A Vlog From Sweets

I have been busy doing the million and one things on my summer to-do list!  

One of those things was turning Sweetpea's old bedroom into a craft room for ME!  As usually happens with my projects, I totally underestimate how much work is involved and how long it's going to take.  It turns out great - but getting there is real PAIN.

Anyway, I was painting the room the other day and Sweets was "helping" me (code for running off with my supplies - but only because I would only let her do a little bit of painting...).  She found our Flip video camera and asked if she could make movies.

SURE!

If it means that I can paint in peace for at least a few minutes, I'm all for it!

So, she made videos.  I could hear her but couldn't figure out exactly what she was talking about.  

Then the camera ran out of juice.

Today, I charged it up.

And this is what I found....

This is all her... I had absolutely NOTHING to do with this!  

Enjoy!

She's pretty awesome, huh?

WORST CURE EVER

Earlier this summer, we had a garage sale!

We are finally sifting through the baby stuff down in our basement and ready to pass it on! And we decided to donate our garage sale proceeds to JDRF.

Sweets has been looking forward to this sale for WELL over a year!

She has been planning on setting up a water stand and selling refreshment to our customers.  Yes, water.  Not lemonade.  She doesn't like lemonade.  She likes water.  So there you have it!

The sale went really well!  We made over $800 for our walk team!

But that wasn't the best part.

The best part were the people who specifically came to show their support for JDRF and diabetes research and Sweets!  We had friends who just came to show their support.  We had a couple of different adults who came and were happy to show Sweets their own pumps!  We had people of different ages - one was a lady about my age (so quite young) and another was an older woman - both with pumps and both eager to show them off!

Of course, no garage sale is complete without a few crazies.

There was a couple who came to shop and decided it was appropriate to share their beliefs about Type 1 and how it is cured.

You know where I'm going with this.  It wasn't pretty.

I had a couple of signs up stating that we were donating the proceeds to JDRF and some basic facts about type 1.  The lady stopped to read it.  I happened to be doing a pod change at that time so I was busy  but she asked J if we had a cat.

He said yes.

Long story short, she proceeded to tell him that that Sweets got diabetes from our cat and that our cat has parasites.

Nice.

Oh, but that wasn't all.  Nope.

She just wouldn't let it go.

She then came over to the water stand where Sweets was "working".  She wanted to buy water.  That was nice.

But then she started telling ME about the parasites and how her friend had diabetes but got rid of the parasites and started eating healthy and the diabetes went away.  And that I needed to get Dr. Crackpot's (not his real name - although close, I'm sure) book.

Ok.  Deep breath.

I calmly explained to her that type 1 was an autoimmune disease and that unlike type 2, it could not be treated with diet change alone.

To which she told me, in a rather nasty tone, "I know what diabetes is."  And her husband added, "And so does Dr. Crapforbrains."  (Also not is his really name...)

Ok.

Deep breaths.

I responded with, "NO, I think I KNOW what diabetes is and what it entails."

I must have had the crazy look in my eyes but she didn't say another word and she left.

And it's a good thing she did.

Because I would have hated to have gone completely Mama Bear crazy on her and caused a scene at our garage sale!  I could feel my anger rising up - threatening to spill out.

I don't get upset too often.  I usually will bit my tongue.  I'm not a fighter.

BUT

Do NOT come to my house and tell me lies and my child's disease.  Do NOT tell me it was caused by CAT.  Are you for real?  If it was that easy, do you really think that all those doctors and scientists would not have figured that out by now?  UGH.  That sends me over the edge.

I can feel my blood pressure rising as I type!  And I'm trying very hard not to use the kind of language that I WANT to use about this situation!

Source: someecards.com via Hallie on Pinterest

So, all in all it was a success!  $800, new D buddies, and the WORST CURE EVER.  All in a days work!


 

You Are Not Alone

Take a minute and listen to this song...




Awesome, huh?

The first time I heard this song, I think my breath just caught in my throat.  The music is haunting and it speaks to a part of me that is so real and so needed to hear those words.

You are Not Alone.

This song explains perfectly why I blog about our life with diabetes.

