Ignorance Limit Met

And the list of people who can kiss my ass continues to grow.

So last night I ran to Target to pick up cookies at nearly 9pm.

Why would I go to target at 9pm to get cookies you ask. Good question.

Well my dear daughter told me at 8pm that she volunteered to bring cookies to a Halloween party in music class. She is so thoughtful. (tinge of sarcasm there)

Off I go to Target to get cookies.

While at target I grab a few other essentials including some Glucose tabs, lancets and alcohol wipes. (yes we occasionally use alcohol wipes and occasionally change the lancets)

Now I’m in line. Its a long line filled with lots of last-minute costume shoppers with kids whining (why are they at target at 9pm?) that they don’t want to be Ironman or whatever and various moms are telling them it’s all that’s left. (So glad this wasn’t me – I dutifully got our costumes on Sunday)

The lady in front of the lady in front of me is having trouble finding her driver’s license which is necessary to write a check. She is digging through a humongous purse while her son, maybe 8 years old, digs through her wallet (again why at Target?).

There are more people behind me and I’ve already unloaded my basket, alas I wait and smile a “I’ve been there” smile to the poor soul holding us all up.

MEANWHILE – I notice the lady in front of me eyeing my items on the conveyor belt. She looks perplexed, painfully perplexed and there is certainly a hint of disapproval in her smug smile. I ignore it thinking she is just annoyed at the lady looking for a lost licence. Then she (the perplexed lady) speaks to me. She does not take her eyes off my items.

Perplexed lady: “Excuse me, do you have diabetes?” as she nods at the glucose tabs, alcohol swabs and lancets.

Me: “No two of my children do”

Perplexed lady: “two of your kids?”

Me: “yes”

Perplexed lady: “I’m a nurse”

Me: “congratulations” Ok that might sound bad but had you seen the condescending looks she was giving my items you might have replied the same – no, she was still not looking at me.

Perplexed lady: “Do you really think you should be buying your diabetic kids cookies?”

This is where I wish I could draw. I would like to show you the images that went through my head. Forgive my doodle but its the best I can do. 

Me: “My kids have Type 1 diabetes. They can eat everything everyone else can eat. Did you say you were a nurse?”

Perplexed lady: “Yes. I deal with diabetics all the time. It’s important to teach them (THEM?? – I’m sorry are pwd like those who travel in steerage?) about eating healthy to reverse their diabetes.”

Me: “Eating healthy is important for everyone not only people with diabetes. Enjoying a cookie will not endanger my kids just like not eating a cookie will not reverse their diabetes. And as much as I am enjoying this conversation it seems I have met my limit in dealing with ignorance today so pardon me if I ignore you now.”

Perplexed lady finished checking out just then and didn’t say another word to me although her head shaking may have indicated that she disagreed with me.

The cashier greeted me friendly apologised for the delay and then apologised for the lady in front of me. Then she said “Always let them eat cookies”. As she loaded my bags into my cart I saw a glimmer of what I think was a diabetes alert bracelet.

 

Sunday Seven

oops forgot to post – DVRd episodes of Two and Half Men got in the way.

  • Always check blood sugars before ascending 150 feet up. Kids were stuck 15 stories up on a malfunctioned ride for 15 minutes. Hadn’t checked them prior to. Yes I was freaking out.
  • I don’t feel guilt. My kids get “Special Assistance” passes at theme parks thanks to the ADA. Yes we skip lines or get a ‘come back time’ so my kids don’t stand in a 2 hour line for a ride. My hubby still feels a little guilty but my kids will live with diabetes for all their lives – skipping a few ride lines a couple of times a year  isn’t taking advantage of their disease. It allows us to attend theme parks without fear (well until they are stuck 150 feet up with no sugar).
  • Animas – please consider having multiple reminder alerts for low cartridges. One alert is not enough for a 13-year-old teenage girl. It is too easy to hit a button and move on to life’s more important things like gossip, boys, and new braid styles. Result of only one alert – daughter runs out of insulin an hour after school starts while I am 30 miles away.
  • Kids taking part in the Big Blue Test daily. As if they were not competitive enough with their numbers – the Big Blue Test has added an entirely new level of competition. I’m not complaining – they have been more active the last week than the entire month prior. Take the Big Blue Test – test your blood sugar – get active – test again – upload results to BigBlueTest.org.  Some suggestions of how to be active: dance in your cubical, chase squirrels, do lunges while shopping, dust baseboards (ok that’s not fun but when my kids tell me they are bored I make them dust baseboards and used info for BBT), and/or adult pwd – have vigorous sex – come on you know it lowers blood sugar). Click here for more information about Big Blue Test.
  • I have Dexcom G4 envy! Please FDA hurry up and approve for under 17.
  • Hiring contractor to build a bedroom for our dear daughter upstairs using a portion of our game room. It will mean giving up a pool table and wet bar but the benefit of having all my kids sleeping on the same floor as me will be worth it. No more twisted ankles due to navigating dark stairs at night to check blood sugars.
  • Just saw that DSMA Tweetchat will be a free for all on Wednesday Oct 31st. That’s just spooky. Chaos reigns. Hope some of the DOC will be available to chat it up prior to or just after begging door to door for candy. Click here for DSMA webpage to get the Tweetchat link. Chats are every Wednesday at 6pm Pacific time.

