January 25, 2011

“Call me when you land. Christian has diabetes.”

And so, with a text message, began a pretty incredible year helping our young son deal with an illness that will forever change how he lives his life – but not necessarily shorten it.

Thankfully, we caught Christian’s type 1 diabetes pretty early, even though his symptoms (looking back at it now) were classic signs of undiagnosed diabetes. Extreme thirst, frequent urination, a general malaise – we noticed all of these things for four or four five days before the doctor diagnosed him.

Of course, we tried to rationalize them away as anything but serious.

“All kids wet the bed.”

“He was just playing outside in the snow. Of course he’s thirsty.”

“Maybe he has a cold. You drink a lot when you have a cold.”

“He’s just tired from running around so much.”

We should have known better … but, like many, we simply didn’t know enough about type 1 diabetes to raise any red flags. Diabetes is only for the overweight and sedentary, right? That was our misguided mindset.

Thankfully, Christian already had a doctor appointment on the calendar for an ear infection follow-up, so we kept it and told the nurse about his symptoms then.

The doctor ordered a urine test. The results changed our lives on January 25, 2011. One year ago today.

The year since has been a mix of emotions for us as parents.

Fear of the newly diagnosed disease and its implications.

Anger at why Christian had been stricken with this seemingly at random (there isn’t too much known as to why someone contracts type 1 diabetes).

Depression over the gravity of it all.

Relief when learning more about just how manageable diabetes is – and how it need not prevent Christian from living life as he otherwise would have on January 24, 2011 B.D. (Before Diabetes).

Sadness when remembering the days before diabetes.

Admiration for all the people who have helped us deal with diabetes in the past year, from the health care professionals at Children’s Hospital to his teachers and staff at Rawson Elementary to our family and friends.

Amazement at how well Christian has dealt with the illness, including his nonchalance at getting poked upwards of 10 times a day and his acceptance of changes to his eating habits.

Joy at watching him live his life like any 7-year-old.

Indeed, Christian is the hero in this story. His courage is inspiring.

In so many ways, Christian still leads the life of a typical young boy.

He competes hard in sports — including soccer, Little League and basketball – both on the field and in our living room. He does great at school, at the top of his class in reading and math. He loves the Brewers, Bucks, Badgers, Packers, Panthers, Golden Eagles, and seemingly dozens of other random sports teams, not to mention monster trucks and NASCAR, He has lots of friends. He loves to laugh, yet he cries when his favorite teams lose. He hits his sister, and hugs her too.

In other words, he is that wonderful mix of innocence and precociousness that you find in any 7-year-old, even if that maturity is multiplied because of the illness he deals with.

Yes, diabetes forces you to grow up quickly. Too quickly.

*****

I won’t get too much into the complexities of type 1 diabetes here, and I’ve pasted some links below for those who are interested.

Simply, type 1 diabetes causes a person’s pancreas to produce little or no insulin. So we have become Christian’s “pancreas on the outside” in the past year – and will until he’s old enough to take more ownership of the illness. He’ll have this for life.

Day to day, this means blood sugar checks at wakeup and bedtime, before every meal and snack and at other times throughout the day. Each check is a finger prick – drawing a small blood sample that we run through a small device that tells us his current blood sugar.

His normal range is now 80 to 150. Most of the time, he’s in that range. Sometimes, he’s high, and we inject him with insulin to bring it down. (At diagnosis, for a frame of reference, he was 479.) Sometimes, he’s low, and we give him food to bring up. In all, Christian gets at least four shots of insulin each day – before every meal and bedtime. He gets more if he snacks and if he’s high.

In other words, our lives have become a numbers game. We religiously track Christian’s carbohydrate intake and dose him with insulin accordingly, no exceptions, using a scale that seemingly always changes and cross-multiplication skills that we thought we’d left in our dust in high school.

“So, how were Christian’s blood sugars today?” That’s typically how Sarah and I start every phone conversation these days.

“How many carbs are in that?” “How much should we dose him?” Those are other questions we ask throughout the day, as we determine how much insulin to give Christian at meal time.

While we deal with this daily, we also never forget how high the stakes are. The long-term complications of high blood sugars are real – from amputations to vision loss to organ failure. The short-term implications of lows are just as real. A severely low blood sugar can kill.

That is why we are always watching him closely for signs of lows and asking him, “Christian, do you feel wobbly?” Wobbly – that’s how he describes his low feeling.

Thankfully, he has gotten much better at identifying his symptoms – part of that unfortunate maturity. At the same time, he occasionally rebels over his diet, and who can blame him?

Gone are the days of Skittles and juice boxes, unless he’s low, of course. And no more of the “reward candy” we had grown so accustomed to giving him. We’ve also had to rethink Halloween, Thanksgiving and other carb-heavy holidays.

For the most part, Christian has embraced all of this, and thank God for that.  Still, diabetes has robbed him of the one thing that should define every child’s life: spontaneity.

Kids should be able to sprint to the ice cream truck for a cold treat, or have that second piece of pizza for diner, without thinking twice. Shouldn’t they? (Well, ice cream and pizza are full of carbs.)

A 7-year-old shouldn’t have to think twice before playing hard in the backyard on a hot summer day. (Well, exercise can lower your blood sugar, so we have to watch him closer.)

