May 30th, 2009A loud-breathing presence at my bedside, I open one eye. A small face is peering at me. I attempt to focus through the pre-dawn darkness on my 19 month old, Samuel, as he shouts "JUICE!" I try pulling him into bed in the vain hope that he will simple cuddle up and go to sleep. Nothing doing, he struggles back to the floor. Through squinted eyes I can see him retrieve my water cup from the bedside table and gulp down the last of the water with shaking hands. My brain is starting to send alarm signals.
Samuel shouts, "Juice" again, and then quivering from head to toe, throws the now empty cup. The cup bounces comically off my head with such force that it ricochets and knocks my bedside lampshade askew. Now I am wide awake. Samuel is not quivering with rage, he is quivering from a blood sugar crisis. His first one. I'm too familiar with the symptoms of hypoglycemia in Jack not to recognize them in Sam, especially when hit in the head. A handful of raisins later a suddenly calm Sam politely asks for breakfast.
Sam's first crisis occurred almost exactly a year after Jack's first hospitalization. A year in which we were told that Sam was probably fine, probably free from the genetic disorder that Jack has. It was also the morning of a chapter meeting of The United Mitochondria Foundation. I went on to the meeting (my first one ever), feeling unreal from the events of the morning. Have you ever had allergies that made your eyes water uncontrollably? After I got to the meeting, that's what happened to my eyes. They just started "leaking". I quietly went to the rest room a couple of times and held paper towels to my eyes- willing them to behave, only to have them start watering again within 10 minutes. The meeting's featured speaker spoke on grief. She stressed dealing with the grief of chronic illness or your grief would "splash" over into other areas of your life when you least expect it. Duh, I was the better than any power point presentation, exhibit A in "splashing".
During the following brunch I took the opportunity to corner the geneticist who is on the board of the local UMDF chapter. He'd seen Jack before, so I re-introduced myself and asked if a normal child in the absence of an acute illness could just happen to have episodes of blood sugars in the 40's that resolve with carbohydrates. A long pause followed, during which I'm sure he was thinking something along the lines of, "Crap, she's already looks stressed and she's asking me a loaded and stupid question, and the door to the room is blocked by the bloke eating cake." He of course advised me to get in touch with our doctors and start Samuel on corn starch at night until he was seen...
My eyes continued to leak off and on for a couple of days. I wasn't prostrated on my bed with flower petals scattered across the floor during this time. I was cracking jokes with Greg and the kids, doing chores- doing all the normal weekend stuff. Just occasionally my eyes would start streaming. It was completely unlike anything I've experienced before. Samuel, whom we had thought was our round, sweet, sturdy, healthy, bonus-baby was suddenly all those things minus the healthy. Yet at the same time I knew we were so blessed to already know the basics of how to recognize and handle metabolic issues.
I knew that Samuel's diagnosis would be difficult. Our family doesn't bother with garden variety illnesses. I was right, a few months later and we are working with a diagnosis of Ketotic Hypoglycemia for Samuel, but we don't really know. Lately he's been having more frequent morning episodes of hypoglycemia even on his corn starch regime. I'm watching, praying and researching, but I'm not "leaking" anymore. However, I don't think it was such a bad thing. Embarrassing perhaps, but the slow release of tears as I went on with normal life was a bizarrely helpful way to process my grief and fears. Moms are all about multi-tasking, I just never thought to multi-task grief before.
