Just The One Journal

2 days overdue publishing this post but last week was abit of a mess, Henry was ill, I was ill and we had a snivvly time cuddling up at home.. roll on next week to be the end of drizzly January and bring some nicer weather..so here is my post about our clinic the week before: Last monday was Henry's first CF Clinic of 2018. For the first year of his life we used to have to go to clinic every 2-3 weeks at the Brompton (and that's not including when he might get ill in between clinic's and i'd have to take him in for more cough swabs and checks) and now its every 2 months! That first year was awful, no rush of new baby excitement, it felt like it was all about henry's CF and that it would be like this forever...but it does get better, and my hope for any parents who have had a baby with a CF diagnosis recently is for them to read this and feel abit more positive, that the first year is particularly difficullt, even just having a baby for the first time, it might

I am again feeling overwhelmed. The week has gone well but it is a reminder of how quickly things can feel unbearable and unmanageable. Monday was Henry's CF Clinic which went really well (another blog post up tomorrow about it), I met the head Dr who was really informative and I came away feeling very positive about Henry's future and his health at the moment and that I am managing his physio and CF well.          I had two days in my hometown of Windsor which was an amazing break but sparked off my thoughts on wether I have made the right decisions in life recently. It reminded me how much I enjoy being in a town despite my lifelong feelings of being drawn to live near the sea. I enjoy a town where there are lots of activies and classes for me and Henry, larger facilities, restaurants, jobs that pay well and regular transport via buses and trains but also want the fresh air and sea. I feel very stretched between what I would prefer (Windsor) and the most important th

We are off to CF Clinic in Exeter tomorrow and I don't want to go. I have recently been feeling much confusion and frustration towards the nurses/doctors/physios/psychologists in the NHS and CF has been weighing heavily on my mind all week. Henry's nails have been starting to break midway up his nail. I thought it was an accident, him pulling on toys too hard or something falling on his hands but the nursery commented on it being unusual and was it related to CF? I couldn't answer. I hadn't even thought it may be a CF issue and no-one from the hospitals has told me anything relating to this. A quick google and suprise suprise it is indeed a issue that CF people can have as they may have thinner nails and also they may get clubbing in their fingers as they get older. Not good news and upsetting. When I am having a good week and things seem to be going well, CF seems to knock me back and remind me of what a shock it is for my only child to have it. It reminds me of his

 " I believe one of the most valuable gifts you can give yourself is Time. Time to be fully present" Recently my days have been overshadowed by difficult contact with Henry's father (my soon to-be ex-husband) and thoughts of the unwelcome scenarios he may throw my way. It is hard to maintain detachment and politeness when being deeply hurt and upset is the feeling that keep hitting me when such little thought is given to the position he has put myself and his son in. But trying to combat these thoughts, for the first week of January I put some positive actions into place // 1.  I attended a 2 hour Yoga Workshop on Reflection and Intention. I had been recommeded going back to yoga by a local Reiki therapist who was wonderful in helping me relax and recommend life changes to help combat stress and to start with yoga (which i LOVE and have been doing for years but just hadn't found the time or the good teachers in cornwall. 2.  I enrolled Henry on 3 mornings a