Life for a Child

Saturday, July 31, 2010

Happy Anniversary

Six years ago today, J and I got married!







If you've been reading my blog, you already know that J is a wonderful husband and father. You know that he is every bit as capable in handling diabetes as I am - and that he does handle it, every day. You know he takes good care of his girls and loves us both to pieces.

So... today I thought I'd tell you the story of how "we" came to be....

Go get some popcorn and a drink. Get comfy. Here we go...


Let's go back to the Spring of 2003.


I was part of a prayer group that met once a week during lunch at my school. The ladies in this group are all wonderful and we always had a LOT of fun together. They are also some of the most kind and caring people I have ever met.


One day after school, one of the ladies in the group came into my room holding a magazine. She said that didn't know I would be interested in this... or ready for this (I had just broken up with a boyfriend).... but she saw this advertisement and thought of me. It was an ad for eharmony.


I thanked her and took the magazine. I didn't think much about it. But later, I looked at it again. And I thought... "why not?". So I registered.


In the meantime, I had been reading a book that had a chapter devoted to the importance of being baptized as an adult. I was sprinkled as a baby and never felt I needed to do it again. But this book made a good argument that I couldn't get out of my head. It said something to the effect that while God won't hold blessings back from you, He wants you to obey and by doing so you can open up a whole new world of possibilities. (for the record, I do not think you have to be baptized as adult for it to "count" or something. I think it's a personal decision that between YOU and GOD. No one else.) So, on May 22, 2003, I was baptized. (I tell you the date because soon you will notice a pattern....)

On June 1, 2003, my "match" with J was created on eharmony.


The way eharmony works is that you fill out a questionnaire about yourself. Then it matches you up with people that are like you. Then you can choose to initiate a conversation. The first step is multiple choice questions. You pick five and send them to your match. They answer and pick 5 to send to you. Then you do a "Must Have/Can't Stand" list. You pick your top 10 of each and send it to your match. They do the same and send it back. Then you do short answer questions. You pick 3 (or write your own). Your match answers and sends you questions. Then you move to actually emailing each other. Yes, it IS a process. You can skip all that if you want but I kinda liked it. And hey.... it worked!


By the time J and I were finally emailing each other, summer was in full swing and I was in Florida for 2 weeks. So we talked a lot on email and decided to meet when I got home. By the time we actually met, we felt like we already knew a lot about each other. Which was nice.



We also found that we had a LOT in common. More than eharmony knew.... Like - we both went to the same college. He graduated in June of '94 and I started in August of '94. We both love sports - and even went to the same tennis tournament the same years - and sat in the same section just rows apart. Weird. We both like amusement parks and thrill rides - and he's pretty sure (I think he's crazy but whatever) that my good friend and I were the ones that hooked him up to the bungee ride. We worked there and he was visiting. There's lots of stuff like that.

On July 22, 2003, we met for the first time at a little park close to his house.

On October 22, 2003, we went back to that little park and he asked me to marry him.

On July 31, 2004, we got married in a little chapel on campus.

On March 6, 2006, our sweet little Sweetpea was born.
And you know the rest of the story....


J -


It's hard to believe that it's been 6 years.... It seems like yesterday and forever ago all at the same time. 6 years ago we said "for better or worse". We've had countless wonderful, joyful times. And we've had our share of rough times, too. 6 years ago we said "in sickness and in health". I always imagined that would be when we were old and gray. Not a mere 5 years later. And NOT in reference to our sweet baby girl.


Diabetes entered our lives like a tornado - turning everything we knew upside down. The world it left behind was different and new. And it seems, at times, like everything changed on that day.
What has not changed is my love for you and for Sweetpea. I love you both more than anything in the world.


Today. Tomorrow. And No Matter What.



Happy Anniversary!

Musical Accompaniment: Love of My Life by Jim Brickman and Michael W. Smith (the song we danced to at our wedding) and God Blessed the Broken Road by Rascall Flatts




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Wednesday, July 28, 2010

The Green Eyed Monster

Jealousy.

It struck me unaware and unsuspecting the other day.

We were shopping. And as I turned down an aisle, there was a family. A mother, father, and little girl about Sweetpea's age.

The little girl was drinking a juice box. And no one was watching her like a hawk. No one was making sure she drank it all (or only half). No one was paying attention to juice box at all.

