December

Henry was getting closer and closer to dying. We talked to you about it a lot. You knew he was sick, and that he would stop breathing, that his heart would stop beating. You knew that he had no immune system, and that he couldn't fight off infections. Henry's breathing got worse, He continued to lose weight and get weaker. He slept a lot. Even towards the last few days, when we tucked you two in at night, Henry would call out, "love you to the moon... and back!"

 

We told you that we weren't going to talk about Henry dying in front of Henry. From the beginning, we didn't want to scare him, and you never did. You asked once if Henry knew. If Henry knew he was dying. I think he did. I don't know if he knew what it meant, but he was adamant about not having any more TPN, or tubes up his nose. He knew he was weak and sick. In a quiet moment, a few days before he died, I whispered in his ear that he was dying, and that we would be OK. I told him that we would take care of you, and that we would be OK. That we all loved him, and we would miss him. That he was brave and taught us all so much. I doubt he understood, but I wanted him to hear it.

 

We snuggled a lot with Henry. For a long time, I was the only one that he let hold him, but as his body grew tired, he let everyone hold him and surround him with love.

 

Rarely, he felt good enough to travel, but he needed all of his drinks with him, and his toys. Remember, he had a Thomas the Train box that held his favorite toys, including three Optimus Primes, Doggie, a small black train and a tiny red dice.

But mostly, we stayed home and snuggled.

Each night when we put him to bed, we honestly didn't know if he would be alive in the morning.

It was emotionally exhausting. We tried to be there for you and Henry, and for ourselves. Henry's breathing continued to get worse, it was fast and shallow. His heart was beating fast. He was so skinny.

 

These are the last pictures of Henry alive.

On December 20th, 2013, I was sitting on the couch holding Henry. You were beside me watching a Spiderman cartoon. Something happened, and I called dad from upstairs. He got to us right as Henry was taking his last breath. He died at 2:05pm, in my arms, surrounded by love.

I don't know if you want to see pictures of Henry after he died. But we took them. You were so sweet with his body. You helped us bathe him and dress him in his fireman shirt. You brushed his hair, and even took a small clipping of his hair.