Glycogen Storage Disease – StarchWars

How do You Wake Up?

Posted on 13. Sep, 2007 by Jillian in Glycogen Storage Disease, Glycogen Storage Disease Type 1A, corn starch

I think most GSD parents who are responsible for all or most of the night time cornstarches have a constant subconscious fear of sleeping through the alarm. I’ve even known a certain Aunt Bonnie who, after accompanying us to Florida, woke up in a cold sweat terrified that she missed giving someone their 2am. This wouldn’t be so bad except it had been weeks since she’d seen the boys- and she lived in a different State. But I digress.

10. Set an alarm clock. Nice, but if it’s too close it’s easy to roll over and turn it off in your sleep then call the manufacturer in the morning and scream at them for making a defective clock. Don’t they understand how important cornstarch is?!?!?

9. Place the alarm clock across the room. Somehow we could still sleep walk our way through turning it off (or at least pressing snooze) and climbing back into bed.
8. Set two alarm clocks. Our first alarm goes off in the boys’ room just across the hall. If that isn’t sufficient to wake us at 2am, we have another, set 10 minutes later, that goes off in our room.

7. Booby Traps. The boys often like to covertly help us after going to bed by placing booby traps such as legos and sharp plastic toys they’ve scavenged from various birthday goody bags scattered strategically in the path to the alarm clock. This way they are certain we will step on as many as possible and be fully awake during the brief sojourn into their room to turn off the alarm- ensuring we are painfully awake at 2am.

6. Setting your cell phone alarm to the sound of your child’s voice saying “Mommy, it’s time for my cornstarch. Mommy, get up and get me my cornstarch.” etc. Ingenious. How could you possibly sleep through your child’s angelic voice pleading for cornstarch? After an entire day of three whinny boys (#4 can’t talk yet) saying “Mom… I wanna pony. Mom…. how come Dallin gets to be on a feeding pump and I don’t! Why don’t butterflies have purple eyes?” etc., I’m afraid I’d be more likely to tune out their voices than an annoying beep at 5am.

5. A quick shake. For us, that’s usually my husband grabbing my foot to make sure I’m up to starch the boys while he gets Luke out of his crate for a bladder brake. Others, however use an innovative alarm clock called Shake Awake that actually vibrates- hard. The advertisement shows a woman serenely sleeping with the alarm on the bed next to her pillow. I’ve heard of other GSDers actually having to put it under their pillows to increase the cornstarch jolt. As if we’re not shaky enough from sleep deprivation. However, it is particularly useful when trying not to wake an entire house, especially when vacationing at Grandma’s house.
4. A telephone wake-up service. Not limited to hotels anymore, there are plenty of agencies like Wake Up Land where you can pay a small fee and be woken up at a certain time every day. Who knew there were others as desperate as us to actually look for something like that.

3. The Clocky Robotic Wheeled Alarm Clock. This wacky alarm will actually roll off of your bed side table and then, like your poor meatball on top of spaghetti, will roll right out your door. I’m considering giving this one a try if not for any other reason than to watch my husband chase the thing around trying to pounce on it and finally turn it off at dark-thirty in the morning. The mental image is priceless.

2. The ball shooting alarm clock. This is my personal favorite suggestion, I’m just not sure if it’s legitimate. Supposedly you can aim it at your head and it will shoot balls at the appropriate time to ensure that you are properly awake and seriously grumpy/ lumpy. My google searches didn’t come up with anything for this one, but again, fun mental image. As long as the alarm isn’t aimed at me.

And the Top Answer is…

1. Find a poor relative/ employee you can guilt into doing cornstarch for you. Nothing is easier, or more peaceful, than finding someone you can trust to either stay up all night for starch times, or at least wake up instead of you. We currently get one full night of sleep a week, and it is heaven sent. The only problem is that it is usually our date nights also, so we end up going out late and consequently going to bed late. But somehow the lack of stress for that one night alone is enough to at least get us through the next week.

Thank you Aunt Bonnie!