It’s Happening

C’s application was approved.  He will be receiving a Diabetic Alert Dog!!

This is such exciting news.  We’ve struggled for a while now with him having trouble feeling lows and not feeling a hint of a symptom of highs.  He craves freedom and I want him to have it more than anything.  He’s 12 years old.  Yet, sleepovers scare me to death.  The idea of him forgetting to test and not feeling a low; not feeling the high that comes from a site accidentally pulling out; the thought of him not having help while he’s out or a friend not knowing how to respond when it comes down to it.  These thoughts get to me and it’s hard to move past them.

We’d considered a Continuous Glucose Monitor (CGM).  C’s insurance does not cover it so we weren’t in a big rush, but have definitely discussed it many times.   C knows that I wanted it.  and I know that he doesn’t.  He does not like the idea of another site.  He hates the idea of carrying another item.  He’s already silenced all of the alarms on his pump so that they don’t go off in class and embarrass him…  But a dog?  He would definitely not resent a dog.  He loves the idea of a dog.  I love the idea of using a natural resource and tapping into its abilities.

This is the route for us and I cannot wait to start the journey.  Oh, that’s right… it’s going to be quite the journey.  The organization, Guardian Angel Diabetic Alert Dogs, is doing a sort of co-training with us.  Instead of us waiting 1 1/2 to 2 years for a fully trained dog, we will be receiving a brand spanking new baby puppy in January.  But not just any puppy, one who has been diabetic scent imprinted, meaning exposed to the scent we want it looking for since birth when nursing.  This puppy is bred to be a working dog and is being taught the scent we want to know about.

Still, we won’t be alone.  When we get the puppy (who’s due to be born in about 5 more weeks) we will get a full weekend of teaching us how to train.  We will enroll in a standard puppy training class, we will do scent work.  After 2-4 months, puppy will go back to the trainers for a month.  They will do more intense training including lots of public access work (remember, this dog will go everywhere!).  Then, it comes back to us for another 2-4 months with new instructions on what we need to focus on.  This cycle will repeat until the dog is 1 1/2 to 2 years old and fully trained.  We will be getting our hands held through the entire process yet by having the puppy live with us from the start, it will get precious bonding time with C AND will have the advantage of having real-time training by living with a diabetic.  Not just scent samples, but real-time highs and lows.

I started a facebook page to give updates on our process.  I’d love it if you’d LIKE it and pass the word!

www.facebook.com/camdensguardianangel

The Scary Part of Independence

The other day I posted about how great it is being able to leave C alone and how wonderful he is at taking care of himself… Well, today I had a bit of reality thrown at me.  Although, I typically don’t blame diabetes or get angry with diabetes (anymore!), I definitely felt the unfairness of it today.

Last night, E and I went to the Dodgers game (they lost) and C stayed at his friend’s house until we got home at midnight.  This morning I decided to let him sleep when I went to work due to that.  I tested him and gave a correction bolus.  Woke him slightly to tell him I was leaving and that was that.

About an hour later I texted him asking if he was awake yet.  No answer, still sleeping?  I called about 15 minutes later, no answer.  I texted again with no answer.  I tried to call my roommate but got a text back that she was at work.  I called him probably a total of 20 times over the next 15 minutes.  I called the house phone (which we never answer because we only use it to call 911 and don’t give out the number) and of course, he didn’t answer.

I jumped in my car and headed home.  The entire way trying to mentally prepare for what could be the worst.  Picturing my son unconscious, maybe seizing, maybe dead.  Wondering if he had already been dropping this morning when I gave the correction dose and I’d pushed him too far.  Thinking about the people who have expressed that they don’t think I should let C stay home alone because of D and how I’m going to want to punch them for judging me if something happens to him.  Thinking of his Dr. and how she probably wouldn’t approve of ‘her’ kids being left home alone and how diabetes is the one to blame in all of this.  I’d never ever have these awful thoughts in my head if it hadn’t shown up in our lives.  But it did.  I haven’t felt that angry in a long time.  Granted, I have a lot of other SHIT going on in my life which probably helped me reach that level of being upset, but I just truly fell back into my old(er) thoughts of just feeling that C and I were cheated.

