Introducing Alison Smith – founder of Cystic Fibrosis Mummies
My name is Alison. I am 38, I am married to Adam and we live in Northamptonshire, Uk, in a house we own. We have a daughter, Harriet, who is 12 years old and we have two cocker spaniels and a cat. Very normal. Very ‘average’. If you were to peek inside our house on a morning you will see the usual chaos of finding a missing school shoe, while I try to make breakfast and not trip over the dogs. All very normal.
If you look extra closely, however, you will see a few tell-tale signs of something ‘different’ here. On the worktop next to the butter is a medicine pot with Creon in. You’ll see an open cupboard which is brimming with all sorts of tablets, inhalers, various insulin pens and needles. There is a physio device on the other counter too. My family is different, because I have cystic fibrosis.
For us we are very ‘normal’. This is life as we know it! Mayhem – which I am sure resonates with every parent in the world – normal with or without health implications.
Planning to start a family
The idea of having a family when I was younger seemed distant – I didn’t know if it was something I would want, let alone be able to do, due to CF and the complications it brings. I didn’t know if I would be alive or well enough to even meet my future husband. As it was, I grew into an adult and met Adam. It was only then that I knew I wanted to have a family, to have that ‘normal’ life.
I had to think though, realistically, is it something my health could manage – both pregnancy, parenting and also longevity? All factors that needed good consideration. My health was fairly stable, with a few admissions a year to hospital for IVs, and we decided to go for it. Long story short, due to CF, it took five years and IVF to get our baby!
Raising a caring and resilient child
Life carries on as ‘normal’ for us. When I was unwell, I had a great support network of family and close friends who would step in and give me time to rest. Harriet has grown up knowing everything about CF in an age appropriate way. As a baby, she used my Creon containers as shakers, and later, she would give her dolly IVs. She grew up caring, resilient, empathetic and with such compassion for others. She doesn’t blink an eye when I say I can’t do something, and she will bring me my inhalers/Nebs/tablets without a second thought.
Having her grow up with a mother who is ‘sick’ hasn’t been detrimental to Harriet whatsoever. When I speak to other women with CF, that is what resonates the most, that our children are not hard done by – they are caring and compassionate, NORMAL children. I founded a group for CF mums on Facebook with a fellow CF mum as we wanted to support each other and others who needed it. There are now over 1,200 women worldwide in the group. Being a mother with CF has given us confidence to speak up for our children and, when our children themselves are unwell, we are the best advocates for them, and have the confidence to speak out and question.
Looking to the future
The world for people with CF is changing with the new medications on the market, something that everyone is so thankful for. I started Kaftrio in October and on a bike ride recently (something I’d never have been able to do before), Harriet said: “Well, Daddy coughed more than you on that bike ride!” What an achievement for my now stable lungs! Life is only going to get better and our normal life will be even better.
I’m very happy I chose to have a child with Adam. I was comforted to know if anything happened to me, Adam and Harriet would have each other to lean on, and that Harriet would have known the love of a mother and have some amazing memories alongside that. Hopefully now there are many more years ahead and I can think forward to seeing my daughter experience the world, meet someone and maybe begin her own family, with her dad AND me by her side. Just a normal girl going through life. That’s all women with CF want, time. Time to watch our families grow up.
This becomes more real with each and every break through that the CF community gets, new drugs, life changing research and hope for the future
CF Mummies is a private facebook group, but if you are a mother with CF and you would like to join please send Alison a message via her facebook profile: https://www.facebook.com/alison.w.smith.7