As difficult — actually painful — as it was to make it through yesterday, after not grabbing any sleep the night before, I made sure it didn’t have any impact on Ryan. To him, his day was as productive as any other. In fact, maybe even more. I had him up-and-at-em’ at 4:30. He completed a full day of therapy well ahead of schedule, so I took this extra time to do more sensory exercises with him.
As for me… well, I crashed hard when Sue got home from work around eight o’clock last night. I remember flopping down on the couch and turning on the television, but that’s all. I can’t even recall what I put on to watch (I faintly remember a documentary on the Tuna industry, but I might have noticed this one of the times I stirred). By 3:30 I just couldn’t get back to sleep so I put on a cup of coffee and started my day. I’m sure I’ll regret my early start at some point later today.
The tough part about not having a nurse is the effects linger for days. Granted, the day following is clearly the worst (but coffee makes it bearable). There is no opportunity to catch up until the following weekend. This last absence is especially difficult because it happened on a Sunday, meaning I must make it through the week before catching up. Heck, now that I think about it, I might not have this luxury this weekend. I plan on visiting Kari at WVU to attend a benefit for Ryan (I’m so excited to see her and all the people of Morgantown!). I can’t make it to the Dragonfly event the following Wednesday, but will be there for the 5K race on Sunday morning.
Without fail, Ryan must be watched at all times by someone who knows him well enough to spot trouble brewing before it gets out-of-hand. In our case, just like any other parent, it’s just Sue and me. This is why we sleep beside him even when we have a nurse. It allows us to switch from actively to passively monitoring him (where, even while sleeping, we listen for monitor alarms, coughing, respiration, etc) while the nurse tends to routine care.
I simply cannot even take a cat nap while alone with him. In fact, I won’t let myself to close my eyes for very long for fear I might drift off. When extremely tired (like yesterday) I drink an excessive amount of water to wake me — with the urge to urinate — if ever I did fall asleep. This works better than setting an alarm because I can’t snooze it… can’t accidentally turn it off… can’t ignore it. This was a little trick I learned from the many nights waiting for my children to get home.
Try it… it works.