It was hard to let Daniel go off to Boston this weekend, even though he was with his dad. I knew there would be time where the kids would be buddying up and off exploring. That's not anything new for him; he's done that on other field trips in the past -- before diabetes. Before celiac.
These teenage/high school years are tough on parents in so many ways. It is natural for our children to learn to care for themselves, and to break through the boundaries of comfort into a new, risky world. It is right for them to do this, to push away, to cause the little arguments that separate from the nest.
Really, it was only a couple of years ago that I did the same thing. No one kicked harder, screamed more, and fought against parental authority than I did. So I remember. I *know*.
Now I'm getting it back, aren't I? Not that Daniel is mean and nasty like I was; quite the contrary. We are so blessed to have an excellent relationship with him, an open, caring, communicative connection. I think that some of that is a by product of the diabetes diagnosis within the last year. We've had to rely on each other in a new, raw way that only served to strengthen our parent-child bond. I feel his needs now with the same intensity I felt when he was a newborn, the kind that mellows as children grow older and more independent. Fighting this disease brings out that early, ferocious motherlove. At the same time I see Daniel starting to slip through these bonds. Part of him holds on, I know, because he is learning a new way of life, and is thankful for the love and support Matt and I give him. But part of him is breaking away, as he should.
It's heartbreaking and beautiful at the same time to watch your child transform into an adult. You see it physically first, his arm and leg bones lengthening; his head changing shape, giving him a more focused, less wide-eyed look. Then there is a change in attitude. He's helping without asking, opening doors & carrying packages. He's discussing world events. He sees outside the bubble of his inner world. He connects with people who have sympathetic views of the world. He speaks easily with both younger kids and adults. He is thinking of who and what he will become. Yet he is still forgetful, leaving blood testing strips staining the kitchen table, and assignments for school sitting on the printer. He growls at his younger brother for touching his stuff. He is caught in between one age and the next.
So often we get wrapped up in our day to day routine. Get to school, get to work, pay the bills, worry about tomorrow. Spring break ends tonight, and the wheels will start spinning faster. I guess I just wanted to take a snapshot of this moment, before Daniel leaves childhood entirely, to appreciate him for his successes and his faults, for his bravery and his retreat. I hope I can let go gracefully, so that he will come back, fully grown, on his own to reconnect with his parents on a different, more complex level. Always in love, always in beauty.
Blogging as meditation: random thoughts on motherhood, mindfulness, yoga, poetry, food, and life.
Sunday, March 30, 2008
Saturday, March 29, 2008
It's Okay...
Life is never dull, is it? The damned celiac causes such a nasty reaction when Daniel is glutened. I kept telling Matt to get Daniel to sip some soda, and Daniel kept saying that his stomach hurt too much to take a sip. I finally told him to just take a swig and hold it in his mouth for a minute. Let the sugar cross the membranes -- it would help keep his blood sugar from dropping precariously low. That, plus a pixie stick, kept him out of the hospital last night.
The worst was that Daniel felt so damned guilty about this. He asked the food vendor about the lamb he ordered, but didn't think to ask about the rice. And even though what I think of as *real* rice pilaf does not have pasta in it, the rice he ordered must have had it. They put in pasta that looks like pine nuts.
I told him that it is certainly a lesson learned, and I'm sorry that it was such a tough lesson. But that he has to remember that 95% of the people he asks about food will know nothing about gluten. Or they may think, "yeah, I know someone who can't eat bread." But they won't think about pasta, or soy sauce, or barley malt, or some of the other things that can cause a reaction. So Daniel has to be on top of all this information, or just go to a place that advertises gluten-free food.
It sucks, and it's more than he should have to deal with. But the good news is that he was able to get some sleep after midnight, and was fine at breakfast. He had a low after breakfast, but a minor one, and moved on. He's with the gang, field-tripping through Boston, having a ball.
The worst was that Daniel felt so damned guilty about this. He asked the food vendor about the lamb he ordered, but didn't think to ask about the rice. And even though what I think of as *real* rice pilaf does not have pasta in it, the rice he ordered must have had it. They put in pasta that looks like pine nuts.
I told him that it is certainly a lesson learned, and I'm sorry that it was such a tough lesson. But that he has to remember that 95% of the people he asks about food will know nothing about gluten. Or they may think, "yeah, I know someone who can't eat bread." But they won't think about pasta, or soy sauce, or barley malt, or some of the other things that can cause a reaction. So Daniel has to be on top of all this information, or just go to a place that advertises gluten-free food.
It sucks, and it's more than he should have to deal with. But the good news is that he was able to get some sleep after midnight, and was fine at breakfast. He had a low after breakfast, but a minor one, and moved on. He's with the gang, field-tripping through Boston, having a ball.
Friday, March 28, 2008
Speaking too soon
Shit. Matt just called. Daniel may have been glutened. He is feeling nauseous. I just google-mapped their location and found the closest hospital, and Matt is getting taxi numbers just in case. Finding some soda for him to drink, just in case.
You know, the last time Daniel went to an overnight with his youth group he ended up in the hospital after bolusing for twizzlers, which he didn't know had wheat in them. He tossed his cookies after bolusing, then had a low that wouldn't quit and needed I.V. sugar.
I hate celiac. I hate diabetes. I hate not being there.
You know, the last time Daniel went to an overnight with his youth group he ended up in the hospital after bolusing for twizzlers, which he didn't know had wheat in them. He tossed his cookies after bolusing, then had a low that wouldn't quit and needed I.V. sugar.
I hate celiac. I hate diabetes. I hate not being there.