Of course he was fine.  Of course he was sitting on the couch playing video games and eating popcorn.  Of course he left his phone, on vibrate, in his bedroom and totally forgot to call me when he tested.  Ya, he heard the house phone ringing off the hook and thought it was weird but it never occurred to him that someone would be calling HIM on that phone.

I went over the rules with him again and added a new one that if the house phone rings twice in a row or even more he needs to start answering it.  I have been really pushing myself to think of C, not a kid with diabetes, in all situations.  If he hadn’t been diagnosed with this would I leave him home alone at 12 years old?  Yes, without a doubt.  So, scary or not, that’s what I’m going to do.

My Baby’s Growing Up!! Woohoo!

For the last two weeks, C’s been staying home alone while I go to work.  Believe me, this has been pretty scary for me, but it’s working.  Not only that, but it’s working better than him coming in to work with me.

When he’s at work, he sits.  All. Day. Long. in my office on a computer or reading.  And he’s snacking out of boredom. All. Day. Long.  His blood sugars are letting me know loud and clear that he should have more activity in his life.  His mood is telling me that he needs more stimulation than my small office (and Netflix) can offer.

I have alarms set, every two hours, on his phone to remind him to test and call me.  He’s been great.  He has strict orders to eat real-live meals and not snack on junk food all day.

Today I realized how independent he is and how proud I am of him.  I signed him up for a class at the community college for kids going into 7th and 8th grade.  It’s only for 4 day, 3 hours a day.  He started today.  I walked up to the teacher and said, “Hi,  I just wanted to let you know that my son, C, has type 1 diabetes.  You’ll notice him testing his blood sugar in class.  He also has water to drink and candy he may need to eat, would you like him to move somewhere else, away from the computer if he needs to eat or drink?”  He said, “That’ll be fine, did he bring me some candy, too?”  we laughed and I left.  I realized how much easier it was this year than the other times I’ve left him somewhere new.  The difference is the confidence I have in him.

Marble Slab

As I may have mentioned many times before, we go to RedBrick Pizza every week or two for their delicious gluten free pizza.

A few doors down from them is a Marble Slab Creamery.  A couple months ago I gave in and we stopped there for some dessert.  I explained C’s celiac disease.  I asked to see their ice cream ingredients, I asked them to use a clean scooper and I asked them not to mix C’s ice cream on the slab, just to put the toppings on top.  Like toppings.  They gave him an extra big bowl so he’d have room to mix his own gummy bears or sprinkles or whatever it was he had.

Since then, we’ve gone a few times.  Maybe 5 or 6?  It not always the same person working, I think we’ve come across two or three people.  The last time we went in something magical happened.   As I was about to order I noticed her walk over and grab a clean scoop, I didn’t think much of it.  Just thought it was time to grab a new one.  I ordered “one scoop bubble gum ice cream with gummy bears…”

She cut me off.  “Not on the slab, right?”

She remembered us!  Can you believe that?  It was so rad realizing that the more we go out, the safer C gets.  The more people we inform of his needs, the more people will help him.

Diet Suicide

My kids are big fans of suicide… not the real deal… the soda mixing deal.  That’s what we called it when I was a kid, do other people call it that?  You know, when you mix all the flavors from the soda fountain?  I hope so or else this whole thing already sounds weird.

I never really bought soda for the house before diabetes came along but if we went out somewhere that had a soda fountain though, I’d let them have at it.  I’m no longer a fan of the mixed soda, but they always love it. 

We went to see the Clippers play the other day.  On our way home we had a car full of four hungry kids who were driving me nuts.  We HAD to make a stop at McDonald’s.  And guess what?!!!  The one in Encino had Diet Coke AND DIET DR. PEPPER!!  C was so excited to make a diet suicide!  Woohoo for restaurants that have more than just one diet option!!

