A kick up the arse

rachael roberts - 11 Feb 17

Or to be more precise: ‘the benefits of giving oneself a little kick up the arse’.

Firstly, I need to say a few thank yous. Last year I wrote an about my son’s diagnosis of Cystic Fibrosis on this website.  Ella was one of several people who got in touch after reading the post. She has a young daughter with CF and we arranged to meet within days of making contact. We didn’t stop talking when we met and I felt I’d met a kindred spirit.  We decided we’d be very happy to talk to new parents with a diagnosis and share our (hopefully positive, but also very honest) experiences.

The lovely Rosie from wufdesign heard about what we were doing and very kindly designed our website, cfbaby.co.uk, gratis (thank you, Rosie!). Through it we’ve been lucky enough to chat with some great parents who have found themselves in a similar situation to us and hopefully lend a supportive, and occasionally useful, ear.

So thank you ‘selfishmother’ for starting the ball rolling and thank you to all the parents who’ve been in touch with us.

Bafta acceptance speech over.

This is not a post about resolutions because –

A: it’s February

B: Resolutions are generally about self-improvement which, let’s be honest, is really dull and should be kept to yourself

C: I’m an ex-smoker and ex-smokers never have to make another resolution. It’s the law. Yes, technically, I gave up in the middle of summer when I found out I was pregnant (surprise!) but it still counts, ok?

So not a resolution, but the first few weeks of 2017 have made me stop and reassess my behaviour a little. I’ve come to the conclusion that, while I’m all for us being kind to ourselves and giving ourselves a break, often a swift kick up the arse (figuratively speaking), and a reminder of just how lucky we are, can be exactly what we need. A little perspective you might call it.

Four days into  2017 and my son, Joe, was admitted to hospital for elective IV antibiotics. Joe’s CF means that he is admitted for a fortnight at least every 3-4 months. As long as he is well during his treatment, we are allowed out of hospital for a large part of the day between his medications. It’s pretty much a case of spending the night there and getting out as soon as possible in the morning after his morning drugs. Both my partner and I can work around overnight stays so we try not to do more than 3 nights on the trot.

However, there’s no way around the fact that it’s tedious being confined in a small room with two small children (his baby sister stops with us as well). Neither settle well there at night. Tantrums seem so much louder on a hospital ward. My shoddy mothering skills seem so much shoddier when super competent nurses are their to witness them. Plus, on this admission, the girl, who is a sleep-through-the-nighter at home (don’t ask me for tips – I have no idea how that happened), decided that between 2am – 4am I was required to wheel her up and down the corridor in her pushchair or she would wail – loudly.

Oh, how tired and sorry for myself I was feeling the first morning. I abandoned my children with the first nurse crazy enough to ask if I needed anything, and headed off to the ‘parents’ room’ to drown my sorrows in cups of tea.

I started chatting to the one other parent in there. Her son was 18 months old and, just like Joe, his bowel had been blocked when he was born. A blocked bowel is a common symptom of CF in babies and the doctors at the time were so convinced that her son had it, when the tests came back negative, they kept retesting him.

Her son’s condition was eventually diagnosed as  Hirschsprung disease. A very rare condition where sections of the bowel can not work because of missing nerves. These sections normally have to be removed.

Like Joe, her son was operated on when he was hours old, had a section of bowel removed,  and had a stoma fitted so he would poo into a bag. Like Joe, when her son was a few months older an attempt was made to reconnect the bowel. Unfortunately for her son this had failed, as had successive attempts. Her son would be using a bag for the rest of his life. I remembered how terrified I’d been that Joe’s surgery wouldn’t work  and reminded myself how incredibly lucky we were that it had.

This exhausted looking woman told she me that her son had been in hospital for the last 12 weeks.   Various operations had left him with very little bowel and what remained  was not functioning well. If the remaining section could not function adequately, her son would spend his life being fed by a tube. She had not been able to leave the hospital for these 12 weeks and had no idea how much longer they would be there for. She had a couple of breaks each day when a nurse would watch her son. She had a 5 year old at home who her mum was looking after. She felt incredibly guilty that she had missed christmas with her other child. As I listened to her I felt so ashamed that I had been feeling so sorry for myself 20 minutes earlier.

Just as I was leaving to rescue the nurse from my kids, she  commented: “I see what other people go through in here and I realise I don’t have it so bad”. I often feel the same but wondered how a woman in her position could possibly say that – I’m not sure I could.

Joe’s IVs can make him sick for the first couple of days. Sure enough, on the trip back home the next day to swap hospital duty with his Dad, Joe vomited spectacularly. Instead of spending my evening  on the sofa with a large glass of wine, I spent it dismantling a car seat that a NASA engineer would have struggled with.. Feeling sorry for myself? You betcha. Then I started thinking about that mum I’d met. I started thinking how she’d have loved to have a evening at home – vomit or no vomit. How she would have loved to be able to bring her son home for a few hours, vomit or no vomit.

I gave myself a quick kick up the arse and without sounding too Doris Day about it (because honestly, I’m not – well not unless Doris wore too much black and was quite sweary), reminded myself how goddamn lucky I am.

Joe has been out of hospital for a few weeks now and of course normal service has resumed.  I think generally I’m a pretty positive person but I’m partial to doing a (head in hands) ‘why me, why me!’

A few days ago I heard some news that made me stop in my tracks again. I learned a woman I met briefly on a charity trek  6 years ago, was killed by a car. She was in her early 30’s and leaves behind a baby daughter a similar age to mine. I can’t stop thinking about what a random and tragic waste.

The other night my daughter wouldn’t settle, she’s full of cold and new teeth. Just as I started to feel a little aggrieved that I didn’t have my evening to myself,  I thought about this woman, I thought how incredibly lucky I was to be there with my angry little snotbag. How privileged I was to spend an hour stroking her back trying to get her to sleep. How valuable all these little moments are, and yes, I gave myself a little kick up the arse.

So that will be my non-resolution. Just a little kick now and again to remind myself that all is well, or at least not that bad, because, to be honest, it probably isn’t. And if that fails? A fucking great slap round the chops should do it (see, Doris would NEVER say that).

rachael roberts

Florist, business owner, mum to two, regular runner, frequent drinker. Swapped the bright (ish) lights of London in 2013 ,after the birth of my son, for a couple of acres in Scotland - chickens, ducks, veggie patch, more babies - all a bit "Good Life" with more internet shopping... www.cfbaby.co.uk

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