How it all began...

Since beginning my fundraising for the JDRF Ride to Cure Diabetes, many people have asked us how we discovered that Ben has Type 1 diabetes. Well, here is the story of what transpired over the course of a few days in June, 2006.

Ben had gone to the doctor for a rash that he had on his leg, and the doctor prescribed an oral steroid to treat it. We suspected that maybe it was poison ivy or something. Well, as soon as Ben started on the medication, he began to urinate much more frequently than normal. In hindsight, the connection seems obvious, but here in Michigan the weather was just starting to warm up and he was playing outside all the time...we just thought he was thirsty. Then he started wetting his bed. In isolation this would not seem out of the ordinary.  He was almost six years old at the time and had not wet his bed in months, but this still didn't strike us as being unusual behavior. After all he was drinking a lot. One night I went to check on him before I went to bed, as is my custom, and I noticed that he had wet his bed already, and it was only 11pm. We got him cleaned up and put back to bed, but at 3am he was up again, soaking wet. Two wet beds in the same night? Now we knew that something was up.

We got Ben in to see the doctor that same day, and after a urine test the doctor told me that his urine was full of sugar...let's do some more tests to "rule out all of the bad stuff." (By "bad stuff", I assume he was talking about diabetes) Off to the hospital we went for blood work. Ben, quite understandably, went nuts when it came time for the blood draw, but we had an excellent technician who was very compassionate, and was able to get his work done while I held onto Ben. We were told to wait at the hospital for results, so we went to the cafeteria and had some supper. Preliminary results came back and indicated "elevated blood glucose levels". Ben's doctor said that he had been consulting with a pediatric endocrinologist at Devos Children's Hospital in Grand Rapids, and that they wanted another blood draw in the morning to double check their findings. At this point, nobody had mentioned the "D" word.

The morning blood draw went much better, and we didn't have to wait around this time. Just had to leave phone numbers where we could be reached. At 2pm, my wife called me saying that she had just gotten a call on her cell phone...the test results were indicating diabetes...we needed to go to Grand Rapids, pronto. I quickly packed up my stuff at work and off we went. In hindsight, it seems like I wasn't very upset at that initial phone call. It was all happening so fast, and we both have parents with Type 2, so I think we figured that we knew what we were up against. The crash course that we were given that afternoon proved that we didn't have a clue.

We spent the entire afternoon with a diabetes educator, learning everything we would need to know to keep Ben safe until the next morning, when we would be back again for a full day of training. I remember thinking, "Keep him safe? Three days ago he was fine. Are we sure this is for real?" I remember asking the doctor if they were sure about the diagnosis. They said that they were positive; that a healthy, non-diabetic individual would not have a blood glucose level over 126. Ben's was 600-something...I don't remember exactly. Tucking Ben into bed that night was rough. We prayed about it and he said that he was sad; that he really didn't want to have diabetes. I felt a lump in my throat. I got out of his room as quickly as I could because I didn't want Ben to see me cry. I didn't want him to know that I was just as angry and scared as he was. I felt like my heart was being torn apart at the seams.

The 2nd day of training was much like the first. Ben did great. All of the nurses commented on his great smile and positive attitude. He endured two very long days of sitting and listening to doctors, nurses, social workers, and others, talk to us about a disease that he did not understand. He was unaware of how much his life had just changed. We left the hospital carrying bags of supplies and a notepad full of prescriptions that needed to be filled. Ben got a stuffed bear named Rufus, that had cute patches in all the places were he would be getting poked.

Obviously, our lives have changed a lot since that day. To say that diabetes requires constant attention is an understatement. Only a parent of a diabetic child can truly understand the constant juggling of food intake, exercise, insulin, hyperglycemia, hypoglycemia, and more. There are no days off from this disease. His mom and I split the full time job of being his pancreas for him. I appreciate, more than ever, the astonishing marvel that is the human body. The design of just one little organ, the pancreas, is incomprehensibly complex. And, in most people, it just works. We don't even need to think about it. It's like our heartbeat or breathing. But, when it doesn't work, watch out.

I'd like to think that we're coming to grips with the disease pretty well. As well as can be expected of parents trying to cope with a chronic illness with no known cure. We've tried to educate ourselves as much as possible about the research being done, and the treatments available. We've also discovered that we are not alone. Through all of the classes that we've taken, we have met a lot of kids and parents who have stories every bit as heart breaking as our own. We met a 16 year old girl who was diagnosed at 14 months of age. She was wetting through her diapers. We met the mother of a newly diagnosed 2 year old, and we look at our own two year old, Grace, and just thank God that it's not her.

We've lived with with this disease for less than a year, and at times we feel like we are old pros. We have had to battle high sugars, low sugars, ketones, fatigue, intense mood swings, and the list goes on. At other times we feel like we are at the very beginning. Ben, for his part, will likely not even remember what life was like before diabetes. He's young enough that this will be the only life he knows. Of course, all around him are people who don't have to watch what they eat, don't have to exercise a certain number of minutes per day, don't have to poke themselves and test their glucose every few hours, and don't have to be connected to a pump delivering lifesaving insulin.

Ben has been given a difficult path to walk, but we rejoice that our God has given him feet for the journey.