30 Days 30 Posts

November is National Blog Posting Month. Starting November 1st I will be taking part in the 30 Day 30 Posts challenge as a Health Activist and Diabetes Awareness Advocate.

NHBPM 2012 (Link to sign up for National Blog Posting Month)

Now I know what your thinking – I have not posted much since July (maybe even June). Clearly I’ve gotten lazy or complacent. This is not true. I have just been overwhelmed – to the point that I could just as easily be blogging about depression and anxiety along with Diabetes. Seems the move has undone me. The thought of a move being my undoing makes me angry and sad. There are so many that suffer much bigger things – yet I would find myself completely unpredictable over the last few months – some days are good others I am ready to load up the van and drive back to Texas.

Things that have kept me sane are:

  • Wednesday evenings spent with 30+ of my closest DOC (Diabetes Online Community) friends. If you haven’t attended a Wednesday night twitter chat with the DOC and you have diabetes or love someone who does please check it out. It is at 6pm ET – you can get the link here (scroll to bottom and click twitter chat) And while you are checking out the DSMA site – be sure to check out the monthly blog carnivals.
  • I have a neighbor who is at least as crazy as me – she has welcomed us with open arms, her son is a great playmate for my boys and honestly she makes me laugh.
  • A texting group I refer to as “The Hive”. It includes 5 of the most wonderful DOC members – they carry on conversations and when I can I jump in too. It is like having a pocket full of friends and they are always with me.
  • Its fall and the leaves are changing – that doesn’t really happen to well in Texas. I love the smell of fallen leaves and crunch beneath my feet.
  • I get to bake with pumpkin for the next few months (yes I know I could always bake with pumpkin but I like to save it for the fall).
I have a dozen blog drafts started with a range of topics – TrialNet, Health Insurance, The need for FDA approval for the Dexcom 4G for under 17, Sleep Deprivation, and Advocating for our cwd in school. Some of the posts I will finish and share. Others I likely wont – I mostly wrote them for myself. Hoping that the NHBPM 2012 will get me writing again – and reading. Surely next week I’ll have time (a phrase I have been saying every week since Aug 20th.). Hope to see my DOC friends participating in NHBPM. Cheers.

 

 

Sunday Seven

  • Dexcom G4 approved (for adults) – so happy for my DOC friends and all pwd/cwd that will be able to get the G4 – it is an amazing Dcare tool. Hoping FDA approves for under 17 so I can beg our insurance company to help us get them for our kids. Currently our insurance will not approve anything ‘off label’ so we need under 17 approval if we want financial help via insurance.
  • Hubby and Middles attended a 3 night/4 day field trip – missed having them around – hated not being able to chaperone myself (dads with sons/ moms with daughters). They both had a blast and I’m thankful Chad had a chance to spend the time with Middles on a school event.
  • During a late night sugar check I walked in to find Sugarboy drinking an imaginary juice – blood sugar was 46 – gave him a real juice – check in 30 min to find a lower sugar – another juice – 30 min later 118. Sad and thankful to find other dmamas on FB (one whose son was eating an air sandwich about the same time sugarboy was enjoying his imaginary juice)
  • While walking to lunch after class a friend of Sweetstuffs thought she (sweetstuff) looked ‘off’. She encouraged Sweetstuff to test her blood sugar. Sweetstuff said she was fine and continued on to lunch (she was gonna test soon anyway). The other student continued to encourage Sweetstuff to check her sugars. Begrudgingly Sweetstuff did as she was asked sooner than she would have for lunch. She was 35. While the friend could have gloated or said “i told you so” she instead fished a fruit roll-up from the Dpack and handed it to Sweetstuff – she also alerted a teacher. First have I said how badly I want the Dexcom G4s for my kids and second have I told you all how blessed we are for all the wonderful friends Sweetstuff has made in our new home.
  • I had an off morning – I texted some wonderful DOC friends in a group message that I hated CA and wanted to go home to TX. I got lots of virtual hugs back. I love “The Hive” – and I am thankful to always have this group of friends in my pocket – always only a text away.
  • First family outing since we officially moved in to our home. We went to a pumpkin patch with a huge corn maze. The boys took off on their own to find their way through the maze (daddy close on their heals) while Sweetstuff and I wandered slowly through the tall corn stalks and discussed how much more fun it might be at night. After navigating the corn maze we picked out pumpkins, enjoyed some fresh corn on the cob and called it a win.
  • Today – best day of the week. Completed our first ever JDRF Walk to Cure Diabetes in CA. It was at the Oakland Zoo. It was very foggy and misting just a bit – perfect walking weather. We were joined by two of Sweetstuff’s friends and another mom. I met Mr. Mike Lawson of the Diabetes Hands Foundation promoting the Big Blue Test. He is as sweet in charming in person as he is in the DOC. Can’t wait for more meet ups.

