I know that there are incredibly varying views on marriage and what its major components are. In my opinion one of the biggest pieces of a marriage is partnership. For Susan and I that means a partnership of equals, but I suppose using the term partnership shows a clear bias for how we try and operate. The important part though is to have an understood mechanism for dealing with all of the "stuff" that must be taken care of in a household, especially one with children. So Susan and I have a pretty incredible partnership and I think we are pretty good about being flexible enough to jump into each other's roles when necessary when one of us cries out for help for whatever the reason.
Things get a bit complicated for me when you throw a seriously sick child into the mix. From very early on it was obvious that one of my major responsibilities throughout Nathan's illness would be to continue to work to provide a steady income, and more importantly really, good health insurance benefits. This clearly made and still makes sense given that Susan put a hold on her career to tackle the much more difficult and strenuous job of raising our kids in our home. Now more than ever I understand how much more important the family aspect of my life is than anything remotely related to a career. While I know intellectually that by working I am playing an important role for my family, emotionally it just doesn't balance out. I don't feel like the equal partner that I wish to be and feel Susan deserves.
My day might consist of coding, having some conference calls, scoping some potential software enhancements, etc, etc. Now I downplay some of the stress of meeting deadlines, but whatever, that stuff may cause stress but it is nothing compared to the day-to-day stress of chronic illness within your family. Susan on any given day might sit through a chemo treatment, fight with insurance over medical bills, deal with the complexities of having two different sets of doctors involved in Nathan's ongoing care, and in the past sit through incredibly difficult and painful treatments far away from home with no one to relieve or help her. There is no comparison in how a given day for Susan can be so much more difficult than one for me. And I'm leaving out huge factors such as caring for Julia and Lauren in conjunction with everything else.
Beyond the everyday issues it is also difficult that Susan is the de facto expert on Nathan's care. Susan sits with the doctors. She is there with Nathan gauging how difficult a particular therapy or treatment is on him physically and emotionally. I don't tune myself out. I try and be in the know and involved, but given how our roles and responsibilities related to Nathan's care have been "defined", I cannot know as much or understand as clearly the implications of the difficult medical decisions we have to make. This is like a combination punch. First it is just hard to acknowledge and swallow the fact that I am not an equal partner in this aspect of Nathan's care and secondly it is incredibly stressful to Susan in that she carries around more of an emotional burden. Ultimately we still make all of the major decisions together, but I can't help but feel that the process is so much more difficult on Susan in terms of gathering the information, asking the right questions, and weighing her closer experiences to Nathan's treatment.
I think that we have divided our responsibilities as best we could but that we could probably improve on a few things. No matter how well we have divided things logically, it is very difficult for me to feel good about our division of responsibility.
Susan, my incredible wife and partner, is easily the strongest person I know. The burden she carries on her shoulders every day is so immense and she handles it with such grace.