Gregg and I could use a good night’s sleep. The past two nights, we’ve been chasing late-night lows.
52, 70 and 64—they might just be the winning lottery numbers somewhere. To us, they’re anything but winning numbers. They represent Friday night’s sleep deprivation. Despite waking Jack and feeding him juice and gummy worms, we couldn’t elevate his blood sugars to a safe level until around 1am, when Gregg (just Gregg, as I had fallen asleep around midnight) finally saw 156 on the glucometer.
Saturday night brought more of the same with numbers in the 50s and 60s, again until 1am.
To make matters worse, my cell phone, which was sitting on my night stand, then rang at 3am this morning. It was a wrong-number call!
And, then the boys, of course, woke up before the crack of dawn, which meant we woke up before the crack of dawn.
It’s now 10:15 pm on Sunday night. Gregg just tested Jack. He’s 164. Looks as though we might just get some sleep after all!
Good night!
Sunday, January 31, 2010
Friday, January 29, 2010
Help JDRF Win $100,000
Please help JDRF!
Mark Sanchez, quarterback for the NY Jets, is helping the Juvenile Diabetes Research Foundation (JDRF) try to win $100,000 in grants as part of the Pepsi Refresh Project, an online campaign to fund programs that will have a positive impact on people's lives.
Go to www.nfl.com/pepsirefresh and vote for Sanchez, or text ‘MARK’ to PEPSI (73774).
Voting ends Feb. 5th, but please don't wait. Vote today! It took me less than one minute to vote.
Please spread the word too. Copy and paste this post (or create a similar message) into an email, blog post or your Facebook status update.
Together, we can win this for JDRF!!!
To view the press release about the project on JDRF's website, click here.
Thank you Mark Sanchez!!!! Thank you friends and family for helping JDRF!!!!
Mark Sanchez, quarterback for the NY Jets, is helping the Juvenile Diabetes Research Foundation (JDRF) try to win $100,000 in grants as part of the Pepsi Refresh Project, an online campaign to fund programs that will have a positive impact on people's lives.
Go to www.nfl.com/pepsirefresh and vote for Sanchez, or text ‘MARK’ to PEPSI (73774).
Voting ends Feb. 5th, but please don't wait. Vote today! It took me less than one minute to vote.
Please spread the word too. Copy and paste this post (or create a similar message) into an email, blog post or your Facebook status update.
Together, we can win this for JDRF!!!
To view the press release about the project on JDRF's website, click here.
Thank you Mark Sanchez!!!! Thank you friends and family for helping JDRF!!!!
Saturday, January 23, 2010
In Loving Memory
Exactly two years ago today,
my cousin Mimi playing Candyland with Jack and Madeline
my cousin Mimi playing Candyland with Jack and Madeline
When Jack was first diagnosed with diabetes, we were filled with questions. Should we seek the best endocrinologist in the country, or is it safe to stick with local doctors? How do we get air bubbles out of a syringe, when drawing up insulin? What’s the truth about artificial sweeteners?
One of the first people we called was my cousin Mimi, as Mimi was a family practice doc. My father always turned to Mimi when he needed medical advice, and he always trusted her answers and opinions. Mimi was actually my dad’s first cousin, and they were raised more like siblings than cousins. My father was like her big brother, and he felt intensely proud of her and all that she’d accomplished.
Growing up, I heard all sorts of stories about Mimi. She climbed Mt. Kilimanjaro as part of ex-President Jimmy Carter’s medical team. She earned not just her M.D., but her Ph.D., too. She taught herself foreign languages.
In 1990, Mimi was diagnosed with breast cancer, and on January 11, 2010, after a valiant twenty-year battle, she finally succumbed to the disease. I say valiant, because Mimi fought her disease with every ounce of her being. She truly gave it her all. She repeatedly sought the best medical treatment and even underwent an experimental bone marrow transplant shortly after her initial diagnosis. She endured many rounds of chemo and radiation, remission, reoccurrence, metastasis, complications, severe secondary problems from the treatment and more.
Despite her health problems, she lived the life she wanted to lead. She did the things she wanted to do. She moved to one of the most gorgeous places on earth: Kodiak, Alaska. She traveled the world. She volunteered at the Kodiak public radio station, learning how to work the board and becoming an on-air personality. She grew a vegetable garden. She hiked and kayaked and enjoyed the beauty that was her backyard.
Within this past year, her cancer came back with a vengeance. She fought hard, but the disease had taken its toll on her body, and she could fight no more. She passed away in her sleep at home in her own bed. Just as she lived the life she wanted to lead, she died the way she wanted to die. She was 61; she would have turned 62 in March.
Mimi did not want a funeral or any other Jewish traditions. Following her requests, her friends will simply hold a memorial in Kodiak today. I wish I were there. My parents wish the same, but my father is not well enough to make the trip. So together, we will hold our own little memorial of sorts. We will go to dinner at Chompie’s, a local deli she loved. The last time she visited, I think we ate there three times over the course of the week. “There are no good delis in Kodiak,” she used to say. Over pastrami and corned beef sandwiches, we will share stories and talk about the cousin we loved dearly and will miss terribly.
I write this post with tears in my eyes. I’m grieving. My heart hurts. It’s hard to believe she’s gone. It’s hard to believe she will no longer visit us, and I will never see her sitting at my kitchen table playing Candyland with my kids again. We will never be able to take the kids to Kodiak to visit her and explore her surroundings. When Max is in kindergarten and his teacher conducts a unit on the U.S. Postal Service and asks students’ friends and relatives to send post cards, he won’t receive any mail from Alaska. I’m guessing Madeline and Jack will hold tight to their kindergarten postcards, the ones that show pictures of seals and bald eagles and, in Mimi’s handwriting, tell a little bit about her home state and end with “I miss you. Love, Mimi”
Just as the kids will treasure their postcards, I will treasure the memories and I will forever remain grateful for her love and support after Jack was diagnosed. “He’s better off consuming real sugar than artificial sweeteners,” she cautioned me. “Just watch how much sugar and carbohydrates he consumes. Take a balanced approach.”
“If you flick your fingers and tap lightly on the syringe,” she instructed, “you can some times remove the air bubbles, but make sure you tap lightly.”
“Joslin is an excellent center for diabetes,” she said, “but your local endocrinologist, especially a pediatric endocrinologist, can help you manage his disease just fine. I’m sorry you’re going through this, but don’t worry. He’ll be okay. He can live a long, happy, healthy life with diabetes.”
Her biggest message and greatest lesson came not from what she said, but from what she did. She didn’t let cancer stop her until the very end of her life, until weeks before her death when she could fight no more. She would want us to fight diabetes in the same fashion, and we will—for her and for Jack.
The view from Mimi's backyard
Friday, January 22, 2010
A Day of Sweets
This morning, I volunteered in Jack’s classroom. I was the “Friday folder” mom, stuffing flyers into the kids’ take-home folders. On my way out of the classroom, I spied three boxes of chocolate-glazed doughnuts with sprinkles on top. They were a birthday treat for one of Jack’s friends, and they looked delicious. I knew Jack would want one. So on my way out of school, I stopped by the nurse’s office and warned her that Jack’s teacher would be sending him her way to cover the carbs with an insulin injection.
A few hours later, my cell phone rang. It was the school nurse. I figured she was calling about the doughnuts. I was wrong.
“Hi Heidi, sorry to bother you,” she began. “I think I already know the answer to this, but Jack’s class won an ice cream party from the school PTO, and today’s the day of the party. How do you feel about him eating ice cream after eating a doughnut?”
Ugh! This is the kind of situation that breaks my heart. I didn’t really want Jack to eat ice cream after he’d just consumed a super sugary snack. Not only that, but he’d also eaten the homemade chocolate chip cookie I packed in his lunch box. A cookie plus a doughnut plus ice cream is just not my idea of healthy eating, diabetes or not. I don’t really want any of my kids eating that much junk at school. With Madeline or Max, however, it’s not that big of a deal. With Jack, it’s a great way to have a kid, who physically feels miserable tonight…and tonight is the Cub Scout Pinewood Derby! I want him to feel great for that. Plus, I think the Scouts will be served desserts at the Derby, too.
If I denied Jack, however, I know he’d feel left out. Would you want to eat a piece of sugar-free chocolate or a package of peanuts while your friends were devouring dishes of ice cream? I have said over and over and over again that I don’t want diabetes to stop Jack from doing anything that he’d normally do. I don’t want him to feel excluded.
