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When Henry was diagnosed with T1 this social shift happened. It felt like about 95% of the people I knew and counted as friends went running for the hills. I could imagine how they felt though, I could not understand how they got there. But everyone is different. Like, I can imagine how someone could abandon their child but I could not imagine or understand myself doing it. People do things for all kinds of reasons, and you can’t really know why, unless you are them and you never will be. At first I was full of a lot of anger, hate, rage, deep terrible sorrow. Guys, I’m a messy crier, I tried to do this privately at the time to spare the world. So people might not have known how hard of a time we were having. But really, if someone saw me crying from a distance they would contact the Center for Disease Control, it looks that bad.

But anyway, I had it in my head that I had to keep it together, that I had to be calm with Henry and for the most part I was, I didn’t want him to internalize that panic, to know that something was really terribly wrong. He knew enough to know that it was a crappy situation. I had it my head that I couldn’t ask for help, I didn’t want help, I refused contacts that people sent me like “My friends kid has T1 you should talk to them.” I’m like “but they don’t have my kid, no one feels as bad as I feel I am the only person in the world.” It was a dark time. While I was in carb training (it’s a thing) this other set of parents was in the training and they had 2 kids with T1 and they said to me “Don’t worry just eat nothing but packaged food. It makes things easier, you know like Eggos and cereal.” and in my head I was like “F*CK YOUR EGGOS” what I really did was look at them and started to messy gross cry and muttered something about my homemade waffles. I’m not saying that other people would have reacted this way, it’s just my charming way. I’m a total jerk. If something happens to someone else, I’m like borderline smothering, “Do you need a sandwich? Do you need me to take your kids overnight? Do you need me to take you somewhere? Text me any time, I’m there..etc.” I’m not saying that this is better…but now you can see how crazy I am.

When something like this happens though, you quickly see how people divide up. I imagine it might even be the same way people would react if your spouse died, there was divorce, like “Eeeek I’m so uncomfortable…I’ll just walk backwards, slowly and fade away because I don’t know what to say.” But you know what you say? “Crap, this is so out of my comfort zone, I don’t know what to say.” Chances are the person (me) will laugh and say “Me either!” or you can say “I’m sorry this SUCKS!” and the person (like me) would be like “I KNOW IT SUCKS, I NEED A BEER.” and then you are like “LETS HAVE A BEER I CAN DO THAT!”. Dont be scared to feed the newly diagnosed family. Just pretend that you are feeding a family on the Atkins diet, that’s the easiest way. Be like “here is a roasted chicken and some vegetables, you do the scary carb part!” We have already had like 4 days of carb training, we are WORKING on it, we can work on the meal you make. Don’t be scared of us. Eventually, the whole “play date” situation arises. Uh oh. Will you kill my kid? Not likely. Treat him like a gremlin and just don’t really feed him stuff, unless we’ve packed it. If they are a little older, at that point they should be able to navigate food stuff on their own. We will give you lots of info if you are ready for it, if you aren’t ready for it, don’t feel bad, let us take your kid for a play date. That’s fine we don’t mind. We want our T1 kid to feel as normal as possible, and we wont be sending them off for play dates if we don’t trust you, so–major props to you first play date friend you are 100% awesome in our book.

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Here Henry’s future wife Maddy checks Henry’s blood sugar, which she calls and offers to do when she knows shes about to see him.

To the teachers who don’t understand how the newly diagnosed T1 kid still acts crappy sometimes think about the T1 kid like this. The kid, just got told that he/she is sick, that they could have died, that they can die if they don’t have medicine. They are a kid. Up until this point it might not have ever occurred to them that they would die, that life was ponies and rainbow sprinkles up until this point. They have to get a shot if they want to eat Goldfish crackers, they hate shots, but they love crackers, they feel hungry but they don’t want a shot. Its hard. Or, think about how you are all packed up to go on a huge exciting road trip, you are packed perfectly, there is gas in the tank, you have a deadline of getting to your destination by nightfall…ready to go, right? But, now you can’t find your keys. EVERYONE is in the car, getting antsy in their seats, they are READY TO GO, but crap where are your keys??? Hours are flying by and it seems like you will NEVER get to where you are going and the whole trip is ruined…feeling frustrated? That is what its like having a high blood sugar number. No matter what anyone says to make you feel better, you can’t find those diggity dang keys and you feel like crap.
The alternate is that you had your keys all along and your trip is AWESOME and you are like an hour into the trip, no traffic, awesome weather, best music, everyone is in a good mood, you just passed the sign that said “next gas station 50 miles” and then your car stops, in the middle of nowhere and you realize that your tank was empty. You are scared, your phone doesn’t work, you can’t call anyone to bring you gas and there is not another car in sight. That my friends, is low blood sugar.

