My Daughter’s Diagnosis

December 2008

As school let out for Christmas Break, I started noticing some physical changes in my 10 year old daughter, Lily. I didn’t think much of them at first. In fact, these changes registered more as fleeting thoughts. Once I could explain them away, I was satisfied.

We have always joked about Lily’s “bladder of steel” because she never has used a public restroom and can hold it all day. So as we went shopping for new Christmas lights….and had been in the store a whole 10 minutes, Lily started complaining that we needed to go because she had to go to the bathroom. I thought she was just bored and wanted me to hurry up, so I was annoyed.

Later that same day, I also noticed she had to pee 3 times while we were playing a board game. But, since I wasn’t looking for something to be wrong with her, I just figured it was because she was drinking more than usual. Which she was! She was getting up at night and asking for drinks. I put it down to the dryness in the air because we were now running our furnace. Again, I didn’t make much of this.

One day right before Christmas, Lily was playing our Wii Fit, and I heard it proclaim, “You’ve lost 4 pounds!” Alarm bells finally started ringing! My daughter was only 71 pounds to start with, so she shouldn’t be losing weight. I instantly started asking her questions about it. Was she trying to lose weight? Did she think she was fat? My mind went that route first. After all, she was at the age where girls started noticing changes in their bodies and becoming concerned about how they look. But, I quickly knew that wasn’t it. She was eating like a hog, seriously. She was hungry all the time. Then I thought it could have been from playing basketball. After all, her basketball season had just ended the week before. Maybe all that exercising had made her lose a little bit of weight.

Christmas Eve came, and Lily stayed up until about 4:00 in the morning. She said she couldn’t sleep. She just didn’t feel good. She even threw up. We thought she was just so excited for Christmas….even trying to stay up to get a peek at Santa! I wondered if she was coming down with the flu. But, in the morning, she seemed fine. Just a little lethargic…but after all, she had stayed up until 4am…of course she was tired!

But somewhere deep down inside, I knew something was seriously wrong. I started weighing her twice a day during the next few days. She was still losing weight. I had her try on her summer clothes to compare how they fit. While she was changing, I could really see how skinny she looked. She is a thin child to start with, but at this point, she was reminding me of some concentration camp pictures I had seen in school. She had a bone sticking out in her chest. Her legs had nothing to them. All of her ribs were showing. How did this happen so quickly? WHAT WAS WRONG? She said she felt fine, but she didn’t look fine to me. After the kids went to bed, I remember crying to my husband saying I just knew it was bad. He thought I was over-reacting…which to be fair, is my natural thing to do. But this time, I knew it wasn’t me making something out of nothing.

December 27 – We went to my mother’s for our Christmas celebration. My kids had been planning to stay at my mom’s house for a couple of days. They don’t get to do that much during the school year because it is a couple of hours away. They love to be there, and my mom has horses that the kids adore. I didn’t want to not let her stay, and take that away from her. I warned her that she needed to eat well while she was there. She said she didn’t feel sick and that she would try to eat well, so I decided to let her stay as she had planned.

But during the few days the kids were away, I had a sense of dread. Something big and bad was coming, and I needed to prepare for it. Even though I seemed to relax and even enjoy going to a movie…I had this feeling that I should be getting ready for when Lily came back…like rest now, because you’ll be needing your strength.

We picked up the kids on December 30, in the evening. We went out to eat at Culver’s. In the restroom was a flyer for a local Theater group. They were putting on “Steal Magnolias.” It had a blurb about the author’s real life experience with his sister who had Diabetes. You are thinking this meant something to me, aren’t you? Nope, still didn’t think anything. I look back at this day and can’t help but think God was trying to show me what was wrong. But, after I missed the first sign, he just drowned me with it on His second try. We were just leaving the restaurant, and a conversation I had had with a neighbor who had been diagnosed with Diabetes the previous summer just literally washed all over me. It was like I was being smothered with knowledge. I could just hear her telling me how she felt when she went to the doctor’s to see what was wrong with her. She was a nurse after all, and she didn’t recognize the symptoms. As we were driving away, I could just hear her voice echo through me…”Of course it’s Diabetes! I have been so thirsty! I’ve lost weight!” And with that punch in the gut and tears streaming down my face, I whispered to my husband, “I know what’s wrong with Lily.”

