We all do this, don't we? Use one thing in our lives to distract from the other, scarier shit. The papers always like to talk about women 'having it all'. Either not being able to, or some celebrity showing off that they can and do. I work part time, in Publishing, which I love. I enjoy the work, and really enjoy being with the great people I work with. It is my escape. Since becoming a Mum, I dropped to three days a week, but this year I've gone up to four days (for various reasons). And they are long old days.... I am up before 6am doing physio, nebulisers, meds, and because I do the morning school run, I'm not usually home until around 7pm, for bedtimes. I know a lot of people have longer days - but juggling it all.... it is a struggle sometimes. I either feel like I'm doing well at work, or home, but rarely both. Torn is the best expression of how I feel, and I am guessing how best most working mothers would describe themselves. You either have a great meeting at work, only to realise after that you had baby snot all over your shirt the whole time, or a great morning reading with the kids, only to get to work and realise you have their library book, and they have your tomato salad.
By working four days a week, I can usually manage all the hospital appointments by either swapping the days I work, or taking annual leave. Next week he is going in twice, so it's a bit of both. I can't miss his appointments - my coping mechanisms involve me knowing as much as I can about him and his CF, the unknown terrifies me, and not knowing exactly what his doctors have said would drive me crazy. On occasions when we have stayed in and I miss the morning doctors rounds while in the shower, Dans hazy reports usually have me asking all day 'but how did he say this' or 'was she smiling when she said that' driving him crazy too.
I will work for as long as I can keep up this juggling act, and if and when I can't anymore, I'll give it up - which in itself will create a new juggling act with both money and maybe my sanity.
We have enjoyed a week of laughter away in Wales with fab friends and his cough is much improved, but not altogether gone. It's been a fantastic week of swimming, surfing, beach action (dad's new nick name; Dan-Van-Dam after his expertise at beach dam building), Cipro sunburn (despite all the sunblock and very little actual sun) and non stop playing with his best friends. Really hoping all this exercise, salt air and Cipro have helped his lung function improve for when we go in on Tuesday, otherwise he'll need more treatment.
So annoyed at myself. I managed to pack everything except his sodium chloride, which meant we had nebuliser drugs, but nothing to make them up with. To have a doctor prescribe him this involved Dan going to a pharmacy, an A&E department, being turned away, but with an out of hours GP's number, and finally a second visit to the pharmacy. In 9 years it's only the second time I've ever forgotten anything, and what a polava it causes, especially frustrating when it is essentially some SALT WATER!
Keeping his weight up is an ongoing issue - in CF good weight and lung function are known to be positively correlated, and his drop in both lately is a concern. He needs to consume around 50% more calories than you would normally at his age just to keep up, so when infections affect his appetite, the weight falls off him very quickly. His appetite is still uncharacteristically low (for him anyway, he usually eats like a horse on steroids). Big thanks to Mrs F for filling him up with yummy pancakes and homemade hot chocolates on holiday.
Two new things recently of concern;
1; he was spotted throwing away some tablets (his least favourite) when camping. What else might we have missed? Back to supervising everything again.
2; he showed awareness and concern for the numbers he was reaching on his tests at clinic. This is good I guess, but I'm just sad that he has to, and to know that he does worry about things.
So on one hand he is testing his boundaries and cutting corners, but at the same time, he is worried about his health. How to get that balance between making him realise that his treatments are very important without worrying him is really hard.
We watched 'Kids with cameras' on TV last week, which featured a kid with CF. He was quite unwell with his CF (30% lung function) and both the sound of his cough, and his rounded shoulder posture were sadly familiar thing to us. On one hand I am so uber positive about our future with CF, but on the other, I worry that maybe I am being naive - is my head in the clouds or the sand?
Goodnight all, hope you have had a great summer too x
*I should add, I could not cope without the amazing support I have from my family, in particular my mum and stepdad, who have always had the kids while I work, and my lovely husband who works much harder than I do. Love you D.V.D x