She was drinking the juice box - in the middle of the store, in the middle of the day, without a meal.... because she was..... THIRSTY.

Can you even imagine?!?



And I had a pang of jealousy. Of wishing it were that easy for us.

It's happened at the pool, too.

Being at the pool filled with happy, splashing children.

Children who are eating chips out of bags. NO ONE IS COUNTING HOW MANY THEY EAT!

Children who swim for hours without being watched. And checked. And monitored.

Children who eat lunch. Then go back half an hour later for an ice cream. Or candy. Or chips. Or all of it. Children who graze all day.

Children who do not have to have their swimsuit lifted up so they can be connected to the machine that gives them the medicine that keeps them alive.

Children who play in the sand without a mother worrying about sand in the site.

Children sitting on blankets eating.... FUN DIP! Good Lord, PURE SUGAR! That and swimming is a recipe for disaster.

For US.

Danielle at Where Candy is Medicine just wrote a post about this... Click to read it for yourself.

She talked about how her daughter was looking for the carb count on something she was eating. And how sometimes it makes us D mommies sad that our babies know and think about such things.

Sweetpea does it, too. When she plays in her kitchen, she talks about how many carbs are in the things that she's making. ALL of her babies and animals have diabetes. She plays doctor and gives them shots. She talks about them being high and low. She talks about them needing to be tested. She talks about changing their basal rates and whether or not they need a bolus.

It's cute. It's sweet. It's good for her to play that way.

It's just sometimes hard to watch other children playing so differently.

We went to the zoo. Kids were walking around with ice cream and cotton candy and bags of popcorn. Happily munching away. No one even giving it a second thought. Except for the mom who was thinking, "I hope she doesn't see that ice cream and ask for some. She just got her lunch insulin and it would better if she waited.... I hope she doesn't ask for cotton candy. That would NOT be good."

It's all around us. There's no way to escape it. And most of the time I don't think twice. Most of the time I hope she doesn't see it, I hope she doesn't ask for it, and I move on.

Of course, I NEVER show any of these thoughts to Sweetpea. I don't want her to think about it or know that she's different and it's different for her.

Of course, she already knows. She's not stupid. But if I don't let it bother me, then it won't bother her. At least not yet.

But sometimes..... sometimes the normalcy of drinking a juice box cuts me like a knife.

But what can I do?

I let myself feel that for a few minutes. Then I pull it together and use it as motivation.

Because wishing that Sweetpea could drink a juice box like every other kid - wishing that she didn't have diabetes - is like wishing that I really had green eyes.

My eyes are blue. Nothing will change that.

The closest I could get is wearing green contacts. And like a pump - or an artificial pancreas - it's close.... but not the same.

So I take my jealousy. Or fear. Or sadness. Or whatever.

And I put it toward our walk. And education. And my hope that ONE DAY our wishes will come true.




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Tuesday, July 27, 2010

Cure Story 3

That's the theme for our 2010 Walk to Cure Diabetes!


A week ago, we attended the kickoff luncheon for our walk!

Above are pics of some of the table tents that were placed around on the tables in the ballroom. Does that cutie look familiar? Yup, it's Sweetpea!

I love how creative and excited the folks at our local chapter are! I love how they come up with the cutest things - so focused on the kids! They are wonderful! They work so hard to raise money AND make our little sweeties feel so special!


It was a nice lunch filled with videos and a speaker. Buzz was even there encouraging everyone to get pumped about the walk!

It was a fun day! Sweetpea enjoyed seeing some of the little girls she has met at other functions! I enjoy ALL of it! J likes it too... although he says it kind of depresses him. Being a man, he doesn't spend a lot of time dwelling on the crappy side of D. If he thinks about it, he just thinks about something else and it doesn't get him down. Men's brains are so weird that way. I think about it ALOT. So I enjoy being in a room full other people who all "get it".

One interesting stat I heard that day was that a child diagnosed at 3 years old (just like Sweetpea) would spend over $650,000 in their lifetime on diabetes.

Wow.

We need a cure. Not just because of the expense, of course. Because you can't put a price on your child's eyesight. Or limbs. Or heart. Or life.

We've got our information. We've got our posters and donation forms. We've signed our team up online. We even already have some donations!

We're working on our video and our letter....

We're on track!

I'm excited about this year's walk! I can't wait!