Spring Break
Spring Break.
Termites: The termites have been blasted. The carpenter tore apart the wall. He then showed up at odd, unplanned times, and put it back together again. I won't complain (anymore). The wall is done.
Yet: I will complain about the cost: OUCH! OUCH OUCH OUCH! I hate unexpected expenses.
Blood: The other morning I had to take Daniel & Dominic to the lab before breakfast for cholesterol blood check. Dominic was also getting his test for celiac. The day before I made deviled eggs with the last of the Easter eggs and Daniel ate 4 of them. that's 8 halves. How's that going to look on his cholesterol test? As for the celiac... well... I'm just doing some deep breathing.
UU Trip: 4:30 a.m. Wake up Matt & Daniel. Tell them to get dressed & make a final check of the bags. Send them to the airport. Daniel has gone off to Boston on a UU 9th grade trip, visiting all kinds of wonderful Unitarian sites in the city. Matt is with him, chaperoning. He's already called me 3 times today to let me know that Daniel is doing okay. I'm waiting for the last call of the day. (Later edit -- they just called. Daniel's numbers have been good today, just slightly higher than range, about 170. But I'll take that over lows, especially when he's traveling. He had lunch at a bakery of all things -- not a gluten free one, either -- but they had a chef's salad with no croutons so he ate out the meat & cheese. For dinner the gang went to Quincy Market and he found a Greek place & got lamb kebab with rice. He actually went off with the kids, and Matt stayed at the B&B to have dinner with the grown ups. Cell phones were on. Daniel had his Calorie King book in his kit. He had a buddy. Everyone was fine. Daniel even quizzed the guy at the Greek food stall to make sure that the rice "pilaf" was gluten free, because pilaf will sometimes have orzo noodles in it. So all is well, and my shoulders are a little less tense.
Cherry blossoms: they are blooming. I think we will brave the crowds tomorrow and head downtown to take in some prime cherry blossom viewing.
Kites: The kite festival is also tomorrow. How are they gonna get those things in the air without wind?
Mud Hut: Today we went to the Mud Hut to paint some pottery. 3 pieces = more than $70. I am in the wrong business.
Etsy: My sister in law, Kathryn, introduced me to Etsy. It is dangerous. Tonight she showed me pouncing. Go to www.etsy.com and look at the menu that goes down the left side of the page. Click on pounce. Then just pounce and pounce again. I'd spend all night pouncing, but then I'd never write anything here! You try it. See how long you pounce.
Walking: We have walked a lot over the past few days. The weather has been inviting. I took the kids to Great Falls (see my flickr pictures) and we climbed rocks, spotted lizards, admired wildflowers, and picnicked. Today I took Nora & Dominic on a trail that followed the northwest branch of the Potomac river. We saw a dog take a swim, a dead deer with most of the meat gone (but not all!) and its ribs turned, U-shaped, up to the sky. It smelled awful and Dominic almost threw up but he held it together and we got upwind. After the deer carcass, the views were rather lovely: a lazy river meandering through a forest full of newly budded spring trees. (Can you say allergies?) The kids bounded down a hillside, pointing and shouting, and then crossed a fallen tree trunk over a steep drop (that scares the shit out of me, but the kids were halfway across as I'm yelling, "Don't go across that tree!!!" so I had to follow them and it pissed me off how they make it look so easy but walking across fallen tree trunks over a steep drop makes me freakin' dizzy). We could have continued on for miles. The woods were lovely, dark and deep, as Robert Frost said. But we had promises to keep (I told my friend I'd let her come over and use my computer printer because hers died) and miles to go before we could go to sleep (miles and miles, especially if you've gotten up at 4:15 a.m.).
Pizza: The pizza place near us had this deal where if you save the coupons off of 10 of their pizza boxes, you could bring them in and then get a free cheese pizza. I had 10 coupons. Dinner for the three of us cost $2.65 (three drinks) plus $2.50 (video and toy machines for .50 or .25 for the kids).
Eyes: they feel like they are about to fall out of my head. I've done the miles, so now I can sleep. Good night, everybody.
Termites: The termites have been blasted. The carpenter tore apart the wall. He then showed up at odd, unplanned times, and put it back together again. I won't complain (anymore). The wall is done.
Yet: I will complain about the cost: OUCH! OUCH OUCH OUCH! I hate unexpected expenses.
Blood: The other morning I had to take Daniel & Dominic to the lab before breakfast for cholesterol blood check. Dominic was also getting his test for celiac. The day before I made deviled eggs with the last of the Easter eggs and Daniel ate 4 of them. that's 8 halves. How's that going to look on his cholesterol test? As for the celiac... well... I'm just doing some deep breathing.
UU Trip: 4:30 a.m. Wake up Matt & Daniel. Tell them to get dressed & make a final check of the bags. Send them to the airport. Daniel has gone off to Boston on a UU 9th grade trip, visiting all kinds of wonderful Unitarian sites in the city. Matt is with him, chaperoning. He's already called me 3 times today to let me know that Daniel is doing okay. I'm waiting for the last call of the day. (Later edit -- they just called. Daniel's numbers have been good today, just slightly higher than range, about 170. But I'll take that over lows, especially when he's traveling. He had lunch at a bakery of all things -- not a gluten free one, either -- but they had a chef's salad with no croutons so he ate out the meat & cheese. For dinner the gang went to Quincy Market and he found a Greek place & got lamb kebab with rice. He actually went off with the kids, and Matt stayed at the B&B to have dinner with the grown ups. Cell phones were on. Daniel had his Calorie King book in his kit. He had a buddy. Everyone was fine. Daniel even quizzed the guy at the Greek food stall to make sure that the rice "pilaf" was gluten free, because pilaf will sometimes have orzo noodles in it. So all is well, and my shoulders are a little less tense.
