Yesterday, my husband, Gregg, returned from his first trip to Japan in over a year. He usually travels there for his work 3-4 times a year, but had stopped traveling while Katie was sick.
I used to get very sad when he left on these trips, and miss him with an intense longing. After the events of the past year, it felt more like, "Have a good trip. I hope you have some great meals and accomplish some good work. Call me each day & we'll be fine." It was a totally different rhythm to anything that we'd experienced before. David and I were a good team at home. Having said all of that, it is GREAT to have him back at home!
We did get used to splitting up each night while Katie was in the hospital. Gregg stayed the nights with David at Ronald McDonald House during the week while I was at Children's with Katie, and I stayed there with David during the weekends while Gregg stayed with Katie. Since we are a very close family, all of the separations, even just for sleeping, were difficult, but I think they had the effect of making this trip of Gregg's to Japan easier on me, for some reason.
I have been reading some blogs written by other mothers, one in particular whose son died in this year. I also recall a number of conversations I had with parents of other children when we were in the hospital. As awful as all of this has been, it has always amazed us to find out that it could have been worse along the way. The outcome is as bad as it gets, having our beloved Katie pass away, but there are other families and other children who actually had a worse time than we did during the illness, and in their dying. We keep talking about that: we didn't think it could be any worse, but it COULD have been. Amazing. We can be grateful for that, even while we did not get the outcome (remission and a cure) that we wanted.
We felt very loved and grateful for the support we had, in the hospital community and outside of it, from our family, neighbors, friends and church community, as well as the community at large. There were people who were traveling this same road, but very much more alone than we were. I grieved for them. We can pray for them. There are also other mothers, in other parts of the world, holding their suffering and dying children, without medicine, a home or even clean water. So yes, it is as bad as it gets, but at the same time, it could have been worse...it is worse for some. Prayers for comfort and love go out for those people...