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Sunday, August 25, 2013

One more day!  One more day and Sweets starts second grade!

Holy cow!  Where did the time go?!?

She's ready.  And so am I.

Last week we took all her supplies to school.  She got to pick her new bin in the clinic to keep all her diabetes supplies.  She got to visit her classroom and meet her new teacher!  We got the opportunity to talk with her new teacher about diabetes and go over her care plan with the nurse.

I'm feeling much better!

I think we've got this!

Will I still worry?  Of course I will!  I'm her MOM.  That's my JOB!

But I'm mostly really excited for her to start a new year and learn new things and just be a normal kid.  I don't take for granted that those things are a big deal and we are blessed she has that opportunity!

So... that's where I am and what I'm doing!  Right now our whole world is focused on "Back To School" for Sweets AND for me!

I found this awesome little thing called a "Currently" on a teacher blog, Oh Boy, Fourth Grade!  I thought it was super cool so I wanted to join in her linky and make my own!  Here it is...

I think it's pretty self explanatory...  But I can add more... (Of course!)

I'm also loving that I am now "officially" a JDRF mentor (although I suppose I've been practicing without a license for a while) and I'm excited about getting that program up and running in our area.  

I'm thinking that I am sure I have gotten a few grey hairs over this back to school adventure this year.  And I'm not just talking about Sweets.  My classroom has had a few issues and I'm about to lose my mind over it!  I like everything to be perfect!    

I'm also thinking that having a fall JDRF walk is cruel for a teacher.  I am so wrapped up in school that I haven't yet sent out our walk letters.  And I have work to do on our fundraiser.  More on the later...  But time is getting away from me.  

Not only do I need more time... I need my D Mama's (and Papa's and PWD's) to tell me it's going to be okay.  I need to keep seeing your back to school pics on Facebook and hearing your success stories.  I need to know I'm not alone!  

The B2s is "Back 2 School".  Our top three must haves are Juicy Juice (people think we have some kind of problem with the amount of that stuff we buy...), Information sheets that I've been working on to give to her teacher and the special area teachers who will be working with her (see link in school stuff tab above for an idea of what I'm talking about), and tissues in case I get weepy and my phone in case there is a problem.  Or for when J lets me know what is going on which he has orders to do!

If you think it Currently is as cool as I do, head on over and check it out!  You can make your own, too!  She puts directions in her post.  The teacher bloggy world is different from the DOC but Hey - it still works for us!

And I want to know!  What's YOUR currently?

Here's wishing you a wonderful "Back to School" experience!  Let's all just take a deep breath, eat some chocolate and get through this together!


Walking the Line, Rainbows, and Pain: Back to School with T1D

Tuesday, August 20, 2013

I often feel like life with diabetes is like walking the line.

We don't want to be blood sugar to be too tightly controlled yet we don't want it uncontrolled.
We want people to understand this is a life threatening disease and yet not treat our children any different.
We don't want our management expectations to be too strict nor be too lax.
We want our kids to understand the seriousness of the disease and not let it hold them back.
We want people to know people with T1 can do anything and yet we want them to fund research for a cure.

These are just a few examples of the line we walk daily.

Some days, life with T1D rolls off my back like water off a duck.

Today is not one of those days.

Today I feel more like a porcupine.

I'm getting ready to send Sweets back to school.  Back to School with T1D.

I feel sick.

And it makes little sense.  Because I truly believe that she will be taken care of.  Our nurse is coming back and I trust that she will continue to do a great job with Sweets.  I believe that her teacher is going to do a great job as well.  Unlike last year, we're going into this with experience.  I SHOULD be feeling good.

The thing is - it doesn't make sense.  Emotion rarely does.

I'm feeling uptight.  Worried.  Nervous.  Overwhelmed.

And angry.

So here's the line.

I have always felt that it's important to acknowledge how you feel.  To accept the good and the bad.  Because I believe it's the only way through this.  The only way to stay sane and healthy and moving forward.

I am so grateful for our wonderful school nurses and teachers.  I am thankful that we have supplies like the Omnipod and Dexcom and even a blood sugar meter and lancet device.  I do not take for granted that she is alive and healthy and able to chase her dreams.


I'm angry, too.

I'm angry that I have to make information sheets to give to school personnel so that they know how to take care of my child.   I'm angry that our school shopping involves prescriptions and trips to the pharmacy.  I'm angry that a new school year also means a new plan that involves time out of class to keep her healthy and safe.  I'm angry that a new class means new kids who may or may not be accepting of her different needs.  I'm angry that I have to explain that diabetes can affect her ability to learn.  I'm angry that our back to school list involves orders from her doctor.