***

p.s. A lot of people around me think that C can’t have sugar or soda BECAUSE they see me giving him diet sodas.  I just want to clear it up that diet sodas = no hassles with blood sugar.  He CAN have regular soda, it just means it’s one more thing to THINK about.  I have to figure out how many carbohydrates to give insulin for it, assuming he’ll drink all of it.  I have to factor in the amount of exercise he’s getting.  I have to understand that the sugar from the soda will hit him fast, there is no protein, fat or fiber to help slow it down.  Full on, liquid sugar is just tricky.  Diet is not.  When we are at a party though and C’s only option is DIET COKE, just like everywhere else, and everyone else is drinking Sprite or Root Beer and that’s what he wants, as long as we’re not already in the middle of a blood sugar nightmare, I let him go for it.

I don’t FEEL like educating!

We don’t deal with too many people saying ignorant things or being rude or not understanding C’s autoimmune woes.  I just realized that maybe it’s because we’re not all that social.  We have such a small circle of people we’re around and it seems that a bunch of them have diabetes themselves or in their family anyways.  We dont’ really ‘get out’ much.

Remember that awful look I gave the basketball coach for suggesting he ‘go to the bathroom’ to test?  Ugh, gross.  Well, at that God-awful basketball party we recently attended there were some other things getting on my nerves.  It really was THE shittiest party we’ve been to to date.

When we arrived we were among the first 3 or 4 families to get there.  The waitress came out and I overheard her talking to the coach and team mom about when they should bring out pizza and all that good stuff.  She rattle off different kinds of soda and asked what she should bring out.  Coach replies, “Bring out a pitcher of Pepsi, Sprite and Root Beer.  We’ve got a diabetic though, so we’ll need a glass of water for him.”  C didn’t hear this so I decided not to say anything at that point.  I was already in sort of “protection-mode” knowing that we were in a pizza place and C already felt like an outsider.  A few minutes of steam brewing in my head later I said, Hey, you want a diet coke or something, or water, or whatever?  He goes, water’s good.  Phew, no scene necessary.

I KNOW that these are the times when I’m supposed to EDUCATE people.  But sometimes I feel like they’re going to nod in agreement with everything I say, smile sweetly, and not hear a thing.  I had this feeling this night and didn’t feel like dealing.  Sometimes I’m on the edge of bitchiness and don’t feel like getting pushed to the dark side.

After the pizza, Coach stood up and gave a quick little speech about each kid and handed them a cookie.  Not just any cookie, these were lemon-flavored, basketball-decorated, gluten-filled delicious-looking cookies.  Player names and numbers on them and everything.  I told C to smile and accept the cookie and just bring it over to the table (we’d brought a GF cupcake from home anyways).  So C gets called up and his introduction is made.  Coach hands him the cookie and says, “You can give this to your brother.”  UGh.  I knew the routine.  It was annoying anyways.  I don’t know what else I could’ve expected that would’ve worked better.  Maybe it was the only option, it just felt shitty to watch him get handed something and be told he can’t have it.  I hate celiac disease.

Afterwards, the team mom comes over and offers us more cookies.  We declined and she apologized for  not remembering that C had diabetes when she’d ordered the cookies.  I sweetly let her know that people with diabetes can definitely eat cookies, however C also had celiac disease which meant he couldn’t eat things with wheat, rye or barley.  That means anything with flour like pizza or cookies.   And there it was that sweet smile and nod that looked just like she hadn’t heard a thing I said.  Her reply, “Well I’m just glad YOU’RE thinking, because I certainly wasn’t.”

Ummm, ya.  Of course I’m thinking about it.  Why wouldnt’ I be?  And I would never have expected her to think about something that she didn’t know.  Thanks for that meaningless reply though.  Blah.