Cherry blossoms: they are blooming. I think we will brave the crowds tomorrow and head downtown to take in some prime cherry blossom viewing.
Kites: The kite festival is also tomorrow. How are they gonna get those things in the air without wind?
Mud Hut: Today we went to the Mud Hut to paint some pottery. 3 pieces = more than $70. I am in the wrong business.
Etsy: My sister in law, Kathryn, introduced me to Etsy. It is dangerous. Tonight she showed me pouncing. Go to www.etsy.com and look at the menu that goes down the left side of the page. Click on pounce. Then just pounce and pounce again. I'd spend all night pouncing, but then I'd never write anything here! You try it. See how long you pounce.
Walking: We have walked a lot over the past few days. The weather has been inviting. I took the kids to Great Falls (see my flickr pictures) and we climbed rocks, spotted lizards, admired wildflowers, and picnicked. Today I took Nora & Dominic on a trail that followed the northwest branch of the Potomac river. We saw a dog take a swim, a dead deer with most of the meat gone (but not all!) and its ribs turned, U-shaped, up to the sky. It smelled awful and Dominic almost threw up but he held it together and we got upwind. After the deer carcass, the views were rather lovely: a lazy river meandering through a forest full of newly budded spring trees. (Can you say allergies?) The kids bounded down a hillside, pointing and shouting, and then crossed a fallen tree trunk over a steep drop (that scares the shit out of me, but the kids were halfway across as I'm yelling, "Don't go across that tree!!!" so I had to follow them and it pissed me off how they make it look so easy but walking across fallen tree trunks over a steep drop makes me freakin' dizzy). We could have continued on for miles. The woods were lovely, dark and deep, as Robert Frost said. But we had promises to keep (I told my friend I'd let her come over and use my computer printer because hers died) and miles to go before we could go to sleep (miles and miles, especially if you've gotten up at 4:15 a.m.).
Pizza: The pizza place near us had this deal where if you save the coupons off of 10 of their pizza boxes, you could bring them in and then get a free cheese pizza. I had 10 coupons. Dinner for the three of us cost $2.65 (three drinks) plus $2.50 (video and toy machines for .50 or .25 for the kids).
Eyes: they feel like they are about to fall out of my head. I've done the miles, so now I can sleep. Good night, everybody.
Labels:
blood test,
Boston,
carpenters,
cherry blossoms,
dead deer,
Etsy,
expenses,
kids,
Kites,
long walks,
Mud Hut,
nature,
Spring Break,
termites,
UU
Wednesday, March 26, 2008
Great Falls
Today was such a gorgeous day. The kids and I went to Great Falls, on the Maryland side of the Potomac River. I put the pictures on my flickr site. After climbing a few gazillion rocks, Daniel felt low so he tested. He was only at 80, but felt like he was dropping so he popped a couple of glucose tabs. The yukky feeling didn't go away, though. Nora & Dominic could have stayed there all day, exploring the many trails and climbing rocks until sunset. But after a picnic lunch and a quick visit to the museum, we packed it up & went home.
Daniel had a wicked headache. He took some advil & had a rest. Afterwards, he felt better.
When Daniel was first diagnosed with diabetes, it was after being misdiagnosed with a sinus infection (the doctor) and a stomach flu (that was my mistake). Now whenever he feels funny I'm always trying to figure out whether it is the diabetes or something else? Or perhaps the diabetes is making something else feel weirder than usual? It's frustrating for him, it's frustrating for me.
We all enjoyed the day, nonetheless. It was a gift to be with the kids, to be in nature, to see the power of the river.
Daniel had a wicked headache. He took some advil & had a rest. Afterwards, he felt better.
When Daniel was first diagnosed with diabetes, it was after being misdiagnosed with a sinus infection (the doctor) and a stomach flu (that was my mistake). Now whenever he feels funny I'm always trying to figure out whether it is the diabetes or something else? Or perhaps the diabetes is making something else feel weirder than usual? It's frustrating for him, it's frustrating for me.
We all enjoyed the day, nonetheless. It was a gift to be with the kids, to be in nature, to see the power of the river.
Monday, March 24, 2008
Six Word Memoir
Jillian tagged me to do the six word memoir! Here are the rules:
1) Write your own six word memoir; 2) Post it on your blog and include a visual illustration if you’d like; 3) Link to the person that tagged you in your post, and to the original post if possible so we can track it as it travels across the blogosphere; 4) Tag at least five more blogs with links; and 5) Don’t forget to leave a comment on the tagged blogs with an invitation to play!
Growing: girl, lover, mom. Ever unfurling.
I tag KK, Jules, Kelly (K2), Sara, and Ashley!
Three posts in one day. Phew!
1) Write your own six word memoir; 2) Post it on your blog and include a visual illustration if you’d like; 3) Link to the person that tagged you in your post, and to the original post if possible so we can track it as it travels across the blogosphere; 4) Tag at least five more blogs with links; and 5) Don’t forget to leave a comment on the tagged blogs with an invitation to play!
Growing: girl, lover, mom. Ever unfurling.
I tag KK, Jules, Kelly (K2), Sara, and Ashley!
Three posts in one day. Phew!
Second Post of the Day
I just read Shannon's blog and had to do one more post.
