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.