I Don't Like Feeling This Way

Wednesday, September 28, 2011

You know, I almost didn't post about this...

I mean, I've posted before about the Green Eyed Monster.

But then Reyna wrote about it.  And I thought "SAME".

So here I am.  To share with you MY story of jealousy.



Let's go back a week...  Our JDRF Walk to Cure Diabetes was on Saturday.  (Pics and possibly a video to come... but I'm STILL recovering...)

Well, AFTER the walk Sweets had been invited to a birthday party.  And not just ANY birthday party.

Nope.

A SLUMBER PARTY!

I know, you're thinking that I am totally, completely, 100% insane to do a slumber party after the walk.  It wasn't supposed to happen that way.  The party was supposed to have been the week before but kids get sick and people are busy and so the party was after the walk.

Sweets was SUPER EXCITED about this!  This was a SURPRISE slumber party for 3 of her very dear friends.

Are you confused?

Let me explain....  One of MY dear, dear, best friends has 3 kids.  ALL born in late September or early October.  One is 8.  One is 6.  One is 2.  So she had one big, get-r-done party for all the kids!  I thought that sounded like a wonderful idea!

Sweets loves ALL  of these kiddos - but especially the 6 year old.  She and He are best buds.  They say they are getting married.  He's the one who said that he wished she didn't have diabetes.  I love these kids like they are my own, too.  So that just added to our excitement!

Now, I had no problem spending the night.  You knew I was going to, right?!?  I mean Sweets has never spent the night anywhere without me.  ANYWHERE.  But this is my best friend we're talking about here - so it's not like I minded hanging out!  I did not!

However...

The parents all hung around for awhile for dinner and presents and cake.  We are all friends, too.  They are a fun bunch.

But there it was.

Jealousy.



The parents are all talking about what they are going to go do once they leave.

Go to dinner.
Go to a movie.
Sleep.
Spend time together.

And I just could not help it.

All that kept going through my head was.... must be nice.

And I just HATE feeling that way!

But.... Oh My Gosh.

There I was.... I'd just organized our walk team and walked 3 miles that morning in our JDRF Walk.  On top of also running the JDRF Advocacy booth, signing up new advocates, getting people to sign our petition for a JDRF license plate, and encouraging people to add to our chain of links that we're taking to Congress.

I.   WAS.   EXHAUSTED.

How much would I have liked to have a little down time?
How much would I have liked to have been able to spend some time with my husband?!?

I can't tell you the last time J and I got out on our own.  I'm thinking it MAY have been for our anniversary in July... but I don't know.  We barely see each other anymore.  We communicate on the phone because he leaves for work before we get up and once we're home from school it's busy, busy, busy until bed.  Just trying to spend time with her and keep the house running and getting work done...  It's crazy.

I miss my husband.

How much would I have liked to have been able to go home and sleep.  All night.  No worries.

I can't tell you how hard it was to sit there and listen to all the chatter.

But what choice did I have?

There was no way I could have left Sweets alone.  I would NOT leave my friend in charge of T1 AND 11 kids.  And honestly, Sweets would not have stayed if I had not stayed.  She doesn't like to be away from me at bedtime.  And that has nothing to do with D.

And there was NO WAY that Sweets was not going to get to experience this sleepover.  NO WAY.

So....  I sucked it up.

I had a good time watching the little ones and getting them all tucked into their sleeping bags.  I enjoyed watching their sweet little faces as one by one they drifted off to sleep.  I had fun eating pizza and talking with my super wonderful friend once all the kids were ASLEEP!

It was a crazy night.... of course.  I treated more than one low.  The 2 year old somehow ended up sleeping with me on the couch (so sweet!).  Sweets and her buddy were awake and whispering at 6 am.  Then they were organizing a parade - complete with a drum set and tambourine - through the living room around 7:30.

But you know....

As much as it stings.  As much I'd give my right arm for a little down time.  As much as I so want to spend some time alone with my husband.  As much as I NEED SLEEP....

I have some pretty awesome memories that the parents who went home don't have.

Like this....



And I just keep reminding myself that sooner or later Sweets will be grown up.  It won't be long before she won't want me around.  Before I know it she's going to be handling this on her own.

So, for this season, I may not get the "breaks" that other parents get. I may not get the nights out.  I might not get the sleep.  I might not get the date nights.  I might not ever be able to just leave my kid at someone else's house without major planning and worry.

But I get the memories.
And I get the satisfaction that Diabetes did not win.  It did not keep my girl from being a kid.
And I get the pleasure of knowing that I am teaching Sweets how to LIVE with diabetes.  How to do whatever it takes.  How she can be just like everyone else.

Yeah... I'm still jealous at times.  But I know that my life and the life of my family is just different from "everybody else".  Not better.  Not worse.  Just different.

