Today’s guest post is written by Samantha Allington:

I have just been diagnosed with Left Ventricular Diastolic Dysfunction, a cardiac disorder that has a life expectancy of 7.1 years on average.  I’ve only just had the diagnosis and have not been given my prognosis yet, but have been doing a lot of my own research.  I have asked for a second opinion and referral to the best cardiac unit in the country and all prospective treatment is pretty much all theory as there hasn’t been much research previously.

I’ve started planning my own funeral and already discussing this with Ann, who organised my daughter and my triplets funerals.  I love Ann and she’s the only person I can imagine sorting my funeral out, the only person I trust.  In a way I guess this is more than most people can ask for.

I’m a 35 year old newly married mother of four girls.  I only met my husband last year after getting out of a 6 year abusive and violent relationship.  Life was just beginning for me after a lifetime of trauma.  After being with my husband just over 18 months I was beginning to allow the walls to come down, to relax and to trust and believe in him and our relationship.  I was just allowing myself to start really enjoying being with the man I love.  We’ve only had 2 weekends alone since we got together, without the children.  The first time was earlier this year for our first wedding anniversary when I was miscarrying with my triplets at just over 11 weeks gestation, and the second was 2 weeks ago when we went away for his birthday.  It was a wonderful weekend although I still missed the children.

I have a difficult relationship with my own parents although after 6 years of being estranged from my mother I have recently got in touch with her and spending more time together, and no extended family that we have contact with besides family in Norway.  My husband has a strained relationship with his parents also and I don’t get along with his mother at all.  He has one brother he gets on with and one he doesn’t talk to.  He had another brother he lost.  My four daughters are his step children, we were trying for a baby of our own until we got the news the last few days, and our dreams have been crushed.  Neither of us works due to my disabilities and him being a full time stay at home carer to me, although I’ve dedicated the past couple of years to doing a lot of fundraising for charity and running a support group for bereaved parents and families who have lost a child.

My husband has dealt with lifetime trauma himself too.  It’s due to all these combined difficult and complex circumstances that I feel I need to plan so much for when I die to try to make things a little easier for them all when I have gone.

I don’t want to just fade away; I want to tell my story to someone, somewhere.  I would like to start summarizing the past as shortly as I can and then post updates of progress, planning my children’s life after mummy, the funeral etc…I want to try to make the most of what I have left and will be trying to spend as much time building memories for my children, writing a small book for them of things I would want to say to them at each milestone, good memories we shared, memories of the proud moments I had of them etc…So I’ll be trying my best to remain positive as I don’t feel I can ruin what little time we have left by negativity but of course there might be down times where I would like to share how I am feeling, what’s going through my mind.  Updates on hospital appointments, news etc…

At times my writing may seem fractured; sometimes my spiritual beliefs may yoyo between one thought or another.  Sometimes I’ll write like I do here and others may be in a diary excerpt style.  Sometimes my writing will be descriptive of emotions and feelings, fears and dreams.  At times it will be emotive and others more factual based or analytical.  What I promise is not to hold back and to be as open, frank and honest as I can be.

Most importantly I hope to inspire someone, help someone who might have gone through this with their own parents or family member or someone who’s been diagnosed with a chronic and progressive or terminal illness.  Perhaps one day my own children will sit and read this all and it might help them.

What I want to come out of this is a message of staying strong, standing together united as a family, not giving up and most importantly a message of love and what is truly important in life.


I welcome comments and opinions but I ask respectfully for no prayers.  At this stage of my diagnosis/life I am torn between hoping God doesn’t exist but unsure of his existence and being very angry at God if he does exist and so I find offers of prayer upsetting, hurtful and offensive.  That is not to say I disregard or disrespect your own beliefs just that I find it difficult in my own life right now.   Religion has for a long time been at times very triggering for my mental state due to my religious upbringing although religion, god, spirituality I’m sure will be a topic of discussion at times as it’s hard to avoid when talking about death.

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