Super low

Second blog of the day. Daniel just had his lowest low ever. He wasn't even feeling that low, he said, but when he tested he was 38. So I told him to stay still and calmly got the pixie stix (did you see that? calmly? yeah, right, only on the outside) and told him that the nurse at the hospital told me her T-1 husband was walking around with a low of 12 once.

Daniel said he was suddenly starving and wanted free food, like cheese sticks. After his pixie stick he had 2 cheese sticks and a piece of roast beef. He's blinking his eyes really hard and shaking his head -- trying to clear the spots from his vision because suddenly he's close to passing out. So he took just one glucose tablet while waiting for the 15 minutes to go by and when time is up he is at 72.

Night time shot is in 1/2 hour. Big snack tonight, I think.

My stomach hurts.

Adventures in Foodmaking

Isn't it huge? Doesn't it look like real bread? Well, except for the Mickey Mouse ears. I spend a lot of time with Adventures in Foodmaking. Since Daniel was diagnosed with celiac, he's been so good about adjusting to the gluten-free diet. Our biggest problem is... bread. I mean, he's a kid and he's going to school and has to bring lunch because 98% of the school lunches are gluten no-nos and he just doesn't eat salad. So... sandwiches sandwiches sandwiches...

At first I didn't even try to make bread. First I stopped off at Trader Joe's and found one loaf of gluten free bread. I went to the manager and asked if there were any more kinds of GF bread available. He said, "No, this is the only one we have and it is pretty awful. We basically keep it around for people who need GF food because if not we would have gotten rid of it a long time ago." Wow. Great recommendation, eh?

So I said to Daniel, "Let's just try it. Maybe this guy is a picky eater like your sister." He agreed. We tried it. It was NASTY. And we have found that most of the GF baked goods are very high in carbs. Daniel has not switched to basal bolus yet for his diabetes, so his carbs per meal or snack are limited. UGH!

So... Cupcake got the bread. Cupcake is so named because one day I looked out into the back yard and there, outside on the windowsill, is a beautifully frosted, slightly squished cupcake. I was about to ask the kids which one of them pulled this prank when I realized that none of the kids could have done this. There is a drop outside the window that goes down to our basement, and the area is surrounded by an iron fence. The kids just can't reach the windowsill.

Well, that was weird.

A few weeks later, there was a piece of toast with egg. Once there was brioche.

I finally caught the little rascal carrying a bakery item -- I think it was a muffin, across the lawn. (S)he headed towards our window, but saw me watching and stopped. AHA! Cupcake! Our little backyard friend.

Cupcake is now the recipient of all failed GF baked goods.

So, back to the Mickey Mouse bread. It is a sourdough recipe from the Bette Hagman The GF Gourmet cooks Comfort Foods cookbook. It smelled lovely while rising & baking, and rose beautifully up out of the loaf pans. It even tastes good! BUT... (you knew there was a but, didn't you?) the darn thing just falls apart. I cut pieces, make a sandwich for Daniel, and when he picks it up to take a bite it just crumbles around the sandwich innards. He has to eat it with a spoon.

So, the rest of this loaf may go to Cupcake, and I'll see what I can do to this recipe to make it better. A pinch more xanthan gum? A trace of corn flour? A dollop of club soda? Eye of newt? Hair of Cupcake?

It's priest. Have a little priest.

Is it really good?

Sir, it's too good, at least!
Then again, they don't commit sins of the flesh,
So it's pretty fresh.

-Sweeney Todd, A Little Priest

Restoratives

Yes! We had restoratives tonight. The class actually applauded the announcement. The moon is full and beautiful, and Mary, my teacher, said she feels the pull of it very strongly this month. It really is clear and crisp tonight, I can see the details of its surface, feel it calling to my heart center.

A classmate said that the moon tonight is farther away from earth than it has been in about a thousand years. And perhaps this distance causes a tighter bond? Whatever it is, it is magnetic and forceful. The class was chatty and jumpy, and we started off with a resting Prasarita Padottanasana (Wide-Legged Forward Bend) with our head on a block to calm the mind and center the thoughts. The pose had the intended effect.

Tonight we ended with supported bridge pose. I love that pose; it reminds me of being a child. I would turn upside down in a chair and let my back flow over the edge of the seat, my shoulders contacting the floor. Sounds more like a shoulder stand, I know, but I would have my feet against something to make a solid connection rather than pushing up into the air.