Dominic came home from school the last day before spring break and said that his friend told him that if you go into the bathroom at night and turn off all the lights and say "Bloody Mary" three times, then Bloody Mary would appear in the mirror and throw a baby at you. If you don't catch the baby, then you will die when you are 13. And, by the way, did I know that Bloody Mary was a queen who got her head cut off?
What the hell are they learning in first grade these days?
Anyway, to prove him wrong, I went into the bathroom, turned out all the lights, and said "Bloody Mary" three times. Nothing happened. No baby. I told him as much. (By the way, what happens if you catch the baby? Do you get to keep it?) He said I didn't shout Bloody Mary at the top of my lungs, so it didn't work.
That's me. Always doing thing wrong...
Field Trip
Daniel is going to Boston on Friday on a field trip with his church class. It's a whirlwind Unitarian weekend, visiting many Boston/Unitarian sites. My husband is one of the chaperons.
I'm nervous! I won't be there! Yes, my husband is going, I know. But his internal alarm doesn't go off at blood sugar testing times. I told Daniel yesterday that he really has to step up and take responsibility for setting alarms, remembering to test, not losing his testing kit.
I called the airline, and the customer service agent was very helpful. We've never before had to deal with carrying medical supplies on trips. If anyone has any tips/suggestions, I'd certainly appreciate it. He will also be carrying some gluten free breakfast bars/power bars in case there's any delays and he needs food. And, of course, pockets full of candy. I have also been online researching gluten free choices in the Boston & Quincy Market areas.
It is so hard to take my sticky fingers off the controls. It's like the whole damned world would just stop spinning if I stopped juggling for a few minutes. Yet... I'm also going to have 3 days where I won't have to check my watch, nag about blood sugar testing, check the travel kit, prepare the gluten free stuff.
I'm going to go wild. I'll turn off that alarm clock...
Labels:
airlines,
alarm clock,
Boston,
celiac,
diabetes,
field trips
Saturday, March 22, 2008
We're Here
It's not like it is poetry week, or month, or whatever. Poetry is all around us, all the time. I used to drive family members crazy by breaking out into song all the time (there seems to be a song from a musical to cover just about anything). It is just as easy to break out into poetry.
I'm a little stressed over expenses these days. The termite hit was pretty large; it blows the budget all on its own. The carpenter has been fixing the room for a couple of days now and is still not done, so I don't even know what that total will be. *sigh* But it is spring, we have our family, the flowers are blooming. Daniel's blood sugars are in range for a few days now. It's spring break. I'm home with my kids for a week. The weather will warm up. A trip to Great Falls is on the agenda. Yet there isn't actually much of an agenda. The clock can move more slowly this week. We have each other. That, of itself, is a little miracle.
Here's a poem by the wonderful Molly Peacock:
Little Miracle
No use getting hysterical.
The important part is: we're here.
Our lives are a little miracle.
My hummingbird-hearted schedule
beats its shiny frenzy, day into year.
No use getting hysterical--
it's always like that. The oracle
a human voice could be is shrunk by fear.
Our lives are a little miracle
--we must remind ourselves--whimisical,
and lyrical, large and slow and clear.
(So no use getting hysterical!)
All words other than I love you are clerical,
dispensable, and replaceable, my dear.
Our inner lives are a miracle.
The beat their essence in the coracle
our ribs provide, the watertight boat we steer
through others' acid, hysterical
demands. Ours is the miracle. we're here.
I'm a little stressed over expenses these days. The termite hit was pretty large; it blows the budget all on its own. The carpenter has been fixing the room for a couple of days now and is still not done, so I don't even know what that total will be. *sigh* But it is spring, we have our family, the flowers are blooming. Daniel's blood sugars are in range for a few days now. It's spring break. I'm home with my kids for a week. The weather will warm up. A trip to Great Falls is on the agenda. Yet there isn't actually much of an agenda. The clock can move more slowly this week. We have each other. That, of itself, is a little miracle.
Here's a poem by the wonderful Molly Peacock:
Little Miracle
No use getting hysterical.
The important part is: we're here.
Our lives are a little miracle.
My hummingbird-hearted schedule
beats its shiny frenzy, day into year.
No use getting hysterical--
it's always like that. The oracle
a human voice could be is shrunk by fear.
Our lives are a little miracle
--we must remind ourselves--whimisical,
and lyrical, large and slow and clear.
(So no use getting hysterical!)
All words other than I love you are clerical,
dispensable, and replaceable, my dear.
Our inner lives are a miracle.
The beat their essence in the coracle
our ribs provide, the watertight boat we steer
through others' acid, hysterical
demands. Ours is the miracle. we're here.
Wednesday, March 19, 2008
Into Every Life A Little Rain Must Fall
Today it is raining March showers on the March flowers.
I backed out of the garage this morning and pressed the button to close the garage door. It shut halfway and then stopped. I pressed the button again. Nuthin'. Again. Nuthin'. I got out of the car, ducked into the garage, and pressed the button on the wall.
Nuthin'.
Then I noticed that the light was out, too. The frickin' power went out in the middle of garage door closure. In a fabulous imitation of my youngest child, I growled and stomped my feet. Then, unlike him, I took a few deep breaths, manually released the garage door, locked it, and went out the front door to the car.
The day's journey began, and it was all good.
Here's a wonderful poem by Mary Oliver:
Last Night the Rain Spoke to Me
Last night
the rain
spoke to me
slowly, saying,
what joy
to come falling
out of the brisk cloud,
to be happy again
in a new way
on the earth!
That’s what it said
as it dropped,
smelling of iron,
and vanished
like a dream of the ocean
into the branches
and the grass below.
