There's Something You Should Know...

My mom and I were talking the other day.  As it often does, the conversation turns to something diabetes related.  

She always asks me how Sweetpea's numbers are.  What's been going on.

And so I was explaining a how her arms seems to be a "sweet spot" for good numbers but we have had some lows... like that 45 on Christmas morning... that come out of nowhere.  

She was expressing her frustration that diabetes doesn't play but the rules.  

They take care of Sweetpea every afternoon.  They know how to bolus for food and how to treat a low... or a high.  But that's it.  And Mom was saying how she realizes that they don't REALLY know how to take care of her.  They know nothing about basal rates and ISF's.  It makes her crazy that doing the same thing one day can cause a completely different result on the next.  "It just doesn't make sense!" she says.

"Mom, You've got to get over that.  Diabetes DOESN'T make sense.  Don't expect it to.... you'll just pull your hair out."

 

"It's so hard to explain to people.  People ask me all the time how Sweetpea is doing.  But they just don't really understand." she said.

Yeah.

"How is she doing?"

Seems like a simple enough question.  

But it's not. 

I never know what to say.  It's such a loaded question....

If you don't LIVE with diabetes 24/7 - you don't know.  And explaining it can be as difficult as nailing jello to a tree.  Or herding cats.  

BUT...  I have to try.  It's my JOB to try.  It's my MISSION to try.  (See also:  If I Have to Explain...)

So....

For all of those on the "outside" - there are a few things I want you to know.

I assume that you already know the basics...You know.... that T1's an autoimmune disease.  It wasn't caused by eating too much sugar.  There is no cure.  She won't grow out of it.  

But there's more...

I want you to know....

that there is no "good" or "bad" kind of diabetes

that diabetes is not a disease where you take your medicine and forget about it

that I think about diabetes all. the.  time.  I'm always thinking about what her current bg is, or what she's eating, or what she's going to eat, or wondering if she's rising or falling, or what's going to happen next.

that diabetes is unpredictable.

that diabetes is always changing.

that calculating insulin doses is extremely complicated - and it's NEVER a+b=c

that diabetes is deadly.  Not in 50 years.  Not if we don't take care of her.  It's deadly NOW.  No matter what we do or how hard we try.  

that calling the hospital does not mean that her diabetes is "bad".  Calling the hospital for help is a normal part of life for us.  The more we learn, the more capable we are to make changes on our own.  But we still call.

that when you have diabetes, there are no small illnesses.  Diabetes makes a simple cold anything but simple.

that wearing a pump does not mean that you're cured or that life is easy

that the pump site and cgm site is inserted with a NEEDLE every 3 days

that having a CGM does not mean that we don't prick her fingers anymore

that we still get up in the night.  Sometimes once.  Often more.  And I've just accepted that that is the way it is.  It is not going to change.

that EVERYTHING affects blood sugar - exercise, illness, excitement, nerves, growth, hormones....

that she really CAN eat ANYTHING she wants

that sometimes although she CAN eat it, she shouldn't until her blood sugar comes down
 
that sugar-free is not always better

that she MUST test her bg first.  Not after a few bites.  Not later.  BEFORE.  

that there is little room for error

that we go to the hospital every 3 months for a checkup

that I know how to handle my child's diabetes better than any nurse or doctor - not that I don't need help and advice... but I know her body and her disease

that being a perfect pancreas is pretty much impossible

that it hurts to be left out

that I don't want your pity.  I don't want you to feel sorry for me - or her.  

that I want you to FEEL for us... and then take that empathy and put it into action to help us find a CURE.

that people who don't care to learn about diabetes because it's "no big deal" make me so angry steam comes out of my ears

that it costs a LOT of money

that we can never leave home without our supplies - it's life and death

that nothing is as easy as before... not holidays, not school, not church, not playdates, NOTHING

that diabetes changes EVERYTHING

that you can't - for a minute - let your guard down or get "lax" in your care or attention to detail 

that things can go from fine to emergency way too quickly

that I am tired

that I often look like hell, can't think straight, sport dark circles under my eyes, don't hear what you're saying... because I live in a parallel world where diabetes hijacks my brain from time to time... and my energy.