And I keep reminding myself of this...





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Thank You from the Bottom of my Walking Shoes

Tuesday, September 27, 2011



Oh man.... has it really been a WEEK since I last posted?!?

Well, we ROCKED THE WALK this weekend! 

It was a little uncertain there for awhile...

On Thursday, Sweets went home from school early. Throwing up. With strep.

I had a cold all week... And finally lost my voice pretty much totally on Thursday.

My parents were supposed to pick up our shirts Thursday night. Only they weren't ready. Luckily my Mom... Put her foot down... And they were ready. Late - but done.

This combined with the sickness made delivering our shirts pretty much impossible.

Oh... And the shirts had bubblegum pink printing instead of HOT PINK. They are still cute... But...

Then Sweets moaned and cried all night long. Poor baby.

And the forecast called for RAIN and COLD.

BUT...

By Saturday, my voice was back. And so was her energy! The rain stayed away. It wasn't too cold. The shirts looked great. Lots of friends and family came to share the day.

And the walk was a success!

A BIG THANK YOU to everyone who walked with us and donated to our team and supported us in all different ways. Because of you, the day was great! You make my girl feel like a princess! And for that, I am forever grateful!

Walk day is such a special time...

Sweets looks forward to it all year! She loves being with friends and family- all wearing the same shirts and walking for HER. She just BEAMS! And it's so important to her that people come. You might think she wouldn't pay attention.... But she does. One of her teachers and her teachers aide came and she was thrilled beyond belief! Of course, she loves having her buddies there! But she honestly looks for each person!

I love walk day!

I love the excitement. I love seeing all those people coming together for the same cause.

It's exciting and emotional all at the same time! Seeing our family and friends there to support us... I don't have words to express how much it means to us. Then combining that with all these other families doing the same thing.... And walk day is also starting to become a day where I get to see friends - other Mamas living this D life, other Mamas who get it (and Papas, too!), others who understand. It's just a special day!

We still are collecting money... So our total is not confirmed yet... But we will have raised at least.....

$13,000

That blows me away.

The generosity our family and friends continue to shower on us - and on all of us living with D, is simply astounding. My heart just overflows... We are truly touched by each donation - no matter how large or small. It's the kindness that matters. And it's just amazing!

You know, it's about more than raising money.
It's more than raising awareness.
It's more than the good times.
It's more than the cute shirts.

It's about a CURE.

It's about giving my little girl the best shot possible at a long, healthy life.

That is what it boils down to for me.

It's about Sweets. Keeping her healthy and alive for a long, long time.

And it's about your kids, too. It's about you.

So.... Thank You.

Thank you for your support.
Thank you for your donation.
Thank you for walking with us.
Thank you for reading.
Thank you for caring.
Thank you for getting involved.
Thank you for helping make our dreams come true.

Thank you for loving us.




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Haunted

Tuesday, September 20, 2011

It's been a rough few days.  D wise.

We Had TWO birthday parties on Sunday.  And she was HIGH.

As in HI!  I hate it when the meter greets you that way.  New pod because I accidentally took the old one off trying to take of something else...  Changed bed sheets and nightclothes around 11pm.  Soaked.  She came down overnight.  But she was high as a kite most of the day.  Corrections didn't seem to touch it.  Number down to do massive rage bolusing.  New pod just as a precaution.

We're all tired here.  Tired of fighting this fight.  Whether it be on the sidelines or as the actual fighter.

Just tired of D.

But that's not the only reason it's been a rough go of it.

It's the blue candles.

You know what that means.   It means another life was cut short due to type 1 diabetes.



I'm going to be honest with you.  I hope you don't think I'm horrible....

But sometimes I just can't go there.

I see the candles....  I say prayers for the child and the family.  But I really try to not dwell on it.  I try to not find out exactly what happened.  I try to put up a wall... and not let it into to my life.  Or my heart.

I mean, it's not that I don't know it can happen.  I know.


It's not that I don't care. Please understand... It's not even close to that...

It's more like sometimes when I see the candles I can feel myself putting on my armor so it doesn't get to me.  Because sometimes I just know if I'm not strong enough to handle it.

But this time...

This time was different.

I don't know why....

This time I didn't get the armor on fast enough, I guess.

And this one is haunting me.

This one is really getting to me.

I hate the way that sounds....  Like other deaths didn't bother me in the least.  It's so not that...

This one... this one hit way too close to home.

I'm not going to use any names.  I don't know this family. I don't know what happened.  I only know what I read on facebook from posts.  I don't claim to have totally accurate or correct information.

But what I read was that a 14 year old girl passed away after a low blood sugar and a seizure at night.  She was unable to be revived.

I kid you not.  If I had been standing up when I read this, I would have fallen to my knees.

This could have been us.

Easily.