If I Had A Choice

Yesterday back in Texas (I miss Texas) a close and wonderful friend spoke to many about Autism. She has a son with autism and is his greatest advocate – actually she is an amazing advocate for all those with Autism. She shared a portion of her speech on Facebook. She ended her speech with a favorite quote of hers by Clara Claiborn Park,

“So, then: this experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson that no one studies willingly, the hard, slow lesson of Sophocles and Shakespeare – that one grows by suffering…. If today I were given the choice, to accept the experience with everything it entails, or to refuse the bitter largesse, I would have to stretch out my hands – because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”

What precipitated this type of ending – this: (the last bit of her speech prior to the quote by Clara)

“Just recently, my youngest son asked me, “Mom, do you think Autism is good?” This is the second time that I have been asked this question by someone close to me. The other was a couple of years ago by my niece, who was exactly the same age my son is now. And I always catch my breath, like I’ve been kicked in the stomach. Tears well up in my eyes and I want to yell angrily, “I HATE AUTISM!!!” But, in the moment of searching for diplomatic words, I look at these children, and I see their kind, complimenting eyes. They are really looking at me with admiration – they only see LOVE. They see me lovingly dealing with my son, they see me excitedly talking to others about this terrible disorder and they see me taking on school issues with a passion, so to them, I LOVE AUTISM. Well, I love my son, and I guess it is possible, that may mean that I love Autism, but only because I can’t separate the two.”

Why am I sharing all this about Autism on my blog about Diabetes? Because Vicki (@vicki2cool) has an amazing way with words and an incredible understanding off how having a child with special needs (physical or cognitive) changes everything. I am inspired by her strength and dedication for advocacy. But there is another reason I share these particular words.

Shortly after Sweetstuff was diagnosed with Type 1 (which was 2 years after Sugarboy was dxd) she shared her hatred for Diabetes out loud at dinner.

Sugarboy’s reaction was heartbreaking. He screamed at her “Don’t you say diabetes sucks!”

See Sugarboy has only ever known diabetes. He doesn’t recall a life without diabetes. To him, diabetes was so much a part of who he was that when she said it “sucks” he took it very personal.

He turned to me expectant that I would yell at Sweetstuff, tell her to take it back, tell her she was wrong. I panicked. I didn’t know what to say. Diabetes does suck. But here sitting a foot away was my 5-year-old son so very conflicted. Surely he didn’t like diabetes? Moments passed – felt like time stopped and the walls were closing in on me – each of my three kids still staring at me – waiting. Waiting for what mom would say because they know (think) ‘mom is never wrong’. I seriously considered pretending the comments were never made and just yelling – “desert time – who wants brownies”?

It was likely just seconds that had passed. Sugarboy sat teary eyed picking at his rice. Sweetstuff, also teary eyed stared at me. Middles, likely wanting to get as far away from the Diabetes drama as he could asked to leave the table to use the restroom.

I swallowed hard and said something like (because this was 3 years ago and a day I don’t like remembering) “Diabetes is hard and hopefully is the worst thing that will happen to you in your lives and while it is a part of each of you it is not who you are. Some days diabetes will be harder than others. Some days you will hate diabetes more than anything else and other days it will just be what it is. Diabetes does ‘suck’ but it doesn’t mean that you ‘suck’ – you are stronger than diabetes – both of you.” I may have said more but I know I said these things even if not exactly as written.