Shouldn’t all kids be able to have a piece of candy after being particularly nice to their younger sister? (Well, he can, but only after a shot.)

Yes, diabetes forces you to think twice. And that is my biggest source of anger over this illness. It’s the reason I still sometimes ask, “Why Christian? Why us?”

*****

So this has been our life the past year, 365 days that began with one text message. I was a thousand miles away when I received it, on a business trip to Texas, and never felt so far away.

Sarah and I occasionally wistfully look back to the days before diabetes, but we have grudgingly accepted our new reality, as has Christian. We’ve had to.

We’ve also decided to educate others as much as possible about type 1 diabetes, clearing up any misconceptions about the illness. The job continues … as does our own education.

One blessing of the past year has been getting the chance to meet some of the people affected by this illness, from the families faced with the same challenges we face to the advocates working toward to improve the quality of life of diabetes sufferers – and ultimately toward a cure.

We pray every day for that, and there is real progress being made. Please join us in those prayers.

In the meantime, I ask you to learn more about diabetes and consider supporting the incredible efforts out there to help kids like Christian.

Nearly 26 million people in the United States have diabetes. Only 5% of those people have type 1 diabetes. Ours is just one story, and this is just one pulpit – my small opportunity to shine the light on an illness we all could stand to learn more about.

For Christian.

To learn more about type 1 diabetes, check out the Juvenile Diabetes Research FoundationAmerican Diabetes Association and the Diabetes Research Institute. And please consider joining us on Christian’s Crew during the JDRF Walk to Cure Diabetes at the Zoo in September. Send me an email if you’re interested in walking with or sponsoring our team.

11 Comments

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11 responses to “January 25, 2011

  1. Melanie

    Often ask the same question, why me?, why us? Why NOT me, why NOT us is the response I feel in my soul. Christ doesn’t just give His cross to anybody! Good luck Christian (great name, BTW) and hang tough, though it sounds like your pretty tough already.

  2. Lori B.

    Very touching and it’s advocates like you that tell the story…so thank you for sharing it!

  3. Schak

    Thank you for sharing Christian’s story.

  4. Nancy DeSloover

    Erik, How very well written. Our prayers are always with you all. God bless all of you.

  5. Joan Hammill

    Erik, I cried reading your story. How brave and courageous you and Sarah are…and Christian too. I am so proud of all of you. I do pray everyday for you and Sarah that God give you the knowledge, the patience, the courage to deal with Christian’s diabetes on a daily basis. I also pray that God gives Christian wisdom beyond his years as he lives with this disease. Of course, I pray for Shelby too that she stays the happy, healthy little princess she is. My heart is overflowing with the love I feel for all of you. God bless you always.

  6. Colleen McCarrier

    Hey Erik,

    I’m so glad that you shared this…you articulated so well the honest gamut of emotions you and Sarah have been experiencing. Your whole family is in my prayers this very moment. Stay connected to that network of parents with first-hand experience who can give you encouragement! God hold your family close.

  7. Kim Kostuch

    EriK,

    Thanks for sending me this information. Your story is heart rending especially to think that there is no end in sight for this disease and it’s relentless daily treatment and maintenance. As adults, it is enough of a struggle to be thrust into a situation where one of our children or parents needs constant special care, but it seems especially unfair for Christian. My own son’s blindness seems like a cake walk by comparison. I guess God knows exactly what it is we can handle, or need, in our lives to make us into the people He knows we can become. It appears that you and Sarah already draw courage and inspiration from your son, as we do daily as well from our son. Of course we will pray for your family, and count me in to support those walking for the cure in Sept.

    Kim

  8. Shannon B.

    Thank you so much for sharing your story. I was diagnosed with adult onset type 1 diabetes in October of 2010. This is such a challenging disease to live with and I cannot imagine trying to deal with it at such a young age. It is wonderful that Christian has such a supportive family to help him through it. Have you looked at all into an insulin pump for him? I started on one this past October and it is absolutely wonderful! Instead of multiple injections a day, you just have to insert the infusion set every few days. It also gives a more exact dosage and takes into account your current blood sugar level, carbs that will be consumed and how much insulin is already in your system. I would highly recommend one if at all possible.
    Thank you also for your efforts to educate others on type 1 diabetes. There are so many misconceptions and people with diabetes can always use more advocates.

  9. Chenzo

    Erik, working in cardiac care for most of my adult life, I see what the process of Diabetes is if left unchecked. You caught it early and yes it is a high maintenance disease, but you guys are on top of it, and from what it sound like your boy is a tough little man. To echo what Shannon stated, when he gets older a pump may be the way to go. It is discreet, and very easy to use. Also a company called Medtronic is working on an implantable device that not only continually checks the blood sugar, but administers insulin, without patient or parent involvement.
    Christian will have a “normal” life only limited by his imagination. Treatments are getting better every day, Hang in there guys.
    God Bless

  10. Glenn Kleiman

    Erik:
    Thanks for sharing your story and thank you for including the link to the Diabetes Research Institute. The DRI is making great progress in its search for a cure. My daughter and brother have type 1. It takes all of us working together to change the future for your son and so many others suffering from this disease.

  11. Pingback: For A Good Cause: JDRF Rummage Sale Saturday At My House (1713 Cedar St.) « South Milwaukee Blog

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