Update on "G"

In October I wrote about our friend's little guy's diagnosis (The Rest Is Still Unwritten). I have to share what his mom, Lisa, wrote recently - it is truly beautiful:

"It’s been three months since Griffin’s diagnosis.

It’s hard for me to believe the progress we’ve made in this relatively short period of time. In the beginning, I couldn't even think about it, much less talk about it, without fighting tears. Then as the days turned into weeks, I would surprise myself by being able to hold a conversation about it without crying or without my lip trembling. Time helped with that, but so did the realization that many people didn’t know what type 1 diabetes is. A big part of my conversations with people ended up with me educating them about what it is (an autoimmune disease) and what it’s not (the “bad” diabetes.) As opposed to the good diabetes? Having to tell his story over and over and over out loud, explaining what it meant for him and us, helped me to see it for what it is as well as what it isn’t, and get to a less emotional place.

I tried not to cry around Griffin. The two exceptions I can think of happened pretty close together. The first was just after I took him in to have his blood sugar tested for the very first time, having been suspicious for a few weeks. The phlebotomist in the lab who took Griffin’s blood was in training. When she saw the number, she looked at her trainer and then at me with that expression I have seen many times since. The number was terribly high, and I knew what it meant. I kept my tears in check as we got his sweatshirt back on, and as we walked upstairs to pediatrics where they told us the doctor would be waiting to see us. The 2 of us sat in the waiting room, waiting for the Doctor to tell us what I already knew... what I had known on some subconscious level for weeks... But watching him climb around the bench we were sitting on and look out the window with his smile and his happy attitude, even as sick as his body was (this feeling had become his normal over the past few months) it made me well up to think that the next window he’d be looking out would be from a hospital room. I knew he’d be admitted with a number that high. He noticed me crying and asked why - and out of an absolute lack of any preparation for the question, and an impulse to tell the truth, I said, “Griffin, you have diabetes. That means your body doesn’t make insulin, and you need insulin to process the food you eat. And I feel sad about that right now but we are going to learn about how to keep you healthy and happy.” And he smiled at me and gave me a hug and with that, led me toward keeping my chin up. The second time I cried in front of him was about a week after he got out of the hospital. We were in the cereal aisle and he wanted sugary cereal and fruit snacks and I told him that those weren’t good choices for us. He cried and said, “I wish I didn’t have diabetes.” And I cried, too, and I said, “Griff, I wish you didn’t have it either. But you do, and we have to make good choices to keep you healthy.” I wasn’t crying because of the fruit snacks or sugary cereal--let’s face it, he’s better off without that stuff--but crying because of the magnitude of the issue, for the rest of his life it meant much, much, more. And we gave each other a hug and moved on.

I’ve spent an enormous amount of my waking life thinking about this, thinking about the now and the later, wondering how things will be for him, and of course, practicing acceptance. I have spent an extremely small amount of time hoping for a cure. I imagine once Griffin’s blood sugar management is more in his own hands, and after some of the initial life transition wears off, I may spend a little more time in that place, wishing. Hoping. But for now, most of the energy I have for this subject is tied up in learning more about it and planning and measuring and counting and watching the clock to figure out if he should test or snack or wait to eat so we can get an accurate test, etc. etc. etc.

People have remarked that he has responded to all of this very well, and that really is an understatement. He is easygoing about the blood testing (can do it on his own now!) and even about the shots. Every day I am thankful that he doesn’t push back with the needles. Since September 7th he has been poked about 750 times, between frequent blood testing and at least 4 shots of insulin per day. Yes, the needles are smaller than they once were. Yes, it’s great that he has a disease he can “manage.” Yes, he’s very young and this will always be his version of normal. All those things are true and are, most often, spoken by people who don’t have to watch their children go through this process every day, don’t have to approach every meal as a math problem, every blood test as a barometer of his health. And it’s not as simple as just insulin and food--activity and carb ratios and insulin sensitivity and blood sugar goals all have to be factored in--and can change on a dime. Since Griffin’s diagnosis, my empathy for parents of children with severe food allergies has gone through the roof. You can’t know the stress until you are in the situation. And we’ve been in the honeymoon phase! This is a legit and fleeting stage most type 1’s go through after diagnosis where levels are closer to normal... still a few beta cells hanging around the body that haven’t been killed off yet, doing their thing to keep his blood sugar normal.

