Saturday, August 26, 2006

Sleep Well Little Alex

Well, yesterday we said goodbye to little Alex. Alex struggled for 15 months with heart and lung problems. He beat all the odds to make it home for a few months where he had a wonderful time with his parents and stayed amazingly well. Sadly, he had a heart attack last week and died suddenly at home. Like many of these children, Alex was a happy little boy and enjoyed making the best of his life when he was well. It is so sad when, these days, it is the funerals of such young children that bring new friends and acquaintences together. Alex made a huge impression in his short life and there were a lot of Brompton nurses, as well as well as the parents Alex's parents got to know, some of whom still have their children, others who have already lost them. It is getting harder to cope with these occasions. I was so gutted when Riley died and now find myself heartbroken for the child who we are remembering, as well as mourning again for Riley and then, once the floodgates are open, all our own heart break for William comes pouring out at the end. The stupid thing about this is that, at the wake when everyone is taking a deep breath and trying to enjoy the day, I am still all churned up and well up again and again. I was not the only one, one poor nurse was absolutely shattered and found herself questioning her ability to carry on working in a hospital where so many children have life theratening illnesses.

I had shared many open and frank converations with Alex's parents over the last year and yesterday was no different. It was nice to know that earlier conversations were still remembered and that I may have been able to help them work out some of their feelings. One of the strangest and saddest conversations I had was with Alex's Mum and another Mum whose baby died last year and whose funeral I also attended. We were talking about coffins and choices for readings and how little guidance there is out there for parents who loose young children. We moved on to compare grave plot prices and procedures and how it would be good to have a guide - even joking about the need for a mother and baby type magazine. How tragic that 3 young Mums should be discussing such things rather than the best buggy for toddlers and the price of Clarks shoes! The most poignant topic of this conversation was "Are you still a Mum when your only child has died" Alex was an only child and yes absolutely was the reassurance us others gave! You can never stop being Mummy to your children, not when they grow up and move away and certainly not if they tragically die so young.

You go through such a mixture of emotions on a day like this. The strongest is unbelievable pain and sadness for the family. With that is, of course, relief that your child is still alive but this is coupled somehow with a guilt. You also worry and feel the need to phone home and check all is well at the earliest opportuniy. Later comes the enormous sense of responsibilty as bereaved parents advise and request that you look after your child and keep in touch. I remember Riley's Mum, Helen telling me about such a conversation and later, when he died, how that Mum was the hardest to tell as she felt she had let her down. I know exactly how she felt! As more and more of William's friends pass away it is hard to fight the irrational fear that the net is closing and he will be next. There are only 3 children left of all those we have become closest to in hospital over the last year. Of course, we have met many more children with and without life threatening conditions since. The harsh reality is that we have an increasing circle of friends who have children with life threatening and life limiting conditions and as the years pass we will loose some of these precious children. One lesson I still have not learned is to bring hankies or tissues to funerals! I spent the entire service with tears dripping off my nose. They should hand one out with the order or service!

Rest in peace and breathe easy now little Alex. I know there are some very special little children up there in heaven with you. I hope they are looking after you and you are all happy there doing all those things you could never do in your lives. Be happy!


Emmie said...

What can I say after reading that? So very sad that words seem trivial. Sending you lots of love xxx

Shadow said...

Thinking of you all, Alex and Riley's parents too. I'm sitting in tears as this is so close to one of the issues that worries me about CF, losing our children one day, however old.
Much love and many hugs.