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Parent or Umpire?

Lizzygb Community member Posts: 12 Courageous

Lizzy Gwilliam is a 30 year-old mum-of-three based in Devon with her partner Tom, a video editor. She suffers with a rare nerve disease called Charcot-Marie-Tooth (CMT) which means she can no longer stand or walk, and has no muscle left in her lower limbs. She is a proud breastfeeder and encourages other mums to try it and to perservere through the toughest parts. Lizzy writes a blog at and can also be found on Twitter @shopgirlygm and YouTube under Elizabeth - where she has begun documenting parts of her life.

Sometimes for me, parenting feels a bit like I'm the umpire at a really long tennis match - except instead of 2 tennis players, there are 3 household monsters, and instead of a ball and rackets, there are My Little Pony figures and spoons covered in baked-bean juice.  I do a lot of [small] people management from the comfort of my own chair.

I don't think any parents would say their job is easy though, and if they do then they are probably lying. Parenting from a wheelchair is just not as typical. There aren't the same amount of people giving advice like "you should try the pickup/put down method of soothing your baby to sleep each night", how can I do that if I can't even stand up myself. 

Of course, my partner is able to do most of that, and he still goes to work full-time the morning after a bad night. But I want to be an equal parent to him. He shouldn't have to do all of the most difficult stuff. This is one of the main reasons I chose to breastfeed my children in the first place. 

woman breastfeeding child

Before I'd even given birth to my first daughter I knew as soon as she was born that it would be the end of me being able to do everything to meet her needs. She suddenly became separate from my capabilities and I had to battle with myself that I was still her mum even if people didn't realise I was 'Mummy' straight away, even if I couldn't get her dressed, bathe her myself or get up and down from the floor to play with her. Bottle feeding would have been almost impossible for me - I'd need two hands just to hold the bottle and then I wouldn't be able to support my baby. 

So given the health benefits of breastfeeding and the fact it must be quicker than sterilising and preparing bottles (something else I wouldn't be able to do), I decided I'd be the one who could give my daughter all her feeds - day or night. I think that decision alone gave me a sense of real identity around being a mum to my babies and certainly helped me bond with them. Of course, I would look after them any other way I could manage, but nobody else could or needed to feed them, or quickly comfort them by the power of the breast when nothing else worked. I'm pleased and proud that I could do that for them.

family sat around a table

Parenting from a wheelchair now that I've been doing it for 6.5 years, is a bit more exercised. I've learnt how to speak to my children firmly when I need them to clear up their toys so I can actually wheel myself around the room. They have to listen to me so I can look after them. Of course, it doesn't always work and when they really want to run off they will, like any other wilful child.

But between my partner and I, even though he is much more capable physically than I am, I think we make a good team. I love that he is the Dad that all kids deserve - he will fly them around the room on imaginary broomsticks, pretend to be a massive dinosaur chasing them around the park and get up when they fall out of bed. I'd like to think we have the parenting balance right between us, although I'll always wish I was able to do more.

Tell us about your parenting experience.  Does your impairment mean you have to do things differently? 


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Hi @Elizabeth Siân Gwilliam  thanks so much for this great post - were there any tips you could give about breastfeeding as a disabled mother? Or any support groups you could recommend?
    Senior online community officer
  • fr0zenrose
    fr0zenrose Community member Posts: 2 Listener
    I realised I had to think outside the box when my daughter was born. I was told I couldn't conceive so she was a miracle baby as far as I was concerned.  I had worked in childcare and nearly finished an nneb before becoming too ill and in a chair full time. However in all those situations others were there to take over physically when I couldn't manage. I slowly accepted that asking social services for help was not going to result in me being separated from my daughter and managed to get some great help. They helped increase care plans to include bathing feeding and helping with my daughter, a baby Dan play pen to create a safe space when needed for short times. We used a bedside cot as at night I could slide her to me and during day use it as a change mat as chair could get underneath it. Things like putting a bean bag on a blanket and dragging her around the house from my chair was necessary as I couldn't pick her up always. I used beanbags to breastfeed whilst I could - only managed 2 weeks and don't feel bad about it if u cannot do it. I used tracksuit type outfits as well not baby grows much to many other able parents disapproval - I did find some baby vests with Velcro so she wore those under tracksuits as much easier to change her for me. A gadget called easyfeet was a little neoprene strap that fitted over the feet of baby and enabled u to change their nappies one handed, I taught my daughter to roll as soon as old enough to do so. As she got older I was seen as quite strict but that was because if she didn't listen the consequences could be awful when u cannot race after to catch them. My daughter is full of empathy and has given me so much joy, we have to think outside the box and ignore those that say we r doing it wrong or those that say I shouldn't have kids as it is unfair upon them, my mother wasn't disabled but she wasn't maternal either, at least my daughter is cared for and knows she is truly loved 
  • Barrylad1957
    Barrylad1957 Community member Posts: 99 Courageous
    @Elizabeth Siân Gwilliam, you are a fantastic example of Motherhood, an example to others, and an inspiration to us all. That you are doing this, while suffering with your own burgeoning health problems, is awesome; it certainly puts the day to day niggles that I perceive as "problems" into sharp perspective. A Mother should be a lantern in the dark, and you definitely are. May you always be.
  • Lizzygb
    Lizzygb Community member Posts: 12 Courageous
    Thank you everyone for your kind words!
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