that a cavalier attitude about her care and/or expressing to me that I'm too overprotective is not going to go over well.  When YOUR child has diabetes and YOU are the one responsible for her health and well being - then I'll listen to your opinion.  Until then - keep it to yourself.  

that my husband and I rarely have time together... alone.  Date nights are pretty much non-existent.  So, while I will genuinely happy for you that you get to go away for your anniversary or that you got to go out together for dinner and a movie - I'll also be very jealous!

that I don't mind answering your questions.... BUT -

that I really don't want to hear about your Great Aunt Sue who lost lost both of her legs and went blind

that I do NOT want to hear about cinnamon or some tree moss (see Joanne's video) that you think is going to cure her.  If it was that simple do you really think I wouldn't know?

that no, I'm really not glad she "got it so young" and that "she'll never remember life before".  No, that's sad. 

that you have no idea How Lucky You Are

that my medicine cabinet is taller than I am

that it is incredibly painful to hold your child down to give her shots or insert pump or cgm sites

that I've already cried enough tears to fill an ocean

that it does get better with time

that it will always hurt

that I will FIGHT for my child and her health

that I will never let diabetes stop her or hold her back 

that diabetes makes you stronger

that my daughter is the bravest person I know

that while I long for you to "get it" and to understand this crazy new life we live.... I also pray that you are ALWAYS an outsider and that you NEVER experience this first hand.

 So I'm a little late... Ok, a lot late.  Due to strep and the end of the year... and going back to the doctor because she is STILL sick... I missed the "What I What You To Know" post from Diabetes Blog Week.  So here it is!!  I originally wrote this post about a year and a half ago.  I just reread it and it's every bit as true now as it was then.    I'd say that I hope you can relate - but really I hope you can't.  However, if you are already living this life then I do hope it at least makes you feel understood! 

 

Good Luck, Charlie!

I originally wrote this post a year ago.  Today, it just as true!  Except that today is the 101st racing of the Indianapolis 500.  And as I write this, Charlie is holding steady around 5th place!  GO, Charlie, GO!


When you hear the phrase "Good Luck, Charlie" around our house, it's always been in reference to the Disney show by that name that Sweetpea adores!

Except for today...

Today we are saying "GOOD LUCK, CHARLIE!" to a different person for a very different reason.

Today is the 100th racing of the Indianapolis 500.

I've grown up watching this race.  Tradition, in my family, was picking drivers with my parents to see who could pick the winner.  We still do that.  Sweetpea picks, too (and somehow, always makes the best picks).

This year, there was one special driver set aside for HER to pick.  No one else was allowed to choose Charlie Kimball.

Because Charlie has Type 1 diabetes.  And Charlie wears a Dexcom.  (Read his story HERE)

Kimball drives the No. 83 car for Novo Nordisk Chip Ganassi Racing in the IZOD IndyCar Series and is the first licensed driver with diabetes in the history of INDYCAR.

You can find out more about Charlie on his website: www.charliekimball.com

You can also read some articles and watch some video of Charlie  HERE and HERE.

I'll leave you today with a little letter...

Charlie,
 We are so proud of you!  While we have no idea what it really takes to race at the highest level of racing, we do know a little of what it takes to manage diabetes.  Doing both... Wow.  We want to say THANK YOU.  Thank you for not backing down, for going for your dreams, and for not letting diabetes hold you back.  You are wonderful role model for our daughter - who we hope will also follow her dreams, in spite of having diabetes.  It is important for her to see you - someone LIVING with diabetes.  Someone else wearing a "Dexie".  We also want to say GOOD LUCK!  We will be cheering for you!

 

Q and A

Yesterday, I wrote about a great new book called Use Your Words: A Writing Guide for Mothers by Kate Hopper.  

I feel very strongly that anyone can write.  And that we ALL have stories worth telling.  We all have stories that need to be told.

I really want to encourage you to write.  It doesn't matter if it's a blog or a book or an email or a journal entry that no one but you sees.  I find writing to be very cathartic.  You might, too.

When I started this blog, it was aimed at family and friends.  I couldn't keep up with the "How are you doing?".  I could not explain about Type 1 one more time.  So I created a blog in hopes that I could write it once and people could just read it.  Because I wanted them to know.  I wanted to tell them.  But I was just soooo.... tired.  Overwhelmed.  Emotional.

I never thought anyone else would read it.

