The other night I attended my first ever JDRF Board Meeting/Research Update. I had no idea what to expect, as I’d never been to one before. It was a nice evening, albeit a little slower paced (ironically speaking, seeing as how they FLEW through that agenda it seemed.)  But the food was good, and the company was better. So all in all, it was a good night.

I was sitting at the table with my friend, Suzanne (her 11 year old daughter has been T1 for almost 2 yrs now), and another mom (Lisa) of a T1 daughter, who was dx at age 4.  And with the Family Team Chair for our local walk (Fred), whose 5 year old daughter was dx 2 days after her 1st birthday.  They got the news at the birthday party.  I was mesmerized by his story that he has surely shared a million times by now as he is very active in not only our local JDRF chapter, but also in Portugal.

We all talked about our pumps (I’m on Medtronic, 1 was on Animas, the other 2 on OmniPod.) All companies well represented at our small table. 😉

The three parents were going around the table, sharing war stories, if you will, about when their kiddos were diagnosed.  I was the only adult Type 1 at the table, so I found this strangely intriguing.  At one point, I turned the conversation back to Fred to ask how he knew something was “wrong” with his daughter, when she was not old enough to verbalize the symptoms (also no family history of the disease, but he said his wife has some autoimmune issues and went through a period of blaming herself for her daughter’s dx) 😦   So in my mind, I’m thinking for me at least, I knew that something was off, even if I had no idea at the time what was wrong – I’d been tired, not hungry, seeing things blurry, so incredibly thirsty, going to the bathroom all the time, etc. …. but other than noticing your child may be wetting her diaper more than before — how do you know?

He said that they’d taken her in for her 1 year checkup and  something was off with her blood work.   So they’d wanted to do more tests … and then they got “the call” during her 1st birthday party.  So they packed her things and ended the party soon, and headed to Chilren’s.

I had mentioned that sometimes I was grateful for being 17 when I found out, so at least I had a normal childhood.  He said it was no fun having to hold down your 12 month old daugther to prick her finger or give her a shot and there’s no way to explain why mommy and daddy were hurting her.  That broke my heart to hear that, even though he wasn’t in any way looking for sympathy. 

Sometimes hearing other people’s perspectives on the same disease I live with 24/7 can be eye opening. It’s so easy to live in our own little bubble sometimes.  It’s easy to forget the struggles that others face every day, even though they’re going through the same thing(s).

About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 21 years; most recently on the Medtronic pump and Dexcom CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
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4 Responses to Perspectives

  1. Scott E says:

    Last week, when my younger son was sick (the 7-month old one gets sick a lot!) I had that queasy feeling that it could be D. Drinking a lot, acting lethargic, don’t know about the peeing part since he wears diapers. I’m now sure that’s not it, it’s a more “routine” sickness, but the thought still crossed my mind. Then as I tried to get the antibiotic in his mouth and the eye-drops in his eye, I wondered how on earth I would give him an insulin injection if I needed to. He’s not a particularly cooperative patient. Later in the week, I read two cases of where someone else’s child had been diagnosed.

    Reading that second-to-last paragraph is tough. Even for me, while I’m thankful it’s not me and my kid, it gives me no comfort reading about others. This isn’t a “better you than me” type of situation… it’s equally difficult, just on a different parent. That said, I know my kids aren’t out of the woods yet. With all the cases of LADA/adult-onset T1 that I read about, I don’t know that they ever will be or that I can ever get that lingering fear out of my head.

    • Shannon says:

      Oh trust me. I get it. When my 4 yr old asks for water more than “usual” or takes more potty breaks than “usual” believe me, I notice. I was dx one month before my 18th bday .. so I was technically almost an adult. So I know that there’s no moment of “Whew. We made it past xx age so we must be in the clear.” That’s one of the many things I hate – not knowing if it’s lurking out there somewhere. I think your “fears” are perfectly normal and just. And let’s just keep our fingers crossed we never have to know what it’s like being on the other end of this disease.

  2. I’m also glad I was diagnosed at an older age!

  3. Karen says:

    I think hearing stories from other perspectives is so interesting and also so important. It’s part of what I love about the DOC – we are such a varied mix that you can always learn something from the situations of others!!

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