Lancing Glance

Poetry Tuesday - Tuesday 5/13
This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

Poetry, the language of love.  People falling in love write poems on napkins.  Poems are recited at weddings.  Songs are lyrics.  My beautiful teenager suggested an acrostic poem with the word "glucose" for today's blog prompt.  I decided what I really wanted was a poem from my husband.  He's recited and written poetry from the first moment I met him when he wrote Rumi poems on napkins for me at Denny's what seems like ages and ages ago and is in fact around 20 years. He's talented.  (At least in my opinion.).   He has a way with words.  He's a philosopher.  He's funny.  He's sweet.  He's my best friend.  And he was the person I had to call from the ER at Children's hospital first.  He was devastated.  He has diabetes (type 2).  He understands.  He is our rock.  He loves his boy.

  And he wrote this:

Lancing Glance

He puts a hand out, reaching, hungry
it is a hand that's riddled with scars too small to see
never free, the need to bleed in order to feed
louder each time we do this.

I take the hand, and it is warm, or cold
a first hint of how he feels to me
the tangible connection the reading silently 
from his body's subtle book of clues

I run through steps I know I have taken a hundred times.
I walk through them as if for the first time, and I don't keep count.
No, I do count everything, always a measure to be made.
Love is math now too. Math that gives life. Love Math.

In the aftermath, he skips away to eat his body full of sweetness
needing more sweetness, needing to battle sweetness, but always sweetness.
His laughter belies none of this, his laughter denies none of this.
His laughter defies all of this.

All I can see sometimes is a thousand red dots 
on a thousand torn pieces of tissue.
Some of them are shaped like hearts from 
the way I pinch them from the paper towel.

And then that world of mine screaming injustice inside my head
falls utterly silent in the growing smile on a boy's face
as he sees something funny or hears some funny joke and
I know there are a countless billion more red dots inside, and because of them,
because of him and his bold amazing brilliant smile, we are unafraid.

I want... I wish...

I'm participating in a diabetes blogweek.  For more info check out Bitter-sweet http://www.bittersweetdiabetes.com/2014/05/diabetes-blog-week.html
The first prompt:
Change the World - Monday 5/12
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Had a conversation over the weekend with one of my best friends.  We were discussing her daughter who had said she wished she had diabetes 'cause then she wouldn't have to take her showers and breathing treatments for her asthma.  She is Sugar Bear's age.  My friend told her that she shouldn't wish for that, that at least with her asthma she has a chance of outgrowing it.  And her peanut allergy is not the same either.  They are careful so she doesn't have a reaction but it is a "mild" allergy.  Our conversation then went to discussing the Girl Scout troop they are in and how they have a function coming up where everyone will be bringing food.  They have two newer Moms and one of the newbies told the other, her friend, that she should bring that "peanut butter dish".   Even after the troop said there was a peanut allergy this woman said "you should bring it anyway".  My friend was aghast.  I was furious.  Food issues are not a fad!  Gluten free is not a choice for many.  Allergies and food issues can be deadly!  I wish there was a way to raise awareness.  That is my biggest drive.  It seems unless you have some disease or food issue in your immediate circle you are blissfully unaware!  And can come across as unkind and insensitive.

Before Sugar Bear was diagnosed I was very unaware and uneducated on type 1.  My husband had been diagnosed with type 2 and I kept trying to make Sugar Bear's disease the same.  It's not.  It's a completely different monster.  There are days (many) where I wish with my whole heart to go back to blissfully unaware.  Sugar Bear will never outgrow his disease.  It'll always be there.  It'll effect every decision and thought and plans.  It will sit in the back of his brain, like a shadow, a storm cloud.  He'll fight, cause he is brave and strong and stubborn.  But it will never go away without a cure.  It's now part of him, part of us.

Now my awareness is there and I try to work towards information, education, and fundraising.  I want doctors to be more aware so no one has to experience the diagnosis nightmare of a child in the ICU, or DKA coma, or death.  I want pediatricians to make testing part of the well child check and especially checking when there are symptoms of flu present.  I want advances in treatment so one day my son's tiny fingers aren't so calloused and his arms aren't so bruised.  I want a cure.  None of this
will happen just by wishing and wanting so I'm slowly getting involved.  I will be walking at King's Island in less than a month to raise money for JDRF (juvenile diabetes research foundation) and Team Sugar Bear has raised a little over $700.  http://www2.jdrf.org/goto/Sugarbear  My husband, my brave teenager that is needle phobic, and myself are doing TrialNet at the end of this month.  I've joined a few online communities for support, have attended a diabetes conference, and am writing this blog.  Every little bit counts.  After watching that little boy on the floor of the concession stand at the drive-in with over a dozen people around him not knowing what to do (see my blog I. Hope He's Alright) I know I have to do something so that doesn't happen again.  So it's never my son at the mercy of people so uninformed.  One person can make a difference.  I believe that we can make this monster stay in the dark corners if not eventually get rid of it altogether.  I will work towards that goal for the rest of my life for the millions of children and adults who fight the monster that lives inside them but especially for one little boy who is my hero.