So I came up with a happy-medium solution. I gave Jack permission to eat the ice cream, provided he didn’t consume a massive amount. I gave the nurse a carb cut-off of 15 grams of carbohydrates. As it turned out, the ice cream cups contained only 14 grams, so that was perfect. Jack enjoyed his ice cream and came home with a story about how his class won this ice cream party.
He also came home with two pieces of candy: a box of Nerds and a package of Sweet Tarts. More junk! More carbs! More to mess with his system and cause him to feel poorly later on tonight! The candy came from the estimation jar. Each week, one child in the class fills this jar with a number of items. The kids in the class then estimate how many items are in the jar, and on Fridays, the items are divvied up among the students.
Of course, Jack wanted to eat the candy right away. “Come on, mom,” he pleaded. “You can just give me more insulin. Can’t I please eat the Nerds right now? I’ll give the Sweet Tarts to Max.”
I looked at my son, and I saw a child who simply wants to be like all the other kids. I saw a child, who wishes more than anything that he didn’t have this darned disease. I wanted to cry. I wanted more than anything to make this disease disappear. And I felt conflicted. I really didn’t want him eating more junk. He’s going to get his fill at the Pinewood Derby. But did it really matter right then and there? It’s not as if every day is like today. And then I wondered whether I was just rationalizing the situation. What to do, what to do, what to do... Parenting a child with diabetes is not easy.
Jack generally eats healthfully. All three of my kids do. And, Jack can have diabetes and his sweet treats, too. It’s a myth that people with diabetes can never eat sugar. It’s just that long-term, the more stable his blood sugar levels and the better we keep him in good range, the healthier he’ll be and the fewer the complications he'll have...or the longer he'll put off those complications. One day of sweets won’t harm him. It’s a balancing act.
“Okay,” I caved. “Let’s check your blood sugar level. If you’re below 250, you can have them. If you’re above, you’ll have to wait.”
He was 238. So he poured the Nerds into his hand and then shoved them into his mouth almost all at once. “Yum! Thanks, mom.”
A little while later, he called out to me. “Mom, I’m hungry. Can I have a granola bar?”
He knew I’d much prefer he ate a low-carb snack at that point. So he added, “I don’t want nuts, cheese, celery, peanut butter, turkey, sugar-free Jell-O, a sugar-free Popsicle, or a hard-boiled egg.”
Of course he didn’t. So off to the kitchen I went to grab the insulin, syringes and alcohol swabs. It’s just one of those days.
A few hours later, my cell phone rang. It was the school nurse. I figured she was calling about the doughnuts. I was wrong.
“Hi Heidi, sorry to bother you,” she began. “I think I already know the answer to this, but Jack’s class won an ice cream party from the school PTO, and today’s the day of the party. How do you feel about him eating ice cream after eating a doughnut?”
Ugh! This is the kind of situation that breaks my heart. I didn’t really want Jack to eat ice cream after he’d just consumed a super sugary snack. Not only that, but he’d also eaten the homemade chocolate chip cookie I packed in his lunch box. A cookie plus a doughnut plus ice cream is just not my idea of healthy eating, diabetes or not. I don’t really want any of my kids eating that much junk at school. With Madeline or Max, however, it’s not that big of a deal. With Jack, it’s a great way to have a kid, who physically feels miserable tonight…and tonight is the Cub Scout Pinewood Derby! I want him to feel great for that. Plus, I think the Scouts will be served desserts at the Derby, too.
If I denied Jack, however, I know he’d feel left out. Would you want to eat a piece of sugar-free chocolate or a package of peanuts while your friends were devouring dishes of ice cream? I have said over and over and over again that I don’t want diabetes to stop Jack from doing anything that he’d normally do. I don’t want him to feel excluded.
So I came up with a happy-medium solution. I gave Jack permission to eat the ice cream, provided he didn’t consume a massive amount. I gave the nurse a carb cut-off of 15 grams of carbohydrates. As it turned out, the ice cream cups contained only 14 grams, so that was perfect. Jack enjoyed his ice cream and came home with a story about how his class won this ice cream party.
He also came home with two pieces of candy: a box of Nerds and a package of Sweet Tarts. More junk! More carbs! More to mess with his system and cause him to feel poorly later on tonight! The candy came from the estimation jar. Each week, one child in the class fills this jar with a number of items. The kids in the class then estimate how many items are in the jar, and on Fridays, the items are divvied up among the students.
Of course, Jack wanted to eat the candy right away. “Come on, mom,” he pleaded. “You can just give me more insulin. Can’t I please eat the Nerds right now? I’ll give the Sweet Tarts to Max.”
I looked at my son, and I saw a child who simply wants to be like all the other kids. I saw a child, who wishes more than anything that he didn’t have this darned disease. I wanted to cry. I wanted more than anything to make this disease disappear. And I felt conflicted. I really didn’t want him eating more junk. He’s going to get his fill at the Pinewood Derby. But did it really matter right then and there? It’s not as if every day is like today. And then I wondered whether I was just rationalizing the situation. What to do, what to do, what to do... Parenting a child with diabetes is not easy.
Jack generally eats healthfully. All three of my kids do. And, Jack can have diabetes and his sweet treats, too. It’s a myth that people with diabetes can never eat sugar. It’s just that long-term, the more stable his blood sugar levels and the better we keep him in good range, the healthier he’ll be and the fewer the complications he'll have...or the longer he'll put off those complications. One day of sweets won’t harm him. It’s a balancing act.
“Okay,” I caved. “Let’s check your blood sugar level. If you’re below 250, you can have them. If you’re above, you’ll have to wait.”
He was 238. So he poured the Nerds into his hand and then shoved them into his mouth almost all at once. “Yum! Thanks, mom.”
A little while later, he called out to me. “Mom, I’m hungry. Can I have a granola bar?”
He knew I’d much prefer he ate a low-carb snack at that point. So he added, “I don’t want nuts, cheese, celery, peanut butter, turkey, sugar-free Jell-O, a sugar-free Popsicle, or a hard-boiled egg.”
Of course he didn’t. So off to the kitchen I went to grab the insulin, syringes and alcohol swabs. It’s just one of those days.
BIG, BIG, BIG News
I am so excited. I have BIG news to share. BIG, BIG, BIG news!!!
We have an incredible friend. Her name is Alex. She’s an Olympic athlete, having competed and won a silver medal with the Brazilian women’s soccer team in the 2004 games in Athens. She’s a fitness coach to kids and parents, running a fantastic program called Itty Bitty Sports. She holds a master’s degree in sports psychology, and currently, she’s a Ph.D. candidate in psychology. She’s also a trained E.M.T. She is all about health and fitness!
After meeting us last summer and helping Jack at summer camp, where she coached kids as part of her Itty Bitty Sports program, Alex participated in the 2009 JDRF Walk to Cure Diabetes with Jack’s Pack. There she is pictured on the left in the above photo taken at the Walk. Our mutual beloved friend Deborah stands beside her.
After walking with us, Alex decided she wanted to “go a little bit farther.” And this is the part about the BIG news…
Drum roll, please!
Alex is going to bike across America to help Jack’s Pack raise money for JDRF. Yes, that’s right. She’s going to bike across America to raise money for JDRF, and she wants to raise at least $75,000!!!!
Alex is calling her ride Kickin’ and Crankin’ for Kids and a Cure, and in August 2010, she will begin in San Diego and pedal across the country to New Jersey. She will ride 8-10 hours a day for 45 days, traveling over 3,000 miles from start to finish. Along the way, she will promote fitness education and raise awareness about type 1 diabetes with people she meets. She wants to inspire kids and their families to play together, get healthy and stay active, all the while raising money for JDRF.
Is she amazing or what??!!!
We will be working closely with her public relations firm and supporting her efforts every possible way that we can.
At this point, Alex needs sponsors. If you know of any individuals or companies who may be interested, please contact me at heidi@jacks-pack.com. Much appreciated!
Alex, thank you, thank you, thank you!!!! We feel so incredibly blessed to have you in our lives!!!! You really are amazing!!!!
Thursday, January 21, 2010
Another update on Mike & Memories of Days Gone By
To read Mike's story from the beginning, start here.
My first update is here.
Mike and Marcia have called us a few times today. Oh, my heart goes out to them! What a day it’s been! Not only are they exhausted from their hospital stay and still recovering from major surgery, but they are overwhelmed by diabetes.