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Saturday, July 24, 2010

Too Close to Home

Yesterday, we spent the "hottest day of the year" at the pool with our good friends.

It was so nice!

My friend and I met while teaching. We started going to the same church. We had kids... she has a 7 year old boy and a 4 year old girl... the girl is 13 days younger than Sweetpea. We hung out A LOT! We always have a great time... kids, no kids, whatever. They moved into our neighborhood about a year ago and live just down the street. Perfect!

On the way to the pool, my friend told me that she was going to take her son in for his yearly checkup and that she was worried because he had lost 3 pounds. He is SKINNY.

She said that she thought it was probably due to the camps and exercise that he'd been doing all summer (and the fact that he doesn't eat a ton).

But you know what I was thinking.

"Has he been going to the bathroom a lot" I asked.

She, of course, knew what I was getting at and the thought had crossed her mind.

She said that he does seem to go to the bathroom a bit but it could be because he's gotten used to them stopping at every restroom and trying to go.

"Wouldn't that be ironic?" she said.

And I started to cry. (Luckily I had on sunglasses)

It hit me like a ton of bricks.

It was a powerful, gut wrenching feeling.

It was like my whole body was screaming, "NO. Not him. Not them. I don't want that for him or their or family. NO. NO. NO. NO. NO."

I'm in tears as I type this.

I told her that I could test him. He's done the fingerpricks before with Sweetpea. And it would be easy to see.....

And then, somehow, we forgot.

We enjoyed the day.

I thought about it again when I got home. Kicked myself for forgetting.

I tried to tell J about it. And I couldnt get it out before I just lost it again.

I'm surprised by the power of the emotion. I hear about kids being dx'd every day. It saddens me. I hate it.

But this was different....

This was visceral. It makes me want to shout, "NO. You can NOT have another child, you stupid, horrible disease. You messed with us. You've got my baby in your nasty claws. NO. NOT HIM. NOT THEM. NO. Please, God.... NO."

I know what this life is like. I don't wish it on anyone. Especially not one of my best and dearest friends.

I'm sure he's fine. I'm sure it's just the added exercise he's been doing. I'm sure he's fine.

I want to just run down the street with my tester and find out! But that would be a bit..... crazy. We'll test him. I'm sure we will.

And I'm sure he's fine.

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Friday, July 23, 2010

The Happiness Fairy

As you know, I've been in a D funk lately.

I don't apologize for it. It happens. To the best of us.

I know it will pass....

I know others are feeling it, too. Maybe it's the moon or something...

Whatever the reason, my parents sent me this cute little email and it made me laugh. So I thought I would share it with you in hopes that it would make you laugh, too!

And, hopefully, it will help us all out of the D fog that we've been in!


Probably not as expensive as insulin or test strips but.....!


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Monday, July 19, 2010

Never Say Never


I never dreamed that I would have a little girl that would play sports.



Dance? Yes.



Gymnastics? Yes.



T-Ball? No.



But...



Little Miss Sweetpea is playing T-Ball!



Sort of.



I'm not sure what brought this on....



She kept getting out the bat and ball she got at a professional baseball game and trying to play in the living room. So we got her a whiffle ball and bat and took her outside.



And she was GOOD.



She can hit the ball. And it doesn't just drop off the tee. It goes. And she can throw, too. The girl has an arm on her.



I was shocked. It seems that she has more athletic ability now - at 4- than I ever did!



She has watched her cousin play baseball. And she thought it looked like fun....



So we signed her up. On her team is one of her good friends... who happens to be the son of one of MY good friends. So it worked out nicely!



First practice.... Sweetpea was ready. Pink princess glove in hand.



She did great! She ran the bases. She threw the ball. She hit the ball and ran to base....



And then, all of a sudden, when at bat she just started crying.



We STILL have no idea what happened.



She tried to tell me that she was just tired and hungry and thought she was low. But she was not.



And once practice was over, she was refusing to play. REFUSING.



It was not pretty.



We tried everything. And nothing worked. Her mind was made up. T-ball was O- VER.



This is what she said.... "Mommy, I thought T-ball was going to be awesome. But it wasn't awesome. It was boring. Can you unsign me?"



*sigh*



First game... we insisted that she go and watch. She did. She refused to wear her shirt and refused to do anything. But she did watch intently.



Now, if we thought that she really did not like it then we would not force her to play. BUT... we are pretty sure that she really WANTS to do it... but for some reason is scared.



