Working on an article

This life is never easy, complacent, or just what you want it to be... why should it be? Without challenge, how would we grow? And yet I ask for challenge with one hand behind my back, fingers crossed, against what might come.

I'm trying to put my thoughts and actions into words and have been working on what might be an article in the near future. In the past few months, my son's diabetes & celiac seem to rule the household, and I'm trying to put these diseases in their place. To let them be part of what we are as a family, part of the background in our tapestry, not the main design.

This is what I've got so far:

I bought a caster board the other day, ostensibly for my kids, but with the great desire to master it myself. A caster board is something you stand on to ride like a skateboard, but there are only two wheels on the bottom. They are caster wheels, like the kind at the bottom of your grocery store cart, and they spin around. The board has two segments, front and back, that are connected by a metal pole. When you step on the board you can rotate the segments around the pole in the same direction or in opposition to each other to make tight turns. It’s like a skateboard, but not like a skateboard. You can stand on a skateboard and be perfectly still, and have balance. In order to gain balance on a caster board, you have to move. Your balance starts to come when you wiggle your hips, causing the casters to wobble back and forth. In this way you move forward, you turn, and even go up hills. It’s not for the faint of heart, just like life. You should always wear a helmet.

Last month my fourteen year old son was diagnosed with type 1 diabetes. I had noticed that Daniel was looking skinny, and even commented to my sister in law that he must be going through some major growth spurt. “He’s all angles, elbows, & knees,” I said. “I bet his pants will be high-water tomorrow, and then he’ll start filling out.” Instead, he just got thirsty. And that didn’t set off warning bells, because diabetes was so far off my radar that I didn’t know there should be warning bells. Daniel complained that he was tired because he kept getting up at night to go to the bathroom. “Well,” I said, “quit drinking so much! You are going to the bathroom because I always see you slamming down water, juice, seltzer, Gatorade… Stop drinking before bedtime!”

“I can’t,” he said. “I’m thirsty.” Still I didn’t take notice. No bells. Next, Daniel came down with an apparent sinus infection, and we went to the doctor for antibiotics. They helped initially, until Daniel complained of a funny taste in his mouth. He was still tired, and had a headache that didn’t quit. We switched antibiotics. I tried to get him to rinse his mouth with mouthwash to get rid of the taste, but it just made him throw up. This was a Saturday. On Sunday I started to feel queasy and spent most of the day on the couch. Daniel threw up again, and I figured we both had the stomach flu. Monday morning we both were praying to the porcelain gods, and we stayed home from work and school.

By Tuesday I was on the road to recovery, and Daniel was still in bed. He had a constant frown on his face, and his skin had a funny pallor. He was tired and drawn. I asked if he felt any better than the day before, or worse. He said worse, so I made another appointment with the doctor. We drove over mid morning, and I had to hold onto Daniel to help him get across the street to the doctor. He said it was exhausting just walking around.

Now, I don’t know if you know teenagers, but they are prone to exaggeration. Parents have to slice through the ribbons of high drama exploding from a teen’s daily experience to find out what is really happening. So I looped my arm through Daniel’s and cheerfully said, “one foot in front of the other, we’re almost at the doctor’s.” I think it was only when I saw the doctor and the nurse looking at Daniel – saw the looks on their faces – that the first trickles of fear crept up my scalp. Daniel got on the scale, and we found that in the two months since he had last been to the there for his annual physical, he had lost 13 pounds. He was not experiencing a growth spurt; he was positively skeletal. Doctor Sakai told me that he was calling an ambulance and sending us to the hospital because if we arrived in an ambulance we wouldn’t have to wait in the waiting room, and we needed immediate admittance. He said it was diabetes, but I just didn’t know what he was saying. After “ambulance” and “hospital,” other words bounced off my ears.

I’ve always tried to stay balanced, or centered, in my life. For more than 20 years I have taken yoga classes to achieve inner peace and both mental and physical balance. I can stand on one leg for ages and, for most situations, breathe my way to calmness. But standing on solid ground only offers one kind of challenge. For a more difficult test, one can strive to achieve balance on the ice, laced onto blades and letting go of the wall. Still manageable, IMHO. But for thrill seekers, there’s more. I’ve never liked trying to achieve balance when the world rushes past full tilt, as in skiing, surfing, or skateboarding. Perhaps it is a control issue; why rush willy nilly over bumpy ground with hidden potholes, wipeout trees, or crushing waves… only to do it again? I’ve never been a speed demon. Isn’t life fast enough?

I followed the ambulance to the hospital on automatic pilot. In the car, I called my husband first. Then my parents and my in-laws to ask about family history. My husband arrived at the hospital soon after I did, and after the ER doctor told us that on sickness scale of 1 to 10 with 10 being the sickest, Daniel was at about a 9. He wanted to transfer us to Children’s National Medical Center because they would provide a higher level of care, which Daniel needed.

Daniel is my oldest child. I have two other children, Nora (10) and Dominic (6) who were at school while all this was going on. Daniel, Nora, Dominic and I spend much of our time together because I work at the small school that they all attended at the time. My husband and I decided that I would ride in the ambulance to Childrens, and he would pick up the other kids at school. Daniel and I got to Childrens at the same time the Queen of England was visiting; all the elevators were locked down and I couldn’t leave the Emergency area. While the nurses were doing their initial readings, I went outside to make a couple of phone calls. I needed to inform family and work that we would be at the hospital for 3 days. I had to pass along responsibilities to friends and coworkers. I stood outside the hospital and blanked out – couldn’t figure out who I could call to watch my other kids so my husband could come to the hospital. Of course, my cell phone battery was almost dead.

Luckily, my husband’s brain was still working, and he arranged for child care. He brought me fresh clothes and took care of everything at home. I sat by Daniel’s side in intensive care. At Children’s NMC, you are allowed to stay up all night by your child in Intensive care, as long as you can stay awake. If you need to sleep, there are rooms where you can camp out on chairs that open up into beds. Daniel was exhausted, and fell asleep, so his nurse, Naslene, helped me claim a chair and found some sheets. I conked out somewhere near midnight for a short time. There were quiet murmurs throughout the night in a few different languages as moms, dads, and siblings sprawled and yawned their way through the late hours. At about 3:30 the cell phone of the lady next to me started ringing. She slept through it, even though she had been whispering rapid Spanish only a half hour before. I think it was about the 5^th time that it rang that I reached over and touched her foot. She started, grabbed her phone, and left the room. Naslene came for me at 4:30 a.m. because Daniel was asking for me.

Diabetic ketoacidosis is a dangerous condition that can occur when a person’s pancreas stops making insulin. When you eat, your blood sugar rises. Your pancreas—specifically the islet cells in your pancreas—have the job of producing insulin to keep the blood glucose level in a normal range for the human condition. Insulin is like a key that opens the cells and allows them to absorb the glucose, thereby giving your body the nutrition it needs to grow and thrive. If the insulin is not being produced, your glucose level goes up and your body reacts by trying to flush it out of your system. You get thirsty. You pee a lot. At the same time, your body is not getting the nutrition it needs, so it starts breaking down your fat to survive. A by-product of breaking down your fat is acid, and this acid can give you heartburn, a stomach ache, and make you vomit. You experience rapid weight loss. You have no energy. You are in diabetic ketoacidosis.

That's all for now.. I've kind of been in a holding pattern. Summer is busy with all the kids at home, so much to do , trying to fit work in as well. Fifteen minutes here, half an hour there to try to get thoughts down. I don't know how other people fit writing into their lives, but maybe blogging is the easiest way? Time to give it a try.