When I joined the Butterfly Wishes Network as part of the Admin team I always knew that we would have difficult days ahead. Our goal, to provide free photo shoots to families who have a child with a life limiting illness, was never going to be quite as straightforward as it sounded when we first agreed on it.
We all went into this knowing that some of our photographers would experience working with families whose time was, to put it directly, running out. We also knew that we would get applications from families whose future couldn’t be clearly stated, who were very much walking into the unknown.
You can imagine then that we all took a deep breath when one of the first applications was for a child with Cystic Fibrosis. How ill would this child be? Would they meet our criteria? Would we be opening the floodgates to the thousands of other children in the UK with CF?
So we looked at the application and would you believe it they lived just a mile or two from me. I grew up with a mother who had been diagnosed with Multiple Sclerosis during her pregnancy with me, I tell you this because when you have someone in your family with a chronic illness, you tend to meet other people with chronic illness. So in my lifetime I have come across quite a few cases of Cystic Fibrosis. It didn’t really matter to me what stage this applicant was at. I was happy to photograph them. They met my own personal
criteria so to speak.
I met Millie on Saturday, Millie is beautiful. She is determined, she is funny and she knows exactly what she wants. I asked Millie’s Mum to tell us a bit about her and about having a child with CF.
My CF daughter
I have been asked to write a something about having a child with Cystic Fibrosis. How it affects us, how we cope. I initially wrote a “day in the life”. I read it and realised that I could not encompass all of the things that happen to us or how it has truly affected our lives. So I thought I'd just start writing and see what happens.
The first thing I should do is give a few hard facts about the condition*:
- it is a life-shortening genetic condition that slowly destroys the lungs and digestive system
- The faulty CF gene disrupts the activity of a protein that controls salt transport in the body’s cells.
This causes sticky mucus to build up around the internal organs, especially the lungs and digestive system, which damages the organs and attracts infections to the lungs.
- There are almost 10,000 people living with cystic fibrosis in the UK. Each week five babies are born with the condition.
- There is currently no cure for cystic fibrosis, and each week two lives are lost to the condition.
- Around 50% of those currently living with cystic fibrosis will not survive past forty.
- To avoid the risk of cross-infection, people with cystic fibrosis are advised not to mix with each other.
* Information from the Cystic Fibrosis Trust (www.cysticfibrosis.org.uk)
Now I want to get a bit more personal, give a true insight into living with the condition.
Our daughter was diagnosed through the heel-prick test. I remember the day vividly. I'd had a call from our Health Visitor asking if a couple of nurses could come over and see me as soon as possible about the results. They were on their way and would be with us in little over an hour. To this day I do not know why I didn't worry about that phone call, why I wasn't concerned about that or the impending visit. I sat with them with no expectation, no fear. When they told me, I held my 7 week old in my arms and cried. Then I asked what Cystic Fibrosis was.
The next few weeks are a blur of hospital visits, learning about diet, physiotherapy, exercise, the physical and mental effects... it was incredibly overwhelming, and absolutely terrifying. I can't remember how we got through those early months.
Today things are a lot easier – we have routines to ensure we get all of the medication correct and we keep a food and poop diary so we can accurately inform the doctors about how everything is going.
There are obviously still the psychological effects that we are dealing with. The days when all I can think about is the future and what it will bring. All of the questions: How long have we got? Will we one day have to bury our daughter? How much time will she have to spend in hospital? Will she eventually need a lung transplant? Will she be bullied at school for being different? How will she cope with the news of having Cystic Fibrosis? Will she be able to have children of her own? Will it cause issues in her relationships? How will she cope knowing she can't just go and have coffee with a fellow sufferer and have that sort of support?
I worry every day that she is breathless or wheezy. I tense up every time I hear someone coughing nearby. I worry about stagnant water and being near horses. I worry about being in large crowds (what if there is someone else here with Cystic Fibrosis?). I worry that I'm being too overprotective. I worry that I'm not being overprotective enough.
There are also the changes to our lives that we did not expect: We will not be having any more children. There is a 25% chance of us having another child with Cystic Fibrosis and we cannot risk our daughters health or put another child through what she has to go through. We will not be able to give our daughter a sibling, I will not be able to give my husband a son. I have taken time off of work to care for our daughter and this has caused financial strain and our different ways of dealing with the changes in our lives has brought even more challenges.
And yet, through all of this, my daughter shows me how to see the positive. She takes advantage of the high fat diet she needs to be on – making sure she gets plenty of cake and chocolate. She enjoys the many physical activities that I take her on to improve her lung function. She smiles and laughs at all the adventures we go on so she can get outside and enjoy the fresh air and try and improve her vitamin D levels. She soaks up all the attention she gets and she has helped me learn to cherish every day I get to spend with her.
I don't really know how to end this, so maybe I should end with how I hope you've read this: a reminder that life is short, that you should appreciate what you have and that with every cloud there are silver linings.
For those of you who use twitter you’ll be familiar with the term hashtag. A hashtag is one of these symbols: # and in the twitter world it denotes something that you want to get trending. Something that you want others to be talking about, tweeting about, writing about, The Butterfly Wishes Network has been using the hashtag #letsmakememories. I hope that for Millie’s family we’ve done just that. I hope we gave them an enjoyable experience. We captured their laughter, kisses, cuddles, play and smiles.
Would we be able to cope if every child with CF stepped forward and wanted to work with us? No we wouldn’t. But we would try. We will always have to make decisions about who we can help, we will have to prioritise. We will sometimes have to say no, either because a child doesn’t meet our criteria or because we don’t have an available photographer to serve them. Not being able to help everyone isn’t a reason not to help anyone, so we will take each case and look at them individually. That’s all we can do.
To the photographers reading this, especially those kind enough to have already offered their services to us I’d like to tell you something in particular. I was more nervous about Millie’s shoot than I have been for a long time when it comes to taking pictures. The weight of responsibility for getting this one right weighed heavy.
Photographing Millie and her family was an absolute pleasure. It was a truly enjoyable experience. Because being ill isn’t who you are, it’s just something you have. I couldn’t stop smiling on the way home from their shoot. It felt really good just to give.