That is what happened to us.

I felt this wave of sheer terror wash over me...  And this overwhelming feeling of grief.

I am so incredibly heartbroken for this family.  I'm not sure I have the words to convey this...  We who live this crazy D life are a family.  None of us asked for this...  But here we are.

And the truth is, this could have been any of us.

But for me...  for us... I had a flashback.

I remember so clearly that night in April when Sweets blood sugar crashed and the meter read LO and she seized.  I remember holding her on the floor in the upstairs hallway.  I remember calling 911 and begging them to please hurry.  I remember praying to God to please, please don't take my baby.

Why?

Why wasn't it us?  Why was it this girl?  What happened that one child survived and one did not?

Was it just luck?

What if our luck runs out?

No one has any answers.  This is just life with Diabetes...

There is always that fear.  That little bit of fear that is a slight undercurrent to our lives.  Sometimes we feel it's pull stronger than others.



I feel that this is a rambling post... but that is just where I am tonight.  All over the place.  And hurting.  Hurting for my child.  Hurting for myself.  Hurting for all us.  But mostly, hurting for this family that I've never met... this family who lives across the country...  who is living my worst nightmare.

What can we do?

We can LIVE.

That's really all I've got.  We can LIVE LIFE.  And we can live it WELL.

We can refuse to let the fear paralyze us.

We can continue to defy the odds.  We can continue to raise money.  We can continue to advocate.  We can continue to support and love each other.

And we can promise that we will never forget.

We will never forget the reason why we do all this.



As our walk is approaching this weekend, I find that my resolve is strengthened.

And I know that I do what I do not only for my child.  But for yours.  And for those who are no longer able.


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My Turn at 30

Monday, September 19, 2011

In honor of Invisible Illness week... and because everyone else is doing it...  Here is my list of 30. 

1. The illness I live with is:  Type 1 Diabetes.  Sweets is the one who HAS Type 1.  But we all live with it.

2. Sweets was diagnosed with it on:  April 27, 2009 at 3 years and 1 month old.

3. Sweets had symptoms since:  Hmmm....  She was sick A LOT the previous winter.  I started noticing the soaked diapers, thirst, and irritability a couple of months before - probably around late January or February.  Noticed weight loss in March.  The two days before her diagnosis, she was throwing up.  Boy, writing this makes me feel like a really stellar Mom.

4. The biggest adjustment I’ve had to make is:   Living with no sleep. I'm someone who needs a good, solid 8 hours of sleep each night. I can't remember the last time I slept for 8 hours without having to get up at least once or twice.

5. Most people assume:  I know what I'm doing. I try - but D throws you curve balls that you don't expect and each day is a learning experience where you just try your best and then hope for the best!

6. The hardest part about mornings are: Getting up. It's the sleep thing. I'm so tired. Mornings have always been hard. Now they are impossible. Getting up, dressed, getting her up, dressed, tested, fed, bloused, and to school on time is quite a feat.

7. My favorite medical TV show is:   I don't watch medical shows. Too much real life medical. I prefer crime dramas like The Closer or funny stuff like Modern Family or How I Met Your Mother or anything on HGTV.

8. A gadget I couldn’t live without is:   The Omnipod! I could not live without her insulin pump! And the Omnipod is the pump and meter all in one! LOVE IT!

9. The hardest part about nights are:  The fear. It seems worse at night. Maybe it's because you don't have eyes on them or something? I hate it when I'm so exhausted and NEED to sleep but I'm too afraid to let myself because I don't know whats going to happen or her number is too low or.....

10. Each day Sweets takes ___ pills & ____ vitamins:   Insulin. Just insulin.

11. Regarding alternative treatments I: Get really, really offended when people suggest that if she would just eat more cinnamon or less carbs or take some herb or vitamin or whatever she would be cured. I want to scream, "Don't you think if it was that easy that we would have tried it already?!?"

12. If I had to choose between an invisible illness or visible I would choose: Invisible. At least you can hide it if you want to. It presents it's own sets of problems but at least you have the choice.

13. Regarding working and career: I work. I'm a teacher. And it's really, really hard to balance it. It's really hard to teach AND manage D at school - although I'm blessed to be able to do it. We make it work. We have to- I carry the insurance!
As for Sweets...  She will be whatever she sets her mind on.  Right now she says she wants to be a teacher in the morning and a doctor in the afternoon.  Which is funny because that is EXACTLY what I said I wanted to be at her age.  Only she wants to be an endocrinologist and I had no idea what that was at her age.  Lucky me.

14. People would be surprised to know: That Jason probably worries more than I do. Especially at night.

15. The hardest thing to accept about Sweetpea's new reality has been: That it isn't going away. And no matter how perfect I do things, it can still go horribly wrong. No matter how hard I try, I can't control this disease.

