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.

Honesty

I'm going to be honest - an addiction to Facebook has taken me away from the blog. Also, a life that has left me with very little spare time (other than Facebooking) has had something to do with my lag in blogs. Now that we are happily (and finally) settled into our new home, I hope to blog more.

The blog was created to chart our journey of living with diabetes. I haven't blogged much about diabetes lately. After almost 4 years it has become our life. We try to manage it as best we can. We try not to think about how hard it really is.

While in Washington, DC a few weeks ago, a JDRF staff member told us to be honest about the disease when talking to our congressmen. Tell it like it is and don't be brave. I think we all have a tendency to put on a brave face when telling people about what it is like to live with diabetes. Lately, the reality of it all has been on my mind way too much.

Leah will be turning 2 next week. Chase was diagnosed 3 days after his 2nd birthday. Nothing, and I mean nothing, prepares you for your child to be diagnosed with an incurable disease. A disease, that left unmanaged, will set him up for a life time of complications, and yes, always the threat of death.

There is no break from this disease. It is the elephant in the room. It is always there physically and emotionally. When I look at my nearly 2 year old, it is there. When I look at a photo "pre-diabetes", it is there. When I hear a certain song on the radio, it is there.



The dream I'm dreaming is a cure for diabetes. Until then, all we can do is keep moving, keep climbing, and keep the faith. Oh, and be a little more honest.

Can you hear me now?

Here's Leah having a real conversation with Grandpa. She's been talking to Boppa on Chase's shoes and whatever else could double as a phone. I recall Chase pretending a piece of garlic toast was a phone when he was this age as well. Who needs a real phone when you have shoes and bread?

The difference between boys and girls

All day Sunday attire for the boy - Spiderman jammies

All day Sunday attire for the girl - Formal Christmas dress

And the Oscar goes to...

Leah, for "Pretend Your Feet Stink"!

North Dakota's Delegate

Chase's bio is on the Juvenile Diabetes Research Foundation's website: http://cc.jdrf.org/delegates/ND/

I've been having a strange week dealing with diabetes. On Sunday, we attended our semi annual support group meeting. Both Gary and I would have skipped it if we had a choice, but we needed to meet with some members from JDRF that were giving a presentation. Since we are 3 1/2 years into this, it feels like we've been there, done that, but we knew that we need to be there for the other families that are just starting their journey. Hearing them talk and seeing the pain in their eyes on Sunday seemed to pull on that emotional scab that I've been desperately trying to heal.

It's amazing how easily I can be transported back to that November day in 2005 when I hear newly diagnosed families tell their story. What I most remember from that time was grieving for the childhood I thought my son was going to miss. Luckily, I do not think that Chase's diabetes has affected his quality of life in anyway.

After the meeting I told Gary that I didn't want to go to the support groups any more mainly for the reason above - it dredges up painful memories. Ironically, a family friend contacted me a couple days later to ask me if I'd offer support to a friend of hers who daughter was recently diagnosed. Okay, time to put my selfishness aside, because another emotion I remember from that time was the complete and total isolation that we felt. We had to figure it all out on our own without the support that we are now able to offer.

Just when you think you have it all figured out and have a plan things change. That's life. That's diabetes.