Curiosity Without Judgement Interviews: Mamas with a Disability

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Mothers with a Disability

Kelly, with her husband Gordon and son, Liam.

By Rachael Mogan McIntosh

‘Having children is like living in a frat house,’

says comedian Ray Romano.

Nobody sleeps, everything’s broken, and there’s a lot of throwing up.’ 

It’s true, isn’t it? Family life is unpredictable and busy. It’s something of a marathon, and it takes a huge amount of energy.

But what if you have a physical disability? How do you manage the needs of a family while coping with health problems of your own?

Today, MamaBakers Kelly and Narelle let us peek into their lives.

Kelly,  who lives in Australia’s picturesque Northern Rivers region, has muscular dystrophy and admits that there’s not a lot she finds funnier than watching husband Gordon fall out of his wheelchair. Kelly studies part-time, raises her ten year old son Liam, and – like every school mum amongst us – struggles to keep school lunch interesting.   ‘I’m just like everybody else’, says Kelly, ‘except I’m sitting down.’

Narelle lives in Melbourne with her partner and daughter (3 going on 16). She runs an internet radio station while living with Multiple Sclerosis and Crohns Disease. ‘Living with a disability has made me more tolerant of others’, she says. ‘I don’t sweat the small stuff, and I am accepting of the fact we are all human with limitations that change from person to person, day to day.’

Here’s Kelly:

Kelly and her son, Liam.

Kelly and her son, Liam.

Could you take us through an ‘average’ day at home?

Is there such a thing as an average day?  I guess it starts pretty early in our house.  I have support workers that come to my house at various times to help with some household duties as well as some personal support for me. Having people come in and help is mostly great. I’ve come up with a morning routine that they follow each day, basic stuff like empty the dishwasher and hang any washing. In the afternoon they might come and take washing off the line or help to prepare dinner. People often think it must be great having people come in to do some house work but I’d much rather  be able to do it myself.

Outside of holidays, it’s school for Liam and TAFE  for me. Gordy (who has been paraplegic since 2007) runs a local wheelchair sports program. I have been using a wheelchair for just under three years. People sometimes think it must be horrible to have to use a wheelchair but I don’t see it that way. Before I got my chair life was pretty hard. With my wheelchair I can go anywhere I want (as long as it is accessible). Liam can even hitch a ride when he gets tired from walking!

What do you find hardest about mothering with a disability?

The times when Liam says ‘I wish you didn’t have a disability, Mum’.   It doesn’t happen often but it’s pretty hard when it does.

There have been times I have felt guilty and sad that he may be missing out on things because Mum and Dad are both wheelchair users, even though we have always worked hard to make sure he gets to do the things other kids do. I don’t carry that guilt as much anymore. I feel that every family has things they struggle with, and I’m yet to meet any parent who thinks they are doing it perfectly. We all do the best we can…..good parenting is not measured by my ability (or lack of) to kick a ball with him.

Also, I have an awesome kid who has never been any trouble. I’m very lucky that he picked me to be his mum! I sometimes wonder if his patience and empathy come from having lived experience with people with disability, but I honestly think it’s just who he is.

What ‘everyday’ tasks do your head in?

School lunches!  I’m always trying to find new things to put in although Liam is quite happy to eat sandwiches each day. As it gets harder for me to bake I tend to send more packet food, and that really frustrates me.

Accessibility is a big issue for us. Getting out and about while having a disability often involves lots of planning. Does it have an accessible toilet? Is it accessible in general? Will there be too many people for us to move around and as result make it not enjoyable?

If we’re going outside, mud is obviously out and gravel is a nightmare. We don’t often just up and go. There are always phone calls first and then double checking. I have been known to not drink for most of the day because Liam wants to go somewhere that doesn’t have an accessible toilet. Liam is pretty quick to notice if something is accessible or not. I think he actively checks access everywhere he goes, whether we are with him or not. It’s nice to know he is aware of inequality in life, but it’s a shame he has to experience it.

Managing life with a disability can require you to ‘dig deep’ to find resilience, strength and good humour. How do you do that?

I honestly have no idea! I just get on with it…what else can you do? I have people around me who I love and who love me. I live in a beautiful part of Australia and have some great friends. There’s not a lot to complain about!

We all have a pretty twisted sense of humour, which works perfectly for this life. My parenting motto is: “Whatever gets us through the day!” As long as we all go to bed each night feeling happy and loved I’m not too bothered.

 What do you wish people knew about your life?

I sometimes think people have an unrealistic idea of what life with a disability is like. Sure, it can be challenging at times, but mostly it’s just like everybody else’s and I wish more people knew that. I don’t need sympathy and definitely don’t want to be ‘inspiring’ to anyone. Other people’s attitudes can often be my biggest disability.

I think mum-judgement is worse when you have a disability. I felt that people constantly doubted my ability, which made it hard to ask for help. Liam was once nominated for a ‘young carer’ award, and the local paper did a story on him. One day a lady who had seen the article approached me to ask if Liam got to have a childhood or if he just had to look after his parents all the time. So very offensive!