16. Something I never thought Sweets could do with her illness that she did was:   I don't know. I have always believed that she could do anything. We flew to Florida two months after dx. It was a challenge - but it was great and we totally rocked it!

17. The commercials about Sweetpea's illness: What commercials? Unless I'm watching D Life, all I see are commercials about Type 2. She doesn't have Type 2, thankyouverymuch.

25. My favorite motto, scripture, quote that gets me through tough times is:  My favorite quotes change all the time with whatever is going on in our lives.  Here are few favorites...





26. When someone is diagnosed I’d like to tell them: You Can Do This! And you WILL do this. It never really gets easier.... YOU just get better. And you may not believe me now, but you will. Trust me.

27. Something that has surprised me about living with an illness is: The generosity that people show to us. Whether it's raising money or offering to help... It's overwhelming! I am surprised how every Type 1 I know is just plain AMAZING. EVERY. SINGLE. ONE. They are all incredible people - full of grace and strength. And finally, I'm surprised at how strong I am. I never would have guessed it...

28. The nicest thing someone did for me when he wasn’t feeling well was: People sent her gifts when we were in the hospital. I really don't think they knew how much it meant to all of us. It was wonderful to have the distraction of a gift and something new to do and play with. It was definitely a gift from the heart.

29. I’m involved with Invisible Illness Week because: It's important. It's important for people to learn that our kids might not look sick.... And they aren't sick.... But they deal with things that would blow your mind.

30. The fact that you read this list makes me feel: Happy. Honored. Understood.

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Diabetes Made Me Do It

Thursday, September 15, 2011

Diabetes made me do it.

Totally.

I mean, really. I would NOT have been standing there nervously shifting from foot to foot, my eyes locked on my little girl doing gymnastics down below, while shoving Skittles in my mouth - one after another after another - if had NOT been for diabetes.



Ok, fine. Free will... blah, blah, blah. I'm responsible for my own actions. No one was force feeding me.

BUT... I don't care. I'm so blaming diabetes. If it wasn't for D, I would not have been fighting to hold onto a semblance of calm, forcing myself to stay put and let her be, pushing down that rising panic/fear/dread as hard as I could.

All the other parents were sitting there happily watching their kids. Or NOT watching their kids and instead reading a book. Or talking to friends. Or signing their kid up for the overnight.

Not me.

Stupid diabetes.

Maybe I should rewind and start from the beginning...

Yesterday was Sweetpea's first time in her new gymnastics class. She has moved up 2 or 3 times since last Spring. And THIS class uses the "BIG" equipment. This class uses the regular bars and beams and trampolines. So it's a BIG DEAL.

She was so happy! She was SO looking forward to this! And then when we got there, a friend from her class at school is also in this gymnastics class. Could it get any better?!? She could hardly wait to get started.

J took her to class and I met them there. He called me and said she was on the lower side (84) with IOB so he wondered if and what to give her. We decided some fat - that always holds her steady. M&M's usually are the perfect option. SHe downed 6g before class started.

Then, right as she was going into the gym, she beeped double arrows down.

Crap on a Stick.

I tested her again while she impatiently hopped from foot to foot watching the girls in her new class run into the gym. 

71

Well, Hell.  I gave her juice which she sucked down and ran off.

About 15 minutes later when they had moved over closer to the door to get drinks, I grabbed her and tested her again.  She was not thrilled with me.  "HURRY UP!  I don't want to miss something".

62

Are you frickin' kidding me?!?

I pull out the Smarties.  She had 2 packs - 12g.  Smarties ALWAYS work.  They work too well so I try not to use them often.  But if it was ever  a Smartie time - this was it.  She munched away and ran off with me calling after her, "If you feel weird, you let me or the teacher knoooooowwwww!"

And at the same time I realize that I'm out of juice and Smarties in the bag.  All I have left is Skittles - in colors that she won't eat (read: everything other than red) and Starburst.  I'm going over in my mind where I have extra juice boxes stashed - maybe one in my purse.... I KNOW I have at least one in the car.  There's also a snack bar upstairs....  We will be ok...

If you are wondering, she does not wear the cgm during gymnastics.  It gets in the way.  And she just does not want to answer questions about what she has on.  No one seems to notice the pod under her suit.  Although times like this, it makes me nervous to be without it, I really want to respect her wishes and help her learn to live with disease in a way that makes her happy and provides as little disruption and awkward moments as possible. 

As for letting her do her thing while she's low.... well, that's our decision.  I realize that you may not agree with us.  That is fine.  You don't have to. 

Was I nervous?  You bet I was.  That is why I was having a mini breakdown and shoving Skittles into my mouth like they were going to cease to exist in a matter of seconds.