It’s their first day on their own without doctors, nurses or diabetic educators. Leaving the hospital, they thought they were prepared. They had written notes. They were given instructions from their medical team. They took home pamphlets and books. They filled their prescriptions and bought all of their diabetes supplies.
What they found is that all of those materials don’t make this disease easy. They’re still filled with questions and confusion. So they’ve called us, and we are glad to be there for them.
After talking with Mike and Marcia today, Gregg and I couldn’t help but reminisce. We still clearly remember our beginnings with this disease. We called our endocrinologist and diabetic educator often in those first few days and weeks.
“Remember that feeling of information overload?” I asked.
“It was intense,” said Gregg.
We laughed as we recalled our second day with the disease, when our diabetic educator sent us home with a big bag of stuff. We had no idea what to do with it all. So we brought it all back the next day and asked her to go through it (again!) item by item. We can laugh about that now, but back then, it wasn’t so funny. We were petrified of making a mistake and causing Jack harm.
“Remember how foreign this disease felt?” Gregg asked. “Remember how awkward and challenging a simple blood check was? How we had to really focus and concentrate on our every move to make sure we did things properly and how much fear we felt?
“What Mike and Marcia are experiencing,” Gregg went on, “is like an initiation. It’s probably what all newly diagnosed patients experience.”
It’s so true. I’m sure that diabetes management will eventually become routine for Mike and Marcia, just as it did for Gregg, Jack and me. I just hope that soon after, they will be able to forget the material they’ve mastered, as Mike’s liver will be functioning as a pancreas.
A little side note here:
Jack and I talked about Mike’s situation today. He’s upset that Mike has diabetes, even if it is just temporary. “I sure hope Mike’s liver works like a pancreas, because I really don’t want him to have diabetes as long as I’ve had it,” Jack said.
A little bit later in the conversation, he asked, “Is Mike writing down his blood sugar numbers? I hope he is, because that’s really important.”
Jack’s level of empathy and concern amazes me. Some times, it’s hard to remember that he’s only six.
My first update is here.
Mike and Marcia have called us a few times today. Oh, my heart goes out to them! What a day it’s been! Not only are they exhausted from their hospital stay and still recovering from major surgery, but they are overwhelmed by diabetes.
It’s their first day on their own without doctors, nurses or diabetic educators. Leaving the hospital, they thought they were prepared. They had written notes. They were given instructions from their medical team. They took home pamphlets and books. They filled their prescriptions and bought all of their diabetes supplies.
What they found is that all of those materials don’t make this disease easy. They’re still filled with questions and confusion. So they’ve called us, and we are glad to be there for them.
After talking with Mike and Marcia today, Gregg and I couldn’t help but reminisce. We still clearly remember our beginnings with this disease. We called our endocrinologist and diabetic educator often in those first few days and weeks.
“Remember that feeling of information overload?” I asked.
“It was intense,” said Gregg.
We laughed as we recalled our second day with the disease, when our diabetic educator sent us home with a big bag of stuff. We had no idea what to do with it all. So we brought it all back the next day and asked her to go through it (again!) item by item. We can laugh about that now, but back then, it wasn’t so funny. We were petrified of making a mistake and causing Jack harm.
“Remember how foreign this disease felt?” Gregg asked. “Remember how awkward and challenging a simple blood check was? How we had to really focus and concentrate on our every move to make sure we did things properly and how much fear we felt?
“What Mike and Marcia are experiencing,” Gregg went on, “is like an initiation. It’s probably what all newly diagnosed patients experience.”
It’s so true. I’m sure that diabetes management will eventually become routine for Mike and Marcia, just as it did for Gregg, Jack and me. I just hope that soon after, they will be able to forget the material they’ve mastered, as Mike’s liver will be functioning as a pancreas.
A little side note here:
Jack and I talked about Mike’s situation today. He’s upset that Mike has diabetes, even if it is just temporary. “I sure hope Mike’s liver works like a pancreas, because I really don’t want him to have diabetes as long as I’ve had it,” Jack said.
A little bit later in the conversation, he asked, “Is Mike writing down his blood sugar numbers? I hope he is, because that’s really important.”
Jack’s level of empathy and concern amazes me. Some times, it’s hard to remember that he’s only six.
Update on Mike
To read Mike's story from the beginning, start here.I just spoke with Mike and Marcia. It looks as though Mike will be discharged from the hospital today. Hooray! Finally, Mike will enjoy a good night's sleep again. No more nurses, janitors, beeping machines and checking vitals at all hours of the night!
Mike's surgery has left him with type 1 diabetes, but it may only be a temporary condition. We have our fingers crossed that within 8 to 10 weeks, the islet cells that were transplanted into his pancreas will begin to function well and "cure" him of his diabetes.
In the mean time, Mike is doing what Jack does: checking his blood sugar, giving himself insulin injections, counting carbs, treating lows, treating highs, and so on.
Even if he remains a diabetic, he will be better off in the long run. He'd take type 1 diabetes over pancreatic cancer any day.
Here's to a good night's sleep, continued healing, feeling well and no more diabetes, Mike! We send lots of love to you and Marcia!
Mike's surgery has left him with type 1 diabetes, but it may only be a temporary condition. We have our fingers crossed that within 8 to 10 weeks, the islet cells that were transplanted into his pancreas will begin to function well and "cure" him of his diabetes.
In the mean time, Mike is doing what Jack does: checking his blood sugar, giving himself insulin injections, counting carbs, treating lows, treating highs, and so on.
Even if he remains a diabetic, he will be better off in the long run. He'd take type 1 diabetes over pancreatic cancer any day.
Here's to a good night's sleep, continued healing, feeling well and no more diabetes, Mike! We send lots of love to you and Marcia!
You know you have a child with type 1 diabetes when...
First thing this morning, I walked into the kitchen, where Gregg was feeding the kids breakfast. He greeted me with "68."
"Jack woke up at 68?" I asked in response.
"No, that was my Bop It score," Gregg laughed.
You know you have a child with type 1 diabetes when your husband mentions a number, and you automatically think it's your child's latest blood sugar reading.
A couple of friends gave Madeline the Bop It for her birthday. It's a toy that requires you to follow commands: Bop it! Pull it! Twist It! You smack a big button, pull a handle and twist a knob in a series of unpredictable commands delivered at a faster and faster pace. It tests your reflexes, it's fun and it's the kids' latest obsession. This morning, Gregg got in the game, trying Bop It for the first time, scoring a whopping 68.
I like a Bop It score of 68 much better than I like a blood sugar level of 68!
For the record, my high score is 66, and Madeline has beaten us both with a 72. :)
Tuesday, January 19, 2010
What's a mom to do?
Jack has an aide, Laura, who helps him at school during lunch and the recess that follows. In the cafeteria, she monitors what Jack eats to make sure he gives the nurse an accurate report of the carbs he consumes. On the playground, Laura holds his D kit, so he can play freely. She follows him, visually tracking him as he plays soccer, dangles from monkey bars and roams the fields with friends. She’s also there to assist him, should the D monster rear its ugly head. She’s been trained on the signs of hyper- and hypoglycemia, and she’s been taught how to check his blood sugar and administer Glucagon. She’s fantastic.
This week, Laura will be absent. Since the school district is obligated under Jack’s 504 Plan to provide him with an aide, we emailed the school this morning to see who would sub for Laura.
The assistant principal replied, “Our only option for today is [a kindergarten aide]. Jack will have to stay with her during his recess.”
That meant that Jack would have to shift his schedule, eat lunch with the kindergarteners, and play at recess with these kids he doesn’t know.
“What???” Gregg asked rhetorically, when I told him the news. “Are you kidding me???!!!”
“Nope, I wish I was,” I sighed.
In general, the principal and assistant principal do an excellent job at running the school, and they’ve always come through for us. They did help us get that aide for Jack, which was an unprecedented move. But some times, their hands are tied and they just can’t do more than they already are. There was no other sub for Laura today. It’s not as if the school is overstaffed and there are extra people just waiting to be put to work. It’s not as if the nurse could leave her office, ignoring the remaining 900+ students, to tend to Jack’s needs. It’s not as if Jack’s teacher should give up his own lunch for Jack. It’s not as if they can put someone, who’s not trained in diabetes management, in charge of Jack; that would put Jack in danger, put their jobs in jeopardy and put the district at risk legally, if something bad happened. At least the kindergarten aide has been trained and she knows Jack from last year.