One thing that helps tremendously is Griffin’s sense of humor. One of the first days we were home I was tearing up as I was getting ready for dinner. I was dreading the shot because the backs of his arms were covered in bruises from the insulin shots. I was feeling bad about having to poke him to test his blood, and after I did he squeezed his finger to get the blood out while saying, “Milk it... “ and putting his monitor up to the drop of blood on the tip of his finger while telling the test strip on the device to “Slurp it...” I had to laugh. He makes it easy to remember that this, while overwhelming and scary, isn't all that he is about. :)

Here’s what I know - Griffin’s acceptance of his diabetes and all that comes with it helps lead me toward practicing acceptance, too. His positive attitude shows me what work I have to do. And not just with his diabetes but with myself and my own challenges."

Six

Six years ago today. It feels like yesterday. Everyday we are still learning. Everyday we are still teaching. Everyday we are still hopeful for a cure.

(Our "D Day" story can be found here: A Retrospective To the Moon and Back)

I've kept this blog to record our journey and to educate. Below are the questions that I am asked most frequently:

#1 Most asked question - What were the signs?

Excessive thirst and frequent urination. Since drinking and peeing go together, it took a little while to realize something was not right. We remember vividly Chase sucking the juice out of an orange, asking for a 2nd, then a 3rd and then a 4th. Unknowingly, we were only raising his blood sugar higher.


#2 What is a normal blood sugar?

On average, I like to say 100. On D Day, Chase had fasted for 12 hours and his blood was 348.

#3 What is he not allowed to eat?

Nothing! We don't limit carbs, but diabetes has made us make healthier choices all around. I do believe that fruit snacks are evil and they are only used to bring up blood sugar numbers - much to my children's dismay.

And then, there are the questions I think that I should be not be held legally responsible for if I should say, hurt someone for asking:

He doesn't look overweight. Did he eat a lot of sugar as a baby?

Well, Gary and I used to like to give him a 2# bag of Crystal sugar and a spoon. Is that wrong? In all seriousness, it is the #1 most frustrating question I get. NO. NO. NO. It's an autoimmune disorder. His body attacked his insulin producing cells. It has NOTHING to do with weight or sugar intake. It is just a shitty card he was handed at far too young an age.

Will he outgrow it?

No (this is the most painful question to answer). Not until a cure is found...which is why I am so passionate to find a cure & educate people in the meanwhile.

And then, there are the comments:

"At least it can be managed."

Yes, with constant vigilance, it can. We test blood 5 or more times a day, count every carb that passes his lips, give insulin accordingly & change pump sights religiously in order to avoid comas, amputations, nerve, kidney and eye damage. All this is done while trying to manage whatever else life throws our way.

"I could never do that to my child."

It's a small price to have that little boy in my life. He is the double layer of frosting on a cake. He is that first sip of coffee in the morning. He is the most awesome Lego set ever created. Doing nothing or even just 90% is not an option. Until a cure is found, I will give 100% & more.

How to conquer your fear of needles

Insanely large glucose sensor needle (needle comes out leaving in a long strip of microchips to read blood glucose) replaced every 6 days. (Chase gets and extra hour of Wii time for sensor changes.) Infusion site needle (where the insulin comes out of from the pump - this one stays in) replaced every 2-3 days. All placed on the only fatty real estate the kid has on his body - his tushie.

Yesterday I thought of Chase when I had to get my flu shot. I usually wimp out and get the mist, but this year I had to get the shot. He's my hero when it comes to needles coming anywhere near me. If he can do it a couple times a week, I can handle a yearly shot. He's also considerate - he told me to do his sensor needle before his grandma came to our house because it gives her the "hebbie jebbies".

The Rest Is Still Unwritten

Last month it happened again. The call.

"Hey K. What's up?"

"Hey, Susan. L is at the clinic with G right now. Guess what his blood sugar is."

Immediately putting my hand on my forehead I say, "I don't want to."

