Lighthouse, talking to ppl who understand certainly helps. We used Robin house, ( Childrens Hospice ) a place I didn't want to take him in the first place but after the first visit, i fell in love with the place, at the end, we took DS there to spend the final day of his life.
DS was born on 28Apr, left 11 Sep 07. We had him for about 4.1/2 months. My whole world collapsed when he was diagnosed with 'Epidermolysis Bullosa', DS's story and pic on www.justgiving.com/jim_jim the most severe kind soon after the birth. He stayed in the hospital for 3 wks, there isn't a cure, it's genetic, we were told that they cannot do anything, I rememeber sitting by his bedside whispering to him, 'Mummy wants a miracle, I want you to recover' in tears.
But then meeting other families have helped me to cope. I remember the day after DS died, a teenage boy staying at Robin House came to me said, 'sorry, I know James left you, I am very sad', this boy himself was also born with a terminal condition, he will probably die around age 20 and he's 16 already, then he told me his younger bro always in the House and he's also suffering from Musulcar Dystropy.
I know theres no comparison, but I know that at least DS didnt know any difference, i couldn't imagine how much more he would have suffered physically and mentally if he was to live longer. I realise that DS is definitely in a better place, pains gone and he stays in my heart.
Sometimes I ask myself why me, why us, why DS, why chose me? but then theres no answer, a mum who also lost her son said to me, if it didnt happen to us, it will happen to someone else, we've been chosen as we are tough and we can cope.
I think the pain isn't as raw as the first few months but every now and then I think of DS and I still cry and I cannot see him walking and talking, it hurts too. I know I will forever be missing him and life will never be the same after lossing your child.