Amos is home! It feels good to say it. It feels good to see it. Most importantly, he is happy about it. It is a nice milestone to reach in the long haul of this road to beating cancer. Amos' immune system is still pretty zapped out, but he is handling home life really well. We are still getting him used to food again, and slowly and surely he is holding more and more food down.
^A lot of smiles.
^Playtime with his best friend in his room again is such a fitting reward to winning his first round battles with cancer and chemotherapy. Murphy has been waiting for these play dates for quite a while. When Christine and I came home to visit her a few weeks back she grabbed a toy and ran into his room like she wanted to play with him. That broke our hearts, but this sight makes my heart swell right back up. She loves him so much.
^Amos is so happy to be home. It is sad because he really doesn't know what is happening to him. He is so happy here at home this week, but soon he will go back into the hospital for another suffer fest with round two of chemotherapy and he doesn't understand why. Everyone is so happy for him to be home, but as I spoke to my Dad about, it is a bittersweet pill for me to swallow. I am so glad that he is home, happy, and comfortable, but he is still so far from out of the woods. I still worry about him a lot. My wife, Christine, has been so impressive in caring for him. I think she qualifies for some kind of honorary nursing degree. At home there is a lot more work to do for us as caretakers. We have a home-health nurse that comes once a day, but otherwise all of his IV procedures and oral medication schedules on top of the usual care is all on us. Christine has stepped up to the plate in a big way. I try to do what I can, but there are just some things that he wants Mom for. I am in awe of the mothering from a woman who was insecure of her ability to adapt to a domestic motherhood role from her nature as an independent career woman of ambition. I always had confidence in her, but now I just stand back in admiration at times. Then she hollers at me to snap out of it and grab her some bleach wipes. Grandma Kay has been of invaluable help as well. I am proud of her, and how she has jumped right in full force to be strong for him and us. Kay has plenty of her own baggage to carry, but she has shouldered it all as well as ours now in order to be real asset to this family in this struggle that can easily border on overwhelming at times. It is all hands on deck at our house these days.
^I am still working full-time until I rack up a few more hours to take FMLA time to work intermittently instead. For now I still have to keep grinding though. I took too much time off when he was born and now I am behind a little too much. I hate leaving him to go to work each night, especially with how happy he is right now at home. The home visit has been a dual experience for me. While Amos and all of us are happy, I am struggling with the experience a little. It is a wake up call that he still has a long way to go and we really are not gonna be the same ever again. He will have medical needs above and beyond that of a regular boy for a long time. He will not have a normal infancy. He will be a little behind other kids his age. He will always have the scars of this war. Christine and I will never be the same either. I keep wishing I could flash forward in time to see him as a happy healthy growing older boy on some wonderful vacation with Christine and I and his unborn siblings just to know that he will be okay. I am still awash in uncertainty and helplessness at times that eats at my attitude. I want so much to live in each of these happy moments with him while we have them, but these lingering feelings haunt me. All I can do these days is to simply take it in and let it turn his smiles, laughs, and happy moments we are getting to share this week at home into the gold they deserve to be. Without those insecurities maybe these precious moments in between the fears and doubts would not feel quite as good as they do. It certainly does feel good to hold him basked in morning sun coming up over Mt. Ogden in the frame of our front room window with a smile on his face. I will stay present in the moment to relish in these good days with him. Everyone of them is a gift now of unknowable significance. It certainly does feel good right now though, and that is all I can really ask for today.
