A few weeks ago I couldn’t imagine anything as physically crippling and mentally tormenting as losing my son. A very strange thing happens though when you are faced with the reality. You start to look for the “at leasts.”
I haven’t used the words “at least” nearly as often in my entire life as I have since my amazing wee boy died. Early on we said “at least he wasn’t in pain” “at least he didn’t suffer” “at least his life was full and happy” “at least it wasn’t an accident and there’s nobody to blame” Of course none of this brings Jude back but we were truly grateful that we had five years and four months of him full of health and happiness. He didn’t have any of the restrictions of PH that he most certainly would have if he was diagnosed earlier (of course he didn’t have the slightly longer life the medication would have provided either but we cant dwell on this) We didn’t have to make decisions about transplants or palliative care that would’ve left us all terrified and doubting our role as parents.
Of course to people who haven’t lost a child this sounds like cold comfort, but what option did we have?
We also had other things to be grateful for. The condition is very occasionally know to run in families so our daughter being given the all clear was a huge relief. All our memories of Jude were a comfort nearly straight away. We were told that children born with his condition are usually diagnosed at eight weeks old and all the figures suggest that patients who have severe ph die within 3 years of diagnosis; 2 and a half years of bonus time.
As a parent of a child, your worst fear is that something bad will happen to them. Once they die, that fear has gone. Its replaced by something more terrible that can’t be brushed aside with a quick cuddle, but it is your new reality. There’s no option for an opt out. A week after Jude died my husband bumped into someone from his work who was out with her four year old daughter. She asked how we were getting on and added that “she couldn’t live without her daughter” as she held tightly to her chest. She has that fear, and more importantly, she has the fear of carrying on without her child. It wasn’t the best thing to say but it was purely instinctive and I could relate to it. There is no option to join your child or cease your life and that is sometimes the hardest part. You need to carry on and try move forward with the pain and the longing.
We need to live our lives more fully than we did before and appreciate how fragile life is. It is a painful lesson but very humbling and very important.