This past weekend.... J made her a deal. She REALLY wanted to play freeze tag. He REALLY DID NOT want to play. So he told her that if he played freeze tag, she had to play T-ball. At least in the field. And he would stand with her. And she would get the treat at the end of the game (which she did not get last week because she did not play).



She made the deal.



Everything was going along fine and dandy until game day. She woke up and the first thing she said was, "Mommy. I don't want to play T-ball today. Do I have to?"



I told her that she needed to talk to her Daddy about that. She said, "He's just going to tell me that I can't break the deal." And then, after a reminder about the treat, she decided that she would play.



Game Time....



Shirt ON! One battle down.....



Sweetpea sat with her team although she did not bat. She did go into the field with Ja by her side. This was ok since lots of other parents were out there, too... coaching (and I use that term very loosely) the different bases and stuff.



He said she was SHAKING at first but before long she was having fun.



Game over.... She was BEAMING and said she couldn't wait for next week! Although she still isn't going to bat....!



Thank Goodness!



Snack time....



Ugh.



I had thought ahead and packed a 2 c water pouch just in case. We had promised her the snack so I was going to let her eat it -- no matter what! Although I was hoping that there would be no gummies, which was the snack the week before.



Well... no gummies.



It was.... MARSHMALLOW RICE KRISPIE TREATS!!!



I wanted to yell, "Are you FREAKING KIDDING ME?!?!" But I did not. I let her take one. And.... with slight hesitation.... I let her eat it.



The best part? Halfway through eating it, she said, "Mommy, I don't like this. I used to like them but they taste gross now."



Oh good! Music to my ears! I told her we could throw it away and we would never speak of them again! :)



The only downer part was the juice... the juice that the Mom brought was a water pouch. It was not the kind that we drink so I did not know how many carbs it had in it. The Rice Krispie was marked but the juice was not. I wanted her to drink the juice that everyone else had... but I HAD to know the carb count.



I walked over the snack Mom and asked her if she could please tell me how many carbs it had in it. She told me that there were 8 sugars.



I very nicely said that I needed the number of carbohydrates. She said, "I said 8. 8 sugars. 8 carbs. It's the same."



Now, if you've been reading, you know I have not had the best week and you know I'm not exactly in the best place D wise. So maybe I was imagining the look I got that I was crazy and controlling for even asking in the first place. And maybe I was totally imagining the tone of her voice be condescending and rude. Like I was being so difficult to ask for such information for a child's snack. And how if I were to ask, I should know that carbs and sugars are the same.



Maybe.



But... I know YOU know that carbs and sugars are NOT the same.



I did not point this out. I said "Thank You" and walked away.



She does not know. She does not understand WHY I need to know. How I am not being difficult... I'm just keeping my child alive. Just trying to let her be like everyone else.



I know this won't be the last time something like this happens to me. To us.



But I did not let it ruin the night.



I gave the juice to my friend, swapped out our "free" water, and Sweetpea never even noticed.



We praised her! And we celebrated by going out for ice cream!



I'm paying for it now.... Totally overestimated the number of carbs and we are chasing lows.



But it was worth it! Sitting in the buggy, humid heat. Watching a game where she never got within 5 feet of the ball. Having a frustrating encounter. And even letting her eat marshmallow!





Yup.... totally worth it!

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Sunday, July 18, 2010

Imposter

***WARNING*** Angry blog ahead.... read at your own risk...


Have you ever seen that movie with Leonardo DiCaprio called "Catch Me if You Can"? He plays Frank Abagnale Jr., a con artist, who travels around the world pretending to be people he is not. A pilot. A doctor. A history professor. An assistant attorney general.

That's how I've been feeling.

Like a fraud. An impostor. A pretender.

On so many levels.

I feel like I spend all day, every day pretending to be a pancreas. I don't just "feel" like it. I DO IT. And I have to.

I keep reminding myself that it's a good thing that I'm able to pretend I'm a pancreas. And I know that. But...

It's that I know that I'm just an impostor. I'm not as good as the real thing. And no matter how hard I try, I never will be.

Did you know that bananas can affect blood sugar differently depending on how ripe they are?

Get this...



