Hypervigilence is one of the most difficult things about this life with Smith-Magenis Syndrome that we live with, but it’s one of the things I find most people not living the life understand or even know about. I don’t know how other SMS parents cope, but John and I both have Rules To Live By that are on constant loop in our heads as we go through our days and nights with Elsie. Having to stay ten steps ahead of our SMSer is mentally exhausting, discouraging, and it never, never, never ends. Its even worse when we’re sick (with Influenza strain B, no less). Here at what is hopefully the end of our party with Influenza strain B, I’d like to share the Rules To Live By that have been the theme of our last week (though I’ll grant that other SMS parents’ lists may have many more items than ours does):
1. Do not lay in your bed too long or SMSer will come in and systematically take all of the knobs off of your dresser drawers (because you are not giving her enough attention).
2. Do not lay on the couch or SMSer will come and stand in front of you and pick the scab on her chin where she scratched a hole for no reason, all because she knows it bothers you (because you are not giving her enough attention).
3. In fact, it’s better not to rest at all (this is not a “super fun project” and therefore qualifies as not enough attention being given).
4. Move all essential oils, medicines, thermometers, water cups, soup mugs, lip moisturizers, etc to a high up location that requires you, the sick person, to physically get up and reach for them so the SMSer cannot get to them and destroy, empty, dismember, unpackage, partake of, or otherwise mishandle.
5. Ignore your other feverish and delirious children calling pitifully for you because your SMSer is in the midst of a(nother) meltdown.
6. Casually lie to your SMSer as you rapidly smear ointment on her chin every hour or two, telling her it looks awesome (force your feverish eyes from dwelling on the emerging hole there, knowing that any undue attention being paid it, sympathy being given, exclamations of horror, etc, will only increase her rate of digging at it).
7. Clean the kitchen faithfully daily so that the stack of dishes doesn’t come close enough to the edge to tempt her.
8. Do not forget to clear the table of dirty plates after every meal or she may come wake you the one time you forget with last night’s chicken stuffed in her mouth and clinging to her lips. (The crumbs on the floor may be left all week, those will not be touched.)
9. Put away or at least unplug all appliances immediately after using them lest the SMSer burn down the house with, say, the toaster. (Don’t forget to take the knobs off your gas stove, too. Been there, smelled that.)
10. Be calm and cheerful as you spend your days getting your SMSer out of the mail, out of the silverware drawer, out of her sister’s face, out of the refrigerator, out of the trash, and so on and so forth, knowing that any sign of weariness or impatience or frustration will increase her frenzy.
11. Pray that you are allowed 6-8 hours of sleep at night whilst knowing that you will be lucky to get 4-6 hours (divided) on which to get well.
12. Watch as the days keep ticking by and you begin wondering if one or all of you will wind up in the hospital and asking out loud how you will get through this, to which your spouse answers: “we just will. We have no other option.”