These children who have been newly diagnosed are grieving. Stuff got real, fast. So when they are feeling upset when they are low or high, there us that undercurrent of grief. It might help to be like “Man, I know you don’t feel good, and I think it’s because of your blood sugar. I hate diabetes too. Dont you hate it? Let’s pretend this soccer ball is diabetes and kick the crap out of it!” Or offer them a safe zone that is in eyesight with a special book and a special bottle of water that they can drink (if they are high) or if they are low, give them that same spot, with their treat that raises their blood sugar and that same book or toy so that they can feel good again. The T1 kid wants to feel good again, and over time they will start realizing when they feel high or are beginning to go low….just give them time.

To the strangers that say stupid crap like this:
“Can I have a 1/2 scoop of ice cream in a cup for my son? Ill pay the regular price. Thanks!”
“Oh but he can have a whole big scoop.”
“Nope! He can have 1/2 a scoop, thanks!”
“Why?”
“Because I asked for that. He requires insulin shot for food and I gave him the right amount for 1/2 a scoop.”
“WHAT DOES THAT MEAN? THAT IS SO GROSS. Ugh. I could never give my kid a shot! That is so disgusting. I could never have a kid with diabetes!!!!”
“…. so you would let your kid die?”
Hands over 1/2 a scoop. Ry looks at ice cream lady with the death stare, Henry oblivious and eating his disgusting licorice ice cream.
How do you not know how annoying you are? Seriously? You just said/yelled that? Did you think you were being funny?

Look I’m not expecting everyone to know whats going on. When the nurse told me that he had T1 I looked at Henry and was like “You can’t have a french fry ever again. Im sorry.” This wasnt true, I didn’t know what I was talking about. Henry looked at me when he heard the word diabetes and said “Will they give me medicine to help me grow my legs back?” Because I had recently found my T2 birth father who was a bilateral amputee because of poorly managed T2 (he was stubborn). But I dont think that I would have ever said something like that ice cream lady. And now that he has a CGM on his arm, adults and children are like “what is that on his arm, what is that? what is that, what is that on your arm, what is that?” often if it’s a kid I say “Why don’t you ask Henry what that is and if wants to tell you he will”. Every once in a while he ignores people but mostly he happily tells them that its his baby robot and then I back it up with information. If an adult asks, over and over I ask Henry if he wants to share and treat it the same way.

If anything, feel free to email me and say “My friend’s kid has T1 now, what should I offer to do?” I’ll happily help you along. Just try and be the friend that you think that you would need if something like this happened to you.


Comments

  • You are an amazing mom and Henry (and Ry) are very, very lucky.

  • Focused on Henry in that sentence above since this is about him. Had to mention Ry because she is my daughter’s favorite princess and BOTH of them are really, amazing kids with super awesome parents. Just sayin’

  • Ry really wants to play with Kate. Ry is also going through something right now where she doesnt want me to talk about her. Little shy princess. She’ll come around though. Shes an amazing sister to Henry we are so very lucky to have her.

  • Baby robot. Stealing that. Thank you for helping me through today. I get panicky when I think about being here without having you.

  • Oh Maggie. I am so forever thankful that Jenn pointed me in your direction when she did. I can not even imagine what it’s like to be 15 months pregnant like you and dealing with this. Have mercy. I just wish we lived closer to each other. Clearly, you need to come up here during the summer.

  • Lauren

    “Just try and be the friend that you think that you would need if something like this happened to you,” is really solid advice for LITERALLY EVERYTHING. May we all have the courage to stare down our ice cream ladies.

  • We also like to tell our kids that we should all be extra nice for the people that havent learned how to be nice yet.

  • Emily

    My friend just sent me your blog and this post rocked my world. My daughter was diagnosed with Type 1 last Monday after a terrifying trip to the ER. Little miracles (like her survival) have occurred all over the place since that awful, awful day and this post was one of them for me. So nice to know I’m not alone even when I’m this deep in the trenches. Thank you…

  • Oh man. I know that feeling too well. I wont soon forget the ER and diagnosis. Please email me if you need anything or call. I have a gmail address, it’s sarabee. Im so sorry. Maybe I can send you an email of things that helped me through the first few months. Where are you located? How old is your daughter? oxoxox

  • Emily

    Thank you. So much. Just emailed you. Hope to met you soon. xoxo

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