It still shocks me to see comments from you, dear readers!  I love hearing your stories!  And I always try to write back - sometimes it just takes me awhile!  (As soon as school is out, I'm hitting the inbox!)  Your words make me cry and laugh and  truly touch my heart.

I never imagined anyone would find solace in my words.  I'm glad that you do.  It helps ME to tell our story.  The REAL story.  The TRUTH about raising a child with T1.  Or at least, MY truth.  So I am thrilled that it helps you, too!

I think that Kate understands this... hence the books she has written!

I wanted to share with you a Q and A with Kate so you can learn a little more about her, this book, and writing in general.  She touches on some key things...  writing the "hard stuff" (which is very much what we D bloggers do!), finding a balance, and your child's privacy. 

 1) What inspired you to write this book?

This book began with a writing class that I started teaching in 2006 for women interested in writing
about their experiences as mothers. I wanted to create a safe place where motherhood literature
would be critiqued, nurtured, and viewed as art. And over the last six years of teaching this class I
have read so many amazing memoirs and essays. When women write the truth of their mothering
experiences, it can be life-changing, not only for themselves, but for their readers. I wanted to
extend the reach of my classes through Use Your Words.

2) What do you hope readers will take away from this book?

I hope that readers will begin this book with an interest in writing, and finish it having discovered
the power of writing their lives and dedicated to continuing the important work of writing about
motherhood. I hope they will see the varied ways one can write about their children and the
transformations inherent in motherhood, and have a better sense of how to craft the stories that nag
at them, that beg to be written.

3) What are some of the things you’ve learned through teaching mother writers over the
years? How have their stories changed your mothering?

I’m honored that I’ve have been let into my students’ lives through their writing. To be able to walk
in someone else’s shoes, whether it’s for a moment or an hour or a few days, is an incredible gift.
I’m grateful to have been able to learn from my students as well. So many of them deal with
parenting challenges with such incredible grace, and I’m honored to call them my role-models I think reading and listening to the heartbreaking stories has also made me a more grateful mother
and person. Their stories live with me—I can’t forget them—which makes me grateful for my two
healthy daughters.
4) In your book you talk about writing the hard stuff and discuss how writing can be
therapeutic and still be art. How have you seen this therapeutic process work with your
students?

I believe that you can experience a transformation—a therapeutic transformation—in the writing
process and still end up with art. A number of my students have lost children or have been through
incredible challenges with their children, yet they come to my class and create gorgeous writing.
These students have described how the process of writing helped them come to terms with their
heartbreak or accept it in a different way.

5) How has motherhood affected your writing?

I really believe that motherhood made me a writer. Before I became a mother I wasted so much
time waiting for inspiration and generally procrastinating. But when Stella was born prematurely and
I had to withdraw from graduate school and stay home with her for a very long and lonely winter, I
became desperate for words. When Stella was five months old, I went to the coffee shop by our
house one evening and pulled out paper and a pen. But instead of returning to the half-finished
pieces I had been writing before Stella’s birth, I started to write about the single most life-changing
experience of my life: becoming a mother.
Now, there is no time to procrastinate or wait for inspiration. If I have an hour, I write for an hour.
So motherhood definitely has made me a more efficient and more dedicated writer.
But writing also makes me a better mother. When there is dedicated time each week for me to be
creative, I know I’m more patient. It feeds me in a different way than mothering. Writing also helps
slow me down, notice the details that we so often take for granted. I have two small children, so
things are changing really fast, and writing about some of what is happening in my life allows me to
gain perspective, to figure out what I think about where I’m at right now.

6) How do you balance motherhood and writing?

It’s a balancing act for sure. My writing time is very limited, and my children are small and need lots
of attention, as children do. We recently added a dog to the mix, as well, and she has gobbled up
some of my morning writing time. For me it’s not so much motherhood that keeps me from writing;
it’s full-time work. I used to have at least a few hours a week when I could go to the coffee shop and
work on my own writing before I moved on to teaching prep. Now I’m lucky to get an hour a week.
So I’m trying to practice what I tell my students: be patient and flexible. I know I’ll figure out a
schedule that works before too long!

7) Why does writing about motherhood and women’s lives matter?

