Saturday, 19 January 2013

Finding Our Never Never Land

"Sorry, Your Child Has Cystic Fibrosis".
Your life was sailing along, and then with one little sentence from a doctor.... It must seem to all come crashing down, like the Kraken was released on your ship, your inner world is suddenly in chaos. How do we cope???




A couple of days ago I was talking with my mother about when I was first diagnosed with CF. Three doctors sat her down in a room to break the news to her. They told her what I had and that she could cry if she wanted... She didn't 'want to' cry because she didn't know what CF was. She simply asked,"will it shorten her life?". Yes. She said the doctors looked like were going to cry! They gave her a pamphlet, she asked if she could have some books to read all about it, they looked confused and fumbled around brought her some really thick medical books, so she read them. My mother doesn't cry easily! (I don't know what my father did when he was eventually told, I'll have to ask!) Mum is an objective thinker, analytical and sharp minded and has a passion for science! CF did not frighten her because of her understanding of how things work, it was just another thing. Thank goodness she was like this because I can tell you my father and I do not have the slightest natural interest in science! But my Dad has always supported her every step of the way...
Both my grand fathers were world war two veterans, being children of that tough era no doubt shaped and taught my parents to have a lot of grit, that they have passed down to me.

Mum and Dad wedding day. Still going strong!


What prompted this conversation with my mother was hearing from so many parents who are going through the same experience (in their own way). Being affronted with this whole new world of CF, overwhelmed not knowing what to do. Mum was very pragmatic about it, but for some the diagnosis rocks families to the core. Feelings of denial, anger, grief & guilt are all normal parts of the process. CF changes the direction of our lives, but I want to say it's not such a terrible direction. Once you can move through the initial feelings, there is light at the end of this seemingly dark tunnel.

"Every man dies, not every man really lives" ~ William Wallace ~

Please do not assume because I am so positive about CF that I am in some way unrealistic or in denial. On the contrary, I have experienced full well the harsh reality that can be CF and know how difficult it can be at at times. That is why I am so proactive in managing it! Fundamentally it is a more high maintenance life we have to lead, but I have accepted this and just get on with it. I see it a duty to do this for those who have done so much for me.  Acceptance is key to transcending this disease and turning a potentially sad life into a productive and happy one, with peace in your heart. Not only thinking of oneself, but more so of those around keeps me motivated me to stay positive and proactive. When you don't let fear overshadow your thinking it make it possible to fight it.

I have found acceptance through my Faith. Catholics believe suffering can have redemptive qualities if suffered with humility, patience and love. I have found a reason for my cross. By God's grace I am happy to bare it. Better me than anyone else I love. This core belief puts everything else into perspective for me. God has given me more than I ever thought possible, for that I am forever thankful.

Never did I get called a ''CF'er" or a "CF", my parents never said "my CF'er". I am a person with a name, their child, with a soul. CF does not define who I am, I just happen to have it! It's bad grammar if nothing else! I reject the mindset to label myself in that way. It's not a healthy attitude to have, almost like pointing the bone. To me it effects the mind from thinking beyond the boundaries of this illness. Even though my parents must have felt overwhelmed at times, they never showed it. Never stressed or negative about my health, I felt like a normal child. Until I was in my early teens I didn't even realise I had Cystic Fibrosis, those words were never uttered and I was non the wiser. My parents always made it clear to me what a blessing I was. In fact, CF brought us closer together. We are devoted to each other, my whole life I have observed all they have done for me, tried my hardest for them.

Me aged 3

Sometimes, I feel the past and the future pressing so hard on either side that there's no room for the present at all.” ~ Evelyn Waugh Bridehead Reviseted ~
Remember when you were a child the little things would delight you? It's the little things. I have had the blessing of rediscovering the world through my boys eyes. They live like peter pan, bringing me back to 'never never land'. So full of life, energy, on an inquisitive adventure are their little lives. Take time to enjoy the little things (or people!)  in life because before you know it they'll pass you by.Whether we live for a hundred years or not another day, we only have this moment, this time to share. I will not waste it being fearful of the future sadness that must come to us all... To cherish the time we have is the greatest gift you can give each other. Love. xo






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