The glycemic index (GI) of bananas varies depending upon how ripe the
bananas are. This is because a lot of the carbohydrate in green bananas is in
the form of a kind of resistant starch which we lack the enzyme to digest. As
the fruit ripens, the starch is converted into readily available sugars.
One study of "under-ripe" bananas came up with a glycemic index of 30. One of
"slightly under-ripe bananas" that were "yellow with green sections" produced a
GI of 42, while another of "over-ripe" bananas was 52.
From http://www.lowcarbdiets.about.com/


It amazes me that a functioning pancreas can just handle it. Non diabetics don't think twice. But for those of us in the D club.... it's not that simple.
How in heaven's name am I supposed to know this about every food?!? I can't. I simply can not control Sweetpea's blood sugar as well as her pancreas. And SHE will pay the price.

Stupid pancreas. Why'd ya have to go quit on us?




Sometimes I feel like an impostor or a fraud because I try so hard to put a happy spin on everything.

So many people out there that don't know and don't understand....

Thinking we should be "over it" by now.

Thinking we should have her numbers "under control".

Thinking we're overprotective for getting up multiple times during the night to test.

Thinking we're so lucky... because we caught it so early or she got it so young or because she has a pump or that she's healthy and doing well....

We ARE lucky in some ways. But I just can't bring myself to say that we're "LUCKY" because she got D at 3 instead of 13.

I'm GLAD she got it before she was a tween, if she HAD to get it. But I worry that being diagnosed so young will lead to complications down the road.

A kind person commented on one of my last posts that they have had D for 30 years and have no complications. WAY TO GO! I LOVE hearing that! And at the same time... it makes me sad as I realize that when Sweetpea's had D for 30 years, she'll be 33. Younger than me.

By the time she is 6, she will have had D for over half of her life.

That is NOT FAIR, friends. And I am tired of pretending that it's Ok. I'm tired of pretending that I'm ok with that.

I feel like I'm expected to be Miss Mary Sunshine.

When people ask me about diabetes, they don't want to really hear what it's like. They don't want to really know. It would make them uncomfortable if I showed them the holes in her fingertips or the red marks on her rear. They might get "queasy" if I tested her bg and they saw her blood.


I feel like a fraud because I feel the need to put on a happy face and try to show the world that "it's ok. We're ok. You're right....We're SO LUCKY!".

Well.... guess what?!?

It's NOT OK. Doing what we do every day is NOT OK. I AM NOT OK WITH IT. How could I EVER be ok with piercing my child's flesh and seeing her blood multiple times a day JUST SO SHE WON'T DIE?

One of the things I hear so much is that "You're so lucky that she was so young. She won't even remember life before D."

Is that lucky?

Maybe.

Can YOU imagine living in a world where you knew nothing different than poking your fingers multiple times a day? A world where you inserted needles into your skin regularly? A world where you wear a device (or 2) 24 hours a day 365 days a year? A world where you could not eat a bite of food without thinking about the number of carbs, or how many carbs you were going to eat before you ate them, or how this food would mix with that food?

That's her world. She will never know any different.

And I'm not so sure that's lucky. I think it's sad.

I feel this pressure from those "outside" our world to be grateful because she has a disease that is manageable. Treatable.

Don't think for one minute that I do not thank the Lord that my baby is alive and able to live her life.

I do.

But it doesn't mean that I'm ok with diabetes.
I will NEVER be ok with diabetes.

At least not until this...

Musical Accompaniment: The Great Pretender by The Platters


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Thursday, July 15, 2010

The Easy Way Out

A few weeks ago, we took the easy way out.

That's not like me. Not at all. I usually make things more difficult than needed.

But a few weeks ago.... well, I took the easy way out.

Our church was having a field day for the kids during church services.

Sounds fun, right?

Not to parents of a diabetic child.

Especially not when we were informed there would be Popsicles and...... marshmallows.

Dear God!

Popsicles, marshmallows, an undetermined amount of activity and caretakers who know nothing of diabetes?!?!

It's like the seventh circle of Hell or something!

Ok, so maybe I enlarge a little.

Just a little.

Why couldn't they do the relay with eggs instead of marshmallows? Having her eat a marshmallow is suicide for her blood sugar. You might as well pour straight sugar down her throat.

No... pouring straight sugar down her throat would be better! At least she'd spike and fall. With marshmallows she goes high and stays high. And nothing I do fixes it.

So....

We decided to skip church that weekend.

And part of me feels guilty.

Not about missing church.

