When Daniel was diagnosed with type 1, a wonderful woman, C., took me under her wing. C also had a son, a bit older than Daniel, who was dx'd about a year before. C emailed me long letters daily, making sure that we were all okay. She answered all my questions in detail. When I could no longer stand to hear or read anything else about diabetes, she just sent notes that said, "I understand. I'm sorry." She found resources for me, and went with me into Daniel's high school when we had our 504 plan meeting. When the diagnosis happened, we felt like we suddenly had to assimilate an incredible amount of knowledge in order to keep our son alive and functioning. It was hard to remember everything; we had lists and spreadsheets littering every surface of the kitchen... it was crazy. Looking back, it seems so long ago, although three years is not so long. Three years ago, in the middle of the maelstrom, I couldn't imagine regaining a sense of balance, and normalcy.
Fast forward, and we are standing on our feet again. Diabetes is always lurking, ready to lash out if Daniel lets down his guard, but now he knows what to do to keep it under control. And I know what I have to do. In the US alone, 40 children are diagnosed with type 1 diabetes every day. Forty sets of parents grip needles for the first time, trying their best to overcome their fears and inject their children. Thousands upon thousands of bits of data swirl around in their brains, as they try to remember blood sugar to insulin ratios, correction factors, emergency phone numbers. I know I have to be the person at the other end of the phone or the email, ready to say, "I understand. I'm sorry."
Tonight's phone call was pretty difficult. The family was 6 weeks in, and the child was only 8. Mom was unable to give her child a shot... she just couldn't do it, and relied on her husband. She is volunteering in her son's school constantly, because she is scared to have him be there without her. She can't trust anyone else with her son, but she also barely trusts herself!
I remember that feeling of dread, the horrible dreams that I measured out the wrong amount of insulin, that I calculated the carbs wrong, that I sent my child into an awful low. Dreams of endless nights at Children's Hospital. I was just reliving those feelings as I listened to this woman's voice.
We both talked & shared for a long time. I think sometimes it just helps to have someone listen to your fears -- someone who truly gets it. The best I can do right now is just to be there when she calls or emails, and to let her know that her son will be okay, and that they will get through this awful time.
I think it's kind of sad that they call this newly diagnosed time, when your body is still producing some insulin, the honeymoon period, as if it is a lovely thing. As if getting to know this companion, the one who will be with you the rest of your life, is a cause for celebration.
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Mike Thomas
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