Motherhood is part of the human experience, so how can it not matter? I think motherhood as a
subject lends itself to memoir. It is a time of transition and sometimes a period of intense identity
struggle: Who am I if I spend all day shirtless, trying to nurse a colicky baby? What happened to my
former life, my former self? How do I balance my own needs with those of my family?
I am drawn to all kinds of motherhood memoirs because I am interested in the different ways that
women process the challenges and joys of motherhood, and how they write about life in general
through their mother eyes. I love what Debra Gwartney, author of Live Through This: A Mother’s
Memoir of Runaway Daughters and Reclaimed Love, says about motherhood memoir: “A well-written
book [about motherhood] is going to say something profound about the human condition, and we
need to hear the voices of women who can express the plight we’re all in as humans.” I couldn’t
agree more.

8) What would you tell mothers who are interested in beginning to write? Where should
they begin?

Begin with a detail. Don’t worry about what the real story or how long a piece is going to be. Just
focus in on a time in your child’s life or in your life as a mother that you don’t want to forget. Make
a list of sensory details from that time, then pick one detail and write for 10-15 minutes. Then pick
another. Figure out a realistic time for you to write each week, and try to keep that time sacred.
Leave the house if you can, so you’re not distracted by all the things that need attention at home.
And communicate with your family members about why it’s important that you have that time to
write so they can help you stick to your schedule.

9) You encourage mothers to write about their lives and their children’s lives, but in one of
the final chapters, you discuss the ethics of writing about your children. How do you
reconcile these two things: the need to write with the need to protect your children’s
privacy?

It’s a very tricky issue to write about one’s children, and I think your decision changes as your
children grow and become their own independent people. In the book I quote Annie Dillard, who
said that as a writer you never want to kick around “people who don’t have access to a printing
press.” This is true when we write about anyone, but it’s especially true when we are writing about
our children, who have no control over what we say about them. They depend on us to protect
them.
Talking openly about your writing and why it’s important to you helps your children (and everyone
else) understand how critical it is for you to be able to express yourself through words. But I do
think that at some point our children’s stories are not ours to tell.

(** I agree with this!  Right now, this is my story to tell.  It's OUR story.  But one day it will be HER story.  And this blog will be forced to change as she grows and gain independence.)

10) You discuss the need to make writing a priority in your life. How did you do this in your
own life? What advice would you give to other mother writers who are struggling with
this?

One of the things I suggested in the book is to figure out when and how writing can fit into your
life, and then make sure your family understands why it’s important for you to write. I think it’s hard
for women—especially mothers—to carve out the time we need to ourselves, whether it’s time to go
for a run, meet a friend at the coffee shop, or write. But I know I am a much happier and more
grounded Kate when I have had time during the week to put words on the page I’m in a place right now where I am not generating much new material. But I’m still doing the work
of a writer as I launch and promote this book, so I’m okay with that right now. But I know that
soon I’ll have to figure out a way to eek out an extra hour or two a week to continue with my new
writing project.

11) What are you working on now?

The memoir I wrote about my older daughter’s premature birth is being circulated among interested
editors, so that narrative is still percolating in my mind, but I also started a novel last fall. It’s almost
silly to say that because the writing is going so slowly. I began working full time on top of teaching
and family, so I have very little writing time right now. But it seems that the important thing isn’t
how many pages I crank out each week but rather the fact that I am producing something—
anything. The main character is there, in the back of my mind. She pops in to say hello now and
again, or I see something as I’m moving through my day, and I think, oh, she would think this or
that if she were here. That’s enough to keep me going.

  

Use Your Words!!

Today I have the privilege of sharing with you a wonderful new book about something that is very near and dear to my heart.

This book is NOT about diabetes. 

It's about writing.

I've always enjoyed writing creatively.  But after college writing classes, I just stopped.  I was busy.  A new job.  A new life.  Getting married.  Having a child. 

And then my beautiful little girl was diagnosed with Type 1 diabetes. 

And suddenly I just started writing.

It was almost like there were too many emotions inside me and they just tumbled out in the form of words.

So when I was asked to be a part of the Virtual Book Tour for Use Your Words:  A Writing Guide for Mothers by Kate Hopper I just could NOT pass up the opportunity.