But there is a general lack of empathy that gets under my skin (and Gregg’s) and irritates the heck out of me. Jack is just an item on their “to do” list: find sub for Laura to monitor Jack Bonn. Check! They don’t care about his feelings, and I understand that they can’t. They have a job to do. They have 900+ students. They can’t make special accommodations for my kid. They can’t worry about his feelings, and I don’t expect them to care deeply about my son’s emotions and desires. I realize they’re just making “business” decisions.
But, would you want to be a first grader relegated to spending time with a kindergarten aide and her kindergarten class? That’s like a kid’s equivalent of a demotion. Can you imagine the embarrassment? That would make Jack a prime target for teasing. Plus, he already feels different.
And if we were to have allowed that to happen, I know we would have heard about it from Jack. I can imagine his wrath at the end of the school day. “Mom! I had to eat lunch with the kindergarteners! The kindergarteners! Why, mom? Why?! Why couldn’t you have come to school to spend lunch and recess with me?”
While the assistant principal’s solution may have met the requirements of Jack’s 504 Plan and ensured Jack’s physical well-being, it also would have been detrimental to his emotional and mental health.
I couldn’t do that to him. I couldn’t damage his spirit. He’s already “the kid with diabetes.” I couldn’t make him feel worse. It wouldn’t be fair. It wouldn’t be smart. So I spent lunch and recess with Jack today.
The upside of the situation was that it presented me with an opportunity to spend some one-on-one time with Jack. It also gave me a chance to get to know his classmates better. And it gave me a good laugh. I couldn’t help but chuckle when I saw Jack eat his cookie before his sandwich (“dessert first!”) and then abandon his clementine, because “it takes too much time to eat a clementine, even if it is peeled and sectioned.” (Note to self: pack no more clementines in Jack’s lunch box.)
I was also able to follow him out to the fields where he kicked around a soccer ball with his friends and searched for four-leaf clovers in the grass.
The downside will be dealing with Madeline, who is bound to be jealous and upset, because I didn’t have lunch with her today. I will visit Madeline at school after Laura returns to work, but in the mean time, I will face a severe case of sibling rivalry complete with hurt feelings. And I will feel sad for Madeline, who may understand why it’s important that I spend time with Jack at school, but who doesn’t like it at all.
But what’s mom to do? Jack is my baby and I will do whatever I can to ensure his complete well-being. So I felt compelled to visit him at school today. And Madeline is my baby too, and I will do whatever I can to ensure her complete well-being. So I’ll visit her next week. Thank goodness I have the time and flexibility to this. I don’t know what I’d do, if I had a job outside of the home.
Dessert First!
Looking for a four-leaf clover after lunch
Playing soccer with his friends
This week, Laura will be absent. Since the school district is obligated under Jack’s 504 Plan to provide him with an aide, we emailed the school this morning to see who would sub for Laura.
The assistant principal replied, “Our only option for today is [a kindergarten aide]. Jack will have to stay with her during his recess.”
That meant that Jack would have to shift his schedule, eat lunch with the kindergarteners, and play at recess with these kids he doesn’t know.
“What???” Gregg asked rhetorically, when I told him the news. “Are you kidding me???!!!”
“Nope, I wish I was,” I sighed.
In general, the principal and assistant principal do an excellent job at running the school, and they’ve always come through for us. They did help us get that aide for Jack, which was an unprecedented move. But some times, their hands are tied and they just can’t do more than they already are. There was no other sub for Laura today. It’s not as if the school is overstaffed and there are extra people just waiting to be put to work. It’s not as if the nurse could leave her office, ignoring the remaining 900+ students, to tend to Jack’s needs. It’s not as if Jack’s teacher should give up his own lunch for Jack. It’s not as if they can put someone, who’s not trained in diabetes management, in charge of Jack; that would put Jack in danger, put their jobs in jeopardy and put the district at risk legally, if something bad happened. At least the kindergarten aide has been trained and she knows Jack from last year.
But there is a general lack of empathy that gets under my skin (and Gregg’s) and irritates the heck out of me. Jack is just an item on their “to do” list: find sub for Laura to monitor Jack Bonn. Check! They don’t care about his feelings, and I understand that they can’t. They have a job to do. They have 900+ students. They can’t make special accommodations for my kid. They can’t worry about his feelings, and I don’t expect them to care deeply about my son’s emotions and desires. I realize they’re just making “business” decisions.
But, would you want to be a first grader relegated to spending time with a kindergarten aide and her kindergarten class? That’s like a kid’s equivalent of a demotion. Can you imagine the embarrassment? That would make Jack a prime target for teasing. Plus, he already feels different.
And if we were to have allowed that to happen, I know we would have heard about it from Jack. I can imagine his wrath at the end of the school day. “Mom! I had to eat lunch with the kindergarteners! The kindergarteners! Why, mom? Why?! Why couldn’t you have come to school to spend lunch and recess with me?”
While the assistant principal’s solution may have met the requirements of Jack’s 504 Plan and ensured Jack’s physical well-being, it also would have been detrimental to his emotional and mental health.
I couldn’t do that to him. I couldn’t damage his spirit. He’s already “the kid with diabetes.” I couldn’t make him feel worse. It wouldn’t be fair. It wouldn’t be smart. So I spent lunch and recess with Jack today.
The upside of the situation was that it presented me with an opportunity to spend some one-on-one time with Jack. It also gave me a chance to get to know his classmates better. And it gave me a good laugh. I couldn’t help but chuckle when I saw Jack eat his cookie before his sandwich (“dessert first!”) and then abandon his clementine, because “it takes too much time to eat a clementine, even if it is peeled and sectioned.” (Note to self: pack no more clementines in Jack’s lunch box.)
I was also able to follow him out to the fields where he kicked around a soccer ball with his friends and searched for four-leaf clovers in the grass.
The downside will be dealing with Madeline, who is bound to be jealous and upset, because I didn’t have lunch with her today. I will visit Madeline at school after Laura returns to work, but in the mean time, I will face a severe case of sibling rivalry complete with hurt feelings. And I will feel sad for Madeline, who may understand why it’s important that I spend time with Jack at school, but who doesn’t like it at all.
But what’s mom to do? Jack is my baby and I will do whatever I can to ensure his complete well-being. So I felt compelled to visit him at school today. And Madeline is my baby too, and I will do whatever I can to ensure her complete well-being. So I’ll visit her next week. Thank goodness I have the time and flexibility to this. I don’t know what I’d do, if I had a job outside of the home.
Dessert First!
Looking for a four-leaf clover after lunch
Playing soccer with his friendsMonday, January 18, 2010
A Perfect Play Date
What a great afternoon Jack enjoyed on Saturday! We dropped him off for a few hours at the home of his friend Max for a play date. Doesn’t sound like much of a big deal, does it? It was just a play date, after all. Most kids and parents take play dates for granted and enjoy them often.
To Jack, Saturday’s drop-off play date was a very big deal. Since his diagnosis, his play dates at others’ houses have been few and far between, not to mention brief. We have a few close friends whom we trust, who aren’t afraid of diabetes and who have learned about managing and treating the disease, and Jack has gone to their homes to play with their kids without us for short periods of time. Those friends all live nearby, and if something happened to Jack, we could be at their homes in a matter of minutes.
I’m trying to recall the last time Jack went to someone else’s house without either Gregg or me. I can’t remember when that was. It’s been that long ago.
Usually, Jack’s friends come to our house to play. It’s just easier that way. Trusting others with Jack’s care—with Jack’s life—is scary! His blood sugar can change rapidly. Judgment calls must be made frequently. The adult in charge must be educated in diabetes management and able to respond quickly, make smart decisions and remain cool under pressure.
So Saturday Jack visited his friend Max, whose parents are thoroughly educated in diabetes management and are definitely able to respond quickly, make smart decisions and remain cool under pressure. If there are any parents we trust with Jack’s care, it’s Max’s parents, Jeanne and Matt. In fact, we trust them more than any others. What makes them so different from our other friends? Max has type 1 diabetes, too.
To Jack, Max isn’t just another friend. He is one of his favorite friends, and what’s so great is that diabetes isn’t their only shared connection. Jack and Max like so many of the same things: Legos, Bioncles and Star Wars just to name a few. They clicked immediately upon meeting each other for the first time last summer.
Their diabetes, however, definitely factors into their friendship. It is a common bond between them. Before eating, they test their blood together. When one feels low and needs to stop playing for a blood sugar check and possible snack, the other understands. They both had a team of friends and family participating in the JDRF Walk to Cure Diabetes in their honor. I could go on and on.