Then it was over.
The sky cleared.
I was standing
under a tree.
The tree was a tree
with happy leaves,
and I was myself,
and there were stars in the sky
that were also themselves
at the moment
at which moment
my right hand
was holding my left hand
which was holding the tree
which was filled with stars
and the soft rain –
imagine! imagine!
the long and wondrous journeys
still to be ours.
I backed out of the garage this morning and pressed the button to close the garage door. It shut halfway and then stopped. I pressed the button again. Nuthin'. Again. Nuthin'. I got out of the car, ducked into the garage, and pressed the button on the wall.
Nuthin'.
Then I noticed that the light was out, too. The frickin' power went out in the middle of garage door closure. In a fabulous imitation of my youngest child, I growled and stomped my feet. Then, unlike him, I took a few deep breaths, manually released the garage door, locked it, and went out the front door to the car.
The day's journey began, and it was all good.
Here's a wonderful poem by Mary Oliver:
Last Night the Rain Spoke to Me
Last night
the rain
spoke to me
slowly, saying,
what joy
to come falling
out of the brisk cloud,
to be happy again
in a new way
on the earth!
That’s what it said
as it dropped,
smelling of iron,
and vanished
like a dream of the ocean
into the branches
and the grass below.
Then it was over.
The sky cleared.
I was standing
under a tree.
The tree was a tree
with happy leaves,
and I was myself,
and there were stars in the sky
that were also themselves
at the moment
at which moment
my right hand
was holding my left hand
which was holding the tree
which was filled with stars
and the soft rain –
imagine! imagine!
the long and wondrous journeys
still to be ours.
Tuesday, March 18, 2008
Hopeful
Bernard talks about a new clinical trial led by Dr. Denise Faustman, who is searching for a cure for Type 1 diabetes. I know that people are alternately excited & jaded with this clinical trial announcement. How many years have we been hoping for a cure? My God, we've only had diabetes in our family for less than a year, yet it seems like I have been wishing for a cure forever. There's a constant dialog with the divine running through my mind; it goes something like this: "Okay, here I am at Target and I have to remember to get lemon juice & laundry soap, speaking of laundry jeez I wish Daniel would stop wiping his bloody fingers on his pants legs, maybe I should get some spot cleaner and please let there be a cure for this damned disease by the end of 2008. Or at the very latest by the time he is out of high school."
I can't help but feel a leap of hope in my chest when these new clinical trials are announced. This could be the one, this could be the year, this could be the vaccine. I'd get Daniel in the trial if I could, but he doesn't qualify; he's not over 18.
I mean, people are flocking to China to get stem cell therapy to cure blindness in their children, laying thousands of dollars down on their hopes, on the love for their children. Is it working? Some people say yes. Some people say it is baloney. But I tell you, I would travel across the stars and back for Daniel if there was a cure I could buy, if someone could grant my child health in a vial.
At the same time, I'm working on my gratitude. This is like mental yoga -- where you use opposing forces in your muscles to build strength. I don't even know if I'm saying that right. I'm thinking of the downward dog pose, where you outwardly rotate the upper arms while at the same time pressing the base of the index fingers into the mat... it all leads to a strong arm. ANYWAY... what I mean to say is that I'm so happy Daniel is alive! That, although insulin is not a cure, it keeps him here with us! That although diabetes is a major pain in the ass (shots included) we are managing it day by day, hour by hour. I hate diabetes. But I'm learning from it. Opposing mental forces, making me stronger (I hope).
A kid Daniel's age, who was his classmate a couple of years ago, was killed on Friday along with his father in a small plane crash. The news rocked our house yesterday, and my thoughts & prayers flew out to the mom & sister, who lost both men in the family at the same time. The tragedy served to remind me: we don't know what's going to happen tonight, tomorrow, an hour from now. We have to live every day, really live it, stay aware, notice each moment as it passes just for its unique beauty.
I can't help but feel a leap of hope in my chest when these new clinical trials are announced. This could be the one, this could be the year, this could be the vaccine. I'd get Daniel in the trial if I could, but he doesn't qualify; he's not over 18.
I mean, people are flocking to China to get stem cell therapy to cure blindness in their children, laying thousands of dollars down on their hopes, on the love for their children. Is it working? Some people say yes. Some people say it is baloney. But I tell you, I would travel across the stars and back for Daniel if there was a cure I could buy, if someone could grant my child health in a vial.
At the same time, I'm working on my gratitude. This is like mental yoga -- where you use opposing forces in your muscles to build strength. I don't even know if I'm saying that right. I'm thinking of the downward dog pose, where you outwardly rotate the upper arms while at the same time pressing the base of the index fingers into the mat... it all leads to a strong arm. ANYWAY... what I mean to say is that I'm so happy Daniel is alive! That, although insulin is not a cure, it keeps him here with us! That although diabetes is a major pain in the ass (shots included) we are managing it day by day, hour by hour. I hate diabetes. But I'm learning from it. Opposing mental forces, making me stronger (I hope).
A kid Daniel's age, who was his classmate a couple of years ago, was killed on Friday along with his father in a small plane crash. The news rocked our house yesterday, and my thoughts & prayers flew out to the mom & sister, who lost both men in the family at the same time. The tragedy served to remind me: we don't know what's going to happen tonight, tomorrow, an hour from now. We have to live every day, really live it, stay aware, notice each moment as it passes just for its unique beauty.
