I think of last Christmas, when Ethan finally understood that underneath all the fun wrapping paper was something for him! I have photos of him peering into a gift, and I think of him ripping off the wrapping paper then wheeling the truck I bought him around the floor.
I wander past toys and clothes in the shops, I have a few times automatically stopped at the aisle that holds clothes for 4 year olds. I have picked up a jumper I thought he would look good in, and have had to put it back when I suddenly remember.
I walk, too quickly, past the toys that I would have bought him.
My poor baby, he really did fight to live. I think back to the time when I thought we were out of woods, so to speak, with Ethan. When I really thought he would nto be admitted to hospital ever again, and the posiibility that he would be put on a ventilator was so remote it wasnt worth thinking about.
Then it happened. HE got sick. He was on a ventilator. I had to go back to the mind set I always had in hospitals, spending day after day beside him, but at the same time trying to keep things normal (ish) at home.
As Ethan was ill I had to process a move to new county, find a new school for Ben, and try to keep on as normal as I could when I wasnt at the hospital - just for sanity sake.
The 2am phone calls from the hospital, the 10pm ones, the 6am ones. The calls that made me go rushing to his side, whispering for him to keep going, that I loved him so very much, that he was mummies little soldier.
Time went on and he did not get better. The withdrawal from the drugs was horrendous and scary. I was so worried for him and heart broken that the treatment to keep him alive had done that to him.
Then the knowing that he was not getting any better, and the decision to move to pallative care.. it was hard to understand.
I had spent so long fighting for him to live and I had to learn that instead of helping him when he was sick, the key became to make him comfortable. That was so hard when at times everything in body screamed "Call an ambulance".
I knew that an ambulance would not help, that putting him on a ventilator again would be wrong and cruel. He could not be sedated easily and it would not help grow more lung tissue.
We didnt have time to consider other things such as lung transplant. He would not have been a candidate anyway.
The morning I found him, so cold and still (though hs body was still warm) will stay with me. The image of my baby laying so still in a bed, the cuddles I gave him will always be with me.
This Christmas I will be with my partner, his children and Ben. I will be close to where Ethan rests. There will, I hope, be lots of smiles and laughter and love. Up on the tree sits a special ornament with Ethan's name on, and beside it a heart, a heart that one part was put with Ethan and the other is on the tree.
My Ethan has gone, but the love I have for him remains and always will do forever.