I'm jealous of those people who can run to Target and pick up their child's school supplies - getting what's on the list - and be done.  How nice would it be if getting the right kind of binder was our biggest worry?  How nice would it be if we could send her off to school without a care (or at least a worry about her having a severe low and no one knowing what to do)?  How nice would it be if plans didn't need to be made around lunch, recess, gym class, and special treats?

That's a life we will never know.


So what are we to do?  How do we keep those feelings from overwhelming us?

Well, for me.... I let myself have a little pity party.  I let myself yell or punch things.  I exercise it out.  I sleep it out.  I blog it out.

And then I move on.  I remind myself of how blessed I am.  And how lucky we are.  And I try to focus on that.

(I think I need to write this on my forehead!)

Sometimes... like NOW at the start of the school year... I may have to remind myself every day.

That's ok.

As long as I don't let that anger and sadness get the best of me...

And as long as I remember that you can't have a rainbow without a little rain!


For Anyone Whose School Supplies Involve a Trip to the Pharmacy

Monday, August 12, 2013

** Tonight at 9 pm EST Wendy Rose and I will be LIVE on the air with Lorraine and Bennett for DSMA Rents Live!  We will be discussing Children's Congress and more! Check it out HERE!**

Fourteen Days.

In fourteen days Sweets is starting second grade.

She's ready to go back.  She's bored.  She needs something to do.  And in that respect, I'm ready for her to go.

BUT... When you are the parent of a child with diabetes, back to school often strikes fear in your heart.  

Because it's just not that simple for us.

We went and bought the supplies on Sweet's list.  She had fun picking out pencils and binders and stuff.  But I couldn't help thinking... what would it be like if that was all it took to get her ready to back to school?  How easy would it be if our biggest concern was the getting the right color folder?

That's not our world, though.  Is it?

We have a very different kind of supply list for our kids.

We pack supply boxes full of test strips and meters and alcohol wipes and glucose tabs and syringes and insulin and extra sites and extra pods and adhesive remover and lancets and teagaderm and juice boxes.

Just the thought of all the forms and plans and teaching and meetings and uncertainty and crazy numbers and the oodles and oodles of supplies.... it makes me sick to my stomach.  

I think it's the uncertainty that a new year brings.  We have to train a new teacher.  Will she be understanding?  Will she take T1 seriously?  Will she help Sweets reach her potential while not letting Diabetes hold her back?  Will she keep her safe?

My guess is yes.  I have confidence in that.  I truly do.  

But I think it's the putting yourself out there that is hard.  I HATE having to ask for special treatment.  Like a meeting before school starts to go over diabetes and our plan.  I do it because my daughter needs me to do it.  But how I wish I could just meet the teacher at "Meet the Teacher" night like everyone else.  

Sometimes we get a bad rap.  Us D Mamas and Papas.  

People call us overprotective.  Demanding.  Helicopter Parents.  Difficult.  Over the Top.  High Maintenance.  Picky.  High Strung.  Add your favorites here...

We don't want to be that way.  

We aren't TRYING to be difficult.  

We just want what's best for our children.  We want our kids to have the same opportunity to succeed as every other student.  And we want to keep them safe and healthy in the process.  

And for us, it just takes more planning than your average student.  

We'd rather go with the flow like everyone else.  Truly we would.  

But we can't.  

Our kids rely on us to be their advocates.  To speak for them.  To be their voice.

We know most people don't know anything about Type One.  After all, we didn't know much either... before.  We know what our kids look like and act like when their blood sugar is low.  Or high.  Or dropping fast.  We know that our kids may not speak up for themselves.  They may be embarrassed to say anything in front of their friends.  They may not want to draw attention to themselves.  They may just not want to stop whatever it is they are doing.  

So we speak up.  

So we make plans.  We work on 504 plans and orders from the endocrinologist.  We make direction sheets for the cgm and pump.  We print out directions for how to take care of children and what to look for when things are "off".  We make copies for every teacher they will have.  We ask for meetings before school begins.  And we take a bag of supplies to school so large it looks like we might be moving in.  

We ignore our nerves.  We ignore the stares.  We ignore the comments from others about all that we do to get our kids ready.  And we definitely ignore all those people whose back to school list does not involve a trip to the pharmacy!

We just do our thing. 

We do this because we are their parents and this is our job.  

We do this because we love them.  

                 (I know it's not specifically for D Rents but it fits pretty well and like the message!)

Now for my public service announcement....

PLEASE promise me that you won't let anyone talk you out of making a plan for child - whatever that plan might entail.  If YOU feel like it's something you and your child needs, please pursue it.  I get so upset when I talk to friends who have had horrible experiences with schools who are not willing to work with families to keep their sweet ones safe.  Because I KNOW it doesn't have to be that way.  We have been blessed with schools that are happy to work with us (and I still feel get all worried and uptight, y'all!).  I know what it SHOULD look like.  Compromise may be necessary.  That's ok.  But what's not ok is a refusal to keep your child safe and healthy.  