About WHY we missed church.

To be clear, Sweetpea knew nothing of the field day. Had she known and asked to go, we would have made it work. One of us (probably me - control issues) would have had to tag along to all the stations to supervise. Someone (me) would have had to watch and bolus and time insulin correctly.... Someone (me) would have gritted her teeth as she said "Yes, you can have the marshmallow." with sigh of resignation.

I won't let her miss out on something that she wants to do because of diabetes. But she didn't know..... sooooo......

There's a part of me that feels like I let D win.

But there's another part of me that knows that sometimes we just need a break. Sometimes it's ok to not put yourself in a position where you feel like the outsider, the abnormal family, the overprotective parent... Sometimes it's ok to need a break.

I keep telling myself that.

Because the thing is..... we've got a long time to fight this war.

And maybe I retreated on one battle. But only to get stronger. So I can WIN the war.

And I WILL WIN THIS WAR. SWEETPEA WILL WIN THIS WAR.

Diabetes isn't going anywhere. It's always there. Nagging me. Beating me down. Wearing me out. Wreaking havoc on a small girl and her tiny body. A girl that I love dearly.

So, we live to fight another day.

And fight we do.

Every day. Every hour. Every minute.

Bg check to bg check. Bolus to bolus. Meal to meal.

Riding the wave of the insulin. Watching the spikes and the falls. Counting. Adding. Subtracting. Guesstimating.

Mentally reviewing the options... for dinner, for bedtime snack, for a correction, for a low treat, for activity....

Considering how things affect bg... food, exercise, glycemic index, illness, anxiety, excitement, fear.....

Checking.... midnight, 3 am, 7 am, 9, noon, 3, 6, 9 pm..... again and again and again....

Sometimes less. Sometimes more.

Praying. Hoping. Holding our breaths.

Creeping into darkened bedrooms in the middle of the night. Rolling over a sleeping child. Looking for a finger. Checking to make sure he or she is still breathing.

Drying tears. Wiping blood. Inserting needles. Playing doctor.

Day after day after day after day after day......

So you see?

There is no easy way out with diabetes.

(Musical Accompaniment: No Easy Way Out from the Rocky IV Soundtrack)


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Wednesday, July 14, 2010

Dear Saleslady at Macy's...

Dear Saleslady at Macy's,

First, thank you for finding the shirt I was looking for, doing a price check, and letting me know that it was only $10! Wow! What a steal!

Thank you for your sweet comments about my girl. Yes, we think she's darling, too!

I know that you couldn't have known the kind of day we'd been having... no way for you to know that we've been living out of bags since Saturday because our AC was broken. No way for you to know that we'd been fighting lows all day. No way you could know that this Mommy was in desperate need of a few minutes of alone time (alone time that is not considered going to the bathroom with the door closed). No way you could know that deep inside of me there's anger and sadness bubbling up like a volcano and that I'm trying desperately to hold it together. No way you could know that a little while earlier at lunch the little girl at the next table saw me test Sweetpea's bg before eating. And no way you could have known that the little girl started yelling loudly questions like, "WHAT IS THAT? WHY IS SHE BLEEDING? WHAT IS SHE DOING? DOES THAT HURT?". No way you could have known that although that usually doesn't bother me, today it did.

I know you meant no harm....

And I realize that we kind put diabetes on display in front of you. You didn't see that just a minute before checking out that I had discreetly checked Sweetpea's blood sugar after her CGM beeped that she was low. You didn't know that although the number I got from testing was 154 - standing and waiting for you to fold up the clothing, I got this...'feeling'. This feeling that I needed to clean her hands and recheck. So did - in front of you....

It's a good thing I did. Because on recheck, she was 61. Her fingers must have been dirty.

I never mind talking about diabetes. It never bothers me to explain to strangers this crazy life we lead.

So when you started asking questions, that was fine.

I understand that you know about diabetes. I know what it's like when you find someone that knows about the world you live in. I get that sometimes you need to share and talk about it.

However....

You might want to learn a little about the difference between type 1 and type 2. 'Cause it IS a big deal.

And you might want to watch what you say....

You don't remember?

Let me refresh your memory....

