Celebrating the ‘can dos’

Katina Wright, a mother with multiple sclerosis from Cornwall, UK, discusses her experience of parental guilt and the importance of celebrating and utilising the ‘can dos’.

Katina with her husband, son and daughter.

Parents typically carry the burden of ‘guilt’ like a heavy load they’re unable to shed. If our children suffer any emotional or physical problem, no matter how trivial, we are bound to wonder, “Was it something I did or didn’t do?” If they get in trouble or act out, we question whether their behaviour is a result of our poor parenting. However, as a disabled parent, I find myself suffering from a whole different set of guilt inducing experiences.

Emotional pain

For six months, beginning in the last trimester of my second pregnancy, I was bedroom bound with a pelvic joint problem. Initially, we were unaware that my immobility was partially due to multiple sclerosis (MS). My 18-month-old daughter cried for me when social services’ carers got her out of the cot, dressed and took her to activities. She didn’t understand why we weren’t able to enjoy our regular outings together. Every time she cried for me to do things with and for her, guilt coupled with volatile pregnancy hormones caused emotional pain to rival the pelvic pain I was enduring. My guilt included self blame and worry that my daughter may suffer emotional damage at my withdrawal and from the introduction of so many strangers as carers.

With a baby and toddler to care for, my reasons to feel guilty increased. With my daughter I’d gone for long walks, to soft play sessions, the park and swimming. I never got to carry my son around like I had my daughter, or push him in a pram/pushchair or take him swimming as a baby. This still hurts even now they’re seven and nine years old. Other people would take them out to fun places that I couldn’t manage and we all felt we were missing out on sharing these experiences. 

I constantly worried that my children would crawl or run into danger faster than I could save them; I felt inadequate. If they fell over they would have to come to me to be comforted. I felt guilty seeing other parents go to and scoop up their tearful children. If my children needed pushing on a swing or rescuing from the top of a climbing frame I had to ask friends or sometimes strangers for assistance. Unable to run and retrieve also meant I was constantly shouting reprimands and instructions. In a park full of able bodied parents I felt like the loud-mouthed mother who couldn’t control her children; more bad parenting guilt. 

As my children have got older I’ve been unable to do school runs, had to miss school events or, because of the unpredictability of MS, had to let my children down at the last minute with things that were previously planned. The guilt I feel when they miss out on an activity or my participation in it is hard to reconcile, especially when they’re upset.

Children are adaptable

My children have needed to help me and themselves with tasks that other children their age weren’t asked to do; fetching, carrying, passing and learning to be independent from a very young age. Of course I worried and felt guilty about this too. However, children are adaptable and readily accept the way things are. My two started to take pride in the practical skills they developed before their friends. They’ve learned to be considerate and aware of other people’s needs. With a mum who’s in and out of a wheelchair, and who gets balance and nervous system problems, they are more understanding of others with illness and disability.

Friends have highlighted the positives that have resulted from our situation. For instance, a friend adapted her parenting approach after seeing that my children would come to me if they really needed something. Previously she’d exhausted herself assuming that she needed to rush to them.

As I was seated for lengthy periods of time my children sat, cuddled and talked with me, strengthening their communication skills. Because I’ve been unable to engage in physical activities we’ve spent a lot of time doing arts, music, crafts, puzzles, reading, storytelling and writing. Of course the attention I give them is also balanced with long periods when I’m too ill to do much at all. During those bad times when guilt tortures me, I have to try to remind myself of this balance.

Children have the ability to transform an uncomfortable situation into a humorous one. At a recent hospital appointment, my right leg was twitching uncontrollably and because stubbornly I had taken sticks rather than a wheelchair it was causing me severe problems. We named it Mummy’s disco leg and my son and daughter surprised staff with the dance they designed to complement my progress down the corridor. If they’d got upset with me falling around then I would have suffered my constant companion: guilt. As it turned out laughter helped us all overcome any awkwardness or worry.

Similarly, for a long time I hated using a mobility scooter when shopping or on an outing. But my children think they’re great fun and wish they could ride on one too. Their enthusiasm helps defuse my discomfort. One of their favourite stories involves us on a bike ride in torrential rain. With my husband, they rode to shelter much faster than my hired scooter could manage. I eventually arrived at the house completely drenched and with me pretending to be grumpy we all ended up in fits of laughter. My scooter experience has provided a fond memory. We have a few humorous stories we recount involving scooters and wheelchairs.

‘Can do’

Being a chronically ill, disabled parent I do find plenty of reasons to feel guilty about not being able to do things. But it occurs to me that if I focus on what I ‘can’ do, suddenly I am reminded of the many positive experiences I can offer my children. All parents carry guilt and have limits that may be different to my own but still affect the way they parent, but it is how we approach things that can make a difference. I’ve learned that setting rules and encouraging communication helps my children understand why they have to behave and cooperate. I wouldn’t always share my difficulties with friends for fear of becoming whiney. But I’ve now learned that people aren’t psychic and if I don’t explain then they can’t be expected to understand. I used to resist accepting help because I didn’t want to be a burden. However, now I find alternative ways of giving and repaying favours; of course I may not be able to do sports with friends’ children but I am good at music, crafts and imaginative play. I accept that I’m not always able to help practically but that I can be a good friend in other ways. Of course I have many bad days but now I try not to berate myself for the ‘can’t dos’ and instead celebrate and utilise the ‘can dos’. This helps me cope with the parental curse: guilt.


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