Tonight I opened my chest and heart and stretched over the folded blankets, letting my shoulders connect to the floor. My feet were supported by a block and firmly pressed into the wall, creating the bridge. Mary said that when you are feeling blue, this is a very strong pose for bringing you out of sadness. I thought about bridges and about this pose, how it turns me into a conduit. Bridges carry things from one side to another. Prana, emotions, stresses, thoughts... My body connected to something solid at two ends, allowing pent-up tension to flow out and be grounded on one side, and allowing serenity to flow from the other across the length of my being. I felt a physical flow as well as a spiritual one. This connection to earth and spirit brings me back to my mat day after day, week after week.

Namaste.

It's Only Tuesday

First day of school was yesterday and all three kids instantly are under the weather. ???? How does this happen? Hello, here is your syllabus and a few million germs. Please don't wash your hands and be sure to rub your eyes a lot.

Trash cans in both kids' rooms are overflowing with ragged lumps of tissue and the humidifiers are sighing and gurgling a misty lullaby.

If I look out the window behind me, I can see a full, or nearly full moon overhead. The night is slightly cool & humid, it's the kind of moonlight that used to see me sneaking out of my house when I was a teenager so I could sit on the lawn and soak it in, feel its magic. Moonbathing.

Full moons on yoga nights mean restoratives. Stay full one more night, moon.
One more night for me.

The Path

I’ve been thinking a lot about the road that led to this moment, the reasons why I have to write when I haven’t written in years. All of us walking on each of our individual cosmic paths, right at this moment, can turn back and look at the confluence of forces, at the many decisions, right turns, left turns, short cuts and the mires we have traversed. What has led me here? What has brought me to this moment that allows me to be capable of taking the next step?

Having a child – that wondrous act all of itself – rocks your world. Suddenly a heart beats separately, a life depends on you, and worlds open up inside your psyche that never existed before filled with tumbling rivers of caring and concern, radiant suns of the purest love imaginable, and dark chasms of fear for what you know is possible in this world, and how your children may be affected by terrible possibility. I never knew fear until my children were born.

Having a child with any type of difficult, chronic, or deadly illness is another life-changing event for the parent. It is a trip into a dark chasm.

I really can think of this experience as some kind of physical trip through difficult terrain. After Daniel was diagnosed with diabetes, I felt like I literally was at the bottom of a chasm. In that place there are a few of choices you can make.

Climb out & move on.

Climb out & run away.

Stay in the dark.

And the choice you make may well depend on the paths you traveled before you reached this scary place.

I have been lucky! Looking back, as far back as grade school, I wrote out my feelings, thanks to Ms. Morselli, my fourth grade teacher, who made our class put our feelings into words for every experience, good or bad. My grandma allowed me to experiment with food, to create appetizers, whip egg whites, and learn my way around a kitchen and cookbook. My mom first showed me how to do yoga. These small events changed the direction of my life.

I’m also not on this path alone. My husband & my three children each hold our families love & burdens together.

At Children’s Hospital, during those 3 days after Daniel was diagnosed, I could only do the most basic yoga to keep me going – pranayama, controlling the movement of the breath. Now, months later, I’m still using yoga to work the accumulated kinks out of the parts of my body that like to hold tension. I’m using my love of cooking to transform old recipes into gluten-free, delicious ones. And I’m using writing now, as a tool, to get the feelings out, to observe, in a more concrete way, the new shape of my life.

As I write this, I imagine that the steps I’m taking now to manage Daniel’s diabetes & celiac while juggling “normal” life – work, kids, schools, activities – will contain important lessons and skills for what lies ahead. Even the darkest moments give me something to carry forward, something that will do good later on.

Thanks to all the other bloggers out there who have inspired me – I hope to talk about you later in detail. For now, I’m a bit anxious. The first day of school is tomorrow. Three kids going in three different direction. Three busses at three different times. The day starts at 5:30 tomorrow morning, so good night for now!