BUT...  this was her first class.  She did NOT want to stop.  She did NOT want to leave.  I was right there.  I was watching her every move.  I was checking her every 15 minutes.  And for US, for OUR kid... it was the right thing to do.  I just absolutely refuse to let D interfere and mess things up any more than absolutely necessary.  We find a way to work around it.  And that was how we worked around it yesterday.

(So, please don't leave me nasty comments.  If you don't agree, fine.  Just respect my decision and the fact that we each know our own child better than anyone else and we know how to manage our child's diabetes better than anyone else.  One size never fits all for D...  So I will respect your choices and you respect mine.  Capiche?)

So, back to my nervous Skittle breakdown.  At one point I realized that I had NO IDEA what I was eating.  I was just eating.  Nervous energy.  Something to do.  And I realized I had to look like a total nut job and not the "calm, cool and collected" Mom that I was desperately trying to portray. 

Oh- well.



Next thing I know, Sweets is giving me a "Thumbs Down".

Something is not right. 

Well, has this not just been the most craptastic class ever?!?

She felt low. 

I was super pleased that she actually thought she felt low and then she actually SAID that she felt low.  She does not recognize her lows and then she also tends to ignore them if it's inconvenient for her to test.  She loathes testing.  Not the needle part as much as the interruption.  She also hates to let D - or all of it's time consuming tasks - keep her from anything.

She was 145.

Not low.  *SIGH*  I could finally exhale.

I asked her if she was ready to go.  If she just wanted to stop and go home and try again next week.  I told her it was ok, no big deal.... if she didn't feel good she should stop. 

"No way.  If I'm not low, I'm going back."

That's my girl.  Determined.

She finished the last 10 minutes of class.  She learned how to get on the big bars and swing.  I could see she was nervous about it.  But she stayed there until she did it. 

I'm proud of her. 

But I'm still totally blaming Diabetes for my Skittle meltdown - as well as the pounds I've gained since diagnosis. 

Hmmm.... Maybe I need a little of her determination....



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Liquid Gold

Tuesday, September 13, 2011

A few weeks ago, my Dad had surgery to replace his aortic valve.  You might have read about it HERE.

I want to say a BIG thank you to everyone who sent prayers and well wishes and kind thoughts our way!

Less than a month after the surgery and he is doing very well!  If you didn't KNOW he'd had such major surgery you'd never be able to tell just by looking.  I am simply AMAZED at his recovery - at how fast he was communicating with us, how quickly he was on his feet, and how fast he was home! 

Sweets was rather nervous about this surgery.  As I wrote in the earlier post, she and her Gaga are like two peas in a pod.  They are very close.  And she was really worried about it.  After surgery, he was in the cardio thoracic ICU for a few days.  Children under 14 were not permitted in the ICU.  The day after surgery Sweets and I went to one of our JDRF Promise to Remember Me meetings and then I planned on taking her to a friends house while I ran over the the hospital for a bit.  Unfortunately, my friend's son got sick.  So.... I ended up taking Sweets with me to the hospital.  I thought she could visit with Mimi in the waiting room while I went in see Dad for a little bit.  We stopped at the gift store and she bought him a balloon.  When we got up to the ICU, I called Mom to come let us in.  But when she opened the door a nurse came out with her.  The nurse oohed and ahhed over Sweetpea's pretty dress and her balloon and then she said, "Oh... she can go on in.  He's doing well and sitting up... just go on in and give him the balloon."  So she did.  (Funny how things always seem to work like that for her...)

In she went.  I was a little worried that she would be scared.

Nope.

"Hi Gaga!  Oh.... I had a bed like that when I was in the hospital.  I had one of those light up things on my finger.  I had those tubes in my arm, too.  Hey!  I had a bucket like that to puke in!  Did you puke, Gaga?" 

On it went... she recognized things that were like she has seen before.  And she was no longer scared.  It all made sense to her. 

Most five year old would have been totally freaked out by seeing all those things... but OUR kids are used to it.  It was very sweet - in a sad kind of way.  She knows too much.  That's why she was so nervous.  But once she saw him and recognized things - it helped her feel so much better!

Do you know what she thought the best part was?

He was hooked up to an insulin drip!

The first night I heard the nurse say that... And I said, "What?  Did you just say INSULIN?" 



She said that it's standard procedure to give their patients insulin after surgery.  Even people without diabetes have very high blood sugar after major surgery.  And the insulin helps keep the blood sugar down which helps promote healing. 

WOW.

I did not know that they did that.... but it makes total sense.  I KNEW that blood sugar raises in all people when they are under stress.  I just never really thought about it out of the world of diabetes before.

Dad was on insulin for a few days.  One day when I walked in she said that he'd had some juice because his blood sugar was a little low.  "What's low?" I wondered.  She said it was in the 60's. 

