Amy McSweeney's Story
Hi, my name is Amy McSweeney and I’m from Middleton County Cork. Our daughter Emily is 11 years old. She was born on the 4th of April 2012. Emily was born with a cleft lip and palate and was later diagnosed with a developmental delay, autism and an epileptic encephalopathy called Lennox Gastaut which really means she just seized all the time with lots and lots of seizures.
She also has a very rare genetic condition, only recently got diagnosed formally. It’s called Thermite Transporter Syndrome. She is one of 40 worldwide to have this condition and the only one in Ireland as far as we’re aware. Being connected with Laura Lynn has definitely made us live for the now, live for the moment, enjoy making the memories, pausing, reflecting.
Um, there’s so much planning when you have a child with so much care and so many complex needs and so many appointments that it’s really lovely to be able to come up here and relax and not have to think or talk about all those appointments. So it really is enjoying the now and being in the moment when we’re up here.
Caring for Emily, she kind of consumes most of the day at home. She’s peg fed, she’s non verbal. She can’t really communicate except for smiling at us, so we know she’s happy most of the time because she smiles at us. She is hard in the fact that you cannot take your eyes off her, you cannot stop minding her, you cannot, you have to lift her everywhere, into the buggy, into the wheelchair, into the car.
Um, there’s always a what she do next. She requires a lot of care, but like the laugh and the smile we get back is amazing from her, like she’s an amazing, amazing little girl. Emily has two older brothers, Ben who’s 16 and Evan is 14. They are both absolutely amazing with Emily. They love to play with her.
They annoy her too, being brothers of course. Um, they care for her with me. They help me lift her. They help me give her medication and rescue medication. The Cork Community Service has been absolutely amazing for me and my family. We’ve run two coffee mornings with them so we get to meet other parents.
We’ve also had a nurse come to our house. Especially in times of need or when Emily has been very unwell, she could be really sick, she could be seizing a lot, she suffers from chest infections a lot, they’ve, they’ve come to her house. All I need to do is pick up the phone, ask if there’s any available nursing hours and they’ll always do their best to facilitate us.
We might get a three or four hour slash, two or three times a week when she is sick. They’re really, really… Accommodating. The nurses are amazing. It’s just so fantastic to be able to be at home, but like I can’t take Emily shopping and stuff like that. Grocery shopping. So it’s fantastic that they can come to my house and I’ll be able to go and do those little things.
Get a walk in by myself and those kind of small things. So yeah, it’s just been amazing since I’ve come to Cork. It’s been really, really helpful to me and my family. When first hearing the words palliative care, it’s really scary, it’s really terrifying and you think it’s the end, but it’s not. They’re there to help, they’re there to fulfil the life of you, your family and the child in question.
They’re just absolutely amazing. Give it another chance if the first one doesn’t work out. It’s hard the first time. It’s hard to leave a child to someone, whoever it is, nurse, doctor. Of course, they’re professionals, but they don’t know Emily. But they weren’t long getting to know Emily in our situation.
And honest to God, it’s not as scary as it sounds.