Whenever we get together with Max, Matt and Jeanne, as we did recently for lunch, the boys become united on the D front. They find it fun to test their blood and receive shots simultaneously.
Jack tests his blood sugar level.
Jack often feels like the odd man out. When Max is around, he is never the odd man out and he doesn’t feel so alone. Max makes Jack feel “normal.” Max gets Jack, Jack gets Max, and on Saturday, they had a blast together.
While they were playing at Max's house, Gregg, Madeline, Max (our Max) and I ran errands. We didn’t worry at all. We knew Jack was in good hands. And Jeanne, being the amazing friend that she is, knew exactly what would comfort and delight us; she sent us text messages. First, she wrote, “Having much fun playing Play-Doh.” She followed with a photo.
To Jack, Saturday’s drop-off play date was a very big deal. Since his diagnosis, his play dates at others’ houses have been few and far between, not to mention brief. We have a few close friends whom we trust, who aren’t afraid of diabetes and who have learned about managing and treating the disease, and Jack has gone to their homes to play with their kids without us for short periods of time. Those friends all live nearby, and if something happened to Jack, we could be at their homes in a matter of minutes.
I’m trying to recall the last time Jack went to someone else’s house without either Gregg or me. I can’t remember when that was. It’s been that long ago.
Usually, Jack’s friends come to our house to play. It’s just easier that way. Trusting others with Jack’s care—with Jack’s life—is scary! His blood sugar can change rapidly. Judgment calls must be made frequently. The adult in charge must be educated in diabetes management and able to respond quickly, make smart decisions and remain cool under pressure.
So Saturday Jack visited his friend Max, whose parents are thoroughly educated in diabetes management and are definitely able to respond quickly, make smart decisions and remain cool under pressure. If there are any parents we trust with Jack’s care, it’s Max’s parents, Jeanne and Matt. In fact, we trust them more than any others. What makes them so different from our other friends? Max has type 1 diabetes, too.
To Jack, Max isn’t just another friend. He is one of his favorite friends, and what’s so great is that diabetes isn’t their only shared connection. Jack and Max like so many of the same things: Legos, Bioncles and Star Wars just to name a few. They clicked immediately upon meeting each other for the first time last summer.
Their diabetes, however, definitely factors into their friendship. It is a common bond between them. Before eating, they test their blood together. When one feels low and needs to stop playing for a blood sugar check and possible snack, the other understands. They both had a team of friends and family participating in the JDRF Walk to Cure Diabetes in their honor. I could go on and on.
Whenever we get together with Max, Matt and Jeanne, as we did recently for lunch, the boys become united on the D front. They find it fun to test their blood and receive shots simultaneously.
Matt tests Max's blood before eating lunch together recently.
Jack tests his blood sugar level.
(Side note: Our waitress approached our table as the boys were testing their blood. She was taken back by the sight of these two little fellows with diabetes. “I don’t know how you do it,” she said. We hear that often. My standard answer is, “If this were your child, you would do it, too.” What else is there to say?)
Jack and Max receive their insulin injections after lunch.
Jack often feels like the odd man out. When Max is around, he is never the odd man out and he doesn’t feel so alone. Max makes Jack feel “normal.” Max gets Jack, Jack gets Max, and on Saturday, they had a blast together.
While they were playing at Max's house, Gregg, Madeline, Max (our Max) and I ran errands. We didn’t worry at all. We knew Jack was in good hands. And Jeanne, being the amazing friend that she is, knew exactly what would comfort and delight us; she sent us text messages. First, she wrote, “Having much fun playing Play-Doh.” She followed with a photo.
Jack makes a silly face while enjoying Play-Doh fun with Max.
Next she reported, “We’re doing a [blood sugar] check just because………165.” That was nice to read. She also informed us that “Max thought Jack testing himself was super cool.” Her last message stated, “Playing soccer and Frisbee with the dogs” and accompanied a cute video, showing Jack with Max's pugs.
When we arrived back at Max’s house, we found a very happy Jack, who did not want to leave. Madeline and our Max began playing, too. Next thing we knew, we had three children, who didn’t want to leave. It took us nearly an hour to exit Max’s house!
Ever since Jack’s diagnosis, Gregg and I have felt determined to never let diabetes stop our son from doing anything he wants to do. We have worked hard to make diabetes just one facet of Jack’s life. We have refused to allow diabetes to debilitate him. But leaving him under someone else’s charge is just not that easy. Jack’s well-being and safety is paramount. Yet, Jack needs to gain independence. All kids do. He needs to know that he will be fine without us at his side all the time.
Saturday’s play date was the happy medium. It enabled Jack to do something his siblings and non-D friends do all the time, while Gregg and I enjoyed a level of comfort and relaxation we wouldn’t otherwise have. So we will continue these play dates…not just because they’re healthy for Jack, but because they’re fun! And we’ll gladly reciprocate, as these play dates are just as important for Max as they are for Jack.
Thank you Max, Jeanne and Matt for a fabulous afternoon! We’ll be calling soon to invite Max over to our house.
Here are some photos of Jack and Max wrestling before we left Max's house. I guess that’s the guys’ way of saying “good bye.” These photos were taken with my phone, and the boys wouldn’t remain still for even a second. Hence, the quality isn’t the best, but they make me smile. So I’m posting them.
Friday, January 15, 2010
All for a Brighter Future
Imagine this. You’re in your 60s, and over the past five years, you’ve lost both of your brothers, your only siblings, to pancreatic cancer. You’ve lost your mother to another form of cancer as well, and your wife just won a battle with breast cancer. You’re in good shape, but you do suffer from pancreatitis. Top docs in the field tell you that the chances are good that your time is limited, as they expect you to develop inoperable pancreatic cancer, too. What do you do?
If you’re our dear friend Mike—and the above paragraph is his true story—you opt to undergo a pancreatectomy with simultaneous autologous islet cell transplantation. In layman’s terms, that means you elect to have your islet cells extracted from your pancreas and transplanted into your liver, after having your entire pancreas surgically removed. We’re talking major surgery with a high risk of a variety of complications and a lengthy recovery. Plus, because it’s elective surgery, it’s not covered by insurance and it’s very, very expensive. But how do you put a price tag on your life?
Mike’s surgery took place yesterday, and so far, so good. We won’t know whether the liver accepted the islet cells for a number of days, but if the surgery is successful, Mike will no longer live with the fear of pancreatic cancer. Not only that, but his liver will begin to function like a pancreas.
Mike and his wife Marcia aren’t just friends of the family. In our hearts, they are family. So we are hoping and praying and crossing our fingers that Mike’s surgery is a success. Nobody roasts a turkey as well as Mike, and we need him around for many more Thanksgivings! You hear that, Mike?! :)
His surgery took place out of town, so I’ve only been able to speak with Marcia on the phone. Today, she mentioned that the surgeons harvested approximately 500,000 islet cells from Mike’s pancreas. 500,000 cells! Only 250,000 are needed. When I heard that, all I could think was, “Gee, could we have that spare 250,000 for Jack?”
Can you imagine if we could take Mike’s unneeded islet cells and transplant them into Jack’s body, thereby curing him of his diabetes? If that were possible, I’d be willing to undergo surgery to harvest my own islet cells and donate them to Jack! Gregg and my mom would volunteer for that, too. If only that were possible…if only diabetes weren’t an autoimmune disease…if only rejection weren’t an issue…if only… Some day…
In the mean time, we’re grateful that Mike will be spared from suffering the same fate as his brothers. One potential outcome for Mike is that his liver will reject his islet cells, leaving him with type 1 diabetes. Before his surgery, we told Mike that if that happens, we’ll show him the ropes. :)
Time will tell how Mike fares. Please keep him in your thoughts and prayers. Send him some positive vibes and healing energy. We need Mike around for a number of years to come. We love you, Mike and Marcia!
*I changed their names to give them anonymity. Post edit: I wrote the above last week, immediately following Mike's surgery. I waited to post it, because I wanted Mike and Marcia's permission to publicly tell their story. They granted me permission, for which I say a big THANK YOU!
Again, please pray and send positive energy and good healing, vibes Mike's way. We still don't know the outcome of the surgery, but Mike is recovering and healing albeit with a few complications. He said something the other day that brought tears to my eyes, "I'm doing this for Jack." Mike knows what we go through, living day in and day out with type 1 diabetes. He's seen it first-hand. Not only does he want a better future for himself, but he wants a brighter future for Jack. So does Marcia. Thus, I repeat: we love you, Mike and Marcia!
