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.

An Even Trade

Certain family members (all of them except my brother) like to give me grief about my ability to get rid of "stuff" too easily. For me, a simple life with as little clutter as possible makes me happy. Recently, though, I had to give up an item that we've had in our possession for nearly 4 years and it made me rather melancholy.

We were having some delivery issues with Chase's insulin pump. The clinic urged us to call Medtronic since we were getting close to the end of our warranty. We figured out the no delivery issues, but ended up receiving a replacement pump since Chase's old pump was so scratched up that it was getting hard to see the numbers. The deal was that they would overnight us a new pump, but we needed to send them our old pump. I felt a lump in my throat at the thought of letting it go (I would have had to pay $3,600 to keep it, so the lump didn't last long).

Gary asked what I would do with the old pump if I could keep it. I told him that I would frame it and put it in his baby book with a heading "Baby's First Insulin Pump". Truthfully, when I looked at the old pump, I saw this little machine that allowed us to walk from the dark into the light. The first month Chase was on the pump, we saw dramatic improvements in his blood sugars, his energy levels skyrocketed, and he grew an inch! It also gave him the freedom to eat normally, to go to birthday parties, day care, school, you name it, with greater ease. Mostly, I think it was because Chase wore that pump 24/7, so in a way, I felt like I was giving up a piece of him.

Luckily, the new pump looks exactly like the old pump (we asked the Medtronic rep to please make sure that we didn't receive a pink pump or we'd we in for a world of hurt). We swapped the old for the new and life is back to normal.

Lately I've been slowly getting rid of the kids' baby items (crib, highchair, stroller). I've had some hesitation to getting rid of these items since they hold such great memories, but I know that there are other great memories awaiting us with other possessions.

And I know that if I'm patient enough, the dream of a cure will replace any feelings I have toward insulin pumps! For a cure is more important than any thing I own.

(Okay, I still do wish that I would have gotten to keep the old pump.)

A Retrospective - To the Moon and Back

We are closing in on the five year mark of Chase's diabetes anniversary. I have trouble remembering what I did yesterday, but I can remember that day in vivid detail. November 29th, 2005 - 8:30 AM.

On November 28th we put Chase to bed early. We were happy that he went down easily because he had to fast for his blood sugar test the next morning. Sitting next to Gary that night, I told him that we needed to be prepared for what seemed like the impossible chance that Chase had diabetes. Gary, being my forever optimist, tried to reassure me that Chase was okay.

The next morning, I took Chase into Public Health for his blood test. After the nurse pricked his finger, I looked at the glucometer - 348. I'll never forget what she said as she turned to me - "Your dad is diabetic, so you know what this means." With tears in her eyes, she hugged me. She wrote down the name of a doctor at Medcenter she recommended. I took the paper and walked out the door in a daze, too shocked to cry. I buckled Chase into his car seat and told him that he was going to be okay. Then I dialed Gary's cell phone and told him to meet me at Medcenter as soon as possible.

I had never been to Medcenter, so pulling into the large parking lot, I didn't know where to go. By the time I got to the registration line, Gary was there. Chase was able to get right into Dr. Kumar. From there, we were told he was to be admitted to the hospital. The nurse sent me to admitting while she took Gary and Chase to the hospital. I sat, for what seemed like hours, to admit Chase. It was excruciating to be away from my son.

By the time I made it over to the hospital wing, Chase was in a bed with bags of fluid attached to his tiny body. They told us to expect to stay 4 days in the hospital to figure out exactly how much insulin he was going to require and to rehydrate his body.

After we got situated in the hospital, I headed home to pack an over night bag for Gary and myself. On the drive I called my parents and left a sobbing message on their home phone. By the time I got to my house, I composed myself and decided to call my mom at work. I didn't want my dad to hear the message on their phone for fear of not knowing how Chase's diagnosis would affect him.

The next four days in the hospital are a bit of a blur. Maysil was introduced to us as the diabetes nurse educator and Kelly as the nutritionist. They told us that we would get to know them well since we would need to meet with them every 3 months. A few years ago, I admitted to Maysil that at the time, all I could think was, "You seem nice, but I do not want to know you."

We had a lot of friends and family visit during Chase's stay. It seemed like everyone that came to visit had the same look of disbelief. For those of you that knew Gary's dad, he didn't exactly wear his emotions on his sleeve. It was hard to see Gary's dad softly weeping into his hand as he watched a hysterically crying Chase receive an insulin shot.

In four days, Gary and I became nurses & nutritionists. We learned to test blood sugar, dilute insulin (Chase was too little to take regular insulin), and count carbohydrates. Taking him home from the hospital was like bringing home a newborn baby. We were on our own and we needed to figure it out on our own.

We still haven't figured it all out after 4 1/2 years, but it now is just a part of our lives. Sending Chase to kindergarten this year, was probably the hardest thing I've had to do since he was diagnosed. We'd been blessed with the world's best day care provider on the planet (I'm not exaggerating), so to turn him over to "new" people was terrifying. I cried on the walk home from the school after the parents' kindergarten orientation. I was totally and utterly jealous of the moms that could send their child to school and not have to worry about what I had to worry about. After the first week of school (and a 504 plan in place), I knew Chase was in good hands.

Being on an insulin pump has made Chase's transition into school much easier. We pretty much had him testing his own blood and entering his numbers before he entered kindergarten. He only needs to have help counting carbs. He's been getting pretty good at that, too. Recently, at breakfast, he ate a Toaster Strudel (not healthy, I know). He knew they are 26 carbs each. He asked if he could eat his sister's untouched Strudel. I said, sure. He pulled out his pump and said, "So, 52 carbs, right?" Now, if diabetes had done any good, it's that my kid is a genius when it comes to math!

He is a kid that I'm proud of for so many reasons. He has handled this disease with grace and courage. His is strong beyond his years. Every morning when I drop him off at school, we play this game -

Mom: "I love you, buddy."

Chase: "I love you, too, Mom."

Mom: "I love you, more!"

Chase: "I love you, more!" Then, he jumps out of the car, slams the car door and runs off laughing, thinking he has gotten the last word.

Mom: "I love you to the moon, and back."

Breakfast, Leah Style

I hired a new helper in my kitchen. She's an animated little helper, too. Here she is making the the boys some Belgium waffles on Valentine's Day morning.

Smiling, because Mom is actually letting her play with flour.

So far, most of the flour remains in the bowl.

The master at work.

Did you want exact measurements?

This looks right.

Ooooooh, these are good.

Surprisingly, good!

They really were the best Belgium waffles that I've ever had. I think my helper has a permanent job in my kitchen.

Merry Christmas, everyone!

Hope your Christmas was as sweet as a 5 pound bar of chocolate.

And as much fun as a cardboard box.

Surrounded by those you love.

Halloween

I'm easing back into blogging...and what a better way than with Halloween photos.



We made it a point to stop at this house in Bismarck's historic district. They take halloween decorating to a whole new level. Unfortunately, this was their last year since they are in the process of selling their home.



It was cool!



Here is Chase as Ironman. He really got into character.



Here is my little monster dressed as a furry little red monster.