Kate Hopper teaches writing online and at The Loft Literary Center in Minneapolis, where she lives with her husband and two daughters. Kate holds an MFA in creative writing from the University of Minnesota and has been the recipient of a Fulbright Scholarship, a Minnesota State Arts Board Grant, and a Sustainable Arts Grant. Her writing has appeared in a number of journals, including Brevity, Literary Mama, and The New York Times online. She is an editor at Literary Mama. 

Kate says, "I write about motherhood: the dark side, the humorous side, the places where these two intersect. I love finding good writing that combats the myths of motherhood still perpetuated in our society and speaks honestly about what it’s really like to be a mother."  Kate has also written a memoir called Small Continents, which is about learning to live with uncertainty in the wake of her daughter’s premature birth.

 Folks, I want to tell you something.  

After Sweet's diagnosis, writing SAVED me.  And it continues to save me almost daily.

I was so... sad, mad, overwhelmed, frustrated...  You know all the emotions right after dx.  But no one really understood.  My friends tried... but it's not the same.  And my husband was dealing with it all, too.

Being able to go to the computer and just WRITE truly saved my sanity.  

And then... I found YOU.  All of you out there who GET ME.  Who GET IT.  And it was just what I needed.

You know what else?  When something happens - bad or good - one of the first things I think about is telling all of you.  We are all connected in a way that is hard to explain.  My story is yours and yours is mine.  

And our stories need to be told.  

Our stories need to be heard.  

And that is why I LOVE this book!

Kate gives easy to follow, step by step instructions for how to begin writing.  Even if you think it sounds like a daunting task, Kate shows you what to do in a way that makes you know that you CAN do this!

I'm not a professional writer.  I'm a Mom who pours her heart out through the computer.  

And you can be, too.

Here's your chance:  

To WIN A COPY OF THIS BOOK (and more!)....

Below is a prompt from Kate.  Use it to write about your child in 600 words or less.  Your piece is due to me at theprincessandthepump@gmail.com by midnight on May 28.  The winner from The Princess and The Pump will win her very own copy of  Use Your Words AND have her post featured on this blog!
THEN, The winner goes on to compete with all the book tour entries to be judged by Kate herself for a chance to win an hour long phone consultation with Kate and to be published in the online magazine; Literary Mama.

Pretty cool, huh?

Here's your prompt:

 Sensory Details as a Way to Begin 
 
Think about the time when your child (or one of your children) was born, when she first arrived home, or even before she was born. If you adopted your child, maybe you want to focus on the first time you saw her photo. Is there a certain smell, sound, taste, texture, or picture that comes to mind? Start with that. Write it down. What other concrete details do you remember? Let your mind wander. Jump from image to image. Try to use as many sensory, concrete details as you can. Don’t pick up your pen—just keep moving it across the paper—and don’t worry about grammar or spelling.
If those early days and months feel too far removed, choose another period in your child’s life that seemed particularly vivid to you, and begin writing details from that time.

 Ok, now I'm going to tweak that a little!  Instead of writing about when your child was BORN - write about when your child was diagnosed.  After all, this IS a diabetes blog!!

Now... get writing! 

And stay tuned... I will share with you a Q and A with Kate tomorrow!  Since I tend to write mostly about the hard stuff - I really enjoyed her chapter in the book called, Writing The Hard Stuff!  Come back to hear what she has to say about that!


 

Snapshots of a Hero

Diabetes Blog Week: Day 6 AND 7

Well, I seem to have fallen behind.  What with the sick kid and life in general... that seems to be a common theme around here lately!  But you know what?  I'm not sorry.  It means that I've been out LIVING life with my family.  With diabetes in tow.  And isn't that what it's really about?

So I decided to combine day 6 and 7.  I'm going to show you some snapshots of my diabetes hero.

She's 6 years old.

She's been living with diabetes for over 3 years.

We are weeks away from the point where she will have lived WITH diabetes longer than she has lived without it.

At six.

That breaks my heart.

But she's tough.  She's a fighter.  She never complains about not feeling well.  Nothing much keeps her down.

She doesn't remember what it's like to live without diabetes.  So she just lives WITH it and lives life to the fullest.

Yes, she wishes she didn't have it.  So do I.  I wish it was me.  Maybe more than I wish for a cure, I wish it was me.  I wish it had been me and not her.

