What would have been

This week I have spent a lot of my time on the Facebook page for parents of children with Pulmonary Hypertension.  These are the kids who are living with PH and their carers and it really brings it home what this disease does to the whole family.  There is the mother who has been admitted to hospital because she just can’t do the constant care by herself, the siblings whose lives have been altered beyond recognition as they watch their beloved brother or sister cope every day with a disease that keeps them hooked up to machines, in pain and unable to take part in simple childish activities.  I must admit to a degree of shame that I’m a voyeur, stalking the families, feeling a mixture of relief that my boy was spared that agony and jealousy that they still have their children with them. They are my other reality.   This is what my life could have been.

Every time I talk about what Jude’s life would’ve been  like (I do this a lot) I always feel the need to preface it with”I would’ve done anything for him.”  My husband says that goes without saying, but I need to say it.  I would’ve done all the things these parents are doing and more to have him with me now for one more day or hour, or even one more wraparound cuddle on my knee.   But what would it really have been like going to an “end of life” meeting and making plans to ensure that his last days were slightly better than agonising?  How would we have coped with the depression and anxiety that a severely restricted lifestyle would’ve brought to our happy and bright wee boy?  We would’ve coped, of course, there’s no doubt about that.  But at what cost?

The most sobering thing about the stories from the Facebook group is that lots of these families are in America and they find themselves with a very sick child and spiralling bills because palliative care isn’t covered by their medical insurance.  One family opened a Just Giving page to save up for their daughter’s double lung transplant.  They managed to cover all the costs of the transplant but when it failed and they lost their daughter they had to keep the page open to try to cover the costs of the medical bills up to that point.  The NHS might need a bit of work but surely to God it’s a better option than this?

I’m not really sure that I belong in their group but I need them right now so that I can put what’s happened into perspective.  It’s a window to my alternate reality and while I’m rooting for the families on it, I’m soothed by the thought that my boy escaped all their anxieties and pain.  It’s a cold consolation but at least it’s something.


By judesmum

2 comments on “What would have been

  1. When Catherine died, for ages I kept telling people… but I was so careful as a parent (I was), this was so unlikely, it shouldn’t have happened, how could it have happened… until one heartless bastard said “but it did happen – deal with it”. I suppose the thing is that – we have to deal with the awful thing that did happen to us. However, I don’t think it’s entirely possible to take in, in one go, that your child died, that your child is dead forever, and that you are now a bereaved parent. Once I got my head round the risk, the unlikeliness of it all, I think I spent so much time thinking of alternative scenarios… like if she’d got cancer and died after 2 years of treatment and how much worse that would be!

    Your brain is processing it all – it’s part of coming to understand it happened. I know you know it happened. I know you accept it and know he is not coming back. But there is a big difference between knowing intellectually and coming to terms with it.

    I know you are torn between wanting to feel it may have been the best that he was spared any pain when the prognisis was grim, and knowing that as his mother you would have cared for him whatever. I think we torture ourselves with things like that. As parents, you have the right to feel whatever you wish – I think we need to find “compensations”. I never had to explain to Catherine she would die. She was never terrified. She didn’t suffer physical pain. But she died. She was 3. That’s bloody awful. It was better that her life was full and happy and good – but it is not enough. It would be better if Jude and Catherine were here, healthy, well and loved, and if we had never met – but that is not how it is. So take your comfort where you can – and know that at least I’m here for you if you’re having a bad day – and don’t hestitate to pop over or phone x

    • Thanks Susan,

      I had a horrendous day yesterday and I just couldn’t snap out of it. It’s like you say, I do understand that he’s gone and I’ll never see him again but I can’t convince myself of it. I don’t have any expectation that he’ll run to me when I come home or creep downstairs in the morning to see me as I get ready for work before anyone else wakens up but my heart can’t accept that he’ll never do these things again. It’s a very strange place to be.
      It is good to have you to talk to as I know you’re further down the road than me. I’ve also followed your advice and joined TCF and found some other parents whose children had PH too.
      Having a better day today (so far)


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