"Just guess," he prods.

"You're going to make me cry. I don't want to."

"Just do it!"

"Fine, 101," I say bracing for the real number.

"Over 400."

"Crap," is all I can think to say. (I may have used another word.)

K asks me if there could be any other reason for a 400 blood sugar. I can't think of any other possible reason, but I ask him what his son's symptoms were that prompted them to take him in. Frequent urination and constant drinking. Crap. Crap. Crap.

Another call an hour later confirms my fear. His little guy has type 1. I promise to visit them at the hospital the next day.

As I lay in bed that night, my mind kept going back to little G and his family. A year ago this month it was our friends' daughter, "A's", diagnosis that shook me. Memories of Chase's diagnosis day came flooding back both times, yet, and each time I couldn't help but think, "I don't know what they are going through."

In a way, I had a slight advantage to G and A's families. My dad was diagnosed the year I was born. I grew up watching him give himself daily injections of insulin. Sometimes I even "helped" him give himself shots. I knew what insulin smelled like (it's hard to describe if you've never smelled it before). I was raised by a diabetic. I was familiar with the routine.

I consider us lucky in other ways, too. At the time of his diagnosis, Chase was our one and only child. I worked part time and was able to leave work for over a month to learn all I could about diabetes. My day care provider was ready and willing to take him back into her care when I was ready to go back to work. Yes, it really sucked at the time that he was only 2 years old but we were were blessed. He hasn't remembered life any other way.

After having been in this battle for nearly 6 years, it's hard to know what to say when someone else's child is diagnosed (other than "Crap!'). I can't assume to fully know what they are going through. I told A's family that, "It gets easier." The problem with that advice is that I'm not sure I believe it myself. Certain things get easier, but diabetes is always there. Day after day. Year after year. All I was able to muster to G's dad was "Crap." Not exactly the comforting words he wanted to hear, I'm sure.

What I remember from diagnosis day was mourning for Chase's childhood. Birthday parties, trick or treating, holidays, school, sports, traveling - all would be affected by him having diabetes. Oh, how I cried. In reality, though, we've been too stubborn to let it have the staring role in his life. We work around it and he is able to be a happy, healthy, and despite his mother, a normal kid.

I hope to never receive another call, but if I should, my advice is this: Your family story may have taken an unexpected turn, but it is a story still being written. Diabetes will take the role you give it. Don't give it a staring role. Your child will inspire, amaze, and make you proud every day from here on out. It's not the story you would have written, but it's better - it now has a super hero in it.

The Medtronic Store

Pet peeve #110 of diabetes - my closet resembles a Medtronic warehouse. When your husband's job is to preach emergency preparedness, you HAVE to have your shelves stocked with insulin pump supplies, sensor needles, test strips and lancets. The main problem - where do you put it all?

Get it. Got it. Good!

One of our 4 yearly trips to Medcenter One. Yep, that's normal.

Well, August came and left and I have to be honest and admit that I wished the summer away. Fall was the projection for the end of the flooding and life is slowly getting back to "normal". Life in our household is ever changing, so normal always deserves quotation marks.

Chase is back in school. Now that we have 2 years under our belt, making the transition back is getting easier each year. I feel truly blessed to have the full support of the staff at Solheim. They get it. They got it right away.

Getting people to understand type 1 is not easy. Either I get a deer in the headlights look when I describe what it takes to keep my kid healthy, happy and alive. Or I get the wave of the hand and an "It can't be that bad" comment or look. I'd rather have a deer in the headlights look because then I know they get it.

A few years ago I had a "wave of the hand" friend watch Chase for a couple days. After the first day she met me a the door and said, "I had no idea managing diabetes was so hard!" Part of me felt good to know that she finally got it. The other part of me wanted to ask, "What took you so long?".

I'm not sure why some get it and some don't. Maybe because when you see a child with type 1 you don't see a sick kid. They look just like any other kid.