But that little girl is showing us all what it means to be strong and tough.  What it means to just keep swimming.  That with faith, all things are possible.

It's a part of her life in a way I will never fully comprehend. 

One day I will turn it over to her.  I will have to tell her that I did the best I could.  I made decisions based on what I hoped would best for her.   That I've given her the skills she needs - and now it's her turn.  It's her life. 

That scares me. 

And I dread that day - or more accurately time because I'm sure it will be a process.  Not because I don't think she can handle it.  But because I don't want her to have to handle it. 

I know what it takes to manage diabetes.  From the outside, yes.

It's hard.  And that could be the understatement of the year. 

I wish she could just live her life without that disease constantly demanding attention.  I wish I could just handle it for her forever.

But she is my hero because I know, without a doubt, even at six years old... that she's got this.

She's going to be fine.

Sure, she may rebel a little.  She may go through times when she just OVER it.  Who doesn't?

But I know that she is going to make it through.  Diabetes won't hold her back. 

It didn't at three.
It didn't at four.
It didn't at five.
It isn't at six.

And it won't at 26.
or 36.
or 46.
or 56.
or 106.

This little girl is crazy incredible folks.  She's funny and smart and independent.  She's stubborn and determined.  She's athletic and creative and a total goofball.  She's ham.  She kind and caring.  She's resilient.  She's tough as nails.  Don't that sweet face fool you!  She's strong and courageous.  She's incredible.

She's my hero.

And I am so lucky to be her Mama.

 

A Techno Dream: Diabetes Blog Week Day 4

Today's post is going to be short and sweet.

Sweets went home from school throwing up yesterday.  I HATED that I could not go with her.  But I'm out of days.  So Mimi and Gaga came to the rescue and Daddy rushed home.  A trip to the doctor revealed that she has strep.

Yes, she is sick again.  (I KNOW, right?!?)

Large ketones, vomiting, fever, and a lowish bg.  A perfect Molotov cocktail of diabetes management.

Daddy and the Grandparents rocked it, though.  (I'm such a lucky girl!)  By the time I got home from school she was resting on the couch (where she stayed all evening... this is how I know she's really sick!).  Daddy had scored some Zofran at the doctor which had calmed her tummy so at least the meds were able to stay down.

Anyway, she's doing better today.  Mommy is tired.  What else is new.

So today I'm supposed to write about my dream diabetes device.

Hmmmm....

I'm having a creative block!  Most of what I can think of immediately already exists!!  Which makes me feel super grateful for living in the time that we do!

I want a pump that is super small and super slim.
I want a pump that you don't feel when you insert it.
I want it to be connected to a cgm.
And I don't want two sites.  Just one.
I want the cgm to predict highs and lows and alert accordingly.
I want it to be accurate.
I want the cgm to talk to the pump and take me out of the equation.  I want the cgm to say, "Oh Mr. Pump... give us some insulin!  She's eating!"  And "Hey - Pump!  Turn it off.  She's gonna be low if  you keep cranking out the drugs."
I want a meter that uses a tiny drop of blood.
I want a meter that never errors.
I want the meter to send me the blood sugar numbers so I know what is going on.
And while we're at it, let's just have the pump send me the insulin amounts and cgm readings too.  Maybe it could be an app where I can get real time view of what is going on in her body.
I want the meter to talk to the pump and cgm.
Actually.... who needs a meter?  Let's just get the pump and cgm so accurate you don't need a meter.
I want a device that will keep her at a nice 100 steady all night long.  And let me sleep.  And let her sleep, too.

You know what I really want?

I really want a magic wand.

One flick of that wand would magically make her pancreas start working again.  Like it's supposed to.  All the time.

A wand that would leave us with the lessons we've learned and all the incredible people we've met... leave us with all the good....

But would just CURE HER.

Here's the thing.

I love technology.  I love gadgets.  LOVE.

I love all the cool stuff that is out and coming out to help us manage diabetes and keep ourselves and our loved ones safe and healthy.  I am thankful for every last one of them!

But I don't want another gadget.

I want a cure.


 

Yes and No: Diabetes Blog Week Day 3

Today's Diabetes Blog Week prompt is to write about something that you could improve or do better concerning diabetes.

I'd have to say that I need to get better at saying YES.  And at saying NO.