If you’re our dear friend Mike—and the above paragraph is his true story—you opt to undergo a pancreatectomy with simultaneous autologous islet cell transplantation. In layman’s terms, that means you elect to have your islet cells extracted from your pancreas and transplanted into your liver, after having your entire pancreas surgically removed. We’re talking major surgery with a high risk of a variety of complications and a lengthy recovery. Plus, because it’s elective surgery, it’s not covered by insurance and it’s very, very expensive. But how do you put a price tag on your life?
Mike’s surgery took place yesterday, and so far, so good. We won’t know whether the liver accepted the islet cells for a number of days, but if the surgery is successful, Mike will no longer live with the fear of pancreatic cancer. Not only that, but his liver will begin to function like a pancreas.
Mike and his wife Marcia aren’t just friends of the family. In our hearts, they are family. So we are hoping and praying and crossing our fingers that Mike’s surgery is a success. Nobody roasts a turkey as well as Mike, and we need him around for many more Thanksgivings! You hear that, Mike?! :)
His surgery took place out of town, so I’ve only been able to speak with Marcia on the phone. Today, she mentioned that the surgeons harvested approximately 500,000 islet cells from Mike’s pancreas. 500,000 cells! Only 250,000 are needed. When I heard that, all I could think was, “Gee, could we have that spare 250,000 for Jack?”
Can you imagine if we could take Mike’s unneeded islet cells and transplant them into Jack’s body, thereby curing him of his diabetes? If that were possible, I’d be willing to undergo surgery to harvest my own islet cells and donate them to Jack! Gregg and my mom would volunteer for that, too. If only that were possible…if only diabetes weren’t an autoimmune disease…if only rejection weren’t an issue…if only… Some day…
In the mean time, we’re grateful that Mike will be spared from suffering the same fate as his brothers. One potential outcome for Mike is that his liver will reject his islet cells, leaving him with type 1 diabetes. Before his surgery, we told Mike that if that happens, we’ll show him the ropes. :)
Time will tell how Mike fares. Please keep him in your thoughts and prayers. Send him some positive vibes and healing energy. We need Mike around for a number of years to come. We love you, Mike and Marcia!
*I changed their names to give them anonymity. Post edit: I wrote the above last week, immediately following Mike's surgery. I waited to post it, because I wanted Mike and Marcia's permission to publicly tell their story. They granted me permission, for which I say a big THANK YOU!
Again, please pray and send positive energy and good healing, vibes Mike's way. We still don't know the outcome of the surgery, but Mike is recovering and healing albeit with a few complications. He said something the other day that brought tears to my eyes, "I'm doing this for Jack." Mike knows what we go through, living day in and day out with type 1 diabetes. He's seen it first-hand. Not only does he want a better future for himself, but he wants a brighter future for Jack. So does Marcia. Thus, I repeat: we love you, Mike and Marcia!
Wednesday, January 6, 2010
The F Word
The comedy continues. The kids made Gregg and I laugh so hard tonight that I cried. It started with Madeline saying, “I know what the F word is.”
“You know what? The F word? What’s the F word?” I responded, trying to play dumb.
“You know, mom. It’s fuckin.” “It’s what? Fuckin?” I asked quizzically, as if “fuckin” was a non-word. And yes, she said "fuckin," not “fuck” or “fucking.”
“Yeah, fuckin, like ‘where’s my fuckin’ ice cream?'” Her explanation made me chuckle, but I kept my composure and asked, “Who taught you that?”
Madeline named a friend from school. Never in a million years would I have guessed that this particular little girl would have taught my daughter the F word. This girl is the most quiet, sweet, gentle, polite child Madeline knows. Of all of Madeline’s friends, this girl is the goody-two-shoes. I find it funny that she is the one talking trash, and I’m sure her mother would be absolutely mortified, if she knew her daughter was teaching others the fabulous F word.
Here’s where things really got funny, and it’s probably one of those you-had-to-be-there situations, but Jack and Max caught wind of Madeline’s new-found phrase and decided to give it a whirl. “Fuckin ice cream!” Max mimicked his sister.
“Fuckin funny!” Jack exclaimed. Next, Jack let us know that he knows another lovely term. “Fuckin chicken ass!” he yelled.
And that’s when Gregg and I lost it. Fuckin chicken ass? Where did he come up with that?
“Oh, my G-d, when did he learn the A word?” I asked Gregg, laughing so hard I could barely get the words out.
Not wanting the kids to see us laughing hysterically and hoping to downplay the whole discussion, Gregg and I had to excuse ourselves fast. We had been in the kitchen preparing dinner, and so we ducked into the pantry, closed the door, held it shut for 10 seconds to keep the kids out and laughed our fuckin chicken asses off. I’ve never seen Gregg’s face so red.
After we’d exited the pantry and rejoined the kids in the kitchen, we pretended as if “fuckin” and “ass” were words like “silly” and “boogers.” We ignored the kids cursing commentary and they stopped.
It feels as if we reached a milestone tonight. Before we know it, the S word will no longer be “stupid.” It’s not exactly a proud moment in parenting, but I do wish we’d caught it on video, because it really was that funny, and for a few minutes, it let us forget that Jack’s numbers were “fuckin” horrible tonight.
“You know what? The F word? What’s the F word?” I responded, trying to play dumb.
“You know, mom. It’s fuckin.” “It’s what? Fuckin?” I asked quizzically, as if “fuckin” was a non-word. And yes, she said "fuckin," not “fuck” or “fucking.”
“Yeah, fuckin, like ‘where’s my fuckin’ ice cream?'” Her explanation made me chuckle, but I kept my composure and asked, “Who taught you that?”
Madeline named a friend from school. Never in a million years would I have guessed that this particular little girl would have taught my daughter the F word. This girl is the most quiet, sweet, gentle, polite child Madeline knows. Of all of Madeline’s friends, this girl is the goody-two-shoes. I find it funny that she is the one talking trash, and I’m sure her mother would be absolutely mortified, if she knew her daughter was teaching others the fabulous F word.
Here’s where things really got funny, and it’s probably one of those you-had-to-be-there situations, but Jack and Max caught wind of Madeline’s new-found phrase and decided to give it a whirl. “Fuckin ice cream!” Max mimicked his sister.
“Fuckin funny!” Jack exclaimed. Next, Jack let us know that he knows another lovely term. “Fuckin chicken ass!” he yelled.
And that’s when Gregg and I lost it. Fuckin chicken ass? Where did he come up with that?
“Oh, my G-d, when did he learn the A word?” I asked Gregg, laughing so hard I could barely get the words out.
Not wanting the kids to see us laughing hysterically and hoping to downplay the whole discussion, Gregg and I had to excuse ourselves fast. We had been in the kitchen preparing dinner, and so we ducked into the pantry, closed the door, held it shut for 10 seconds to keep the kids out and laughed our fuckin chicken asses off. I’ve never seen Gregg’s face so red.
After we’d exited the pantry and rejoined the kids in the kitchen, we pretended as if “fuckin” and “ass” were words like “silly” and “boogers.” We ignored the kids cursing commentary and they stopped.
It feels as if we reached a milestone tonight. Before we know it, the S word will no longer be “stupid.” It’s not exactly a proud moment in parenting, but I do wish we’d caught it on video, because it really was that funny, and for a few minutes, it let us forget that Jack’s numbers were “fuckin” horrible tonight.
Tuesday, January 5, 2010
Laugh Factory
There’s never a dull moment around here. The kids have had me laughing this afternoon.
Madeline, Jack and I were picking up Max from preschool, and it was snack time. Seeing what the teachers were serving her brother and his friends, and wanting some herself, Madeline asked, “Mom, can you please buy us some graham crappers?”
It was an innocent mistake…and funny. She immediately realized what she’d said and started to giggle.
In the car, on the way home from the preschool, Jack asked, “Why didn’t you give me a cool name, like Cactus?”
Cactus? My son would prefer to have been named Cactus over Jack. What can a mom do, but laugh?
Later on at home, all three kids were wrestling with each other when Madeline accidentally stepped on Max’s hand. Max burst into tears and came running over to me. “Owww,” he cried. “My hand hurts and now I can’t work!”
“You mean you can’t play?” I asked.
“No, mom,” he said indignantly. “I meant what I said. Now I can’t work!”
