missed opportunities

this disease is bringing up memories of time past. when i was 20 my father was really ill. he was dying. he knew it, i think my mom knew it, i didn't want to know it. i remember going home for a visit in August before i went to a job in Boston as a nanny. it was a lousy job, but i wanted to prove that i was independent and could do it on my own, and that i needed no help from my parents. anyway, i remember distinctly saying that i wouldn't be home for a year, or something like that. and my Dad saying "promise that you'll come home and sing at my funeral". i promised, but i blew it off. i didn't want it to be so. i had spent that summer with my friends in Bismarck, working at McDonald's and wasting time and money. being 20.

i went home for that one weekend before i went to Boston, and i ignored everything that was going on i guess. anyway, that August i moved to Boston. it was silly, and the job was lousy and i lost it almost immediately. at 20 i wasn't prepared to deal with kids. i stayed in boston for a month trying to find a job. what silliness. in the end about a week before my 21st birthday i came home. my dad had gone downhill a lot in those 2 months. the difference was scary. my dad wanted me to stay. i was smart enough to choose to do that. i took a part time job at Penneys and spent lots of time at home with my dad.

the next month holds memories that i could never replace. that i would never give up, that i am amazingly glad i did not miss out on. cinnamon toast, and the smell of it will always remind me of dad. it was one of the few things that he wanted to eat. i tried to remember things all day on the days i worked to tell him about what had happened.

on thanksgiving he went into the hospital, on paper, to have tests. he was having trouble swallowing and was losing more weight. honestly i think my mom didn't want to wake up one morning to find him dead. anyway, he went into the hospital. unfortunately i remember i had a stupid argument with him that day about an ad that promised to make chairs to fit anyone's comfort. (my dad was in a wheelchair, having had polio as a baby, and was quite abnormally built--no chair would have fit him). anyway, he went into the hospital, and the next day he was to have tests.

unfortunately, either in swallowing the barium (having now had to drink barium i can understand how this could have happened) or something else, he stopped breathing. they resusated him, but he came out of the test on a ventilator. i got this call at work to come to the hospital right away. i walked the 6 blocks from penneys to the hospital. that was the friday after thanksgiving. my mom started calling siblings. by Sunday morning it was quite obvious that this wasn't going to end well.

the doctor came in and told us that he was unable to breath without the vent. and that the best case senario was living in a iron lung or on a ventilator forever. and that likely he was going to go more downhill instead.

my father was an amazing, emotionally strong man. but the last thing he would have wanted was to be more helpless than he had been his whole life. things started going downhill and midafternoon he died.

i have regretted, forever really, that i didn't spend those months of august and sept and half of oct. with him.

i talked to my older son last evening. i told him about how this was a major regret in my life. and i tried, without being too harsh, to point out, that even with all the best medicines and highest hopes, that about 10% of the people with CML die within 5 years of diagnosis. he's been spending hours everyday playing games on the computer and has spent almost no time with me. i totally understand the escapism of "not real" worlds, and pretending that your mom isn't really as sick as she is. but i told him that if everything went well, and he spend the next year spending more time with me, it wouldn't be like he'd look back and regret the time missed on computer games, but that it everything went badly, in 3 or 5 years if i was dying, he would regret not spending the time with me.

i told him that wished everyday for years that i could get back those 3 months to spend them with my father. to get to know him as an adult instead of just as a child. it was so hard to say those words to a 17-year-old. i didn't want to have to say them. i didn't want them to be true. but i don't want him to live with the regret that i do.

and in the end, my situation only makes the risk more clear. take the time today and tomorrow and everyday to tell your parents and children and loved ones that you love them. spend real time with them. talk to them. sit with them. hold onto them. tomorrow may not come.