Goldilocks

I live in a fairy tale.  One of the classics.  You know the story of the little girl that goes into the bear's house and she goes through one that's too hot, one that's too cold, and one that's just right.  Goldilocks and the three bears.  I feel like getting in range on Sugar Bear's BS is like that fairy tale.  We wait for the tell tale beep of the meter.  Is it high; is it low?  We're in range?  Yay!  Celebrate for a few until the next check and repeat.  This time it's high.  Then low.  Maybe a couple highs in a row and then like a ray of sunshine we'll be in range.  Yesterday we had three in a row.  I don't think we've ever had a day where all his checks were in range but I do know it's been weeks since we've had the majority be right.  I'm just waiting for that day.  Until then, this one is too high, this one is too low, and this one is just right.

I Hope He's Alright

"Mom, that was really scary.  I hope that boy is okay.  I'll keep him in my prayers.  He was in his Mario pajamas and just ready to watch Spider-Man.  Do you think we helped him?" This is part of how our evening went.

We decided to go see Spider-Man at the drive-in tonight.  We'd all been looking forward to it.  The boys went a couple weeks ago sans me since I was sick.  This was my first trip to the drive-in this year and since Sugar Bear's diagnosis.

First was a visit to a neurologist for Goofy Teenager.  I had to leave work early in order to make sure he was there on time.  Diagnosis of post concussion headaches.  Yep, that's right.  No tests planned.  Next appointment in three months unless things get worse.  Some changes in his headache medicine and suggestions on diet and diary keeping, but overall not a bad visit.  Then home. Dinner.  And then out to the drive-in after procuring some special snacks (yup, cookies and beef bites, yum).

Heading out to the car Sugar Bear banged his knee on the side of the van and tears ensued.  Usually when he gets an owie we don't have tears.  So this definitely hurt and it made me think that staying home and an early bedtime might be the better way to go but instead I kissed  and held him and offered to go grab some ice from inside the house.  All better and we head out.

We get to the drive-in at 8:30.  Movie is supposed to start at 9.  I head to the bathroom and goofy teenager goes to the concession stand for a drink.  Hubby and Sugar Bear stay in the van.  I head back and so does goofy teenager.  We hang in the van for a few and the teenager needs to use the restroom.  While he's gone some guy comes to our van and says there is some kid in the bathroom having a seizure.  I'm about to test Sugar Bear so hubby goes to make sure our teenager is okay.  I test.  He's high so as I 'm prepping Sugar Bear's arm to give insulin the Goofy Teenager comes running up saying he needs the glucagon from the kit because some boy is having a diabetic seizure.  I hand it to
him and he runs off.  Within a few short minutes hubby is at the van and says they aren't going to use the glucagon but that the boy has definitely had a seizure and no one knows if he's high or low.  I grab the gel and tabs and have hubby give Sugar bear his shot while I hurriedly head out meeting the teenager coming back.  I tell him to come with me.  We head to the concession area (not the bathroom) and there is a boy (12 years old) on the floor with a blown up plastic glove under his head, a circle of people standing around him and two guys trying to wake him up.  I assess the situation and ask if anyone has a kit.  One woman says she tried to test him but he jerked his hand away.  I ask for the kit.  I talk to the man (his dad, Jeff) and find out the boy's name is Liam, he's 12, newly diagnosed  (within) last two weeks.  I test Liam all the while talking to him but not getting any response.  71.  Not really all that low.  I ask Jeff what Liam's range should be- same as Sugar bear's 80-150.   I ask when was the last time he ate-an hour to an hour and a half ago.  What was his BG?  120.  By this point paramedics are finally showing up and I tell Jeff my thoughts are with him and we head back to our van.  As we get there a woman is getting in her van and telling one of the people in the
neighboring vehicles that she's heading to the hospital for her diabetic son.  This all happened in less than a half an hour.  Twenty minutes.

Then the movie started.

Sugar Bear's BS were fine during the movie and we did the evening Lantus in the dark.  When we got home we had another half hour of raising his BS and testing so we could all go to sleep.

The quotes at the beginning were what my Goofy Teenager said before going to sleep.  Oh, and Spider-Man was good.

 "...what makes life valuable is that it doesn't last forever, what makes it precious is that it ends. I know that now more than ever. And I say it today of all days to remind us that time is luck. So don't waste it living someone else's life, make yours count for something. Fight for what matters to you, no matter what. Because even if you fall short, what better way is there to live?"

