My son is an entirely different matter. Ham has "airway disease," this is a polite way of saying your kid's lungs are messed up and we really have no idea why. He now gets to use oxygen while eating because his oxygen sits around 89/90 and will dip into the low 80s and sometimes into the 70s. This sounds simple, but like any one year old he prefers to stick things up his own nose and not have his parents strap something on his face that blow air up his nose. So we spent a few days letting him get use to the cannula. Baby girl was a big help since she put on the extra larger one and would just leave it on so Ham would think it was cool. Tonight we will try it during a meal for the first time. We are still in the diagnostic phase and I have come to grips with this new reality. Doctors will give a sort of diagnosis just to change it when Ham does something new. Its frustrating and at times scary but mostly I don't worry about it, because all that does is make me nuts. I do find it annoyingly ironic that I have huge lungs that work so very well and he has "airway disease."
This whole process has allowed for some clarity in my life. I took all those science classes in college so I could handle this. I am not working at a job because this situation requires more intensity than a daycare could manage and I need to be here for ALL the appointments and to advocate for him. My husband took a job that makes him travel extensively, bores him often, but is extremely stable because of this. But, back to Prefontaine....
I was given this gift of being really metabolically efficient and I am not going to sacrifice it. I spoke about having goals over the next five years and physically my goal is to do an Ironman, and not just do one, but do one fast. I know what training for one requires and honestly will not be able to do that until all three kids are in school, but in the meantime I am going to do sprints, Olympics, and this summer, a half Ironman. I am going to use these gigantic lungs to my absolute best ability, not to just finish a race, but to finish it well. I am not going to squander this gift.
I am not sure what Ham's capabilities will be when he is older, if this will be a life long problem, if it something he will grow out of, or if it will something fixable. I'm not sure what this winter will bring with all the germs, but what I do know is that we now have recognized this is going on and he is under the care of some really great doctors. I also know that I want him and his siblings to have normal childhoods, not ones filled with doctor's appointments and hospital admissions, so we take care of what we need to take care of and leave it at that. We don't make a big deal about Ham.
Yesterday the husband and I moved the computer up to the kitchen so we could follow the Ironman Championships in Kona live. We have a family friend who was racing and wanted to see what the pros had in store. It was amazing to have it on all day. When you see age groupers cross the finish line after racing 12+ hours it really brings tears to your eyes. There were many people who had struggled in life, cancer survivors, amputees, people who had received heart transplants, an 80 year old man that was competing in his 21st Ironman. It really does make you admire what the human body is capable of so why sit around and squander it. I could succumb to my fears about Ham, but I won't, that would be sacrificing the gift. Yesterday made me think of another one of my Pre favorites, "A lot of people run a race to see who is fastest. I run to see who has the most guts, who can punish himself into exhausting pace, and then at the end, punish himself even more."