I want you to know - You are NOT Alone.

This disease can be so isolating at times.

When Sweets was first diagnosed I felt so alone.  No one knew anything about Type 1.  No one knew what to do.  No one knew how to help.

Who could I turn to?  None of my friends or family had ever had to hold their three year old down five times a day to give her shots.  There were nights where she would scream and cry and it was so awful... I would be in tears by the time we got her meal shot and Lantus done and I would think, "How am I going to keep doing this?"

One blood sugar test blurred into the next and our nights were spent setting alarms and testing.  Our schedule was rigid.  And the things that were once easy and normal were no longer.

And no one knew what it was like.

And then she went to preschool and again I felt so isolated.  Other parents worried about their kids but no one understood the kind of worry I had.  No one understood being "on duty" 24/7/365.  No one understood that even the RARE dinner out with my husband was not without phone calls and questions and diabetes on the brain.

She got older and she started to feel it, too.  She didn't want to be the only one with diabetes.  She didn't want people to see her pump or her cgm.  In a school of 500 plus kids, she was the only one.

There were the field trips where I was there tagging along - not simply because I wanted to go but because I HAD to go or she could not.  The treats at the farm that other kids scarfed down happily without a care in the world but we had to test first and get insulin.

The classroom parties, the birthday parties, the play dates, the swimming pool .... making it happen for her.  Making sure she was doing what she wanted and what everyone else was doing.  But it also meant getting out of the pool when you didn't want to because you had to test or reconnect for basal.  It meant not eating the pure sugar pixie stix and not just sticking your hand into a bag of chips or a box of goldfish.  It meant not carrying around a cup of milk and taking an hour to drink it.  It meant waiting to eat until Mom had tested and counted carbs.  It meant not really listening while all the other mommies talked because I was watching counting said carbs or watching closely to make sure that the rollerskating fall was just a fall and not a low.

There were the gymnastics lessons where the others mothers talked about their kids and I had nothing to add.  Nothing to share.  I was too busy watching, keeping an eye on Sweets because she was without the cgm.  And their talk of sleepovers and their worries about their girls were just so different than mine.

The parties where the kids start asking to sleepover and no one invites the child with Type 1.

The stories from friends about their vacations and date nights and I have nothing to say because I can't just leave my child with someone.  I can't talk about that new movie or that new restaurant because we haven't been there.  We haven't done that.

Three years in.  And my life is so different now that it was before.

Three years in and I still feel alone.

I still sometimes have nothing to add to a conversation because my reality is just so different.  I still struggle to feel like I have something in common with the people from "before"  I still feel like we are an island and no one really gets what our lives are like.

I still laugh and smile and pretend everything is ok.

When it's not.

When I've been up all night.  When I'm worried that her blood sugar isn't coming down fast enough.  Or not going up fast enough.  When I'm trying to decide if I need to pull the site or do something else.  When I'm counting carbs in my head.    When she has ketones.  When she's throwing up.  When I'm afraid that something minor to practically everyone else is going to send us to the ER.

I tell you all this to tell you that YOU ARE NOT ALONE.

Because even when I FEEL like I'm alone, I'm not.  And neither are you.

Even when I feel like I'm just faking it or feel like I am never going to make it....  I know I will.  And you will, too

Thank the Lord for the Internet, and blogs, and Facebook and Twitter.  Because of that online world, I can connect any time day or night with someone who is living this life, too.  Someone who lets me know that I am not alone.  Often, many someones!

It's not easy.  No one ever said it was.

It gets better.  But we all have our moments.

When it hits us.  When we want to crumple into a little pile on the floor.

And when that happens, I want you think of this song.  I want you to feel those arms around you.  And I want you to know that you are not alone.

I can't take it away.  I can't change it.

But I can be there and hold your hand and walk beside you.

And I will.  Until there is a cure.


