Friday, July 25, 2014

Why my son won't go to diabetes camp

This blog subject is not here to start a war, or to offend...In fact, it's just being written up because this perspective exists, and I care to share it with you.

I'm a "flip-side" thinking mom that appreciates a good, honest and factual debate. My son is a teenager who happens to have Type 1 diabetes, and is intelligent, independent and...well...he expected me to write this down so I love him for knowing me in this way.

Sean (my son) has been introduced to everything I ever wanted since his diagnosis.
  1. A "mentor mom" (I lost her number, she called at a terrible time when I couldn't chat so there goes that).
  2. A D.A.D (diabetic alert dog) and holy hell that process has been no picnic, but we are on the right track now Follow HERE
  3. A medical ID bracelet he just got after 2.5yrs diagnosed (he actually likes and wears)
  4. A "coffee night support group" with parents and teens in our community via JDRF (Um, he refuses to go with, but his dad and I went when diagnosed and really appreciated the experience).
  5. A CGM (continuous glucose monitor); and I have LOST that war; it's not the hill to die on, so it's over. This also eliminates the excitement over the artificial pancreas because he refuses more needles/inserts...
  6. The PUMP. Only a year after diagnosed, having met another boy at a party with T1, was he convinced it would be ok (old school syringes were his preferred method until then).
  7. The D.O.C (diabetic online community). Which is MINE, ALL MINE. He hates Facebook, and yet knows his mama is straight addicted to networking and reading/commenting (because I am a free-lance writer). 
The 7th point right there ^^^ is my fav, and point of all this (if you are still following)... I don't involve him in the DOC because it is MY place to vent, read, learn, get lost in silly memes and find relief from all the stress of being a "caretaker." Sometimes I read something or see something so educational/funny, I share with my husband, or ask Sean about it...and recently this (what I initially thought hilarious) video surfaced. I was like, "Sean you gotta see this!" This ginger (we are a ginger family of 6) girl is making fun her experiences as a diabetic. It's comedic and clever. I appreciated it; Sean did not. He expressed his disapproval and that was that... so I thought. 

Tonight I entered Sean's room late to see if all was good as he has been running high late at night, and I want to square away his patterns (HA! you laughing?!) before he leaves for a Nike Elite Rugby training camp in a day. Sean went to correct his high number, noticed something on his pump, and asked, "Mom, can u do my site change (re-doing his pump insulin, etc) for me?"
UM, OK----KID MUST BE VULNERABLE. He has NEVER asked me this. I have changed maybe 3 sites in the past 6 months. (Shout out to all you parents who do it 24/7 for your young ones, xoxo).

As I got back to recalling how to do his medical equipment, Sean mentioned the video again remarking how he didn't know how people could find it so comedic to make fun of diabetes like that. I explained that sometimes comedy is a healing component...and then I fumbled up on his pump and reminded him, "I'm kinda messed up myself here (I have terrible auto-immune disease so I forget things easily, etc) and Sean cleverly said, "Now what if someone tried to make light of that." 
He captured my interest. I pried further and suddenly he was on a rant beyond belief!

He explained, "You know, it's like the girl in Monsters vs. Aliens who gets large, so they group her with monsters"... Kind of how the diabetic community just comes together, outside "the norm" of life.

I answered quickly, "It's comforting having a support system when you feel 'rare' and maybe even alone or misunderstood."
To which Sean went on to explain that "Ginormica" should have been placed right back into "normal humanity" as he put it, because it's what she wanted...

I saw where this was going and added, "You know how rare it is to be Type 1, let alone have a DAD coming alongside you...the support I've found is tight knit and special to me."

He answered, "But it feels like its own group, apart from whats normal, and I am normal I am NOT Sean "the type 1 diabetic" Booth. I am Sean Booth, and I want to be recognized as such.
This prompted me to ask, "Is this your problem with attending camps for diabetics?
He answered, "Kind of, I got a sneak preview to the place that one year, and didn't like the experience; but overall, I don't want a camp for diabetics, I want a camp. A regular camp."

A diabetes camp trip was point #8 actually, I just forgot to include it coz we had been to this very well-known California diabetes camp site in the mountains for a D.A.D conference 9 mo into diagnosis. We did not anticipate how poorly Sean does with altitude, and choose not to pay money for the mountains (again) overnight. We then found a white water rafting camp up further north in CA, but Sean hardly took interest after long.

Back to the conversation we were having, I mentioned how there are kids who keep their diabetes a secret; and he immediately responded about the mistake that can be. Sean explained how one's support system IS their friends. Not just one or two, but the whole group. He acknowledged, "If they don't all know this part of me, how can they help me? What if something happened to me? I need more than myself or one special friend, who may be absent that day, to call upon help if I need it."

I appreciated this so much and also asked him if he recalled making fun, (of doing blood sugar checks), by poking his finger & pretending the pencil he wrote with, caused him to bleed. He said, "It made it easier to share with those around me in class and make everyone comfortable with my needs."

Sean didn't quite get the connection I was trying to make by that recollection, because he still felt the harsh reminder of all the "downers" of diabetes. Videos, memes, humor,'s all a part of this disease he'd rather not focus on. Sean feels it sets him apart, and he doesn't want to be set apart.

When I realized that angle of his, I couldn't have been more proud. I was in awe of this kid, my CHILD/teen, to whom I had made his disease my own, making decisions and desires to better help who...him? No, me. The desires of my heart FOR him were to better help ME. This kid is doing awesome on his own. And if I ever refer to him as "Sean, my type 1....son blah blah" so help me god you have permission to slap me.

I define for clarity; I define for purpose and desire for his disease to be recognized and education exist alongside the awareness of it's components. But overall, I want a cure; because that would bring back "normal" which is, what seems, my son has already embraced.

This is his normal. He wants me to notice and respect the seriousness of it, but then treat him no differently. WOW. This kid taught me something good tonight.

I don't expect you to agree, understand, or fix our situation...Maybe in some sense you can identify with it? That's my D.O.C family...understanding. And I thank you for listening...

Love to you all,
Mom to an amazing son