Friday, 1 February 2013

I hate Cystic Fibrosis

  Sometimes it feels as if CF rules our lives. We know Pup had it when we took him on, we studied up on it, we knew there was a big risk that his life would be one of struggle and illness. But we hoped. And he is well. He is clear of chronic lung infections. He doesn't need dozens of nebulizers,  inhalers, antibiotics (oral and intravenous), steroids etc every day like many kids with CF. He doesn't have a permanant feeding tube or ports for IV access. He is rarely in hospital. He isn't awake all night coughing. He just about manages to put enough weight on to keep the Doctors happy.

  But it can be the little things that get to you after a while. Making sure he doesn't run out of his medication. Every week we are ordering, and collecting.  Ensuring he eats. Not being able to eat out on impulse because we haven't got his Creon with us(digestive enzymes which he needs with every meal). Fitting in his physio, which of course he resents having to do. Managing his diet which needs to be high in calories, salt and fat, without giving the rest of us too much of either (and I could do with dropping a few pounds anyway!). Dealing with the chronic stomach pain and gastric reflux he lives with all the time; which wear him down. Being unable to work longer hours because of his needs. I don't resent these things. They are part of the job we took on when we took Pup. In fact in some ways it probably helps because they have made us more organised - regular mealtimes for example!

  What worries me often is the effect on Tigs. I really do not know how it is affecting him. He is naughty at mealtimes and I know that is a reaction to the extra attention Pup gets then. He understands in his head that Pup has special needs he doesn't have. He can explain to anyone who asks him how Pup is different. He never comments when Pup gets chocolate and crisps in his school lunch box and he doesn't. But what does he really think of his brother and all the extra demands his condition makes of the family? It is very hard for him when Pup is in hospital. How will he cope as he grows older, especially if Pup deteriorates? Will he become protective of Pup, especially as he gets bigger and stronger than him? Will he cope with hearing the teasing and negative comments that Pup has to live with at school? Tigs is a real mixture of very independant and capable, and very immature. I suspect in that he is like many adopted kids. He also has a temper. At the moment it's Mum and Dad he takes it out on.......   I can imagine  so many possible scenarios where he gets into big trouble because of Pup, because of his history, because of his character which is volatile to say the least.

  They will probably never happen. One moral of all this I suppose, is not to look too far ahead, take life a day at a time. Then I may worry less! And the other is be prepared for anything. I mean anything.  Adopted kids are little kegs of dynamite.


  1. I have just come across your blog and wanted to say hi. My cousins have CF -two out of three siblings. The oldest is 18 and has just started university. It is something that rules your life, I know (and your house - they have a bigger fridge for 3 kinds of milk!) and I do sympathise!

  2. Hi, good to hear from you! It must be so tough having two kids with CF, one is hard enough. Yes CF certainly dominates your kitchen, we have cupboards devoted to meds and unhealthy foods. I hope your cousins are keeping well.