We just hope that little boy is okay.

Quick blip

Yesterday not one number was in range and only one was less than 200.  Called the endocrinologist and they said if it doesn't change then we change the ratio down to 7:1.  :( They mentioned that they think the "honeymoon" is over.  This makes me a bit sad.  Four months.  Anyway, we read the Medikidz comic book last night for bed.  Sugar Bear said it was weird and that he already knew all that stuff.  It wasn't what I expected either.  Back to looking for comic books with type 1 that are "fun".

Have a neurology appointment today for Goofy Teenager.  Maybe we can get some direction and help with the headaches.  Fingers crossed.

Hoping to head to the drive in tonight and see Spider-Man.  I can't wait.

The Monster in the Room

It'd been about a month since we did insulin ratio changes.  Yesterday we changed all but one.  He is now 8:1 for all meals and at 13 for Lantus.  Even with the changes he ran high yesterday and of course we're now second guessing.  "Did you eat anything out of the fridge without telling us?"  It's made all of us uncomfortable.  And I don't know how to not worry that he's eating and not telling.

So I had a day yesterday of reliving four months ago in my head.  How do I stay aware?  I don't ever want to miss the signs of something again.  Did you know that with an autoimmune disease like type 1 it increases your risk for having other disorders like Addison's disease, celiac disease and thyroid disorders?  I have to stay on my toes.  I will not miss signs.  I keep telling myself that it's critical just like keeping on top of his diabetes.  I check his feet now.  We daily ask how he's feeling, to the point that he sometimes gets exasperated.  I don't want to miss something so vitally important, again.  I don't like 20/20 hind site.  I don't like what almost happened to my Sugar Bear and I don't like the guilt.  I want to protect him.  I want to make it better.  I want to find a way.

And because of that drive I'm diving into advocacy, fundraising, and research.  I've joined JDRF and will be walking June 7 to raise funds to make Type 1 Type None.  If you'd like to donate to our walk we are Team Sugar Bear. https://secure3.convio.net/jdrf3/site/SPageServer/;jsessionid=569886F06527EC4077CB207AF9F334A2.app332b?pagename=walk_homepage
 I want a cure.  I don't want to give up on that hope even if it means I never get to a place of acceptance with my son's disease.  I will not let this monster control us.

Just let It Go

 Sugar Bear got a haircut.  He still wants it buzzed but I've talked him into waiting just a bit.  I like how he looks with a little bit of bangs.  :) The boys surprised me with the new do when I got home from work on Wednesday.  It was a nice surprise.  Friday I took Sugar bear to the orthodontist to get molds made.  His appointment was at 2 and he was 204.  I just let it go and he went back high before snack time at 2:45.  He didn't come out until 3:30!  We tested again and he was 88!  He got his snack and we headed home.  I was amazed how just a trip to the orthodontist changed his BS.  It seems when he's nervous it drops.  Next appointment isn't until June when he gets his appliance.
Saturday was another day of firsts.  I had to work and couldn't attend one of their best buddy's birthday party.  And the party was a laser tag event!  I was nervous how things would go.  I have Goofy Teenager still dealing with headaches from his concussion and then there is Sugar Bear's diabetes not to mention hubby with all his issues.  I was concerned.  I packed out the kit, gave hubby some suggestions and headed to work.  Got a text as soon as I got to work that hubby had done a 10:1 ratio accidentally instead of the 8:1.  I told him to not worry the party was at 1:30 and a little high blood sugar wouldn't hurt.  At lunch he was 173 and hubby just gave insulin to cover carbs.  He tested right before they went to play laser tag and he was 320!  He panicked and called me because he didn't know what to do. I suggested letting him play the first round and then checking again.  Just let it go!  Hubby didn't get to go back (only those playing are allowed) so Sugar Bear played without the encumbrance of his kit.  At 3 his BS was 131 and I got the text "like I nailed it?"  I smiled.  Then another call, how do we do cake?  We gave a small piece and guesstimated 42 carbs and decided to leave it as well.  He had more running around to do.  They stopped afterwards at work to say hi.  Of course only Goofy teenager showed up at my counter, panicked, and said Sugar Bear had a seizure I started to freak.  What?!?!  Then I see Hubby and Sugar Bear coming through the store.  Goofy Teenager thought it was hilarious.  We have since had a few conversations about how inappropriate and cruel that was.  He said he won't do it again.  They had a blast at the party.  Both have decided their next birthday's will be celebrated there.  Sugar Bear came in second in one of the games and Goofy Teenager came in second in a dance contest.  Overall a very successful event for us! I'm so proud of my boys and my man!