Mentoring

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.

Spinning Straw Into Gold

It seems like the school year just gets more more intense and compact as we race headlong towards the finish. There are more activities, assemblies, and projects and June keeps getting closer and honestly I don't know its all going to get done. I try to remind myself to take one day at a time.

And so, with work so busy and the kids' schedules filled, I added one more responsibility into my life. I had been practicing the fine art of saying "NO" since I started working full time, but this is one thing I couldn't resist.

Last weekend I went to a training session to work with the JDRF to mentor newly diagnosed T1 families. Those first few weeks of diagnosis -- that crazy, intense time -- are still so clear in my mind. The fear, the tears, the sleeplessness, and cramming all that life or death info into an overtaxed brain! I was so lucky to have a friend to help in those first days, someone who had been through it with her own son, who held me up when I was collapsing, who went to the 504 plan meeting with me, who emailed me or called me daily until we got our minds wrapped around this enormous change in our family.

I received my first assignment today, and called M. to make sure he received his "Bag of Hope" from the JDRF, and to offer help, sympathy, a shoulder, an answer. M. was very thankful for the phone call. He's at the point where they are just starting to get the blood sugar numbers in range, and feeling like they might have a little control over the situation. M's child is independently testing blood sugars at a young age (what a hero!), and is starting to count carbs. They were still taking everything day by day, but sounded like they were doing well, all things considered. I promised to email links to all sorts of places that helped me when I was in crisis, and told M. to call or email me at any time with questions, concerns, or successes. It was a great conversation.

We probably talked for about 15 minutes. I don't know if M. will call me back, but he did seem happy to know that there were people out there willing to give their time to check in & help.

Oh yes, I am. Thank you, M., for being my first phone call. For helping me learn how to mentor. For sharing your story with me. I'm sad to welcome you to the world of diabetes, but so happy that we're both in a place with supportive, caring people.

Now let's fix the US health care system. :)

Mentoring

I've just signed up to take training through the JDRF to become a mentor to new families diagnosed with Type 1 diabetes.

"Families diagnosed with Type 1 diabetes." Doesn't that sound funny? There's only one person diagnosed. But a diabetes diagnoses truly affects the entire family, as we found out in 2007, and as we're still learning.

I know I haven't been dealing with this disease in my own family for a very long time compared to so many others. But I am looking forward to the mentoring training, and to helping anyone else in this situation in any way I can.