Agony....

Eviscerated. Again. I keep wondering if it would be as painful if I saw it coming. They had been bouncing off the walls all evening. Playing games, chasing each other, seemingly happy. H had a great day at school, getting to celebrate her birthday with her classmates. She dressed herself from head to toe, ankle length floral sundress over a long sleeve tee shirt, rainbow striped tights and black glitter flats. I did not have the heart to have her change, as she was so excited about her day and had obviously put some thought into what she wanted to wear. To top her outfit off, she got to wear a paper crown all day at school. She was delighted. When I picked her up, she was happy, dancing. The good spirits continued through the evening, they even went to bed without incident or complaint. So that is why it took me by surprise. I was doing my usual evening picking up, when I walked by their room. I glanced in the door and saw H slumped on the floor clutching her bear, and quietly sobbing. I went to her and sank down in front of her and asked her what was wrong. She lifted her tear streaked face to me and said "mommy I miss him too much". She told me that she just wanted him to wake up right now. She missed hugging him when he came from work. She missed watching movies with him. She missed playing blocks with him. She missed wrestling with him. She missed going to the playground with him. She said that she made a wish on her cupcake at school today, that he would just wake up, and it didn't work. She said she just wanted him to get up and play with her and not just sit around in a wheelchair doing nothing. She said she draws him pictures to make him happy so he will wake up and we can be a family again. She said it is not the same without him, we are not the same family without him. She said she just wants him to hug her and hold her. She said she doesn't want him to give up. What could I say to my small daughter, just on the cusp of her 6th birthday? She has been amazing, she has done so well. I sat with my child and sobbed in her tiny arms. I just kept saying "I know" over and over again. Not knowing what else I could say that could possibly make any kind of a difference. Children by nature live in the moment, and here we have asked them to live in limbo for 8 months. We have given them no answers, nothing tangible, just hope. Hope is a difficult concept for adults to grasp, let alone children. Some have wanted to say things to them like "he will get better" , but I have refused. I will not lie to them. I will not have gone through months of this, only to have to start back at square one. They have to know how things are, they have to see where we are. Not to say that I do not make it as "pretty" as possible for them. They do not go in the hospital room, they only see him up in his chair, either outside or in the cafeteria. He is always, dressed, shaved, and has a little gift in his hands for them. That is as pretty as I can make it. But I won't lie to them. I hope, but I will not allow myself to throw myself into it, I do not have that luxury. I have them. I don't even hope for my husband, my partner or my friend. I only hope for their father. If they could have a small piece of that, it would be enough. If they could have that, I would give up everything else. As a parent, there is no greater pain, than watching your child suffer, and to be helpless to stop it. This is not a scraped knee or even a broken arm, this is so much worse. It is agony.