He can’t work? It’s not as if my four-year-old has a job, a “to do” list or a wood shop in the garage. I couldn’t help but laugh as I hugged him, before going to the freezer to fetch an ice pack. (He’s now fine, by the way. It was nothing more than a momentary “owwie.”)
Madeline, Jack and I were picking up Max from preschool, and it was snack time. Seeing what the teachers were serving her brother and his friends, and wanting some herself, Madeline asked, “Mom, can you please buy us some graham crappers?”
It was an innocent mistake…and funny. She immediately realized what she’d said and started to giggle.
In the car, on the way home from the preschool, Jack asked, “Why didn’t you give me a cool name, like Cactus?”
Cactus? My son would prefer to have been named Cactus over Jack. What can a mom do, but laugh?
Later on at home, all three kids were wrestling with each other when Madeline accidentally stepped on Max’s hand. Max burst into tears and came running over to me. “Owww,” he cried. “My hand hurts and now I can’t work!”
“You mean you can’t play?” I asked.
“No, mom,” he said indignantly. “I meant what I said. Now I can’t work!”
He can’t work? It’s not as if my four-year-old has a job, a “to do” list or a wood shop in the garage. I couldn’t help but laugh as I hugged him, before going to the freezer to fetch an ice pack. (He’s now fine, by the way. It was nothing more than a momentary “owwie.”)
Monday, January 4, 2010
Big oops!
Jack’s school nurse called this morning. “Is it possible that you left Jack’s blood sugar meter and his test strips at home?” she asked.
“Seriously? We left them at home?” I responded in disbelief.
“Ugh, I can’t believe we did that,” I sighed.
“How could we?” I thought.
Guilt immediately set in. I felt awful. If there’s anything Jack needs at school, it’s his meter and test strips. They’re vital to his well-being. Thank goodness, our wonderful nurse (love, love, love her!) keeps a spare meter and vial of test strips in her office. She saved the day! And she saved me from having to run over to the school, which I would have done in a heartbeat, if she hadn’t volunteered her supplies.
I couldn’t believe, though, that we didn’t send Jack to school with all of his necessary equipment. After all, I spent several hours yesterday preparing for the kids’ return to school. I baked cookies, washed and cut vegetables and made hard-boiled eggs for their meals and snacks this week. I made turkey sandwiches, peeled and sectioned clementines and then filled lunch boxes. I created a menu with a tally of Jack’s carbs. I washed and folded laundry. I set out clothes for today. I updated reading logs, found school library books and packed back packs, not forgetting snacks. I completed paperwork and set it out along with two bags of syringes and a new vial of insulin to be delivered to the nurse this morning. I remembered to charge Jack’s cell phone (for emergencies only) and add it to his D kit. I checked to make sure his D kit contained Glucagon, fruit snacks, bottles of juice and water and a full tube of glucose tablets. I am nothing, if not thorough, and I went to bed last night, feeling confident that the kids were all ready for school.
This morning, Gregg went through Jack’s D kit himself. He even unpacked the contents of the back pocket, repositioning the supplies so that they fit better. Obviously, he didn’t open the front pocket! That’s where we keep the meter, test strips, lancing device and alcohol pads. How we managed to send off Jack without his meter and test strips is beyond me! What a big oops!
Sigh…
Besides informing me of our neglect, the nurse also had questions about her meter. It needed new batteries, so she borrowed the extras that we keep in Jack’s D kit. (Oh, yes, there were spare batteries all right! But, no meter or test strips!) But then she couldn’t figure out how to calibrate the meter to the code number on the vial of test strips. Long story short, I talked her through everything so that she could test Jack.
In the background, I could hear Jack. “What’s taking so long?” he asked. “Did my parents really forget my meter and test strips?”
I felt so badly. Big, big, big oops! I wanted to cry. His classmates were on the playground for recess. My kiddo was stuck waiting in the nurse’s office, because his slacker parents failed to send him to school with his essential supplies. And the nurse’s meter told us Jack’s blood sugar was in the upper 300s. Too high!
“I need to drink some water, and if I could just get out of here, I could run around the playground and that would help,” I could hear Jack say.
You have to know Jack to know that when he says stuff like that, he isn’t whining or complaining. He’s more matter of fact.
Tonight at dinner, Jack said, “Hey dad, did you know you forgot to put my meter and test strips in my diabetes kit?”
He wasn’t mad or upset. He was simply recalling the events of the day, but he never once mentioned the fact that he missed most of his morning recess. Gregg acknowledged our mistake and then we both apologized to Jack, telling him how badly we felt.
Jack then attempted to console us, “At least, you remembered my poker and alcohol pads!”
There Gregg and I were feeling guilty and disappointed in ourselves, and Jack was trying to cheer us up and make it all better. He’s such a good kid, and I’m so glad he’s mine.
“Seriously? We left them at home?” I responded in disbelief.
“Ugh, I can’t believe we did that,” I sighed.
“How could we?” I thought.
Guilt immediately set in. I felt awful. If there’s anything Jack needs at school, it’s his meter and test strips. They’re vital to his well-being. Thank goodness, our wonderful nurse (love, love, love her!) keeps a spare meter and vial of test strips in her office. She saved the day! And she saved me from having to run over to the school, which I would have done in a heartbeat, if she hadn’t volunteered her supplies.
I couldn’t believe, though, that we didn’t send Jack to school with all of his necessary equipment. After all, I spent several hours yesterday preparing for the kids’ return to school. I baked cookies, washed and cut vegetables and made hard-boiled eggs for their meals and snacks this week. I made turkey sandwiches, peeled and sectioned clementines and then filled lunch boxes. I created a menu with a tally of Jack’s carbs. I washed and folded laundry. I set out clothes for today. I updated reading logs, found school library books and packed back packs, not forgetting snacks. I completed paperwork and set it out along with two bags of syringes and a new vial of insulin to be delivered to the nurse this morning. I remembered to charge Jack’s cell phone (for emergencies only) and add it to his D kit. I checked to make sure his D kit contained Glucagon, fruit snacks, bottles of juice and water and a full tube of glucose tablets. I am nothing, if not thorough, and I went to bed last night, feeling confident that the kids were all ready for school.
This morning, Gregg went through Jack’s D kit himself. He even unpacked the contents of the back pocket, repositioning the supplies so that they fit better. Obviously, he didn’t open the front pocket! That’s where we keep the meter, test strips, lancing device and alcohol pads. How we managed to send off Jack without his meter and test strips is beyond me! What a big oops!
Sigh…
Besides informing me of our neglect, the nurse also had questions about her meter. It needed new batteries, so she borrowed the extras that we keep in Jack’s D kit. (Oh, yes, there were spare batteries all right! But, no meter or test strips!) But then she couldn’t figure out how to calibrate the meter to the code number on the vial of test strips. Long story short, I talked her through everything so that she could test Jack.
In the background, I could hear Jack. “What’s taking so long?” he asked. “Did my parents really forget my meter and test strips?”
I felt so badly. Big, big, big oops! I wanted to cry. His classmates were on the playground for recess. My kiddo was stuck waiting in the nurse’s office, because his slacker parents failed to send him to school with his essential supplies. And the nurse’s meter told us Jack’s blood sugar was in the upper 300s. Too high!
“I need to drink some water, and if I could just get out of here, I could run around the playground and that would help,” I could hear Jack say.
You have to know Jack to know that when he says stuff like that, he isn’t whining or complaining. He’s more matter of fact.
Tonight at dinner, Jack said, “Hey dad, did you know you forgot to put my meter and test strips in my diabetes kit?”
He wasn’t mad or upset. He was simply recalling the events of the day, but he never once mentioned the fact that he missed most of his morning recess. Gregg acknowledged our mistake and then we both apologized to Jack, telling him how badly we felt.
Jack then attempted to console us, “At least, you remembered my poker and alcohol pads!”
There Gregg and I were feeling guilty and disappointed in ourselves, and Jack was trying to cheer us up and make it all better. He’s such a good kid, and I’m so glad he’s mine.
Friday, January 1, 2010
Happy New Year!
Happy new year!
We ushered in 2010 with friends. Along with several other families, we went to another family's house for a potluck dinner and games. We had a great time, but it was a challenging D night.
I'm not complaining. We truly enjoyed ourselves. We appreciated the hospitality of our hosts, who are dear friends. We had fun and were glad to spend time with a variety of friends, some of whom we hadn't seen in a while. We made new friends, too.
