Riding Chaos

I went to bed at 8:00 tonight.

My body felt tired from the week. How indulgent to crawl into bed so early and snap off the light rather than try to hold my eyes open to read more chapters in my book. I heard Greg come into the room at about 9:00. I mumbled at him, "What were his sugars, honey?" This, part of a constant dialogue between the two of us to communicate where Toby's glucose levels are throughout the day. He replied, "415".

Immediately I'm awake and familiar pangs of guilt fill me. "I shouldn't have let him have that small box of nerds after dinner tonight", my self-deprecation begins so readily that it is almost part of the blood that courses through my body. And then it turns outward, "Damn all these stupid commercial holidays with their fucking sugar!" Toby has a mound of Valentine's sweets from his class party which we slowly over time will dole out to him while I surreptitious throw some away.

My mental downward spiral is interrupted by more pressing needs...Greg is speaking to me, "What do you think?" "One unit?" I suggest. Greg concurs and administers one unit of insulin using the insulin pump that Toby wears.

I fall back to sleep but am awakened by Toby crawling into bed with us at 11pm. He is lying next to me doing the I-have-to-pee-dance rapidly shaking his legs. He jumps out of the bed after a few minutes and runs to the bathroom. This is a certain sign that his blood glucose level is high and he is peeing off sugars...thus the urgency. I hear Greg's grumbly voice, "Will you check him." I feel the familiar sinking feeling inside. Yes, of course, I will get up and check his sugars but no, I'd rather stay in the warm bed and have someone else do it. I flop out of bed grumbly myself for the disrupted sleep and snap at Greg when I can't find the glucose monitor. These are moments when we can really lose ourselves with each other.

I sit on the bathroom floor with Toby and he complains that he feels sick as I check his levels. 479. Yes, that would make him feel sick. I holler the number out to Greg like a diner waitress giving an order to the cook, "I got a 479, Hank, but I needed the 154!" I hear Greg's feet hit the cold floor as he shuffles into the bathroom with us.

This has become a familiar scene for our family. Greg and I have learned how, in the middle of the night when medical needs become high and patience with one another gets low, to show up for each other. Neither of us wants to be up which means we'll both be up until the crisis is managed. We determine that something must be wrong with the pump -- the insulin may have gone bad, the tubing may be clogged, the catheter set could be clogged. While I give Toby a manual injection of insulin, Greg takes the pump to troubleshoot the problem. Toby cries about having to get a shot -- using the pump has meant no more shots for a boy that once had up to 10 shots a day. A flash of resentment rises through my body, why him? Why us?

I put Toby back to bed and sit with Greg at the kitchen table while he reloads fresh insulin into the pump. This is a job that he is in charge of...I know how, but it's a role that has been distributed to him. I sit there, cold, tired, irritated...just quietly sitting. Showing up when neither of us feel like it -- so both of us do. This, I think, is part of what contributes to us having a better marriage today than 3 years ago.

When Greg's done, I go back into Toby's room to plug the pump back in...while I'm doing that I check the catheter set again and notice that the tubing is completely out of his skin. It must have popped out during the evening bath but the adhesive on the set secured it back in place so we didn't notice it before. Again, I holler to Greg, "His set came out!" I'm irritated. I say it in almost an accusatory way as if it is Greg's fault. Lovely.

This means one of us, me likely as Greg's back in bed, will have to put numbing cream on Toby, stay up an hour for it to numb his skin, and then insert a new set (we have to use numbing cream as the two inch needle is pretty gnarly for little guy). I'm irritated and want to throw it all at Greg. I walk back into the bedroom like a weary soldier from battle. Greg asks softly, "Do you mind...?" Big sigh. "No," I say. "I don't mind, I'll stay up." He quietly mumbles thanks as he quickly drifts off to sleep.

And so goes another night in our home.

This life demands so much from me on so many levels. I see myself learning to ride the waves of chaos with slightly more grace than I have in the past. Although sometimes it feels like all I can do to stay in my body and be with my feelings. But of course I realize that in fact, yes -- this is all I need to do.