On the flip side, sometimes people around us getting bits of education all on their own.  To me, it feels like it’s because they care enough to open their minds and notice it more.  Last night I went out with a good friend of mine.  He excitedly tells me that he heard on the radio about some “amazing miracle treatment for diabetes.  Artificial pancreas or something??”  When people around me report to me things they’ve heard on their own, not from me it’s like the best gift they can give me.  I like when I don’t HAVE TO  educate, I just open them up to something new to pay attention to.

Not Welcome Here

So C’s basketball team had their end-of-season party tonight.  At a local pizza place.  Regular pizza.

We considered not going, but I decided to take him anyways.  I called ahead and asked if they offered gluten-free pizza and was told no.  I told them my son’s team was coming in and he had celiac disease, would it be ok to bring outside pizza that was gluten-free for him.  The answer was and enthusiastic “Absolutely.”

We stopped at our local RedBrick (we LOOOOOVVVVEE RedBrick’s GF pizza!!), grabbed a pizza and headed to the party.  We sat down and I told the waitress that we had outside pizza, explained why and that I’d called earlier to make sure it was ok.  She was great, “Of course.”

One and a half HOURS later, she comes back and says, “Sorry, but she’s really upset that you brought in pizza from somewhere else.  She said it’s too late this time but you can’t bring it in again.  So next time-” I cut her off there and said we wouldn’t be coming back again.  I was pissed.  How embarrassing to call us out in front of everyone we came with and make a kid feel even more different when it’s already over.  There’s not a lot we can do 90 minutes after the fact.  My mom asked if I wanted to explain to ‘her’ (who I assumed was the owner complaining) and I didn’t.  I’d already spoken to two other people there and didn’t want to deal.  With that another mom mentions that her son has celiac disease and she’d brought in a gluten-free crust from home and they put the toppings on and cooked it for her.  I was like, Dude, why didn’t they give me that option when I called?!?!  She told me she goes there all the time (most sports in our town have their parties there.  If you show up in uniform you get free pizza).  So clearly, if she’s there as much as she says she is, they should know the routine, right?!

As we leave and are paying the woman/owner comes up and says (YELLING), “What were you thinking bringing another restaurant’s pizza into my restaurant?”  I again explained celiac disease and that my son couldn’t eat their food.  I told her that I’d called ahead and that I checked with our waitress when we arrived. 

She told me that the other mother does it right having them make the food.  I told her it would’ve been nice for her employees to have suggested that option being that she’s a regular customer and I was calling asking what my son’s options were.  Her reply was that she’d be sure to put a sign on the front door so it doesn’t happen next time.  None of this sounded nice.  She was so beyond pissed and totally yelling at me in front of like 50 other customers.  I told her not to bother with the sign for me because we wouldn’t be back.  She goes, “Real nice, after I just fed your kid for free!”  MY response? “HA!!  YOU didn’t feed my kid, I had to bring his pizza from somewhere else!  By the way, thanks for making us feel so welcome in your fine establishment!”

Now my kids are wondering what the hell is going on.  I was so pissed.  We bought a pizza, a salad, drinks, the works for the rest of our family.  It wasn’t like we were mooching off this bitch!  (We also threw out our leftovers we were going to bring home at that point)  So I’m trying to explain to my kids that some people are assholes plain and simple.  Some people shouldn’t face their customers if they have no customer service skills.  If they’d told me up front about the option of bringing my own crust and having them safely make my son a pizza, we would’ve been customers for life.  I would’ve been thrilled knowing that three blocks from my house was a restaurant trying to be accommodating.

She should’ve reprimanded her employees for giving me the wrong information instead of yelling at me in front of an entire restaurant full of people.  Fuck her, she’s lucky I didn’t cram our leftover pizza in her face like the Three Stooges with a creme pie.  Although I was tempted, hence it hitting the trash can before I got the chance…  UGHHHH!

Did I mention…

I LOVE REDBRICK PIZZA!!!!!