James' health considering he has a life threatening illness is good! It's better than good! He's not cultured anything, had no hospital admissions, no infections, not even a bad cold! Yet the daily constant worry and mindfulness of CF and all the considerations including bacteria & hygeine (which would have a subsection of 1000's of worries), dietary requirements, salt, Physio, supps, and the learning of this desease is emotionally and physically exhausting.
The isolation itself is a killer. You can't be around another person with CF (yes there are siblings both with CF but this is far from ideal). Although there is amazing support from other mammas I struggle not having one on one catch ups and play dates with people that totally get it. CF mammas I would now call good friends yet have never met most of them face to face. I am a very social person. A social person with almost no family support. I'd love to jump on a train and visit my work mates - but are the sick, people coughing in the lifts or home many smokers will we have to walk pass? I'd love to go the shopping centres look at Xmas presents, buy a few things for the new house, but will people be coughing in air conditioning with no ventilation? Who touched the trolleys before me? And don't even start me on strangers who think it's ok to touch babies! All health risks for James. Sounds exhausting doesn't it!
Some people think myself and other CF parents are over the top and too cautious, but when your child has a life expectancy of 38 and the mean CF age is in the 20's what would you do to keep your babes little lungs are healthy as possible?
My gorgeous friends who's children do not have CF or other diversities can't ever grasp the complexity and exhaustion being a CF parent brings. Although their friendship and considerations for James health is beyond appreciative.
With my CF mamma friends I feel guilty that James 'isn't that sick' (no he does not have a milder form just lucky at this point). He's doing so much better than most and how can I possibly understand the constant complications? So I feel bad and unworthy of the support as it could be so much worse.
So that's me. My first blog entry. As I sit here feeling panicked listening to a wet cough praying and manifesting its viral and not bacterial. Feeling proud for all I've achieved as James' Mum but questioning am I doing enough?
1. You have written this BEAUTIFULLY and HONESTLY.
ReplyDelete2. You ARE doing enough. I know I say this as a person who has had little to do with CF until I met you. However, seeing what you do (putting 1000000000% into EVERYTHING and researching new things here and there and APPLYING IT) YOU ARE, ARE, ARE most DEFINITELY doing enough.
3. I hate that I will never fully understand the complexities of what you are going through. I do , however, admire how you have taken this in your stride (from what I see, I know you've had and will have your darker days) and taken the battle of CF head on.
4. I too am thankful that you have a community of online CF mums who support you the way they do. You have embraced a new way of socialising.
Love you all. xxx
Thanks JemJem xx my first comment!!! Lol
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