The other side is when well-meaning people who tell Liam: “Make sure you look after Mum and Dad” without realising that it makes him feel as though I am his responsibility when I, very obviously, am not. That’s something I really want people to know. Do not tell kids whose parents have health issues that they should look after them. It causes more problems than people could imagine and if something bad were to ever happen, the guilt would be soul destroying for the child.

Here’s Narelle:

Narelle

Narelle

Hi Narelle! Could you take us through an ‘average’ day at home? 

I have had Multiple Sclerosis (MS) since the age of 19 and Crohns since I was 22. At times I have been so unwell that I haven’t been able to walk, see properly or ‘think’. Sometimes my arms lose function or my body gets weak to the point of having to carry a cup with both hands have to be super organised and try to get through as much as I possibly can on good days, in case the next day, or even that afternoon my MS kicks in and I can’t get anything done. I have lists and lists of lists that I work through, and I literally don’t stop, on a good day, trying to get through it all. We don’t have family nearby, so I really need to stay on top of things as there isn’t always someone who can help out if I’m unwell. I have had to learn to go easy on myself and others.

What do you find hardest about mothering with a disability? 

The hardest thing about mothering with a disability is that little ones don’t understand why, when it’s really hot, Mummy has to lie down, or that sometimes mummy can’t pick you up or carry you because her arms just won’t do it. So sometimes I can feel like I am letting my three year old down, but I try to replace playing outside on a hot day with fun inside activities so she doesn’t see me as ‘disabled’. I don’t want it to even cross her mind that I can’t do something or that this illness limits our experience in any way.

There are unexpected benefits to mothering with a disability. For instance, I need to think creatively in hot weather so we can spend real quality time together. It also forces me to slow down and really pay attention to Miss 3 when she wants attention, and to engage properly with her. I also hope that it shows my daughter that anyone can do anything if they try, and that she can reach her dreams if she works hard at it.

 Do you think your disability changed who you are and how you see the world?

I think it has changed who I am – but in a good way. It has made me stronger and made me refuse to let my life be dictated by what others perceive my limitations to be.  I also no longer see ‘no’ as an option. I feel that there are always ways to work around things, and that with patience and determination you can achieve anything, whereas before I perhaps used to give up too easily.

What ‘everyday’ tasks do your head in?

Changing the toilet paper roll after someone else empties it! I have yet to see proof of a toilet paper fairy, and I certainly don’t have a sign on my head saying ‘toilet paper changer’, but I take solace in the fact that I’m not the only one.

I really have to prioritise tasks and not be too hard on myself if I don’t get things done. My daughter is number 1 priority and on bad days I just focus on her and her needs and everything else can wait. Illness has definitely taught me what is important and to forget about things like beating myself up when I’m unwell and the house isn’t super clean, or all emails haven’t been replied to. I still push myself but I’m much more aware of and respectful of my own limitations now.

Managing life with a disability requires you to ‘dig deep’ to find resilience, strength and good humour. How do you do that? 

If I had let others tell me how to live my life I would have been in a wheelchair within 6 months of my diagnosis and a nursing home within 12 months as my neurologist tried to lead me to believe. I had two choices that day- give up, or push on and do my best. So that’s what I did, my best. I was totally aware that sometimes I spoke like a drunk, or walked ridiculously, or looked completely hilarious trying to complete everyday tasks. And that is ok.

Once when a friend drove me to the hospital for treatment (I used to have to go for massive doses of steroids) when I was barely able to walk. The receptionist at the hospital offered me a wheelchair and I refused because I felt if I didn’t try, next time it would be easier to give up. The receptionist accused me of playing a game and pretending to be unwell and that it was horrible etc. I just laughed. I had to. I think if you take too much too seriously or too personally you can wind up miserable before you even begin. I’m not saying life is a game, but if I have a choice between laughing and crying, I’d rather laugh- especially at myself.

What do you wish people knew about your life?

That illness doesn’t define me. It is not part of my identity. That they don’t need to look at me with pity when they find out I have MS, as I am grateful for what it has taught me.

What’s your favourite recipe?

Raw Brownies!

Kelly and Narelle’s approach to life and motherhood epitomise the MamaBake values: sense of humour, love of life, strength of character. Their fortitude in the face of tough times brings to mind the Samuel Beckett saying: 

‘I can’t go on. I’ll go on.’ 

Good job, you two! Keep up the excellent work, and from all your Mamasisters:  may today be pain-free, with added chocolate. 

About Rachael Mogan McIntosh

Rachael Mogantosh

Rachael Mogantosh

Rachael Mogan McIntosh has three children under seven and just the one husband, with whom she lives on the Australian south coast. The chaos sometimes makes her eyes leak salty water, and her laundry rarely has the freshness of Scandinavia, but the people in her little house bring her enormous joy.

She finds motherhood very pleasing and endlessly comedic. It’s not easy. But neither is making a really nice croqembouche, and in her experience they both come with great rewards, although only one has custard.

Read more of her, here.

 

 

 

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