‘It’s ok to grieve for the loss of the child you believed you’d have’

Sinead and Keith Tighe will celebrate their twentieth wedding anniversary this October. In 2004 they had daughter Shauna and when she was just three, baby Daniel arrived.

“We decided to have two children,” Sinead explains. “When you plan like this you have an idea of how your family will be, how life will look. We are sporty people and when we found out we were having a boy, we were so thrilled, picturing him being into basketball like Keith. We all have dreams for our children. But during my pregnancy I felt as if something wasn’t right.”

Daniel was born weighing over twelve pounds. He has some nerve damage because he was born with his hand over his head. Sinead started bringing him to physio.

“Three weeks in, I expected better tone in his body. I noticed he didn’t have a great suck and he was quite floppy. I know that babies usually gravitate towards the mother’s chest, towards the voice, but he wasn’t. I started suspecting he couldn’t see.

We got the paediatrician involved and she diagnosed delayed eye maturistation. She suggested a wait and see approach. I was devastated but I knew that wasn’t the end of it. When Daniel was ten months old we really noticed that his body seemed more advanced for his age.

Challenges

It was as if his face didn’t fit his body is the only way I could describe it. Everything seemed to lead us towards getting him genetically tested.”

When she was five – she asked me if her brother would ever walk and talk like her friend’s brothers.

Daniel was diagnosed with Sotos Syndrome, a rare genetic condition that causes severe intellectual disability, epilepsy and sensory processing disorder. He requires around the clock care due to being non-verbal, visually impaired and having limited mobility. He also has feeding difficulties and the potential adult height of seven feet. Sinead’s daughter Shauna, who assists with Daniels’ care, received recognition as Dublin’s Young Carer of the Year in 2019.

“Shauna was only three when Daniel was diagosed. She knew no different. We let them grow together. She was very astute to know that he needed extra help. When she was five – she asked me if her brother would ever walk and talk like her friend’s brothers. I told her honestly that we didn’t know and that we’d have to wait and see.

As they grew up together, Daniel understood that Shauna is someone special in his life. They have a great bond. Our house is adapted and one of us sleeps downstairs with him. In the morning, Daniel can’t wait to get out to Shauna. She’s the one she wants to see. She’s nineteen now and her life moves in different ways. But she’s trained in many of the medical procedures Daniel needs at home too.

Assistance

She’s the person who cuts his nails, washes his teeth etc. Over the years people have often said if I feel sad for Daniel. But to be honest, as a family, I’m more sad for myself, Keith and Shauna. Our lives have been greatly affected. I mourn what life should have been like for Shauna having a sibling. Looking after Dan has stopped us going on holidays or having the same family unit others have because we are always dividing to conquer.

But we are a great team for Daniel. I have to say the Family Carers has done such fantastic work. They’ve really looked after us and have helped Shauna with support too.”

For Sinead, a typical day at home is described as Groundhog day. “Daniel wakes early, sometimes even from 3.30am. We will play with me or have cuddles with Daddy.

From six we give him his medication, change his nappy, breakfast and shower ready for his school. When he comes home at 3.45 there can be an hour or so of a meltdown as he regulates himself. All we can do is keep him safe.

Then it’s more feeding and medication and we bring him for a walk. Then it’s the wind down until bed.

We have someone who helps us three days a week, but our current respite centre is closed for reconstruction so I’m actually dreading the summer when he’s off school.

It’s ok to grieve for the loss of the child you believed you’d have. You still had aspirations for who this child was going to be and yet, it wasn’t to be.

Bittersweet

But while it is obviously very challenging, Daniel brings us so much. He has a page called Daniel’s Voyage that we run for him. He likes to be out. So we run with him. We have a rig and every weekend he does the park run with us.

You do it because you love them, but imagine how much better things would be if we didn’t have to fight.

He’ll do his seventh marathon this year. It’s given us a social outlet and he’s build a raport with the people who run with us. It gives him something and we get something too.

The specialist in Birmingham told us to accept Daniel for who he is. He was brilliant. He said ‘yes, he may not be talking, but he is communicating. Find it.’

I got into that world, now we follow his lead. Daniel has taught me so much about patience, compassion – a different kind of love.

Gains

He is who he is. No two kids are the same. Ours are on two different pathways.

Yes, we lost something but we gained so much from this – we’ve gained beautiful friends. We’ve gained something that nobody else might ever experience. We try to be positive. We look at the gains. It can be bittersweet, like his 16^th when I would have thought we’d be shooing girls away from the door (he’s very handsome). But it’s only natural to grieve sometimes.