Saturday, March 15, 2008
Digging Through Stuff
We have termites. Yuck. A carpenter is coming next week to cut out a piece of the wall to see if there is damage there. The termite blasters are coming to blast the termites. The play room has to have the rug pulled up to look for damage & points of entry. Ugh. So today we spent a lot of time purging old toys, storing some things temporarily in boxes, and adding to our growing yard sale pile.
I found my old sketch book. Something you don't know about me. I like to draw. I love to draw. I kept a sketch book for a long time, as well as a notebook to catch whatever creative poem pieces might pop out during the day. I loved to draw faces, and loved the way faces could be built out of light and shadows.
I always thought I would do something creative for a living. Drawing, writing, acting -- I enjoyed them all and never figured out which one I liked the most. But I thought that my life's work would eventually incorporate one of these. Somehow, that hasn't worked out. Yet I tell myself that it is never too late to make a change. My parents insisted that following an artistic life was all fine and well, but it wouldn't pay the bills, so it was important to learn how to do practical things, like typing & math. Now my job mostly concerns typing and math, and it makes me sad.
Don't get me wrong. I know they meant this out of love and concern. You need to support yourself. You might break your arm -- you need health benefits. Gawd, do I know now how important good health benefits are! So I understand. Yet.
I promise to encourage my children to follow their heart, to find what it is that they love to do and pursue it with all their might. You can waste a lot of years being practical. But time spent doing what you love to do, increasing your depth of knowledge, learning your craft -- that time is never wasted.
I was thinking about the person who is coming next week to chase out the termites. What did he want to do when he was a kid? Did he bring bugs home in a box to show to his parents? Is he living his dream?
Are you living your dream? I hope you are. I hope to live mine soon, too.
I found my old sketch book. Something you don't know about me. I like to draw. I love to draw. I kept a sketch book for a long time, as well as a notebook to catch whatever creative poem pieces might pop out during the day. I loved to draw faces, and loved the way faces could be built out of light and shadows.
I always thought I would do something creative for a living. Drawing, writing, acting -- I enjoyed them all and never figured out which one I liked the most. But I thought that my life's work would eventually incorporate one of these. Somehow, that hasn't worked out. Yet I tell myself that it is never too late to make a change. My parents insisted that following an artistic life was all fine and well, but it wouldn't pay the bills, so it was important to learn how to do practical things, like typing & math. Now my job mostly concerns typing and math, and it makes me sad.
Don't get me wrong. I know they meant this out of love and concern. You need to support yourself. You might break your arm -- you need health benefits. Gawd, do I know now how important good health benefits are! So I understand. Yet.
I promise to encourage my children to follow their heart, to find what it is that they love to do and pursue it with all their might. You can waste a lot of years being practical. But time spent doing what you love to do, increasing your depth of knowledge, learning your craft -- that time is never wasted.
I was thinking about the person who is coming next week to chase out the termites. What did he want to do when he was a kid? Did he bring bugs home in a box to show to his parents? Is he living his dream?
Are you living your dream? I hope you are. I hope to live mine soon, too.
Labels:
careers,
creativity,
drawing,
dreams,
practicality,
sketchbook,
termites
Thursday, March 13, 2008
At Home Today
This morning Daniel woke up with a low just after 5:00 a.m. He took his sugar, waited, and was still low at 5:20. He had more sugar and ate breakfast. He's trying to find new sites to give himself a shot, and tried in his thigh today. He said that when he pulled the needle out, a bunch of liquid squirted on him and the pen clicked once, so he was afraid he didn't get his dose. He gave himself another unit in his abdomen. Same thing happened. So he gave himself one more unit in another spot.
I was in the shower, unaware this was going on. Ugh. So when he told me, I said that I was worried that he would go low at school. He was too, and made sure he had lots of sugar available.
About 5 minutes after I got to work, my cell phone rang. It was Daniel, calling from the nurse's office. He wasn't low -- he was at 520. The orders from the doc say that he has to go home if he is over 350. He must not have gotten any of his insulin this morning!
So I told Daniel to correct while he was still there, and that I'd be on my way. After we got home he tested again. He's at 354. We'll try again in a few minutes.
What a day!
I was in the shower, unaware this was going on. Ugh. So when he told me, I said that I was worried that he would go low at school. He was too, and made sure he had lots of sugar available.
About 5 minutes after I got to work, my cell phone rang. It was Daniel, calling from the nurse's office. He wasn't low -- he was at 520. The orders from the doc say that he has to go home if he is over 350. He must not have gotten any of his insulin this morning!
So I told Daniel to correct while he was still there, and that I'd be on my way. After we got home he tested again. He's at 354. We'll try again in a few minutes.
What a day!
Tuesday, March 11, 2008
Twisted & Tightly Wrapped
This is my busiest time of the year at work. There just aren't enough hours in the day for work. The people at work want me to work more hours, or work from home. But there's only so much I could even do at home, if I wanted to. The billing, reregistration, statements, and millions of other things have to be done from my desk at work.
I don't want to do school work from home. There's more than enough of my own work here. There aren't enough hours in the day at home, either. Mama Sisyphus, pushing a boulder of accumulated stuff around the house every day. From my vantage point here in the dining room/makeshift office, I see bills, medical benefits claim forms, unsent birthday cards, school & library books, unfinished cross stitch, teaching materials for my church class, newspapers, diabetes detritus, and a floor that needs sweeping. Everything needs attention here, just as the pile of papers on my desk that won't get any smaller until I attend to them, one by one.
Listen, universe. I'm asking for a change. I want to write instead of process paperwork. I want to have the time to keep my house in order. I would like to be less tightly wrapped.
