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Bonding pains ... and rewards

Clover Szewczuk, who has Friedreich's Ataxia, from Hove, UK, discusses her experience of becoming a mother and overcoming her fears of not bonding with her baby.

I have Friedreich's Ataxia, a rare-ish neurological, degenerative condition that affects my ability to walk as well as my co-ordination, balance and speech. Added, though connected, complications are diabetes and newly diagnosed heart failure. I am at a stage in my disability where I cannot walk at all and can drop things fairly easily (including babies!) Not an easy situation to be in as a new mum, but by all means do-able!


Fears of not bonding with my baby consumed me from the moment I saw that pink line appear on the applicator. Yes, I was to be a mother, but would I be the one the child would run to should they fall over? Would I be the one the child would want to be picked up by? These initial concerns soon grew into a sense of general panic, overwhelming me in the early stages of pregnancy, as I battled with feelings of utter despair and rejection of the upcoming process.

I was desperate to find other mums or mums-to-be with Friedreich's Ataxia. I didn't want to know about how parents in wheelchairs could cope with babies, practically or otherwise; I wanted to know how parents with co-ordination difficulties could cope. I think it is superb that there is support and advice readily available to us wheelchair users, but there seemed to be a niche in the market for 'how to bond with your baby when you can't pick up/play with/breastfeed...'

The reassurance offered by the few mothers with Friedreich's Ataxia that I managed to contact led to unsure sighs of relief. The reality of the matter is that you never know until you try. The fears are never going to go away, no matter how many people reassure you, no matter how many articles like this you read. All you need to know is that the fears will subside. If you're gutsy enough to get pregnant in the first place, then you'll find a way.

Can do

It is not surprising to learn, therefore, that the problems I encountered weren't so absolute. I discovered I could, in my own way, play with my daughter. I could even breastfeed (despite the heart failure) and I am beginning now, 13 months on, to be able to just about pick her up by myself.

One thing that has helped significantly is a raised cot made by a company called Cotswold Cots. My occupational therapist helped me to obtain funding for this item. At first, a huge, cell-like, wooden frame dominating my daughter's innocent nursery was somewhat disconcerting, but having a small playpen perched just above your knees is pure luxury for any disabled parent.

This 'godsend' has provided me with a place to play with my child, without relying on an accidental tumble to the floor! It's also a place I know my daughter is safe and my unsteady hands aren't solely relied upon. It seems logical for baby to be at the same level as everyone else. My daughter, for one, absolutely loves being in her cot and, if I may boast, having some 'Mummy time!'


My lack of co-ordination can be dangerous, which forces day-to-day tasks with my daughter to be 'supervised'. One of my biggest hurdles, therefore, that I continue to allow to interrupt maternal bonds, is jealousy. It may just be me, of course, but I suspect it happens to the best of us, just as working mums get jealous of their nannies bonding with their babies, doing the job that they're, supposedly, meant to be doing.

Having to call someone else's name when you want your child on your knee is heartbreaking, having someone else telling you that your child's nappy needs changing is infuriating, and seeing your child with outstretched arms, aimed at someone you actually pay to intrude on your life, is soul-destroying. However, I've found that as time goes on these feelings seem to disintegrate and new, but perhaps less emotionally grinding, problems arise to replace them.

I have found the 'choosing of the carer' part of the process to be the most important. Of course, there is no perfect carer/helper/mother's help, whichever term you prefer to use, but you can get pretty close if you interview enough people and take your time about it.


For me, boundaries are both the most important and difficult thing to maintain. Being able to tell your carer that they're doing something wrong without hurting their feelings - separating you as a person, you as a parent and you as an employer - is difficult to do in your own personal space that is your home. Of course, you don't want to create an icy relationship where orders are flung robotically from room to room and baby grows up seeing the carer as their personal slave!

However, the opposite kind of relationship also presents no favours. During my pregnancy and when my daughter was in her early months, I had a carer with whom I'd made exceptionally good friends. As soon as that connection was formed, those common interests discovered, the boundaries rapidly dispersed. Asking someone who is effectively being paid to be your friend, a bitter pill to swallow as it is, not to inflict their own theories on child-rearing is not easy.

When my carer left, for reasons concerning her own career prospects, I was determined that her replacement would seep practicality and kindness, be marginally boring (so we wouldn't become too friendly!), and have a non-obsessive, mild interest in babies. Several disheartening interviews later, I found her.

Her English was developing as a second language and so allowed for boundaries to be put in place. Her lack of true understanding of my situation and of my daughter's situation provided the distance I had been seeking. It offered me a refreshing dose of independence where I felt in control as a mother for the first time.

Over time, and as her language has improved, her understanding of our lives has of course evolved, but boundaries are so much easier to maintain when they've been there from the start. Her interest in my daughter has become more of a feature, but as my daughter gets older and knows me more, I am beginning to make peace with the fact that she does indeed love me, and knows I'm her mother.

Cotswold Cots is a small company manufacturing bespoke cots, beds and playpens for disabled parents and/or disabled children (with occupational therapist input). Prices start from about £800. Tel: 01993 842885


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