No one seemed hungry after that. No one had done homework and I thought briefly about announcing a ‘no homework’ day but thought better of it (picturing repeats of the argument in hopes of another no homework day) thus, I invited them all to get started on homework. The rest of the evening was uneventful as I remember it.

Since that day I have often thought of how my kids are strong. They are fighters – I’m a fighter. Which came first – we were always fighters and therefore can deal with diabetes or did diabetes bring out the warriors in us.

Since diabetes joined our lives I have met some of the most amazing people I’ve ever known. I would not have met them otherwise. Is that enough to not ‘hate’ diabetes – No. I hate diabetes and it will always suck. Would I give diabetes back if I could or would I like Clara says “stretch out my hands…”?

You might be expecting an answer – however I am unable to give one. I do not have diabetes – it is not mine to give back or ask for a do-over. Like so many other things we play the “what if” game with – I am not sure I would be willing to give up all that we have gained, all of who we have become for a do-over – instead I ask that we work towards a cure – join a “former pwd” group. Having had a hand at ending the crazy that is diabetes.

It all comes down to the fact that Diabetes is not who my kids are – it is what they have. And I am thankful that my dear son can now separate the two and recognizes that just because diabetes sucks – it doesn’t mean that he sucks.

Sunday Seven

I’ve been MIA. For the weeks leading up to our big move and since we moved I have been overwhelmed. Packing, moving, driving cross country, unpacking, registering the kids for school, writing and implementing 504s (legal documents that protect my kids with diabetes at school), meeting neighbors, meeting parents, scheduling play-dates for the kids, planing and hosting Sweetstuff’s 13th birthday party, etc. has taken every ounce of my strength and like I said overwhelmed me. I likely wouldn’t be overwhelmed if I didn’t miss Texas and all I left behind so dearly. I’d like to say TX wasn’t better – just different but to be honest it was better in many ways. Still CA is beautiful and all those I have met have been wonderful. I am certain that with time I will love CA as much as I love TX (please make this a true statement because I can’t stay sad forever). An example of how much leaving TX behind has effected me – I cried at the DMV. I had to register my van in CA. This meant getting new license plates. I tried to explain to the clerk I wanted to keep my TX plates after putting the CA plates on. He insisted I could not. Thus I cried. I didn’t start blubbering. Tears just trickled down my face right there at his desk. I took the tools he offered up so that I could remove the TX plates and I headed outside. While removing the back plate I cried outloud. I cried because it was just another step away from TX. Sappy right? Like I said “overwhelmed”.

Everything that has kept me busy getting settled in our new home has also kept me from blogging, reading blogs, and spending time with the DOC. I keep telling myself and others that I will catch up the next week – although the next week keeps me busy. Thus, I have decided that need to take baby steps to get back to where I was with posting, reading and participating. I am certain I didn’t coin the phrase “Sunday Seven”. I likely read it somewhere at sometime but I don’t know where or when – still it will help me get focused. In the future my Sunday Seven won’t have all this commentary before it – just bullets about the week.

 

Sunday Seven

  • Got to meet-up with awesome folks from the DOC while they attended a conference in Palo Alto – kidnapped Kim @textingmypancreas for a sleepover before sending her off on a train on Monday for the airport – she endured my crazy family well. I am so lucky to have met these wonderful DOCers and hope to see them again in the future. 
  • Ate lunch with some other Dmamas that live near me – while eating lunch a gentleman was listening in to our conversations. After we were done he approached us to tell us he as been a pwd with over 30 years and he says it sounds as if we are all “doing it right”.
  • Completed Sweetstuff’s 504 meeting – she is doing great in school and the school is awesome about accommodations and providing all the D support she needs
  • Missed DSMA on wednesday to celebrate Sweetstuff’s 13th birthday – OMG Im the parent of a teenager! 
  • Went looking for kids bedroom furniture so that my boys can share a room and I can move my daughter upstairs (currently in a bedroom downstairs) – its amazing how I can talk myself out of checking a blood sugar in the middle of the night knowing I would have to go downstairs to do so.
  • Bought a trampoline – blood sugars on both kiddos dropped over 70 points with only 30 minutes of jumping – trampolines should have a fast acting carb storage pocket.
  • Cleaned up the house and backyard after hosting Sweetstuff’s sleep under the stars birthday bash. Half the girls were inside sleeping on the floor by 1:30am, Sweetstuff and a couple others made it until 4:30am before coming inside. Her blood sugars played nicely overall considering the amount of candy, pie, and s’mores she ate.