He was getting about 3.2 units an hour of regular insulin at first.  After a day or so it was down to about 1.5 units an hour.  Finally, after he was unhooked from all the machines and moved out of the ICU, he was given an SHOT!

He said they gave him a choice and he chose tummy.  He told Sweets all about it and told her that the needle looked just like hers.  And that he wasn't scared because he knows how brave she is and how he's seen her (and helped her) get shots before.

She thought that was super cool!

I thought it was super cool, too!

I LOVE that insulin is being used not just to keep people alive - but to promote faster healing and all around wellness after surgery.  I love that it's being used out of the world of diabetes. 

It just goes to show... Insulin really is a wonder drug!  It will always be my liquid gold!



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Walk to Cure 2011

Monday, September 12, 2011

Our JDRF Walk to Cure Diabetes is on September 24.

Here is a sneak peek at this year's video...



And these are our shirts!

Of course, the shirts have her actual name on them!  The font is going to be slightly different - but this is the shirt!  I LOVE, LOVE, LOVE them!

My good friend, Steve Reed, designed these shirts.  Steve and I have been friends practically since birth.  He's a super talented illustrator.  He's illustrated quite a few Spongebob books in addition to lots of other incredible things!  You can see more of Steve's art by clicking HERE.  Sweetpea loves Steve to pieces and thinks of him as HER friend!  To see pics of Steve and Sweets and the shirts he designed for us last year, click HERE.

The walk is always a special day...  It's a very special day for everyone involved.  It's very humbling to see so many people join us in honor of Sweets.  We are blessed to have many friends and family who support us - either thru raising money, attending the walk, or both!  We look at the walk as a day to honor Sweets and everything she goes through.  It's day for her to be QUEEN (not really sure how that is different from OTHER days but...!).  And we feel so lucky to be able to share it with our online family, too!

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For the Newbies, the Veterans, and Everyone in Between: Words of Wisdom

Friday, September 9, 2011

 In the past few weeks, I have gotten some emails from some newly diagnosed families.  Just yesterday I got an email from a close high school friend saying that her neighbor's child was just diagnosed. 

It breaks my heart.  Each and every time I hear of new diagnosis. 

Because I KNOW.  I was there.  I will never forget it.

I clearly remember those days shortly after diagnosis.  The fear.  The pain.  The numbness.  The exhaustion. 


And I wondered .... when it is going to get better?  When it this going to get easier?  WHEN???


And now that it's been over 2 years since those days...  I know the answer.




I saw this on Pinterest (my new addiction!  You can click to follow me - but I warn you, it's mostly school stuff with a little D thrown in.).   I got chills.  How true is this?  It says exactly what I've been trying to put into words.


It really never does get easier. 


It still is hard to hold your child down.  Or watch them cry in pain.  It still hurts to see the effects of a low or a high.  It's still scary.  It's still hard. 


There is not one magic day where you wake up and *POOF* life with diabetes becomes a piece of cake.


Sorry.  Doesn't work that way.


It never gets easier.  YOU just get better.


You might not believe that right now. 


But I swear to you... it happens.


Not that you become some perfect pancreas that never makes a mistake.  Sorry.  It doesn't work that way, either.


You just get better. 


Slowly. Each day.  One step at a time.


Every time you calculate a bolus. 
Every time you give a shot.
Every time you swag a meal.
Every time you correct a low.
Every time you fiddle with a carb ratio.
Every time you do a new pump site.
Every time you change a basal rate.
Every time you correct a high.
Every time you rage bolus.  Or combo bolus.  Or both.
Every time you deal with an illness.

You learn.  You live.  You move forward.

And you get better.

You get better at being the stand in, the replacement for an organ that decided to up and quit and go on vacation and just plain old walk off the job. 

It's a job where you will NEVER be perfect all the time.  So try to get used that fact now.  Never ending pancreatic perfection is IMPOSSIBLE.

Don't expect it to all happen at once.

But one day you will look back and you will think, "HEY!  I kind of know what I'm doing!" 

You may not be quite as scared.  You many not be quite as apprehensive.  You may not be quite as tired (ha, ha - ok so maybe you will be ...).  You may not be quite as uncertain. 

YOU CAN DO THIS.

You may think that you can't.  But you CAN. 

I swear to you. 
It will happen.

You will still have your days.  Your moments. 
You will still cry.  You will still hurt.  You will still grieve.
You will still second guess yourself.  You will still make mistakes.

But YOU will be better. 

Diabetes does change you.  But not all in a bad way.

Reach our for the support of the online community (and your local IRL community, too).  We need each other.  We are stronger together. 

And just know.... 

It may not get an easier.  At least not all the time.

But YOU will get better.  So will your child.

And that is priceless.

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Good Life

Thursday, September 8, 2011

It's easy to get caught up in the crap that surrounds life with diabetes.