** Jamie Grace is an incredible Christian musician just at the start of her career.  She is 20 years old and has written most of the music on her cd, One Song At A Time .  She is no stranger to feeling alone.  She was dx'd with Tourette's Syndrome at the age of 11.  She began a group called "Teens with TS" so that no one would feel alone who is struggling Tourette's.  Check her out - she is awesome!  Sweets and I have both memorized ALL the lyrics and love every single song on her new cd!  And we are planning on seeing her in concert this fall (forget Tobymac - we are going for HER!).**

Having Our Cake and Eating It, Too!

Every week when we go to church, Sweets goes to her classroom for her own church!

Our church is large.  The kids are broken down in the classes by age.  At the time, she was in the kindergarten room.

We had created one of our fact sheets for church.  It has the basics on it and they have an alert system and can call to come check on her if anything comes up.  Which they do!  Usually, her classroom has a wonderful lady as one of the teachers who took a liking to Sweets.  She knows about diabetes and when to call us.  She knows she wears a pump and a cgm.  She just KNOWS.  Not that she knows WHAT to do but she knows enough to look out for her and call us if needed.

A few weeks ago when we dropped Sweets off in her classroom, her teacher was not there.

This is always a tricky thing.  They have the paperwork.  Sweets is old enough now to be able to say when she doesn't feel well and to say that she has diabetes.  We're not far away.  And we are only apart for an hour TOPS.  However, I feel like I have to say SOMETHING.  Just so they know.... Because I know Sweets and although she CAN tell them she may NOT.  But at the same time... I hate having to give a disclaimer every time she goes anywhere.

So when we dropped her off at her room, I had to decide - do I tell or not?

But before I could say anything, the lady that was checking her in said, "Oh, You're the one!  You're  SWEETPEA!"

She had obviously been in the room before and read the paperwork.

But it made me feel very conflicted.

I was GLAD because I knew she would be looked out for.  I was glad they knew about the diabetes and that if anything was odd they should call us.  I was glad I didn't have to be the one to say, "My kid has diabetes and here's what you need to know..."

And I was.... Sad?  Irritated?  A little of both?  because she can't just go to church like everyone else.

She's THE ONE.

THE ONE WITH DIABETES.

I don't necessarily love that she's known that way.  Even if I do have to point it out at times for safety's sake.  Even if it does mean that I know she will at least be monitored.

I guess you can't have your cake and eat it, too.

And it's not just church.  It's like that in LIFE.

We WANT people to know about diabetes.  We WANT people to understand this disease and what it means and what it does to people.  We WANT .... We NEED people to know!  We need people to know what can happen if blood sugar is too high.  We need people to know what happens when blood sugar goes too low.  We need them to understand the physical and emotional and financial burden that diabetes places on us.  We advocate for awareness and for a cure.

And to do that... and to do it effectively we have to tell our stories.  We have to put a face with a disease.

At the same time, we don't want pity.  We don't want people to feel sorry for us.  We don't people to think we are less than capable because of a disease.  We are proud to showcase world class athletes with diabetes and we applaud their strength.  We make sure our kids can do anything they desire and that diabetes won't hold them back.

It's such a tightrope.

We need people to know and yet we don't want to be defined by it.

We need them understand and yet we don't want their pity.

We want to show that people with diabetes can do anything and yet we need people to see that we NEED a cure.

So that day, as left Sweets in her class - I just tried to be grateful that she would be looked out for.  And that while she might indeed be THE ONE WITH DIABETES... anyone who gets to know her knows that she is so much more than that.

And I suppose that it's fitting that this aspect of diabetes is such a tightrope.  Everything about diabetes is like a tightrope walk....  exercise, insulin, free carbs for lows, insulin for highs, IC ratios, correction ratios, types of food....

It's complicated.  It's exhausting.  It's frustrating.  It is what it is....

And I suppose that as long as we don't look down...

As long as we just keep walking and keep our eyes fixed on what's ahead - we'll be just fine.

Sleepover Secrets

I've become a blogging slacker!

Summer seems to be getting away from me.  I have tons of things I want to blog about - but finding the time to do so has been difficult.  It's SUMMER!  I am supposed to have MORE time now, right?

I suppose it's a good thing.  It means that we have been busy having fun!  In fact, J is calling this the "Summer of Fun" because of all the fun things we have been doing.  We meaning mostly ME and SWEETS.  Yes, he is feeling a little left out!