Last Week

Last week, during the horrible heat wave, I had to get out of the house and take a walk because diabetes & celiac were all I did for a day and the kids were fractious and the heat jailed us. Even the pool was nasty, the water was too warm to be refreshing. When Matt came home I told him that I needed to go out for a walk and I needed to do it alone (rather than taking diabetes boy out for exercise). It was hot, but the sun had fallen over the edge of the trees so the only real heat I felt was what oozed up out of the sidewalk, the remains of the day. Everything had a burned smell to it and the grass was crispy; it sounded like I was walking across a snowy lawn. The smell sent me back to when I was a kid and I lived in Florida. We lived in Cape Canaveral, near where the astronauts took off, in some apartments off the main strip, A1A. I used to cross A1A to walk to school. It was a Rockville Pike kind of place, but this was the 1970's, so it was kind of kitschy, and glowed with neon at night. As I walked my neighborhood, a hot breeze sprang up, carrying with it McDonalds smells, Baskin Robbins, gas stations. A line of poetry ran through my head as I was carried back in time to 4th grade and A1A, and I tried to hold one line, then another in my head as I walked, but I said to the universe that it would really be helpful to have a pen with which to capture these words before I get distracted, as I so often do. Maybe 20 yards later--right in the middle of the sidewalk--a pen. I picked it up and scratched it experimentally across my thumb. Ink! I suppose I could write all over my hand, I told the universe as I resumed my walk, but paper would really be helpful. A few steps later I saw a flash of white to my left -- a paper towel. Yeah, I thought, not so good for writing. What I really need is lined paper. And before I turned the next corner, folded up on the grass at the edge of someone's lawn, was my lined paper. Dirty, a bit crumpled, but lined. I stopped now for a moment and the thought came to me that I should thank the universe for its gifts, and I did. And I wrote my accumulated bits of poetry quickly on the paper, walking slowly (walking while writing is not one of my strong points). When it was done, I tucked both in my pocket and thought that as long as the universe is handing out gifts tonight, I could really use a twenty because I never got to the banking machine today and I'm out of cash. Or a wad of twenties. Hmmm? I scanned the road ahead, the lawns to the side. No twenty. Ah well, I guess I caught my limit. I picked up the pace and walked off the day, the diseases, the petty bickering, the unclean house, the unpaid bills. One mile turned into two and the sweat swiveled its way down my neck and some of the troubles of the day stopped mattering so much. Then I came back round to my conversation with the universe and apologized for being so crass as to ask for cash. I guess it wasn't really a very nice thing to do. A bit tacky. And as I apologized, I saw another fluttering in another lawn, a small, flat... dollar bill. A one. Perhaps a lesson in tact. A tip. And I immediately thanked the universe once again, not for the actual money, but for its kind attention, because sometimes the best gift is just knowing that you are, in some small way, being heard.

Hot nights and neon
I remember the Holiday Inn sign on A1A
with the star on top,
the buzzing lights
of other greasy spoons.
My dad called it "prole food."
A half mile walk to my elementary school
on the beach, it was called
Cape View
and still may be.
I could Google it to see
if it still is, still has a view
of that jut of land where the rockets launched,
another star in the sky.

School Daze

Two school orientations down and one to go! Daniel caught his early morning bus without a problem. I followed him to school so I could attend a parent meeting at 7:45 a.m. only to find out that there really wasn't a 7:45 a.m. parent meeting, only the parent breakfast scheduled at 9. This after I called last week to confirm that indeed there were two separate events, the parent meeting AND the new parent breakfast/info session. Hmph. So I had more than an hour to kill at Northwood High, and decided to check in with the school nurse to make sure I had all the diabetes ducks in a row for Daniel. While in her office Nora calls from her bus stop to say that her bus never showed up and there is another kid there with her mom who will give her a ride to school and can she go? Agh!!

Parental dilemma. Nora is a well-rounded, intelligent girl. The girl at the bus stop is someone whom she met at the arts orientation last week. I don't know her name. I don't know her parent. Do I tell my daughter to get in the car with a stranger?

In the end I trust Nora's intuition, but tell her to call me when she gets to her school.

I move on to talk to Daniel's guidance counselor, and then go to the media center to wait for the parent meeting, where I swig intensely strong Starbucks coffee to counteract the intensely soporific slug of Benadryl that I took earlier in the morning because I was feeling hivey.

Meeting time approaches. No call from Nora. She should be at school by now. After a few frantic phone calls to 1) husband, 2) middle school office, 3) transportation office, 4) husband again, my phone beeps with a message. The middle school office found Nora. I am relieved AND I want to throttle her!

Tomorrow is Dominic's elementary school orientation. Dominic is kissing me as I type, making it almost impossible to see the screen. So it's time to go, time to prepare dinner, time...

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.