It's easy to get lost in the numbers.  Easy to blame ourselves for things out of our control.  Easy to feel isolated and alone.

It's easy to be jealous of those living lives where weighing their child's food is a totally foreign concept.  Easy to get angry at insensitive comments.  Easy to get overwhelmed at the never endingness of it all.

It's easy to feel hurt.  Sad.  Scared.

It's easy to let lose ourselves in this life.

Some days the tears flow easily.  The pain is close to the surface.

ESPECIALLY if you or your child has been recently diagnosed.

But...  that's not every day.



And I just want to say that THIS IS A GOOD LIFE.

Even with diabetes.  Maybe because of it.

For those of you who are still new to this journey (and even those of you who are not)...  I really want you to know this.  This is STILL a good life.

We all have our days.  Our moments.

I think that's normal.  I think it's healthy.

But diabetes did not ruin my life.  And it didn't ruin my daughter's life.

(Actually, I'll be damned if I let it ruin her life.  Not if I have anything to do with it....)

Living life with type 1 in the mix has changed us, that's for sure.  But it hasn't ruined us.

We laugh.
We love.
We smile.
We joke.
We go fun places.
We do fun things.
We play.
We are active.
We catch fireflies.
We wish on stars.
We swim and soak up the sun.
We enjoy the feel of an autumn breeze.
We pick pumpkins.
We go trick or treating.
We celebrate.
We play in the snow.
We travel.
We dance.
We grow a garden.
We pick flowers.
We snuggle.
We praise.
We are confident.
We are strong.

We do everything that any other "normal" family would do.  There is NOTHING that diabetes has kept us from.

We make it possible. Because it IS possible.  Anything is possible.  Even if you have diabetes.

And if it's possible for us - it's possible for YOU.



No, diabetes didn't ruin our lives.  Nope.  We still have incredible joy.

And just maybe - we experience that joy MORE - because of diabetes.

MAYBE.... it takes experiencing great pain to help you fully experience great joy.

Diabetes can do many things.  But it can not steal our lives.  It can not steal joy.

This is a good, good life.



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Saving Lives

Tuesday, September 6, 2011

How many times a day do you save your child's life?

What a crazy thought.

Here's where it came from...

The other night, Sweets was running a little low.  She had a low while in the bathtub scrubbing away all the grime collected from a day hard at work in school.  She was in the mid 60's.  So not too low... She was thrilled to have a juice box in the tub!  What a treat!

After her bath, it was time for bed.  I tested her and she had come up into the 90's. 

I lay with her (or J does) until she goes to sleep.  I don't mind this at all.  It's a special time made for snuggles and books and sharing about the day and asking a million questions. 

Soon she had fallen asleep. 

I checked Dex.  It was saying right about 100 and holding steady.  Perfect.

But for some reason, I decided to test again. 

She was 37.  (Yes, I double checked.)

My heart sank into my toes.

I HATE lows that happen right as she falls asleep.  It brings back bad memories.  And it's awful to wake her up enough to treat the low. 

For some reason, she can suck a juice box down in 3 seconds flat in the middle of the night without ever cracking open a peeper.  But if she's just gone to sleep....  she is next to impossible to rouse.

I turned on the light.  I sat her up.  I managed to get her to drink.  And a sighed a BIG sigh of relief.

But as I sat there with her...  Holding her close...  Pressing the straw to her lips... Encouraging her to drink...

There it was.  The thought.

"How many times a day do I save my kid's life?"

Ok, maybe that is bit dramatic.  (I AM known for my drama queenish tendencies, right?!?)  But then again... not really. 

What if I hadn't tested her?  By the time Dex alerted us, how low would she have been?  Would we have had to use the glucagaon again?  Would she have had more seizures?  Another trip to the ER?  What if....  What if this time we weren't so lucky?

Most of the time, we treat this D life and the things it throws at us like we would treat an unexpected trip to the grocery.  Just part of life. 

Most of the time, we look at this life as just the way it is.  It's our normal.  We are used to it.  Most of the time, it doesn't ruffle our feathers.

And we have to.  We HAVE to look at it like that. 

We HAVE to keep our eyes focused on the bigger picture. 
We HAVE to keep a smile plastered to our faces.
We HAVE to look for the positives.
We HAVE to take it as it comes.
We HAVE to be strong, tough, smart, dedicated, decisive.
We just HAVE to.

Because we will not live in defeat or despair.  No, we will thrive.  So will our children.  We will choose joy.  We will love.  We will LIVE.  Despite diabetes.  Or perhaps... because of it...

But sometimes....

Sometimes, for split second, we SEE. 