We have been busy every day!  We have been swimming, had playdates, gone to the Amusement park, gone to concerts, had swim lessons once a week and tennis lessons twice a week, had cookouts, gone to movies, played mini golf, worked in our garden, had a garage sale, and even had a couple of sleepovers!  Whew!  No wonder Mama is tired!

This post is about one of the sleepovers.

We went to a party on 4th of July.  It was cookout with some of our good friends - who also happen to be the parents of Sweetpea's good friends! (works out nice, huh?!?)  As the party was winding down, the kids all started making plans to spend the night at each others houses.

This is always a little awkward.  You know how it goes... no one really wants to invite the T1 to a sleepover.  Really, it's not that they don't WANT to... it's just that they know it's not easy.  She can't go by herself.  I would have to go too.  While other kids can just hop into the car and go to another house to spend the night, it's just not that easy for us.

So when Sweets asked if one of her best buddies could come to OUR house, well... I said "SURE!".

This was the first time that just ONE of her friends had come to spend the night.  These girls have been friends since they started preschool - 3 years ago.  They are thick as thieves!  And they were SO EXCITED!

They decided to sleep in Sweetpea's room.  She has a double bed and since her friend had not had time to go home and get a sleeping bag or anything, it just worked.

We have a baby monitor in Sweetpea's room so that we can hear her Dexcom alert.  So after we "put them to bed" (and I say that very loosely!) we turned the monitor on so we could listen for Dex.

But what we heard was much sweeter.

The two girls lay giggling and talking about a myriad of things.

But soon the conversation turned to first grade and diabetes.

As I write this, I realize that I haven't told you about something BIG in the works for us.  If you've been reading for awhile, you may know that Sweets has gone to the school where I teach for the last 3 years.  She's had two years of preschool and one year of kindergarten.  It's been great and I've loved having her there with me and being able to manage her diabetes personally.  However - our school is an early childhood center.  It's ONLY preschool and kindergarten.  So Sweets has to go to a new school next year.  Without Mom.  And we have decided to send her to first grade at the school that is where we live instead of where I teach.  This is NOT the school where her bff is going.  For the first time EVER, these girls will not be in the same class.  And that is BIG.  It's as big to them as handing over her daily D care is to me! (I will be posting more about this soon.  That requires a entire post by itself!!)

Anyway, Sweetpea's friend asked, "Who is going to take care of your diabetes next year?  Are you going to be able to do it by yourself?"

Sweets answered, "Oh no - I don't have to do it by myself.  They have people there who know what to do.  There are LOTS of kids with diabetes that go to my new school.  There's even going to be another girl with diabetes in my CLASS!"

So sweet.

First, the fact that her friend cares enough about her and understand diabetes enough to even ASK and THINK that question is sweet enough to bring me to tears.  We have been SO BLESSED with people in our lives that care of us and for Sweets.  People who WANT to learn about diabetes and who truly care for her.  The fact that at six years old she has more than one friend like this is simply amazing to me.  I am so grateful!

Also, Sweetpea's answer just filled my heart with little bits of happy.  As I promise to write about soon, the decision to send her to a different school was NOT an easy one.  We spent a lot of time and a lot of tears working through that one.  And it was a decision based on diabetes and what would be best for her.  Leaving her best bud - I was so worried that she would be devastated.  But she wasn't.  And hearing her tell her friend that she was not worried about her diabetes and that she was excited because there would be other kids with T1 at her new school (no longer the only one)...  it made me smile!

It was such a sweet little exchange.

And it made me think about how this disease does not just affect us but everyone around us.

We are so open with her diabetes and her diabetes care.  And over the years - even if those years were from the ages of 3 to 6 - the understanding of what type 1 diabetes IS has just become part of the fabric of the relationship between these two.  Sweetpea's friend looks out for her.  She would go with her to the clinic at school.  She would come to my room so I could count her lunch carbs.  She would help Sweets remember how much she ate and what she started with.  When playing, she will tell me if Dex alerts and Sweets does not want to stop playing.