While we're at it, how about a cure for diabetes? An end to war? A way to combine chocolate consumption & weight loss?
I don't want to do school work from home. There's more than enough of my own work here. There aren't enough hours in the day at home, either. Mama Sisyphus, pushing a boulder of accumulated stuff around the house every day. From my vantage point here in the dining room/makeshift office, I see bills, medical benefits claim forms, unsent birthday cards, school & library books, unfinished cross stitch, teaching materials for my church class, newspapers, diabetes detritus, and a floor that needs sweeping. Everything needs attention here, just as the pile of papers on my desk that won't get any smaller until I attend to them, one by one.
Listen, universe. I'm asking for a change. I want to write instead of process paperwork. I want to have the time to keep my house in order. I would like to be less tightly wrapped.
While we're at it, how about a cure for diabetes? An end to war? A way to combine chocolate consumption & weight loss?
Saturday, March 8, 2008
I've Looked at Clouds
When I was young I found a photo album of pictures that my dad had taken when he was aboard a ship. There were pages and pages of cloud pictures.
I flipped past these pages pretty quickly, because after the 20th or so cloud picture, I thought they pretty much all looked the same. BTW, they were B&W.
Today we had a wild change of weather, from heavy rain & fog to warm & sunny to wildly windy with ominous clouds in exotic swirls & feather shapes.
I took a few pictures. Certainly a few more than I will post here. These pictures are okay, but they don't portray the majesty of the sky today, and can't possibly reproduce the epic sound effects of the wind. But I thought about Dad's photo album, rectangle after rectangle of cloud shapes. How did the sun feel on his face that day? Was there salt in the wind from the ocean around him? Why does he press that day, those clouds, into a book after all these years?
The temperature rises and falls with the movement of the air; these are certainly winds of change. No wonder we look to nature for portents -- when we hear the cannon rush of a weather front passing through as we try to sleep on a warm night, we may wake to snow on the ground in the morning. Even without a lightning storm the air seems to be filled with an electricity, an energy, a promise, a foreboding.
Tonight I spent one-on-one time with Dominic. Matt had the other two out at a video game extravaganza. Dominic was getting a kick of watching the live-action version of the Scooby Doo movie on a Spanish-language channel. He lounged on the couch pillows & wiggled his loose tooth. I asked him to open his mouth so I could see how loose it was, and to check the progress of the new front teeth that have been quickly increasing in size these past few days.
I thought I saw something stuck on those two front teeth, and asked Dominic to hold still while I scraped at them a little with a finger nail. Nothing came off. They have bright white spots on the enamel, whiter than the surrounding teeth.
Daniel had that on his teeth when his permanent teeth came in. I asked his long ago dentist about them, and she said that sometimes the antibiotics that kids take when they are babies can cause these marks on the enamel of the permanent teeth. Okay... I didn't think anything about it at the time. But in this past year I have learned that a high percentage of kids with undiagnosed celiac disease can have dental enamel defects.
*sigh* I'm pretty resigned to this, you know. But I can still complain about it for a while. The new health insurance we have doesn't cover the complete cost of testing for celiac like the old insurance did. Nora's test cost us $400... Ouch. Yes, we will get Dominic tested. But I look at those teeth and think that it is hardly necessary. I can see the future of our household, and it contains no gluten. I listen to the wind blow outside, and know the change is coming.
Tuesday, March 4, 2008
alice in wonderland cupcakes
I found this on flickr from "hello naomi" (no relation) . Don't you just want a cupcake?
I heartily appreciate this person's foodart. I'd never have the patience to stay up all night creating these. But I'll take a light blue one, please, with a strong cup of coffee.
I heartily appreciate this person's foodart. I'd never have the patience to stay up all night creating these. But I'll take a light blue one, please, with a strong cup of coffee.
Monday, March 3, 2008
Cheerios
Cheerios on the menu. Dominic is doing better now, and has held down a couple handfuls of cheerios for just about an hour. Things are looking up! I washed 3 rugs, 1 comforter, 1 pillow, 1 mattress pad, 2 sets of sheets, 2 pairs of pajamas, and socks. Chicken soup is cooling on the stove. I'm keeping my fingers crossed for an afternoon nap!
The A-ha Moment
Last night:
(Daniel) Why is Dominic acting up so much tonight? He keeps kicking me and spinning around and he won't shut up!!
(Me) I guess he's just in one of his moods. DOMINIC!! Stop kicking your brother! Settle down! If I hear one more problem then you will go to bed THAT MINUTE!! (this was about 20 minutes before bedtime).
(Dominic) Okay. I'm sorry.
Cut to 4 a.m. Retching noises coming from the boys' bedroom.
Cut to 5:30 a.m. Was it after the 5th or 6th time that Dominic threw up that I thought about last night and said, "A ha...."
His bed. His rug. My bed. My rug. My bathroom rugs. My bathroom sink & cabinet. His pjs. My pjs. Finally, the toilet.
(Daniel) Why is Dominic acting up so much tonight? He keeps kicking me and spinning around and he won't shut up!!
(Me) I guess he's just in one of his moods. DOMINIC!! Stop kicking your brother! Settle down! If I hear one more problem then you will go to bed THAT MINUTE!! (this was about 20 minutes before bedtime).
(Dominic) Okay. I'm sorry.
Cut to 4 a.m. Retching noises coming from the boys' bedroom.
Cut to 5:30 a.m. Was it after the 5th or 6th time that Dominic threw up that I thought about last night and said, "A ha...."