Or, maybe you've never been around what a "normal" day looks like:

7:00 am - Grab glucometer, test strips and lancet. Pull back covers, grab foot, poke big toe for morning glucose reading. Do one of the following - treat high blood sugar on insulin pump (and wonder why he went so high during the night), wake sleepy child and force feed fruit snacks to treat low (and wonder why he went so low during the night), or tell sleepy child to wake up and get ready for school (always a good way to start the day).

7:15 am - Count amount of carbs in breakfast and give him insulin with the pump. Hope to heck that he eats everything otherwise he will have a low blood sugar later.

8:15 - Drop him off at school. Say a little prayer to God to watch over over your son. Wonder if watching him walk away from you is ever going to get easier.

8:45 - Arrive at work. Place cell phone on your desk just in case the school calls. Take that phone with you at all times - except into the bathroom because you learned a $150 lesson when he was in kindergarten that cell phones are not waterproof and that you don't need it with you at ALL times.

9:30/10 - Snack time at school. Have faith that your child is giving himself insulin for his morning snack.

11:30 - Have faith that his blood is being tested before lunch and that lows or highs are being treated correctly.

11:45 - Have faith that he is giving himself insulin for his lunch and that he eats all his lunch.

Noon-3:05 - Have faith that highs or lows are being caught and treated.

3:05 - Happy to have your little boy back in your care!!

3:20 - Keep nagging kid to give himself insulin for all the food he is inhaling after school.

5:30 - Test blood before supper. Treat high blood sugar or feed kid supper immediately if low. Count carbs eaten and give insulin accordingly.

7:00 - Nag kid to treat himself for any snacks.

8:00 - Test blood before bed - treat high with insulin and/or feed him a bedtime snack. Count carbs & give insulin.

Every three days - remove insulin infusion site, refill pump, poke kid in the butt with the infusion needle.

Every six days - remove sensor needle, find another spot on his little butt to replace sensor needle. Give the kid and extra hour on the Wii because that needle is HUGE.

That's a normal day and, though it may seem it, I'm not complaining. It's what I have to do to have that little boy in my life. I got it. I get it and life is good.

Four years of faces

Four years ago this coming Saturday the world was introduced to Leah Marie. The world has never been the same since.

Happy birthday to my little fire cracker. I love you!

Totally worth the wait.

A little girl with a thirst for getting into trouble.

And being slightly difficult & demanding at times...


And perhaps non cooperative?

Super silly

"Slightly" animated.

A bit goofy

Forever my beautiful daughter...no matter what silly face you give me!

Keeping up the fight

June. What a crappy month you've been. Things have finally slowed down so that I can give a monthly update. What I've learned from this month is that diabetes is much easier to manage when you are not a single parent.

It all started at the end of May. That's when Gary started working 90 hour work weeks due to record flooding on the Missouri River. The continuous glucose monitor that I begged and prayed for was left off of Chase for a week so that Gary could sleep through the night (okay, me, too). One day I even did something that shocked me - I allowed Chase to have Skittles for lunch.

Mentally, it was hard to focus. Bismarck was a war zone. Over a thousand National Guard members were called in to help build levees to protect our infrastructure and homes. Gravel trucks whizzed by everywhere. Helicopters flew continuously overhead. Neighbors were frantically building dikes to protect their homes. Streets were cut off & getting to work was more work than work itself.

Projections for the Missouri River seemed to change daily. Our city did an outstanding job of preparing for the worst. Waiting for the water was the worst part. Amazingly, the Missouri cut it self deeper and wider. We aren't out of the woods yet, but we are going to be okay.

My heart goes out the the citizens of Minot. What Bismarck was preparing against is now their reality.

During the disaster I learned quickly who in my life I could count on (but in a way, I already knew). I also discovered that I live in a wonderful neighborhood with caring neighbors who I consider my friends. I found strength I never knew I had. I missed my husband more than you could imagine. Going to work was reprieve. Doing something normal like mowing my yard was pure therapy. Being a single mother sucks.

I never allowed myself a pity party for I knew there were others that weren't so lucky. Some don't have a home to come home to and have to wait until the end of August to see what has become of theirs. The battles in my life are nothing compared to what others are facing.