I need to learn how to say YES when someone asks if there is anything they can do to help. 

I am horrible at accepting help. 

My immediate response is to answer "Oh, No.  That's ok.  I've got this."

And I really do mostly have it under control.  But having a little help from other sure would make life a little easier. 

I feel guilty accepting help. 

I always feel like I'm putting the other person out, that there are many people more needy than I, that it's my responsibility, that I don't want to burden any one else....

I hate asking for help. I just won't. 

And I really struggle with asking people to do things to accommodate my T1 child. 

I hate having to say, "Can you just take a look at Dex every now and then and see what she is?"  or "She needs to go to the clinic 10 minutes before lunch to get her bg tested and get insulin."  I do it - because it's a matter of safety for my child.  But it makes me uncomfortable.

I read an article not too long ago about parents of special needs children.  And how the best thing someone can do is to NOT ASK what they can do... but just do.  Because we so often will say we are fine and we have it all together --- when we really do not! 

I know I have to remind myself that people LIKE to help out.  And saying YES actually makes them feel good!  So I need to do that more often.

I also need to work on saying NO.

I overextend.  I do too much.  I'm a perfectionist.  I get involved in way too much.  I have too much going on.  I never slow down. 

Truth be told - I should have said NO to D Blog Week!  Because it's the end of the school year and there are a million things going on that need my attention.  And now Sweets is sick and throwing up and has ketones and I have no sick days left and on and on and on.

I LIKE to do.  I LIKE to help.  I LIKE to be a part of things.

But I have totally burned myself out. 

I've taken a step back from having a leadership role in our local JDRF chapter.  I'm still a board member - but I'm not really in charge of anything anymore.  It KILLED me to say NO.  But I had to.  I need time for me and my family apart from diabetes.

That's the same reason I have not been blogging as much.  Sometimes I just have to let it go until tomorrow instead of staying up all night to get stuff done.

I'm cutting myself some slack here.  My world DID get totally turned upside down and I'm finally working on creating some much needed balance there.  It's time.  I'm doing it.  It just takes a while to figure out the perfect balance. 

And part of that is saying NO. 

It fits doesn't it?  The perfect polar opposites.  I need to say YES and I need to say NO.  At the same time.

Sounds about right when you're talking diabetes!

 

Where I Shine: Day 2 #DBlogWeek

Today is Day 2 of Diabetes Blog Week 2012.  Today's topic is to blog about something that you do well.

Hmmm....   That's a tough one!  These prompts are really stumping me! 

I feel like there is room for improvement in all areas of our diabetes routine.  I'd like to get better at tweaking.  I'd like to say that my SWAGing is spot on at all times. I wish I could say that I had a handle on the trends and the reasons behind them.  I'd like to say that I have exercise figured out.  How much to give to treat various lows.

But I can't say that.  I don't have it down pat.  I don't.  Everything changes so quickly for her.  I tweak and it works for a day or so and then it changes.  What works for lows for a few weeks stops working.  Sometimes my SWAGing sucks. 

But do you know what I'm REALLY good at?

I'm really good at pretending it doesn't bother me.  I'm really good at making it all look easy.

Most people that I know and work with have no idea what my life is like. 

I mean, if they read the blog or if they listened when I get on my soapbox every year during fundraising...  But even if they DO listen - they don't get it.  They don't know.  They don't see it.

I come into work each morning dressed (usually) professionally.  Sweets is with me and she is all matchy matchy and complete with coordinating hair bows - half of which I make myself.  No one can tell that I've been up all night chasing lows or treating highs.  They can't tell that I was counting carbs in the car and bolusing while driving. 

They see a happy little girl.  A healthy little girl.  A little girl full of laughter and smiles.

They don't see the tears she cries when it's time to change her Dex sensor.  They see me having to hold her down when she needs an arm draw for blood work.  They don't see the spots on her fingertips or the bruises all over her body from needles. 

They don't see the angry little girl that I see when her blood sugar is too high.  They don't see the blank stare I get when she's low.  The look that tells me that she's not really there.

They see a little athlete.  They see a swimmer and a gymnast and tennis player.

I see a little one who might be going low but because she does not want to wear her Dexcom and answer questions about what it is... and because she can't feel her lows... They don't see that I'm not just casually observing.  They don't see that I'm watching every move.  Looking for her to off balance.  To fall.  To need me.