After dinner, Gregg played poker with the guys, while I played mahjong with the women. The kids had a blast playing with their pals. We chit chatted and schmoozed and caught up. We joked and laughed and kicked back. I'd say the party was a smashing success, and I'm so glad we went.
But diabetes follows us everywhere. There's no escape...ever...and some times, when we're not in control of a situation, we find diabetes more difficult. Last night was one of those times.
The evening started with a big carb fest. Little puff pastry appetizers were first served. Then, the dinner buffet consisted of pasta, pasta and more pasta: penne, macaroni and cheese, cold sesame noodles and stuffed shells. Potato soup sat simmering in a crock pot. Garlic bread and a salad completed the spread.
It all tasted terrific, but there was not one protein or low-carb dish, other than the salad, which didn't tempt Jack in the least. My kids are all carb junkies and were happy to eat mac 'n cheese, and only mac 'n cheese, for dinner. It was a big carb load for Jack, but with a relative degree of ease, we could calculate the number of carbs Jack consumed and give him insulin accordingly. No big deal.
The trouble was with the timing. Normally, if we are going to eat dessert, we eat it immediately after dinner, so that Jack only has to endure one injection of insulin. Last night, we expected the dinner buffet to be replaced by a dessert buffet, and it was. After clearing the pasta, our hosts spread out trays of cookies, brownies and other assorted sweet stuff. But then they kept the confections covered in foil, and after numerous kids asked, "Can we have dessert now?" we discovered that they had no intention of serving dessert until much later in the evening.
It wasn't as if we could say, "Hey, we know you have this agenda for the evening, but would you mind switching things up a bit and tossing your plan out the window to accommodate Jack?" We had put off Jack's insulin shot, figuring we'd inject once, covering dinner and dessert together. If we'd known that dessert wasn't going to be served for another hour or two, we would have given him his insulin immediately after he finished his plate of pasta. Fotunately, we had enough syringes with us, and once we realized dessert would be delayed, we gave him his shot.
I don't know whether we miscalculated the carbs on Jack's dinner plate and gave him too much insulin, or whether the games of tag and other physical activities affected Jack, or whether it was a combination, but Jack's blood sugar sank to 44. The good thing was that his low hit just as the desserts were being served. Nonetheless, we debated. Do we treat the low with just dessert? What if the sugars aren't fast-acting and he's going down fast? What if he nibbles on dessert, eating slowly, as he often does? He's already at 44; we can't afford to make a mistake and let him go down further? Do we give him juice to treat the low, let him eat dessert and then give him insulin to cover the dessert carbs?
It was a judgment call. We decided to give him juice to elevate his blood sugar quickly, allowing him to eat his dessert at whatever pace he wanted. In the end, that turned out to be a good decision, even though he consumed a massive amount of carbs. When Jack eyed the spread of goodies, he wanted one of this, one of that, two of those and some of that other thing, just like all of the other kids...just like all of the adults! There was so much from which to choose, and it all looked amazing. It was carb fest number two!
Gregg and I have become really good at estimating carbs. (Yes, I know I just stated above that we may have miscalculated Jack's dinner, but in general, we really have honed our estimating skills. And, my guess is that all of Jack's running around last night lead to his low.) We still read nutrition labels, we still consult our Calorie King book, we still look up information online, but in situations like last night, when no information is available, we can wing it.
We let Jack eat the sweets he wanted. We watched him closely, we determined his carb consumption to the best of our ability and then we injected accordingly. I am happy to report that we estimated well, and his numbers were great for the rest of the night. Not an easy feat when you consider he consumed a cupcake, brownies, chocolate-covered pretzels and more.
And then the ball was about to drop and out came champagne and sparkling apple juice. I saw the champagne glasses and all I could think was, "More carbs! Cheers!" Thank goodness, I had the foresight to bring low-carb juice with me. I asked our hostess for an empty champagne glass and filled it with Jack's juice. He toasted 2010, and we avoided yet another shot of insulin.
So here's to a new year with the same old diabetes. I pray 2010 is the year a cure is discovered. Mostly, I hope for a year filled with good health and good times for all!
Happy new year!
We ushered in 2010 with friends. Along with several other families, we went to another family's house for a potluck dinner and games. We had a great time, but it was a challenging D night.
I'm not complaining. We truly enjoyed ourselves. We appreciated the hospitality of our hosts, who are dear friends. We had fun and were glad to spend time with a variety of friends, some of whom we hadn't seen in a while. We made new friends, too.
After dinner, Gregg played poker with the guys, while I played mahjong with the women. The kids had a blast playing with their pals. We chit chatted and schmoozed and caught up. We joked and laughed and kicked back. I'd say the party was a smashing success, and I'm so glad we went.
But diabetes follows us everywhere. There's no escape...ever...and some times, when we're not in control of a situation, we find diabetes more difficult. Last night was one of those times.
The evening started with a big carb fest. Little puff pastry appetizers were first served. Then, the dinner buffet consisted of pasta, pasta and more pasta: penne, macaroni and cheese, cold sesame noodles and stuffed shells. Potato soup sat simmering in a crock pot. Garlic bread and a salad completed the spread.
It all tasted terrific, but there was not one protein or low-carb dish, other than the salad, which didn't tempt Jack in the least. My kids are all carb junkies and were happy to eat mac 'n cheese, and only mac 'n cheese, for dinner. It was a big carb load for Jack, but with a relative degree of ease, we could calculate the number of carbs Jack consumed and give him insulin accordingly. No big deal.
The trouble was with the timing. Normally, if we are going to eat dessert, we eat it immediately after dinner, so that Jack only has to endure one injection of insulin. Last night, we expected the dinner buffet to be replaced by a dessert buffet, and it was. After clearing the pasta, our hosts spread out trays of cookies, brownies and other assorted sweet stuff. But then they kept the confections covered in foil, and after numerous kids asked, "Can we have dessert now?" we discovered that they had no intention of serving dessert until much later in the evening.
It wasn't as if we could say, "Hey, we know you have this agenda for the evening, but would you mind switching things up a bit and tossing your plan out the window to accommodate Jack?" We had put off Jack's insulin shot, figuring we'd inject once, covering dinner and dessert together. If we'd known that dessert wasn't going to be served for another hour or two, we would have given him his insulin immediately after he finished his plate of pasta. Fotunately, we had enough syringes with us, and once we realized dessert would be delayed, we gave him his shot.
I don't know whether we miscalculated the carbs on Jack's dinner plate and gave him too much insulin, or whether the games of tag and other physical activities affected Jack, or whether it was a combination, but Jack's blood sugar sank to 44. The good thing was that his low hit just as the desserts were being served. Nonetheless, we debated. Do we treat the low with just dessert? What if the sugars aren't fast-acting and he's going down fast? What if he nibbles on dessert, eating slowly, as he often does? He's already at 44; we can't afford to make a mistake and let him go down further? Do we give him juice to treat the low, let him eat dessert and then give him insulin to cover the dessert carbs?
It was a judgment call. We decided to give him juice to elevate his blood sugar quickly, allowing him to eat his dessert at whatever pace he wanted. In the end, that turned out to be a good decision, even though he consumed a massive amount of carbs. When Jack eyed the spread of goodies, he wanted one of this, one of that, two of those and some of that other thing, just like all of the other kids...just like all of the adults! There was so much from which to choose, and it all looked amazing. It was carb fest number two!
Gregg and I have become really good at estimating carbs. (Yes, I know I just stated above that we may have miscalculated Jack's dinner, but in general, we really have honed our estimating skills. And, my guess is that all of Jack's running around last night lead to his low.) We still read nutrition labels, we still consult our Calorie King book, we still look up information online, but in situations like last night, when no information is available, we can wing it.
We let Jack eat the sweets he wanted. We watched him closely, we determined his carb consumption to the best of our ability and then we injected accordingly. I am happy to report that we estimated well, and his numbers were great for the rest of the night. Not an easy feat when you consider he consumed a cupcake, brownies, chocolate-covered pretzels and more.
And then the ball was about to drop and out came champagne and sparkling apple juice. I saw the champagne glasses and all I could think was, "More carbs! Cheers!" Thank goodness, I had the foresight to bring low-carb juice with me. I asked our hostess for an empty champagne glass and filled it with Jack's juice. He toasted 2010, and we avoided yet another shot of insulin.
So here's to a new year with the same old diabetes. I pray 2010 is the year a cure is discovered. Mostly, I hope for a year filled with good health and good times for all!
Happy new year!
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