His bed. His rug. My bed. My rug. My bathroom rugs. My bathroom sink & cabinet. His pjs. My pjs. Finally, the toilet.
Sunday, March 2, 2008
I Look Around
I look around and see half-inch specks of tinsel in the living room and the front hall. I vacuumed every bit of tinsel after Christmas, and yet there are new pieces appearing every week. I think they laid eggs, and baby tinsel are starting to crawl out. I wonder if there will be a swarm.
Yesterday before I went to sleep I cleaned off the kitchen counter. I took the kids' books and put them in their chairs in the kitchen so the kids could put them away. I went through my paperwork and filed it. I put away the boxes of crackers and the empty glasses.
This morning the kitchen counter was full of stuff again. It is a stuff magnet. At night while we sleep, random stuff from all over the house congregates on the kitchen counter. It gets confused there, perhaps drinks some wine, and then can't find its way back to its proper place.
Daniel thought dinner smelled like shit tonight. And it did, except that it wasn't dinner. It was the bottom of Nora's shoe. She stepped in some particularly pungent, hay-laced shit while playing this afternoon. She walked across the playroom rug with her shoes on, washed her hands well at the kitchen sink, and sat down at the table with incredibly stinky shoes. We told her to take off the shoes & put them in the garage and then sweep up the chunks of shit that fell off of her shoes under the table.
Now the broom smells like shit.
Daniel's dinner numbers have been high. high HIGH HIGH. We've tinkered with basal & bolus rates. We have to call the pen nurse tomorrow. I don't know how to fix this stuff.
Last night we went out to dinner. The waiter looked at Nora, who was wearing a pink turtle neck covered by a pink & purple poncho with a fun fur trim & asked "what is he having for dinner?" HE? Yes, her hair is short, but not too short. She's actually growing it out now. She even let me blow it dry and fluff it up. She wears earrings. She's in fuzzy pink for God's sake!!! Why do people look at her and say "he?" It drives me crazy. Last year, when she got her hair cut so short and wore her usual tomboyish clothes, I could understand, even though it still made me mad. But when she makes an effort, when she puts on pink & fluffs her hair, the whole stupid world should see that she's a SHE.
How can it possibly be Sunday night? Work? Tomorrow? I haven't finished the laundry!! I haven't read enough blogs, I haven't cooked an extra meal for the week!! I can't find where Daniel put the dusting spray it's past bed time and the kids are still awake the Ctrl key keeps popping off and I can't finish writing
Yesterday before I went to sleep I cleaned off the kitchen counter. I took the kids' books and put them in their chairs in the kitchen so the kids could put them away. I went through my paperwork and filed it. I put away the boxes of crackers and the empty glasses.
This morning the kitchen counter was full of stuff again. It is a stuff magnet. At night while we sleep, random stuff from all over the house congregates on the kitchen counter. It gets confused there, perhaps drinks some wine, and then can't find its way back to its proper place.
Daniel thought dinner smelled like shit tonight. And it did, except that it wasn't dinner. It was the bottom of Nora's shoe. She stepped in some particularly pungent, hay-laced shit while playing this afternoon. She walked across the playroom rug with her shoes on, washed her hands well at the kitchen sink, and sat down at the table with incredibly stinky shoes. We told her to take off the shoes & put them in the garage and then sweep up the chunks of shit that fell off of her shoes under the table.
Now the broom smells like shit.
Daniel's dinner numbers have been high. high HIGH HIGH. We've tinkered with basal & bolus rates. We have to call the pen nurse tomorrow. I don't know how to fix this stuff.
Last night we went out to dinner. The waiter looked at Nora, who was wearing a pink turtle neck covered by a pink & purple poncho with a fun fur trim & asked "what is he having for dinner?" HE? Yes, her hair is short, but not too short. She's actually growing it out now. She even let me blow it dry and fluff it up. She wears earrings. She's in fuzzy pink for God's sake!!! Why do people look at her and say "he?" It drives me crazy. Last year, when she got her hair cut so short and wore her usual tomboyish clothes, I could understand, even though it still made me mad. But when she makes an effort, when she puts on pink & fluffs her hair, the whole stupid world should see that she's a SHE.
How can it possibly be Sunday night? Work? Tomorrow? I haven't finished the laundry!! I haven't read enough blogs, I haven't cooked an extra meal for the week!! I can't find where Daniel put the dusting spray it's past bed time and the kids are still awake the Ctrl key keeps popping off and I can't finish writing
Labels:
diabetes,
gender,
housecleaning,
interruptions,
life,
parenting
Saturday, March 1, 2008
What to do?
I've felt crappy all week with a sore throat/cold that is now moving into a cough that won't go away. At my office we've spent a winter feeling quite cold; in our building they just can't seem to get the temperature levels correct. This week, for some weird reason, the heat kicks in and it's running between 76 - 80 degrees in the office. The blasting heat made my cold feel worse.
While I was digging around for cold medicine I found a bottle full of antibiotics. Last year, right before Daniel was diagnosed with diabetes, we thought he had a sinus infection. After a couple of days on the antibiotics for that, he was complaining of a funny taste in his mouth. We thought it was the antibiotics, but it was actually the ketoacidosis kicking in. Anyway, the doctor switched antibiotics and I must have put the amoxicillin up on a shelf & forgot about it.
Now I'm on the verge of a sinus infection. Maybe. I have that blocked-sinus/lost voice feeling in the mornings and evenings. It might go away on its own. It might not. I have 7 1/2 days worth of amoxicillin.
What to do?
In any case, the flowers that Matt sent me this week -- just because -- were better than any medicine.
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