When we got home, I immediately called the doctor’s office. They were still open, but our doctor didn’t have an opening until Monday. I didn’t say, “I think my daughter has Diabetes.” I didn’t know for sure what it was, and I wanted to let the doctor see her without me putting my thoughts into it…because, if it was something else, I didn’t want to be leading the doctor in the wrong direction. After all, maybe there were other symptoms that I hadn’t noticed. I didn’t want to go in with a Diabetes symptoms checklist, so to speak. Instead, I said that I felt something was wrong, that she was urinating a lot and losing weight. This was Thursday, we would see them Monday.

I hung up the phone and called one of my best friends. She has been one of my best friends since kindergarten, and she happens to be on OB-GYN. It is handy having a doctor for a friend. I can’t tell you how many times she has sat patiently listening to me as I have thought something was wrong…again, I tend to over-react. She usually calms me down and helps me start thinking rationally again. This time, she told me she thought I was right….that I shouldn’t wait until Monday, and that this time was crucial. I needed to take Lily first thing in the morning and see whichever doctor would see us. Oh no! was all I could think…she even thinks this is real!!

We went into the doctors office at 10:00 am that next morning. Ten minutes and one finger prick later, the doctor (not our regular doctor) came in and said, “You’re daughter is Diabetic.” The tears came instantly. I didn’t know what it meant, but I knew my adorable, wonderful, daughter did not deserve this. She was scared and crying, not knowing what this meant. But the first question she asked was, “Can I give this to my brother?” The doctor told her that people couldn’t “catch” it from her. Her second question was, “Can I pass this to my kids?” The doctor said that her kids wouldn’t necessarily have Diabetes just because she did.

Our regular doctor wasn’t working that day, but she was in the back of the office doing some paperwork, and after hearing what was going on, she came in to see us. I asked her to go into the hall with me. I wanted to ask the hard questions, but not in front of Lily. Will she die young? No. Would her life be cut short by this? No. Can she have kids and get married? Yes.

I went back in to see Lily and my husband and instantly told Lily what the doctor had said, because it was a form of good news, I guess. The doctor’s office was instantly on the phone with Helen Devos Children’s Hospital. It was 45 minutes away, in Grand Rapids. They were expecting us immediately. Like it or not, our new life had just begun, and there was a team of doctors and specialists waiting to help us through this.

That was the worst car ride of my life. We all just kept crying. Mostly, we were just scared. What did this mean? Why did this happen? Would we ever be ok again? Lily was in the backseat crying. I just wanted to trade with her. Why couldn’t it be me instead of her? If you knew her, you would appreciate the person she is. She has always been so good, so special. She has an old soul. She is always desribed as a “little honey.” Just a sweet little thing. How was she supposed to do this? This was not fair. She has always served God so well, how could He let this happen to her? My heart was literally breaking. But I remember telling her that this was going to be the worst car ride….that it is because we didn’t yet know what this means….we didn’t know anything…that the not knowing was making it hard. I just promised her that the car ride back would have to be better because we would at least know what we had to do.

We went through 5 ½ hours of intensive training. We learned that this wasn’t our fault. I didn’t give her too much sugar, and it had nothing to do with what she ate. No one knows for sure why some people get Type 1 Diabetes. They know it has something to do with genetics, but not fully. The doctor said he thought that in the future, we would find out that people have the genetics to develop the disease, but that some toxin in the environment sets it off at some point. We met with a social worker and a nutritionist. We learned how to read labels and count carbs. We practiced giving shots to a fake body part. Then my husband and I gave each other a real shot (filled with saline). I am so NOT medical. I never thought I could do that. I am actually mentally as far away from a nurse/doctor as you can get. In the back of my mind, again, I was thinking….you’ve got to be kidding! I am the worst choice for this! But, you quickly get over that and step up to the plate. This is my daughter. If she has to do it, I can do it too.

Lily got her first shot while we were there. They checked her blood sugar a couple of times to see if the insulin was bringing it down.