In total I have 5 daughters and 2 sons who I have direct long term involvement in, everyone of them I treat as my own, only because it is one of my principles of life, however Morgan & Grace are & will always be the Center of my world not because they are mine by blood but because I fully understand emotionally & legally my condition has biggest effect on them.
Morgan takes very little interest in my condition and in fact once asked me to cover my scar before swimming (which I did) I just think she blocks out what should have or could happen, I am healthy & my condition on face of it doesn't effect my life to extent she sees it, I have never actually lived with Morgan so I suppose all she has ever seen is my absolute joy & love of being with her, I will never try to dispel her belief my life is easy or straight forward to her,
Grace is different she spends all her English half terms with me in Scotland with Lorna, & Kyle now along with more and more of her summers. She talks openly about "Barry my device" and how she used to listen to my old wild heart rhythms, she wants to see & meet the people within NHS Scotland I say are so great. She has always asked me questions on my condition & treatment.
If you have read my blogs before you will realise how I feel my heart condition changed my life in a positive way despite the obvious drawbacks but the elephant in the room is and always will be they think my condition may be heredity.
As Lorna too has condition only 2 of my children from 2nd marriage are not tested regularly. Every time one is tested the deep fears come over us. It is easy to enjoy our life's because we understand how lucky we are to wake everyday so make most of it but easily our biggest fear is for our children not us.
There was absolutely no history of heart failure or sudden death in either of my or Lorna's families yet both my brothers got irregular heart rates at same age as me but due to testing unlike me no sign of dilated cardiomyopathy, their children are now regularly tested.
You would think the fact our families are tested so regularly & the advances in heart care is so great now would help ease our biggest fear but it doesn't.
So my condition has made me love & think of Morgan & Grace differently to my other children & so much more than if I didn't have heart failure, I fought to return to work to ensure financially they are forever ok, I push my physical boundaries like End2End so they have happy memorable memories of me. I plan my whole life around them so they only see the good aspects of my condition although Grace is seeing the bad bits more & more now which I absolutely hate.
When I was 1st diagnosed the thinking was woman with DCM should not have children but like so many taboos since then this has now been softened. My biggest regret of my condition is even once I am gone my DCM will haunt my daughters for ever even through their children.
So our heart failure is not just about myself & Lorna enjoying life it is now part of our families future forever & we just hope that is all it is. Hopefully we have given our children a vision of how to enjoy life without them or future generations actually really experiencing why we live the way we do.
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