After confessing to my friend Gwen that I let Chase have a bag of Skittles for lunch, she berated me like she always does. Not for being a bad mom, but for being hard on myself. I have since forgiven myself & am happy to report Chase's A1c this week came back 7 (average blood sugar of 155). Not too shabby for going it alone for a month. I just hope we never have to do that again.

12 Questions

Last year, my favorite niece gave me grief that I haven't been keeping up Keepingupthechase. So, one of my New Year's resolutions was to do an entry a month. Another was to loose weight, but who saw Stockert baby #3 coming in October? Not me or Gary, that's for sure.

I have to admit that I took this idea from another blog. It looked fun & it was. I asked Chase a few questions on what it is like to have diabetes as well as a few others. I learned somethings about Chase I didn't know (see what he wants to be when he grows up).

Here's Chase:

Q. What is the worst part about having diabetes?

A. Getting poked by a needle.

Q. Is there anything good about having diabetes?

A. No. (Add an are you crazy look to get the full affect of the "No")

Q. What will you do when there is a cure?

A. Throw a party and have cake, balloons and presents.

Q. What do you want to be when you grow up?

A. Why do I have to be something? Can't I be a jobless deadbeat? (Yes, he REALLY said that - apparently thanks to an episode of SpongeBob)

Q. What is your most favorite thing in the world?

A. Charlie (the dog he doesn't like to feed, walk, play with, let outside...great, I'm starting to sound like my dad)

Q. What is your favorite color?

A. Red


Q. If you could go anywhere in the world tomorrow, where would you go?

A. Legoland


Q. What is your favorite food?

A. Chicken drumsticks

Q. Who is your favorite person?

A. I have 7 - Davey (fish), Charlie, Dad, Mom, Leah, God and Jesus (yes, I was looking for "Mom", but I like his answer)

Q. Favorite movie?

A. Despicable Me


Q. Favorite TV show?

A. SpongeBob (which Mom might have to ban so her son grows up and gets a job some day)

8 Tracks to a Cure

On nights when Chase has a pump site change his blood sugar numbers tend to go drastically low (it's the only common theme we've encountered with type 1). Last night, as I lay in bed next to him waiting for his monitor to alarm, I had an epiphany. It's about time, because I've always wanted to have an epiphany.

It may have come from updating our iPod earlier in the day, because memories of my childhood and music came rushing back to me. My first memory of portable music came in the form of 8 track tapes. When I was old enough to save up money for my own music, I purchased 45 records (I still remember my first was the Go-Go's "Vacation"). Then came cassette tapes to play in my boombox. I'd always have a blank cassette in the box just in case a song I loved came on the radio & I could tape it (no iTunes to buy that single song for $1.29). Of course, then came along a huge collection of CDs which now occupy space in my basement because my collection is now on the iPod.

My mind then started to race to other areas where I've seen amazing changes:

I've gone from my first video game of Pong to the endless games available on the Wii.

In high school, I learned keyboarding on a Radio Shack Tandy computer with a 5 1/4 inch floppy drive. I now type on an HP Pavilion laptop which can do a heck of a lot more than a Tandy computer! A lot more - and it's more portable.

On family car rides, I literally had to roll our windows down. There was no pushing a button. Or how about dimming headlights? Okay, I actually miss the switch on the left side of the floorboard you pushed with your foot.

1984 is when my dad bought our first VCR. I remember the day he set it up. We had no clue what he was talking about, but he was excited and it changed our lives (we could record Days of Our Lives!!!). If we wanted to rent a movie, we headed to Wally's Supermarket, where we could rent an extra VCR for the night, too. I now enjoy Netflix movies streamed instantly through my Blu-ray player. On my computer I can catch up on recent TV episodes on Hulu.com.

So many changes in what seems like a short time. As I reflect on the changes that I've seen just in my life, I hold on to hope for amazing changes in Chase's. I was once told by one of Chase's medical team members that Chase is in a great era when it comes to the technology available to manage his diabetes. Right now we are benefiting from an insulin pump and a continuous glucose monitor.

Just thinking about going from an 8 track tape to an iPod made me realize that an artificial pancreas will happen in Chase's lifetime. Or even better - a cure.

Daily Reminders

Can you spot the insulin pump in this picture?

