Where do you go from here? (edited)

Twenty years old and more completely out of step with everyone I knew than you could imagine. What few friends we had still had no idea how to deal with the tragedy in our lives. Some simply said nothing, others disappeared. People have little ability to cope with death especially when the death is that of a child. We were left with no formal support - the hospital pretty much just said "Goodbye, we're sorry". There were no services dealing with this type of thing, Bonnie babes was established but dealt with babies (still births, SIDS deaths and the like), there was another group but they were focused on teen and young adult deaths. For the families of young children there was nothing that we could find. DH(my husband) retreated into his pain and

Long hospital visits are no fun...

My tiny little boy struggled from one health crisis to another, many of them not as serious as first thought. He was so small that equipment just wasn't available that fit him, monitors didn't work properly because he didn't cause enough pressure to register, echograms didn't work correctly and showed him with serious heart defects that turned out to be nothing, there wasn't even nappies to fit him. The hospital used 000 singlets, folded them in half and used them even though he was still swamped by the enormity of them. The small conducting pads they use for heart monitors etc covered almost his whole chest, just one of them almost covered him. We spent almost all our time at the hospital. I pretty much took the last train or tram home and headed back by about 8am the next morning, every day...