Published in The Irish Examiner on 20 October 2017
As a mother, I utter the same types of phrases that millions of other mothers say on a daily basis; that I would move mountains for my child; I would do anything to keep her safe. Are these types of statements clichéd? Ineffective? Overused? Meaningless? Or, are they colloquial reflections of the innate strength and resilience of mothers when put to the test under extreme circumstances?
Vickie Thompson’s son, Craig, is twenty-four years old. He has autism accompanied with severe learning difficulties. Craig requires assistance with everyday tasks, such as feeding and getting dressed. He suffers from double incontinence and wears adult nappies. According to Vickie, their family home in Farranree, Cork, is not suitably adapted to cater for Craig’s needs. Craig’s nappies are changed while he lies on the kitchen floor as there is no other suitable place in the house to do so. Vickie and her husband, Kieran, also have two daughters, Kellie, aged eighteen and Abbie, aged ten. Due to lack of space, Abbie shares a bedroom with Craig. The family have been in communication with Cork City Council since 2009 in an attempt to have a ground level extension built to the back of their house which would provide a bedroom and wet-room for Craig, along with a bench to make changing Craig easier.
(photograph courtesy of Vickie Thompson, with her son, Craig, who has autism accompanied with severe learning difficulties)
In September 2017, the family shared their story with the public.
“It’s stressful, letting everyone know your business. What you have. What you need. It’s a worry for the kids. For Abbie. Are people saying things to her at school? I worry about that but I feel I have no choice but to do this”, says Vickie.
Vera Twomey’s daughter, Ava, suffers from a rare epileptic condition, known as Dravet’s Syndrome. Ava is currently being cared for by a medical team in Holland who are administering and monitoring the use of medicinal cannabis to treat Ava’s illness.
Vera is no stranger to speaking publicly. She explained how she felt when she first shared details of her family’s private life with the public.
“To come out and speak on the radio, in the beginning, I was unbelievably nervous. Worried I’d say the wrong thing. I was concerned about what other people might think about coming out in public about my daughter. But, whenever I had thoughts about being nervous, I said to myself, ‘Pull yourself together and get over it because if we don’t get something sorted for Ava, Ava’s going to die’….. It didn’t matter whether I was shy. It didn’t matter whether I was nervous. It didn’t matter whether I was afraid. I had to do this because Ava needed me to do something”.
(photograph courtesy of Vera Twomey, with her daughter, Ava who has Dravet Syndrome)
Jennifer Dowler set up the charity ‘Dogs for the Disabled’ in 2007. The charity trains assistance dogs to aid children and adults who are wheelchair bound or who use walking aids.
“Since I’ve had children, I can directly relate to how children, without a disability or illness, how difficult it can be to not have sleep for one or two nights. But, to think that a child could be sick every night motivates me to expand the charity as much as I can”, says Jennifer.
All three women’s personalities, stories and circumstances are unique. When asked ‘what motivates you to keep going?’, their responses were similar.
“You’d fight tooth and nail for your kids. You’d do anything for your kids, just to see them happy. Just to see them content. It’s that motherly love, isn’t it? Hence the reason I’m doing this now. Why I’m opening my whole life up to the public”, says Vickie.
“Love. You fall in love with them. There is no man made that you will ever love as much as these children. There is no man that you have ever seen, or ever will see, that you would love in the way that you love your children. You love them. They need you. You do what you got to do”, says Vera.
“As a mother, when your child falls over, you want to pick them up. Dust them down. Tell them it will be fine and that you will fix it. When you can’t fix it, it’s difficult. It’s unconditional love. It’s stronger than anything else on the planet”, says Jennifer.
Raising children who do not require extra assistance or have specific needs, alongside juggling the demands of modern life is pretty tiring for most of us. What fires a mother’s resilience when she feels she needs to speak up for her child?
(photo courtesy of Jennifer Dowler, CEO of Dogs for the Disabled, with her children, Ellie, Joshua and Megan)
“It’s always a constant battle to fight for everything for him. Whether it’s respite. Whether it was extra hours in school when he was younger. You’re always fighting. You always have to keep pushing”, says Vickie.
“I have to be the voice for Craig. I have to fight for him. If you have a child without extra needs, you want the best quality of life for them too. That’s all I want for him. Just to give him some quality of life. Just like my two girls, I want the best for them and I want the best for Craig as well”.
“Even when you fight hard in this country, even when you commit yourself to getting what they need, you come up against opposition. I feel like, in this country, they make you work so hard to get the basic entitlements that your children are entitled to. They make everything so difficult for you that it’s almost like an exercise in trying to wear you out. Wear you down, so that you will lose confidence in yourself to get what you need and just give up. When there is such a need, when you have someone that you love so much, you can’t give up, no matter what the cost is to yourself. Your child can’t get it for themselves. It’s your job to stand up and do something for them”, says Vera.
Vera adds, “I think the connection between you and your son or daughter is a very powerful thing. It may not be quantifiable but it is extremely powerful. We all have a sense of duty but there is something within women that is an instinct. It’s there and it’s very real. They are your children and they are your responsibility to protect”.
Alongside fighting spirit lies feelings of anguish.
“I don’t want my son to go into care. I want to be able to look after him for as long as I can….It would break my heart if the day came where I can’t look after my son. That’s what keeps me going”, says Vickie.
“Living with Ava’s seizures, it was a constant throbbing terror in my chest. You’re on the edge and you get used to living on the edge. It becomes part of yourself because you are never relaxed. Ever…The worry is crippling”, says Vera.
“I think, some mothers would prefer to be disabled themselves than to have their children go through it. To see your child in pain or discomfort is horrendous”, says Jennifer.
It seems the American novelist, Gail Tsukiyama, makes a strong point,
“Mothers and their children are in a category all their own. There’s no bond so strong in the entire world. No love so instantaneous and forgiving”.