By now you should all know how I feel about insulin pumps. My feelings are obvious. I sometimes feel Medtronic should give Chase a lifetime discount (or shares of stock) for as often I recommend their product.

A few years ago I use to frequent an online support group for parents of T1 kids. One common concern I saw with parents of non-pumping kids was that the pump would be a daily reminder that their child has diabetes. Years and years later, I still scratch my head over that concern. When, during a normal day, do you forget that your child is a diabetic?

Daily, I find myself frantically searching for my car keys in my Grandma Helen purse. Every day damn day. My hand always touches the glucometer case and glucagon I carry with me where ever I go.

Then there is Chase's other glucometer, test strips, and lancet that have a permanent home on our kitchen counter. It's hard to miss because it's always there.

I also see Chase's blood anywhere between 5 to 10 times a day. Every day.

Chase prefers to have his toes tested instead of his fingers, so I am guaranteed to find a lone sock on the floor. Everyday.

And, no matter how hard I try to throw them away, a used test strip ALWAYS seems to show up somewhere. Everyday.

None of the photos above were staged. They didn't need to be. They are my constant reminders.

If Mama Ain't Happy

I recently watched a diabetes nurse educator give a presentation on parenting kids with type 1. He stated that the number one most significant predictor of a child's A1C is if the mother feels supported as a wife, woman and mother.

Not the education level of the parents.

Not how much money the parents make.

It's if the momma is happy.

Want to know what Chase's A1cs are? They are perfect. They are right where his medical team wants him to be.

I've never been able to pinpoint exactly how to characterize my marriage. Some couples gush that they married their best friend, I don't feel that way. Gary is much, much more than that. He is my rock. In addition, he shares my warped sense of humor, love of good music (when he told me he didn't like Bruce Springsteen & Bob Seger, I knew I was in love) AND he cleans the bathrooms.

Right after we were married, we did what most most married couples should not do - we remodeled our house. I figure that if we survived that, we could survive anything. And we have. While sitting in the hospital with our newly diagnosed type 1 diabetic child, our nurse educator took us aside and gave us this advice: Work together as a team or your marriage will suffer. Don't let one parent take on the responsibly of managing the diabetes. It was advice we took to heart.

We both know that there are many tangible things in life we can give Chase (Legos, Legos, Legos, Legos, Legos). And there are fun and exciting experiences like trips to Disney World, Mount Rushmore, and Washington, DC. But, the most important thing we can give him is his health and we are committed as a team to do just that.

A couple years ago we did it again - did what very few married couples should do. We built a house together. Side-by-side, day and night we worked until it was finished. The finished product is the labor of our love. Just like Chase.

A Love/Hate Relationship with Resposibility

Seven is a magical age. Thirty years ago, I remember the thought of turning eight literally brought me to tears (now it's the thought of turning 40). I cried and cried because 7 was so much fun and there was no possible way that eight could be any better.


Because of that memory, it's been fun to watch Chase at seven. It's an age full of Legos, games, play dates, monkey bars, swimming, sledding & playing with our puppy. I think my childhood was much the same if you throw in some Barbies here and there and add a couple heaping cups of carefree irresponsibility.


I recently watched my carefree seven year old take five snacks from the pantry for his daily school snack break. He went to the drawer, grabbed the Sharpie and proceeded to write the carb count on each snack. I thought proudly to myself, "Wow, he's seven and he's so responsible!" Then, a couple seconds later, I thought sadly to myself, "He's seven and he has to be so responsible."


Last night I asked Chase to come up for supper (he's moved all of his Legos into our basement in case there is a tornado...he has his priorities). I watched him go straight to his glucometer and test his blood. I thought proudly to myself, "He did it on his own. I didn't have to ask him to do it." And again, I felt that jab of pain. Seven is not suppose to be ruled by carbs, blood sugar numbers and insulin. It is suppose to be carefree.


Everyday I remind myself that, to Chase, this is all normal. He hasn't known life any other way. I need to be happy that he wants to responsible for managing his diabetes, because one day I will have to hand over the reigns. For me, that day will be harder than turing 8, or even 40, but I will need to be responsible and let him take over.