what manual?

Another post from Jodi:

Anyone who knows me well knows that I don’t live my life or do my job following manuals and regulations. I read them, consider them, and then break them, sometimes without even trying. When I was in the military, I broke rules merely by being gay. See? No effort at all. When I was 17, I had this awful job cleaning motel rooms at a seedy dump for $4.25 an hour. It was back-breaking work filled with lugging huge armloads of bedding up and down stairs, and most of my co-workers were elderly and unfit. One day, Maria, a 60-year-old grandmother, was assigned second-level rooms to clean, and I was working downstairs. When I learned Maria was in a great deal of pain, I offered to take her assignment, as I was young and had a strong back. It was no big deal. But management found out and reprimanded me. I hate to be reprimanded, so I walked out on the spot.

I opted not to use a severely outdated and incorrect textbook as a new teacher at one institution and was blacklisted. On a daily basis, I make my wife pay bills, fix things, research information, etc. because she does read the manual. Anyone who has been reading the blog can see how much of an expert she became on leukemia treatment and Caemon’s disease. She remembers every medication and chemo cycle, how long they went on, what the symptoms and side-effects were. Seriously! I can barely remember to put gas in the car most days.

People have said that there are no manuals to grieving, but there are. We have been given books to read, websites to visit, pamphlets and guides to grieving. I’ve looked at some, ignored others, and promptly broken most of the rules.

I don’t exercise, or attend support groups. I work hard not to feel my grief, but it only delays and intensifies it when I can no longer hold it back. I haven’t turned to God, and I’m pretty spotty about attending therapy. I’m terrible at this.

I don’t know why I’m a rule breaker or why I make things harder for myself by being one, but leading with love is risky business. Broken hearts are the collateral damage. I’m capable of love still, of course, and sometimes even happiness, but a duality has developed where pain and joy coexist, pushing and shoving each other for a spot at the front of the line. Learning to live with that duality for the rest of my life won’t happen because I read “Ten Steps to Grieving a Child.” Learning to live with it, well, I guess I’m writing my own manual — Flailing in the Dark: A Rulebreaker’s Guide to Grieving.

But losing a child is not like losing a job. I can’t just go out and get another one, and I certainly can never replace my precious son. When Caemon was first diagnosed with JMML, his then-Oncologist described a bone marrow transplant as “high risk/high reward.” Isn’t that what having a child is anyway, even without the added nightmare of leukemia? Isn’t loving a child with a depth so profound as to be scary a risk? Yes, as we learned, it is a risk, one I would take over and over because to love that deeply, to invest every bit of my soul into that beautiful, innocent being, was also the highest reward.