We SEE how crazy this is.
We SEE the implications and consequences of one little mistake.
We SEE that we have very little control.
We SEE that we can do everything right and it might not matter.
We SEE that other people don't live like this.
We SEE that we never imagined that this would be our lives.
We SEE that it's scary.  And it hurts.
We SEE that we are forever changed.

Those split seconds... they stop us cold.

And they makes us so very thankful that we even have the opportunity to save lives.



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The Stuff They Don't Tell You: A Guest Post

Thursday, September 1, 2011

 Today  I have a guest post from Tracy Brokmeier, MOM of the Diabetes Dude!  Tracy wrote this incredibly inspiring piece on facebook... and I just knew that I wanted to share it with all  of you.  Because it is just so incredibly true!  

Thanks, Tracy, for letting me post your words here!  You, my friend, are awesome! 

The stuff they don't tell you.

October 3, 2007, D Day.

Not THE D Day, but OUR D Day.

The day Diabetes decided to come into our lives and change everything.


I'm not going to fully go through Noah's diagnosis story, because many have already read it, and if you haven't, I refer you to his website, www.thediabetesdude.com .  To summarize, we went through a long battle for months with his pediatrician about what was wrong with him.  They kept telling us he was fine or diagnosing him with something else, but the latest diagnosis and treatment never seemed to rid him of his symptoms and he eventually wound up in DKA at Children's Hospital of Boston where he was finally diagnosed with Diabetes.

When your a freshly diagnosed D parent, in the hospital with your little one, your head is completely spinning.  The nurses and doctors have so much to teach you in so little time.  You leave there with lots of information, stacks of paperwork, many of which you will never have the chance to go through, and something just short of a Rolodex of new numbers and contacts to add to your address book when you get home.

However, there is also the stuff they don't tell you.

Yup, you left the hospital without very important D info, I guarantee it and I will stick my tongue out at you here.  :p

The stuff they didn't tell you is just as important as the stuff they do tell you, only you have to find it out on your own.

For me, the stuff they didn't tell me was the huge change that Diabetes would make on my family.

They didn't tell me that I was going to go home with my D child and have endless sleepless nights, not just because of highs and lows, but because of the emotional strain it puts on a parent.  I constantly find myself waking up in a panic thinking "what was his number before he went to bed and was it enough for the night".

They don't tell you that you may one day wake up to find you've slept in a little and you completely freak out as you run to your child's room, tripping over their toys, just to be sure that they too just wanted to "sleep in".

They don't tell you about the days when you will feel generally sad for your child because they had to miss out on a sleepover because you aren't comfortable with leaving D up to another family.  Not that you don't trust them, you just wouldn't want to have to give that huge responsibility to anyone else.  Let's face it, D sucks, but it's your life so you deal with it.

They also don't tell you that D will effect your other children in a way you may never know.  That the littlest ones in your family will also learn to count carbs and weigh and measure food, not because they have to, but just out of habit because they too want to help their older brother or sister.

They don't tell you the emotional stuff that D has on a sibling either.  The fact that the siblings want to do anything they can to help the kiddo with D, but are also torn because they somehow wish that one day, their life could just be, well, "normal" again.

They don't tell you that D is going to steal the lime light, almost always, the recitals, the concerts, the important moments at school, the holidays, the vacations, and the birthday celebrations, not just of the kiddos with D but the rest of the family too.

They don't tell you about the strain that D puts on a marriage, between the financial stuff that goes with D and the emotional stuff.  Not being able to have time for just the two of you, because somehow D always seems to make it's way into the conversation.

They don't tell you that you are going to forget telephone numbers and dates and other important information because D wants to take over your mind with carb counts, blood sugar readings, and appointments.

 The most important thing, to me anyway, that they don't tell you, that every D family should know, is that you need support.

Not just support from family, but the support of another D friend, or better yet, a D family.  I can't begin to explain the feeling of knowing that someone else "just gets it".  I truly love the fact that every member of my family has been able to find a friend that "just gets it".

My D kiddo has friends with D so they both know what each other is going through.  I don't have D so I could never really know exactly what he goes through, but it warms my heart to know that he has someone he can talk to who does.

My other kiddos have been able to find a friend in a D sibling who understands those days of just wanting a little normalcy without D stealing their moment.

I love the fact my husband and I have been able to find other D parents that we feel comfortable enough to talk to at any time.  I love that with them, I know I can talk about pretty much anything from regular kids being kids stuff to D stuff, to parents of D stuff.  They have my back.

Everyone deserves to have that D friend, their counterpart of another family, that will understand it.  I love my friends without D but I love my D families even more.  It's a bond that nobody will ever understand unless they too have to endure their own D Day.

So to close, I would like to say that today, I punched D in the face and kicked him in the groin, not literally of course, but I feel like I beat him, at least for today because I found out stuff about D that they didn't tell me.

  I won today D, so there!


Home Team: 1 Diabetes: 0


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