They see a child eating what everyone else is eating.

They don't see me counting carbs in my head.  They don't see my factoring in her activity level, future activity level, past activity level, illness, stress, and excitement.  They don't see me counting out individual goldfish crackers.  Or grapes.  Or m&m's. 

They might see her pod or her Dexcom.  They don't see the needles.  They don't see the supply cabinet that is taller than I am.  They don't see the blood.  They don't see the gushers and ruined towels or clothing from sites that won't stop bleeding.  They don't see the little blood drops from sloppy night time checks.  They don't see the bill and just how much it all costs to keep your child alive.

They see what looks like an ordinary family.

They don't see everything that goes through the head of a D parent.  All the factors to consider... the current basal rates, carb ratio, the way certain food affects the child or how combinations affect blood sugar, activity level, excitement, hormones, illness, stress, weather, when we need to order supplies, if we have enough supplies to make to the end of the month, what the trending arrows show, what happened in this situation yesterday or last week, what this number is doing to his or her body, how many carbs are needed to treat a low and what kind works best for that particular situation, is the glucagon good or has it expired, what will I do if he or she doesn't come up - or come down, are there ketones, how much, is the site good, is the cannula kinked.... I could go on!

No one sees that.

And I think I do a good job acting "normal".  I think I do a good job handling it so that no one really knows what it's like.

And I think I do a good job pretending like it doesn't bother me.

I appear calm.  Cool.  Collected.

Apple juice and cake?  Pizza and ice cream?  Sure, no problem...
Handfuls of treats being eaten by other kids?  Easy peasy...
Invitations to sleepovers... Great!
Watching friends go on date nights or weekends away?  Oh!  Good for you!
Your kid is hungry and just eats?  How nice....
 You get to sleep through the night?  Lucky you!
Oh, your kid woke you up because of the storm??  Gee, that's too bad.
Your little one has a cold?  Is throwing up?  How terrible.

See?  I got it down.

What they don't see is that in the back of my head, I'm sitting here writing this post!!!  And that I really want to scream that
At least a stomach bug doesn't land you in the ER!
At least you don't wake up every single night to check blood sugar!
Do you know how nice it would be to count every single carb she eats??
Or how I wish I could just get a sitter?  Or let her spend the night with a friend?
Do you have any idea what that food is going to do to her blood sugar???

This is where I let it out.  This is where I vent.

The rest of the world doesn't know. 

Because I put on the mask and say it's ok. 
Because maybe if I say it enough times I'll start believing it myself.

Because I owe it to my daughter to give her the best, more unrestricted, most normal life possible. 
And I'll do whatever it takes to achieve that for her.



 

Find a Friend... Diabetes Blog Week

Today is the first day of Diabetes Blog Week 2012!

Diabetes Blog Week was the brain child of Karen over at Bittersweet! To get to know Karen or to find out more about D Blog Week, click HERE!

 Today's topic is "Find a Friend".  I'm supposed to introduce you to a diabetes blogger than you might not know.

Wow.  That is a HARD task! 

So, I'm taking the easy way out! I simply can not pick just ONE blog that I want to share with you! I have decided to go a different direction instead.

I want to introduce you to Pinterest!

Have you tried Pinterest??  If not, you MUST.  I am addicted to Pinterest.  I LOVE it! 

Now, you may be thinking that Pinterest does not have much to do with diabetes.  But that's where you would be wrong! 

There are a million different diabetes pins on Pinterest.  You can find recipes, management tools, advice, inspiration, humor, advocacy...  the list is endless!

Here are a few of my favorites!

 Awesome pic... we all know what leaves those marks.

 This is a chart and link to different types of insulin.

 Yup - totally understood!

 This linked to a list of carb counts for different kinds of fruit.

 Awesome video by Joann - to make me laugh when I need it.

  Really feeling this one right now...

This is my new favorite because it just really sums up how I am feeling about life right now!

To actually be able to see where these awesome pics lead.... you'll have to go to my Diabetes Board on Pinterest and click the pics.  To get there, click HERE.

So, go on over and check it out!  It's really easy!  You can ask for a invitation and you'll get one in your email  within a day.  Then you'll be pinning away before you know it!