and she has Down syndrome, and she is a joy. I knew a lot about Down syndrome before I had Grace, and because of my age I was in my 40s when I had her this was always something in the back of my mind. It was always something that was said to me: ‘You do realise the risks?’ I’d say, ‘Yes’, and that I was willing to take the risk. It didn’t bother me.
I used to spend my time worrying about having the perfect house, but since Grace was born, I’ve changed completely. I don’t worry about things any more. The house could fall down around me. The whole house revolves around Grace.
In the beginning , I thought, ‘I don’t want to be part of this Down syndrome world; we have to keep our real life going’. But you don’t. Your life revolves around it. And the more I got involved in it, the more I loved it. Grace has brought nothing but good into our home. When the kids come in from school, they queue up for their turn to play with her.