She loves her and treats her like any other kid.  And at the same time, she looks out for her and worries about her.

This is exactly what I have always hoped for her!  To have people in her life who will love her and care for her and look out for her.  And yet also treat her not like a person with a disease.  Not like someone who can't do things.  Not exactly just like everyone else....  but as the unique person that she is.

By living out lives - our diabetic lives - out in the open we are slowly changing the perception of this disease.  That gives me hope for the future.

Hope that not only people with diabetes will be loved and cared for but that the disease itself will be better understood and the need for a CURE will become more apparent.

It won't be just the families pushing for a cure - it will be everyone.

People will say, "My best childhood friend has diabetes.  I've watched her test her blood countless times.  It's time for a cure."

"My child's friend has diabetes.  I've watched him count his food and give himself insulin.  It's time to cure this disease."

"My best friend has diabetes and I've watched her struggle for control during her pregnancy.  She needs a cure."

"My best friend has diabetes and I've had to help him when he was too low to help himself.  He needs a cure."

One person at a time.  One relationship at a time.  One friend at a time.

Those sleepover secrets just might change the world!


 

Lilly Love

 Have you heard of Lilly Diabetes? 

Chances are that you have.  Lilly Diabetes has been around since 1923 when they produced the first commercial insulin.  Things have come a long way since then and I just wanted to highlight a FEW of the things Lilly is doing in the wonderful world of diabetes. 

The Diabetes Scholars Foundation recently announced their 2012 Scholarship Reciepients.  This year, 21 scholarships were awarded -  thanks in part to a donation of $100,000 from Lilly Diabetes to support the newly established Lilly Diabetes Tomorrow’s Leaders Scholarships and the Foundation’s mission to empower young adults with type 1 diabetes to live their lives to the fullest.


Lilly also kicked off their 8th annual diabetes camp tour!  This year Olympic cross country skier, Kris Freeman, will be traveling across the U.S. this summer to share his type 1 diabetes story with campers at 10 different diabetes camps. To learn more about other Lilly diabetes support programs, click HERE.



Of course, one of my favorite Lilly parternships is their relationship with Disney!  They are responsible for bring us Coco, the monkey with diabetes!  The Coco book has become a favorite of Sweets!  We just wish there was a Coco plush!  (Hey Lilly and Disney folks - Can you make that happen?!? PUH- LEEESE!?!?)  I also snagged some of the young adult stories about living with diabetes at a recent expo I was at and I'm looking forward to adding them to my summer reading list!  To check out the Lilly/Disney resources, click HERE.  


I've saved the best for last!  


Every year, Children with Diabetes has a conference called Friends for Life in Orlando, Florida.  I hear it's beyond amazing - although we have not yet had the pleasure of attending! 

Last year, Lilly and Disney sponsored something called the "Once Upon a Time Conference".  Applicants were to write a short essay about their lives with diabetes.  The winner would receive a trip to FFL!


Guess who won?!?  


No, not me!


One of my very good, most wonderfully awesome friends - MERI from Our Diabetic Life!!!


You may know Meri (I've posted about her and linked to her many times) - and if you don't - you need to get to know her!  She is the mom of four ridiculously amazing boys (three of whom have type 1).  She is an incredible writer!  And she also the wife of a pretty awesome dude who happens to be battling cancer right now.  She is one of the sweetest, kindest, funnest people I know!  Not to mention her mad swagging skills, bolusing ability and all of her swelly brained management of diabetes!  Oh yeah - and there's also the fact that her grace and courage and bravery are constant source of inspiration!


You can read about this incredible gift that she won for her family from Meri herself by clicking HERE.


A big THANKS to Lilly for all the work they are doing for those of us living with diabetes!  Diabetes is hard and it's nice to have a place to go for support and resources!  


** I was not asked to write about Lilly Diabetes or Disney or anything.  I just felt like it!  In no way am I getting anything by doing this.  I just wanted to share some cool stuff and the fact that my friend won this contest and you should check her out cuz she's all that.  This was all me, folks!  All me!**