This week I will be working on all those fun plans and information sheets for Sweets.  I will post the new stuff as soon as I have it done!  You can check out what I already have (504 plans, bg flow charts, directions, and more) on my School Stuff tab above (or click HERE).  Feel free to use those things!

On Thursday, there will be a FREE Back to School Webinar from 7-8 pm EST presented by the ADA.  For more information on the webinar and other resources that the ADA's Safe at School program provides, click HERE.  

We can do this!


The Outsiders: What IS Normal?

Friday, August 2, 2013

We've been doing this diabetes thing now for a while.

We've got a routine down.  It works.  We roll with it.

Some days are harder than others.  Sometimes things don't work.  Sometimes we SWAG wrong.  Sometimes there's drama over a site change or something.  Sometimes D is more of a pain in the ass than others.

But any more... not much ruffles my feathers.  I'm calm.  I feel like I can handle most anything D throws at me.  I am used to this life.  It is now our new normal.

No- scratch that...  It's not our new normal.  It's just our life.

It's what we know.  It's ALL Sweets knows.

And we forget...

Our life is NOT everyone's normal.

Awesome D Mama Alexis and I were just talking about this.  How we forget...

We forget they don't know.  They don't get it.  They aren't used to what living our life looks like.  The things we have to worry about and consider just don't don't even enter their minds.

And we are glad for that.  We don't want them to know like we do.

But sometimes it hurts, too.

It's normal for us to have our kids attached to medical devices.  It's normal to have to stop an activity to test and treat.  It's normal to plan meals with extra thought.  It's normal to count out and measure everything they eat.  It's normal to wake up at night to check.  It's normal to test and see some blood many, many times a day.  It's normal to have a bag of medical supplies and insulin in our fridge.  It's normal to talk about basals and bolusing and how many fries she ate and when the best time to restart Dex would be given activity and peaking insulin.

We forget that to others, this is different.

My kid can't just eat when she's hungry.  She can't just eat out of the bag of Goldfish crackers or the bowl of popcorn with her cousins.  She can't swim for hours without getting out and testing and sometimes having a snack.  Sometimes she has to stop and eat even if she doesn't want to.  Sometimes fun times are halted because she has to change her pod or test her blood sugar.  She can't go off with her older cousins without one of us because they don't know what to do.  She can't just jump in the pool without a care.

All this stuff... it's not really that big of a deal.  In the scheme of things... it's just not.

After all, it's our life.  It's what we know.  It's just what we do.

But it becomes a big deal when no matter how hard you try, your child knows things are different for them.  And they know why.

Sweets was so little when she was diagnosed.  SHE thinks it's crazy when people do just eat out of the bag.  Or when they just eat without asking and testing first.

But she's not stupid.  She now knows it's what most people do.  She knows no one else in our family has diabetes.  No one else wears a pump.  No one else checks their blood sugar before they eat.

She knows she is the one who is different.

And, at least right now, 98% of the time it does not bother her.

She has her moments where she may huff and puff but soon she's off to the next thing and the moment has passed.  There are times when she expresses something... more.  But those are few and far between.  At least for now.

It bothers ME.

98% of the time, I just roll with it.

But sometimes it smacks you in the face.  And it stings.

All of the "it's not fair".  The "why her?"  The "if only it was me".  The "I hate this".

It rushes back.

And there you stand.

Watching your precious sweet one testing while everyone else is in the pool.  Watching her sit out and treat a low.  Watching her watch everyone else.  Wondering if it's bothering her.

And the tears come.

Once again.

Because it's NOT fair.  Because you DON'T want this for her.  Because you wish her worries could be the simple childhood worries of her friends.  Because there is nothing you can do to take this away.

Because you feel so alone.  Sometimes, even surrounded by family and friends, you feel like an outsider.  You feel scared because you are the ONLY one who knows how to care for your child,  And you feel angry.  Because it shouldn't be this way.

And then it's gone.  For me, sometimes it goes as quickly as it comes.

The air gets knocked out of me.  And in the next breath, I'm ok.

I'm back to my normal.  I'm back to my every day.  I'm back to solid ground.

The more time passes, the easier it is to get to that place of "ok".  It gets easier to pull it together and remember my life is pretty awesome.  Even with diabetes.

** Some of these truths are mine.  And some belong to Alexis.  And some belong to us both.  I've weaved our stories together.  We are "Same Same".  And I have a sneaking suspicion that we are not alone in these feelings.  That may be the best part.... we are NOT alone.  Does it matter that we are on opposite sides of the country?  Nope.  Texts go really fast.  So does facebook.  And email.  And it grounds us.  When you are feeling like this - know you are never alone.  And you can bet there is another Mama or Papa feeling the same thing.  Cling to each other until you get your footing again.  Support is what we do best!**



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