From my mom:
Being a parent of a T1D can be quite a challenging, upsetting, nerve-wracking, rewarding roller-coaster ride. Here are a few of my memories:
Laura was 9 years old when diagnosed. Shortly after her diagnosis, she was invited to a bowling birthday party. Recognizing her own unfamiliarity with the disease, the mom asked me to attend as well. Everything went very well, until one little girl started munching on the birthday cake, looking straight at Laura while smacking her lips, grinning evilly (or at least it seemed so to me), and saying, “Mmmm! This is such good cake. Too bad YOU can’t have any!” I restrained the Mama Bear urges swelling inside me, and was rewarded with my daughter sweetly replying, “I’m glad you’re enjoying it.” Undoubtedly a much better response than my throttling the child or even gently explaining how unkind she had just been!
Our first endocrinologist had indicated that Laura would be a candidate for an insulin pump when she was about 14. And then when she was 10 gave her reading material on the pump as we left the office visit. Whoa! What happened to 14? We had a long ride home, during which she read the material, saying things like, “Ew!” and “Yuck!” while I inwardly cursed him out for not giving a heads up to us beforehand. Yes, it’s her body and yes, she’d be the primary one dealing with it, but to hand HER the info with me never having a chance to prep her or introduce the idea??? What was he thinking? What a dodo! And the ride home ended up being MUCH longer than usual. I was so concerned about what she was looking at, and at her response to it, that I totally missed our exit and some time later wondered why we hadn’t come upon it earlier. Back-tracking took 45 minutes, so doing the math you can see I inadvertently added an hour and a half to our trip. (P.S. This so soured her on the idea of a pump that she did not get one until in her 20’s.)
Our experiences with Dr. Dodo were never pleasant. When Laura was in sixth grade there was a time when we just couldn’t get her sugar down. A trip to the hospital ensued. Dr. Dodo declared that she obviously hadn’t been taking her insulin (was I WATCHING her give herself the shots?) and that he would not release her from the hospital until she admitted that she hadn’t been. When he informed her she could not leave until she confessed, she replied, “Then I guess I’m going to be here a long time, because I will not lie and say I didn’t take my shots.” (Years later she got good at leaving AMA!)
Then one day as we were leaving an office visit, I got a brainstorm but had no chance to clue Laura in as to what I was about to do. We always set up the next appointment as we were leaving. I said, “Now that Laura is hitting puberty, I think she would be more comfortable with a female doctor. Could we switch to Dr. XXXX?” (Dr. XXXXX had jus recently returned to the practice.) And I was sending Laura mental telepathy to keep quiet, please, keep quiet. “Of course,” came the reply and we were set up. Once outside the building, Laura exploded, “Why would you say that? You know I don’t care whether I see a man or a woman!!!” “Do you want to keep seeing Dr. Dodo?” “No, but… ooooh! Gotcha!” Sometimes I had a stroke of genius!
We could not be rid of him entirely though, and our most serious bout with her diabetes came as a result of a visit we had to have with him. He increased her dosage drastically. This was the summer after ninth grade. After changing dosage, he always had me check her blood sugar at 3 a.m. So I did, of course. It was low this morning, so I gave her juice and crackers and she went back to sleep. In the morning, I could not awaken her. She was totally unresponsive except for murmuring. I got juice, but she couldn’t sip it. I ran for the glucagon, but quickly realized I was shaking too badly to give it to her. (I’m shaking now as I write this!) Her dad was able to. She soon was much better and we raced her to the local hospital, where they stabilized her before sending her down to the larger hospital an hour away. That hospital stay was no picnic either, and after being put in a closet (yes, you read that right) and being ignored for three hours (except for a student who came in, kicked me out of the closet, and interviewed Laura), I informed the desk we were going to leave, that we could give her batter care at home than they had given her there. (First brush with AMA!) They immediately called Dr. XXXXX who begged me to stay and that she was working on having Laura transferred to a smaller hospital where, she assured me, the care would be excellent. It was better, but I would not call it excellent. When Laura went low that night, they gave her juice. Just juice. No slow carb. I asked why they hadn’t. The answer was unnerving – “Oh! Should we do that?” And I explained how it had been explained to me and they thought that made sense and got her crackers. But after this episode, every single night until Laura moved out of our house, I tested her blood sugar at 3 a.m.
There were other hospital visits, unfortunately, and some were rather strange. Like the time I saw Dr. Dodo skipping (yes, skipping) down the hall and saying in a sing-song voice, “And I’m the one who gets to change her dosage!”
Fast forward. Laura was 21. Living far away from us. I got a phone call from her in which she made very little sense and was asking what she should do. I could not determine whether her sugar was low or high, and she didn’t know. I asked her if she could test. She told me she was lying on the floor and could not move. I told her she needed to hang up and call 911. Could she do that? She thought so. So we hung up. And I paced, knowingI couldn’t get to her in less than twelve hours. I tried calling her back. Her line was busy. Okay, had she been unable to hang up from our call or was she talking to 911? I paced more and tried not to panic. I called again. Still busy. One more time. Still busy. So I called 911. “911. What is your emergency?” “My emergency is in North Carolina. Can you help?” and I briefly outlined the problem. “Do you know the county?” Thankfully, I did. The next thing I knew I was in a three-way conversation which included 911 in Laura’s county. I told her about Laura. She asked if Laura’s address was whatever-it-was-at-that-time. I just about yelled, “Yes!” and was told they had kept her on the phone until the ambulance arrived, and that she was on her way to the hospital. At that point I burst into tears and thanked both 911 operators profusely. (I tend to be good in the clutch and fall to pieces after.) Moral of the story – always know the name of the county in which your child resides!