All Night Long

TrialNet must be getting more and more popular—it is definitely getting more convenient. Jack’s TrialNet Anti CD-3 stuff started at Yale. So far away! Soon after that, Yale set it up so Jack could have follow-up appointments at Joslin. Still pretty far away. Now Joslin has begun to let us have some of the follow-ups at Hasbro. That’s practically right down the street.


BYOB (-lood Kit)

So today we met a TrialNet researcher at Hasbro. She organized the documents, tubes, mailing labels, and the ice pack from Joslin and brought us to a phlebotomist for a random glucose test. (Random = not fasting, and not after having eaten any particular thing.) If the random glucose is over X concerning number, we’ll be called back sooner than his regularly scheduled OGTT. I think it would have to be pretty high (I dunno, 200+?) to make that happen. Other than that, we will not hear a peep.

Walking through the parking garage on our way in, I noticed Jack’s lips were stained purple. He had been eating blueberries. I asked him if he wanted to test, so we could see what kind of tube of blood we would be sending to TrialNet.


Who eats an entire pint of berries and gets a 141mg/dL**? Someone without diabetes, that’s who.

I wish I felt more BOOYA(!) about this. In reality, I am in agony. I’m having trouble sleeping because I’ve been obsessing about sending a person off to college with all of this medical apparatus and if a person doesn’t change his own site in seventh grade, is there any hope at all for the person at eighteen? And stuff like that. Then I flip over and think:

  1. Keep it together, woman! That Bionic Pancreas will be ready
  2. And even if it’s not, usually people are more mature at eighteen than twelve
  3. He babysits a dog alone in a house for a few hours at a stretch; is that like college?

Then I turn to the other side and think:

  1. This seems like it is easier for other people
  2. Seriously, everyone find this easy, even people who should find it harder
  3. Or they find it hard but in an easier way
  4. Oh my gah what if he becomes allergic to nuts
  5. Or Cleos

Then I flip over and think:

  1. We never finished painting the trim in the hallway
  2. When we moved into this old house he had that high lead level; then when he was retested, it was down to normal, but it was never clear if the initial lead level was an error or if he had just been very briefly poisoned
  3. The lead gave him diabetes
  4. We never should have moved here

Then I reverse-flip over and think:

  1. Also he had a plantar wart when he was three
  2. Could that have been the environmental trigger? A wart is…a virus? They said the trigger could be a virus…
  3. Or when he was hit in the face with the baseball and had a black eye? Trigger?

Etc. I hope that by writing this down I can make it go away.

**141 mg/dL is pretty perfect. Also, here is a dog.





11 responses to “All Night Long

  1. Spoiler: You will all be fine. Trust me. I’m a… Wait. What am I again?


  2. 141 sounds great! I completely hear you on that nighttime train of thought. The way you spell it out is just hysterical! These thoughts are just never productive.

    I have a new scenario to ponder come nighttime… We are hosting a French student for two weeks starting later this month and I have just learned that this family thinks my son will be staying with them. (!!!) I’m guessing that there are CWDs who have been exchange students (have there???). Our reaction is You are seriously mistaken!!! This is a one-way exchange — not two-way! Add loaves of French bread everywhere to the picture (celiac!) and peanut butter (anaphylaxis!) and there is just NO possibility. My son actually has no interest (I think). This will be great food for thought at 2am…

    Sweet dreams… Seventh grade? College is years away and I have great faith that a bionic pancreas will be on the market by then. (Easy to say during daytime hours) 🙂

    Liked by 1 person

  3. I’m hearing you!!!! All over the world us mums and dads pace the metaphorical floorboards ,imagining futures and troubleshooting for what may be to come! At least we understand each other! Thanks for sharing!

    Liked by 1 person

  4. Mary Margaret

    At the one CWD meeting made it to, I attended a session with one of the psychologists. She had us list all of our fears as d parents and then dealt with the realities of each one. As the list went up, I felt like I was a nail being hammered into a 2×4. Every single thing listed terrified me. Working through the realities made it better, a bit. I’m sure writing them down helps too.

    I have a couple mantras as a parent. One is that whatever is going on, whatever stage they are in, they will grow out of it. Whether it’s a great thing (sitting in my lap to us me) or horrible (omg , those knock knock jokes!) The other is that, no matter what gets thrown at my kids, they’ve dealt with it. They’ve weathered the big changes better than I have .

    Also, last year the college age kid who works for me was dx t1. Watching him learn to deal with his disease, maintain great grades, hold down a job, and volunteer has been incredibly helpful. He rolls his eyes at me when I tell him to go to bed high after he’s been drinking, but other than that he’s great. And I can handle an eye roll.

    Liked by 2 people

  5. melissablee

    I know nothing can really allay the rolling over on your side thoughts, fears, and concerns, but I’ll try.

    Many of the adults I know with diabetes went to college. All of us who did managed to survive it.

    I don’t know very many people who think this is easy. Those who do have some kind of “good” sort of diabetes, clearly, and they can eat dirt.

    We should have an artificial pancreas (or 3 or 4) on the market by then. It will certainly help.

    Liked by 2 people

  6. I can totally relate, as an adult with type one, and as a mother of children who did/do not have diabetes, there is always more to think about when awake in bed at night! I agree with the others, that many of us went off to college and are still here doing fine, and it’s not easy.

    I was 12 when diagnosed, moved 3,000 miles away from when I was 17, and am now 52 and still am doing really well (except the days when I’m frustrated because what I did yesterday doesn’t work today….!)

    Liked by 2 people

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