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Guest Post: Living with a Dad Who is Living with Diabetes.

Today's guest post comes from Manny Hernandez of TuDiabetes.com (and he's also the author of Ning for Dummies - order it on Amazon!).  Manny and I presented at a conference in Philadelphia in June and while we were decompressing in the hotel bar, we talked about kids and handling diabetes when you are a parent.  I asked him to give me his perspectives on diabetes and his son, Santiago, and I'm proud to be posting his thoughts here. 
 
Take it away, Manny!
 
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When my friend Kerri asked me for to guest blog on SixUntilMe, I couldn't say no. She suggested that I write about how I explain diabetes and diabetes "goodies" to my son, Santiago (who thankfully doesn't have diabetes).

Back when I started being active about diabetes online, in early 2007 (he was three at the time) whenever he saw me doing a vlog, he was curious about it. He even sneaked into a few of the early podcasts I did, introducing himself as "Santiago from TuDiabetes" which we obviously were super-proud of. But what does diabetes really mean to him?

At some point, when he realized his dad had diabetes, he wanted to have diabetes, so he could be like his dad. Though I was proud to hear that (the "wanting to be like his dad part") I obviously didn't want him to develop diabetes. So I explained to him that diabetes is not something nice to have. It's something that requires poking one's fingers to test one's blood sugar, taking shots of insulin to keep blood sugars in control and living with the discomfort (and dangers) of highs and lows.

Since he turned 1 or 2, we signed him up for TrialNet. This involves getting blood drawn from him to send to a lab as part of these national trials to help with diabetes research. We get a letter a few weeks after every draw indicating the results (with him being a son of a diabetic, he's at a higher risk): when the letter comes in the mail, I hold my breath every time until I can read the result: "Your son tested negative for GAD antibodies..." Previous years, we'd taken him to have his blood drawn w/o a problem, but the most recent time, it cost us Episodes I, II and III of Star Wars (which I was able to find for a little over $20!) and a whole new level of love for Star Wars that I had forgotten about (from when I was his age and older).

Over time, he has stopped hoping to become diabetic. Thankfully (for me), he quickly understood how much a kick in an infusion site felt like a kick you-know-where, so we've established a code where I put my hand near my set when he's close to me (like when we're playing together) and tell him "Be careful, you know what I have there..." or something along those lines, and so far it's worked fairly well. :)

In the past year or so he picked up something that showed how much he cares about his dad. Because when I am low I tell him "I am not feeling well." Now, if I don't feel well because of a cold or something like that, and I tell him that, he will look for my meter and bring it to me, so I can test... and he actually wants to test too. He just prefers if it is with a "device that doesn't feel like a puya" -a syringe-like poke, in Spanish.

His solidarity and understanding, the way he shows his care and his knowledge about diabetes motivate me and make me want to take better care of myself.

Santiago's painting about diabetes
 
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Thank you, Manny.  And thank you, Santi, for being a great diabetes caregiver for your dad. 

Comments

Wow. Great post.

Thanks for the post Manny.

But I am a bit worried that you claim that Episodes 1-3 of Star Wars has revived your love for the series. I'm hoping you meant the original trilogy (now 4-6) and not the over-ILM'd, underwritten and poorly executed Episodes 1-3.

My three year old daughter is in a very curious stage. Right now she loves to watch me test and inject. She wants to test too, but still asks the same questions over and over. It is great to hear from a parent whose son is past the curious stage and that he is still diabetes-free.

Thank you Manny for sharing that. My kids are 10 and 8 and did not quite understand when I explained about my diabetes back in 2006. But now, just like Santiago, my daughter will go get me some juice and my meter if I mention I have a low. Both my kids are careful to remind the staff at Rita's Ice that their papa can only have the sugar free Mango.

Thanks for sharing this! Much needed advice and story! Will share with my husband!

Kids deal with so much, even without having diabetes. My sister is 15 years younger than me and has just discovered the Nick Jonas song "A Little Bit Longer" and she asked me the other day if I cried when I heard it. I was honest with her and told her that I did. And that I hoped she never had to deal with diabetes like I do and like Nick does.

My 7.5 yr old son was dx in Jan. 2005... his dad has T1 too. He was dx in May 2000 at age 24. We knew when I got pregnant that our child could possibly develop diabetes. I wish I would have known about TrialNet when my son was born. Obviously, I wish neither of them had it, but at least they have each other.

Thanks for sharing....I am Type 1, D-at 17, 37 years and my 29 year old daughter still makes the calls from 700 miles away and askes "How are your blood sugars". They will be our motivation for the rest of our lives. And I thank god.

What a great post Manny. Isn't it amazing how much of what we do is just part of our children's lives?

Manny- great post! You hit the hammer right on the nail. I'm waiting to see when and if niya changes her mind about the "D". Bravo!

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