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!