Elizabeth, Rufus and Dulcie

Name: Elizabeth

Child: Rufus, 2 years 7 months and Dulcie, 7 months

Location: Northenden

Expectations of Motherhood: I so desperately wanted to be a mother, and I suppose I imagined all the things that other mothers seemed to have - healthy, thriving children that gave them equal measures of joy and being pains in the bum. 

I never assumed I would have a disabled child, although something niggled at me during my pregnancy with Rufus, and there was an underlying level of worry. I would have probably incorrectly assumed that life with a disabled child was something unimaginably difficult and scary. It is, but it also brings a level of joy that I'd have assumed wasn't possible. Sheer excitement in the minutae of life (he's smiled! he's picked up a toy and assessed it properly!) and a strength that I didn't know I had.

Reality of Motherhood: Nobody can prepare you for the shock of your first child. How utterly upside down your life becomes. Add to that Rufus was premature, very, very ill and spent his first four months in hospital whilst we were being told it was unlikely he would ever make it home - well, the 'reality' was so distant from what I expected. To not be able to hold your child and nourish them for their formative weeks (a gap that has been healed immeasurably by having Dulcie) was so incredibly difficult and yet somehow there were moments of calm, laughter and real happiness when Rufus was in hospital.

Now with two so young, I wondered what I stressed about with one! And in lots of ways Dulcie is really easy - she isn't complex; she's completely unmedicalised our lives. But by god, she brings a whole new set of things; being mobile quite early and demanding my attention. Rufus is easy by comparison now!

Taking your children home for the first time: After he came home, I was bound to the house by fear. He was still so fragile and tiny. It was pretty isolating. But once we did start reaching out, going to baby groups, my fears started to disappear. Now the shame with Dulcie is that I don't have the time or energy to go to groups, but watching the two of them together at home, interacting in their own little way, is really rewarding.

Bringing Dulcie home after a natural labour (Rufus was an emergency c-section), with her breastfeeding so easily - I have been known to describe (possibly a bit dramatically!) as an elastoplast on my heart. My pregnancy with her had some very scary moments, and they induced her two weeks' early as she looked as though she wasn't growing as well. But the minute she was born I knew she was ok. There is this mystical 'mother's instinct', but I really believe in it. 

The best/worst advice: 

The best: "This too shall pass"

I love this - moments of pain, moments of glory. Everything is a stage. It's good to remember that hard things will come to a conclusion somehow, and also not to rest on your laurels and embrace the glorious days as they are far too short.

The worst: The multitude of friendly opinions about what you should do based around what worked for someone else. Especially contentious issues like feeding, weaning and sleeping. Which is all newborns do I suppose! But especially with breastfeeding: "they have to go to you like this", "try holding them this way", "you have to get a good latch". Arrgggghhh! I literally needed to clear my head of all the 'should be doings' and let Dulcie take the lead trusting that she knew what she wanted - especially difficult after a child with an extreme oral aversion.

The hardest parts of being a mother: All the wiping - bums, faces, hands, highchairs, your face, your clothes. There's a level of stickiness you become at one with. Also feeling like you're not allowed to admit to being bored. I love my kids, but somedays it's just meal/feed/dress/whinge repeat all day.

The best parts of being a mother: With Rufus, it's that fleeting bit of eye contact. And he is a happy, happy soul. He has a laugh that I promise you makes grown men smile. From 100 feet away. And it's being his advocate - I feel proud to be his Mum.

With Dulcie, it's everything as it's supposed to be, but I also now know not to sweat the small stuff. And to believe in myself. Being a mother has really empowered me, more than my career ever did.

Has becoming a mother changed you? Yes, immeasurably. In so many ways. But sometimes I like to remember who I was before all this, because I get asked so often, 'Are you Mum?', especially with hospital visits with Rufus. And I think yes, but I also have other things I can do!

Hopes for your family: That we deal with tomorrow and all it's unknowns with the same strength and reasoning as today. Rufus' condition is classed as 'life limited and life threatened'. I think of that in a detached way, but I hope still with enough clarity to access all the things he needs for the best quality of life whilst also not sidelining Dulcie. I hope at some point I feel grown up enough for all of this!

What advice would you offer to new and expectant mums: Trust in your feelings and instincts, but don't drive yourself crazy by trying to 'fix' everything or believing that every little worry will happen because you've thought it!

And skim read any books. Your babies will let you know when you're getting it right by them. Expect this to only be 50% of the time if you're lucky!

And if the unexpected happens, and you end up in an unknown place, reach out and ask for help. Shy bairns get nowt.

SWAN UK, Syndrome Without A Name have been a lifesaver for us. http://www.undiagnosed.org.uk

Elizabeth writes about her adventures at http://areyoukiddingney.wordpress.com