You do it because you love them, but imagine how much better things would be if we didn’t have to fight.

Something I’d say to people that it is it’s ok to grieve the loss of the child you believed you’d have. You still had aspirations for who this child was going to be and yet, it wasn’t to be.

You recognise what you’ve lost. As you gained, you marry that up. He is who he is. No two kids are the same. Ours are on two different pathways.

When it’s good it’s good. But it is hard work for the rest of your life, 24 hours a day. You’d be so much better off if you got the help and services you need. It would help our families to live our lives too. You do it because you love them, but imagine how much better things would be if we didn’t have to fight.

The Darmody family

Cara Darmody just wants the best for her little brothers. In fact, she was prepared to go to all the way to Leinster House to make sure children across the country like her siblings 10-year-old Neil and 6-year-old John who have autism and intellectual difficulties get better access to services.

12-year-old Cara, who lives in South Tipperary, has been actively advocating for her brothers and others facing similar challenges due to the lack of services. This week, her frequent trip to lobby politicans in Leinster House finally paid off.

Success

The Labour Party organised a Dáil debate urging the Government to provide “financial relief for parents and caregivers forced to pay for local private assessments”, citing Cara’s brother Neil as a precedent.  Minister of State for Disability Anne Rabbitte responded that the Government would “fund the families” if certain targets were not met by August.

“This is the heartbreak – that you are just left out on a limb.”

“She’s a fascinating little character, “explains Noelle, Cara’s mother. “We are so proud of her. She decided the best way to raise funds was to do something very different so she choose to sit the Junior Cert maths paper last year and is sitting the Leaving cert maths paper this year.”

 

Spirit

The window for my son Neil talk has now closed while he’s been waiting on a list to be seen.

Noelle says her daughter’s determination reflects a country wide frustration. “The HSE is overstretched, they can’t hire enough staff. As a parent, can you imagine how hard it is to hear that the window for my son Neil talk has now closed while he’s been waiting on a list to be seen. But there’s hope for others because of Cara.

We are only one family. There’s nothing special about us. But the least you expect for your child is to have access to the experts or for us to have some guidance. This is the heartbreak – that you are just left out on a limb.”

The Darmody’s do their best to rally about the boys’ care, Neil in particular who is non-verbal, has no sense of danger and can be difficult to manage. Noelle says that Cara’s help is invaluable.

“It’s tough for her. We’ve never been on a family holiday, for example. We can’t go on an airplane. Her brothers don’t understand about Santa. It’s Cara who the boys gravitate towards as she’s a calming influence on them. It was her that realised Neil hates the colour red and that green is his favourite. She helps him hold a pen, use the communication charts, peels the apple for him, goes out on the walk with him and their dad every evening.

We are so proud of her and how she’s become an autism avocate. She’s also extremely dedicated to her sports; her gymnastics and football.”

Cara also writes a one thousand-word article for their local paper, The Nationalist about her work in Leinster house. Noelle says that what struck her is that Cara is doing these things not just for her brothers, but for every child with similar disabilities in the country.

“We do ask a lot for her. I can’t have a playdate or birthday party for her, Neil and John can’t cope with the noise. Cara misses out on a lot that her friends can just take for granted. She doesn’t have things easy. But the amazing thing about Cara is that she’s focused on being the best person she can be for humanity. And look at how much change she’s brought about now.

The little gains are so hard fought because there was no guarantee they’d come at all. The small things are huge things in our house.”

What about Noelle herself? As family carers, there can be a lot of isolation and pressure on a family. But she says she’s extremely grateful for the work and support from Family Carers’s Ireland.

There’s very much a sense that you are outside of society.

Alone

“I take it one day at a time. I didn’t pick the path of being a carer. I didn’t choose to be a nurse. But I love my sons dearly. We don’t sleep. They come into the bed with us and we alternate it out based on who is the most exhausted. I can’t make plans to visit friends. We don’t go out because I never know what I’m coming home to. But we do what we can where we can to make things as happy as possible.

There’s very much a sense that you are outside of society. I tried to work part time but we found that Neil needed me. Even his school isn’t equipped for his level of aggression.

The life of a carer isn’t easy and we have two children with these extra needs. We are profoundly blessed to have Cara, but we worry what’s ahead for her as we get older. We sometimes joke that it feels as if there’s dynamite behind every door. Some days it’s harder to joke about.”

See details of Cara’s fundraiser here.