One of my young adult (age 22) children has a serious chronic illness. In fact, he’s in the hospital this weekend. This is the third time this year that he’s been admitted to a hospital through the emergency room.
He insists upon living on his own in a major city which is a 3.5 hour drive from our home. He has only a high school education and wants to go to college, but spends all his physical energy at a minimum wage job which allows him time off when his illness flares. We help him out financially. We try not to think about his living conditions (at his age, the idea of living in a house of seven college students is still considered an adventure). Besides, in this city he has access to specialists who treat patients with his illness every day.
I am glad that it’s him and not me. I don’t want to trade places with him, and I don’t wish for one second wish that it was me that had this illness instead of him. Yeah, so there’s some guilt, for you: I don’t feel guilty that he’s sick instead of me. But I do feel a bit guilty for not feeling guilty.
I swear, every mother I’ve ever met has said that she would much rather suffer illness than allow her child to suffer illness. Where in the Big Book of Motherhood is that written, anyway? Did I skip that chapter? Was that page torn from my book?
Despite the lack of desire to assume his burden, I do feel great distress that he has a serious illness. But to convince myself of this, I keep evidence: Proof that I am in fact a good and caring parent.
- Exhibit One: When he was first hospitalized a few months ago I broke down into blubbering sobs at the bank as I asked how to get power of attorney to help us manage his meager finances long-distance.
- Exhibit Two: In private, I cry for him. A lot, when he’s really sick or we’ve had a visit with him.
- Exhibit Three: I cruise the Internet looking for treatments and/or ways to help finance his healthcare.
- Exhibit Four: In January I dragged him through an entire day of visits to the Welfare Office and Hospital Social Worker in order to get the paperwork processed to get him steps closer to receiving state health insurance and free medicine. At $1200/weekly treatment, we, his parents, do not have the financial resources to purchase the medication he needs. This meant that while the paperwork ground through the system, our son went with no medication for six months.
Yep. That’s pretty lame. Sounds like my feeling sad is more about me than about him. I look for ways to intellectualize the sadness: At least he has access to healthcare now; it could happen to anyone, why not someone I love; only he can walk his path, etc.
Upon the advice of a friend, I read Psalm 91. I see now where some people get the idea that God is a benevolent genie who dispenses magical protections to the faithful. The psalm is nonsensical in the literal sense and offers no comfort in the physical sense. I remember back to our church days, where I would have made the psalm fit into congregational doctrine. I remember when I would have spent 20 minutes convincing a hurting friend that the psalm provided just the comfort and hope they were seeking.
I think back to the story likening church membership to burning coals which depend upon each other to retain their heat, the sermons warning that the Bible makes no sense to the unfaithful.
I consider my new understanding of God. Of how I have recast God as a creator of universal, not just Christian, proportions. I intellectualize the sorrow a bit more, reminding myself that the here and now is only one manifestation of God’s creation. Even the Christians believe that.I am left with this: This experience belongs to everyone it touches: The illness itself is my son’s path to walk, his burden to bear. Our family’s path lies in learning new ways of living with each other through sorrow and concern and changed expectations. Our path lies in developing bonds that strengthen our relationships, finding ways to accommodate the emotions and reactions that come when a beloved members lives with chronic illness. I don’t know where God is in all that, but I am confident that there is a God, and that God is really, really big. Bigger than the bible, bigger than the church, bigger than Christianity. Big enough and good enough to provide meaning for our existence, even if it’s not in Psalm 91.