The Facebook Page, the Six-Year-Old, and the Daily Cocktail
By Kim Hall
“Have you done your meds?” is a phrase that is repeated several times in my house during the course of a morning, and accompanied by various threats and scandalous bribes – with a frankly highly dubious and occasionally costly success rate. The inevitable exasperating conversation goes something like this;
“Have you done your meds yet?”
“Have you done your meds yet?”
“I need the toilet.”
“You don’t need the toilet.”
“I do, I do.”
“Go on then, be quick…”
Five minutes later, said child is found in the doorway of the lounge watching TV – having completely failed to make it to the toilet, which was ‘desperately urgent’ in the preceding few minutes.
And so it goes, on a daily basis. At around 7.45am you can sense the rising exasperation in the house and the increasing tension, as the meds-taking task reaches a certain urgency!
It must be said though that if I was faced with a porcelain chicken egg-cup filled with at least eight tablets of various colours, shapes, and sizes, sat on a tray with a hideous-tasting gritty liquid, placed neatly together with another aspartame-laced opaque sticky liquid goo, a brown inhaler, and nebuliser machine that has a DNA-altering mist to be inhaled, I don’t think I’d be too happy either. This little cocktail doesn’t even include the other roughly 23 tablets that have to be taken throughout the day with every morsel of food that contains fat. Roughly one tablet for every three grams of fat, in fact.
This is my daughter Sophie and this is a fraction of Sophie’s world. Sophie has Cystic Fibrosis, which, if you have no firsthand experience, you probably haven’t heard of. I know I hadn’t. I had a vague notion that it may involve coughing up sputum and being in a wheelchair…or was that cerebral palsy I was thinking of? In fact, lots of people muddle the two conditions up. The spitting up – yes indeed, but the wheelchair is not a day-to-day worry that we have to deal with, right now.
Sophie was diagnosed at four weeks on 30th December 2009, when an apparently eager Health Visitor kindly left a ‘request to contact’ card at our front door. As it turns out, the Health Visitor was a children’s community nurse coming personally to deliver the news that an abnormality had been found on our beautiful baby daughter’s heel prick test. 24 hours later, after an appointment at Kings College hospital, and further tests, we were sent home with a carrier bag of medication, a diagnosis of incurable Cystic Fibrosis, a brand new routine of meds and physiotherapy, and our family’s hopes and dreams for the future shattered.
The gene affected by Cystic Fibrosis controls the movement of salt and water in and out of cells. People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system, and other organs, causing a wide range of challenging symptoms affecting the entire body*.
The implications for us as protective parents getting it wrong are devastating. We have to spend ages each day beating Sophie’s lungs, or practicing breathing exercises – huffing, holding, and coughing to keep them as clear as we can within our power. We have to protect her from bacteria entering her young and vulnerable lungs, developing its biofilm, and then becoming resistant to antibiotics and treatment. When left untreated, these bacteria will colonise and slowly destroy lung function, resulting in the need for a lung transplant (not always available or successful) – or the patient suffers complete suffocation and death. Environmentally, we have to be aware of places that may harbour these bacteria; and steer well clear of them. I’m sure people think we are paranoid, neurotic parents, but when you are given the gift of a child, you must take care of it. There is a greater force trying to destroy our future but we fight back, as a family, to protect Sophie as much as is within our power. If that means avoiding some activities, then we all avoid them.
I have written so far only about the lung issues; I haven’t touched upon the other CF symptoms that are equally problematic and impactful. Oh, how I wish there wasn’t so much more…
Being a family ‘with challenges’ is a dark, lonely, existence; especially in those early diagnosis days. CF is so little known and so complex. Some parents don’t understand how scary it is to know a decision that you make now could potentially impact your child for the rest of her life. Yes, it sounds dramatic, but you know what? It really is…for Sophie, and for us, her family. So if you see us, and we decline to come out to play in a paddling pool with two-day-old water, please don’t be offended! If you have a cough or chest infection and we steer clear, it’s because it has long-term implications – not because we don’t care! If you wonder why we aren’t keen on animal petting or being close to animal hay and straw, or why I won’t let Sophie plant seeds or play mud pies: it’s not dangerous to you but it is to Sophie.
Since we have had CF in our lives, we have learnt so much about biology and cellular activity, met some amazing people in the CF community, learnt who our true friends are, and discovered that in laboratories all over the world there are amazing people desperately searching for cures for this hideous disease. It has also helped enormously that I have ‘met’ new friends in a CF parents closed Facebook group, which has quite literally saved me and given an outlet for other such parents who need somewhere to go to
ask a question/rant/cry/commiserate/fundraise/support/help/grieve or discuss complementary therapies when one of our community doesn’t make it – and so much more. Most of the people I haven’t met because we have cross-infection risks, but, despite this, the parents group has been a lifeline to me that I have grasped hold of to reel myself back to reality.
We, as a family, felt the diagnosis repercussions for a long time and we still nowadays have dark moments when we revisit the severity of Sophie’s situation and the unknown future that she faces; but we have learned over time to accept and live with our situation and make the most of it. The effort that goes on behind closed doors is all worth it…every single decision we make is somehow entwined around CF, but when I experience moments like seeing Sophie relentlessly flipping over and over practicing her cartwheels and bridge positions in preparation for an upcoming gymnastics competition, all with a massive smile on her face…having an awesome time with life… I know that I will do my damnedest to stop CF winning against my child.
*taken from www.CysticFibrosis.org.uk
pics: Kim Hall