You asked me if Sweetpea had diabetes. I said yes. You commented on her being "so young" and how it was "a terrible thing". You asked if we had a family history to which I answered no. You asked if she was low and I said yes. You told me you had candy bars for sale at the counter, which was very thoughtful. You told me your husband has diabetes and took 2 shots a day. I asked which type he had. You did not know. You then told me that I needed to be "so careful" with this disease. You told me it was "just awful" and that your husband has had diabetes for 19 years. You then proceeded to tell me that diabetes has taken your husbands sight and both of his legs. And you then said "but I'm sure you're a good mother".

I'm terribly sorry that your husband has suffered the complications of diabetes. I know that your life can not be easy.

But lady, I KNOW the complications of this disease. I do not need to be reminded.

TRUST ME.

I don't ever forget. It is what keeps me awake at night. I can't forget. It niggles at the back of my mind every time I test a blood sugar and every time I see a number that is too high for my liking.

And it doesn't matter if I'm a "good mother" or not. No matter how good I am or how hard I try, I will NEVER be as good as the real thing. And I know that no matter how good I am or how hard I try, I can not control this disease. And sometimes, no matter what I do, diabetes wins.

I don't escape diabetes. Not EVER.

And as you so kindly pointed out, my daughter will live with it for the rest of her life.

Not only did I not need to be reminded of the dark side of this disease, my FOUR YEAR OLD DAUGHTER did NOT need to HEAR YOU TALK ABOUT IT.

She does NOT need to know what can happen. All too soon it will become her reality. Right now, she doesn't need to know. And when the time comes, it should be her father and I that talk to her about it. NOT YOU.

She does NOT need to know that diabetes can make you BLIND. Or that you could LOSE YOUR LEGS!!!

Why would you say that in front of a child?!?!

I just thank God that she was busy making the cart into a skateboard and did not seem to hear you. Although, I also know that she hears everything. And the questions might just be forming in her head...

I know you meant no harm. But please... the next time you see a child testing his or her blood sugar.... know that there is not a mother of child with diabetes alive that is not aware of how cruel this disease can be.

Know that we fight this disease 24/7/365 with every ounce of beings.

Know that our hearts are broken, pieced back together .... but still so fragile.

Treat us with care.

And keep your mouth shut.

(Musical Accompaniment: Shut Up by the Black Eyed Peas)

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Saturday, July 10, 2010

A Shot in the Arm

The whirlwind of garage sale weekend is OVER!

Almost.

We ended our sale today. All that is left to do is pack up what we did not sell and donate it to charity.

We are exhausted. It's been a long, hot, wet 3 days!

However.... it was worth it!

We raised.....

drumroll, please......

over $1,000 for JDRF! Woo Hoo!

Many people who visited us were very sweet and donated freely to the cause! I made a big poster about why were donating to JDRF. It had pictures and some facts about Type 1 along with some stats about what Sweetpea has endured with D in the last 15 months.

So... even though my body aches from head to toe - I also feel really good!

We educated people. We raised awareness. We raised money. AND I got rid of a lot of stuff and now have space in the basement!

To end this experience, J and I headed down to a concert - a concert we really wanted to attend because Chris Tomlin was playing.

I LOVE Chris Tomlin! He is hands down my favorite artist. His music gives me chills. I am astounded that he can write the songs that he does. I really believe that God speaks through him.

We have seen Chris in concert 4 times. Twice around here. One in Tampa, Florida. And once tonight!

The last time we saw him perform was in Tampa in April of 2009. Weeks before Sweetpeas's diagnosis. We were in Florida for Spring Break. Just happened that he was there and so we made the drive. It was awesome! And I'm so glad we got to do that because shortly after.....

Well, you know. Our world fell apart.

In some ways the concert tonight felt like coming full circle.

He began with the song "Jesus Messiah". It's the song that is playing first on my playlist right now. And these lyrics really caught my attention...



All our hope is in You
All our hope is in You
All the glory to You, God
The light of the world


That's why I worked myself (and my family and friends) so hard this week.
Because I have HOPE. I truly believe that a cure is possible. And I believe in doing my part to make it a reality. And as I stood there and listened to this beautiful song, I couldn't help but think of the day when a cure IS a reality. And how on that day, it will be to the Glory
of God.

An older man who stopped by our sale said the same thing to us. After talking about diabetes and Avery, he said something to the effect of "We don't understand why it happens. We don't have to. But it's all to Glorify Him."

And then, as if the concert could get any better, he ended his set with
the song "Our God" from the Passion CD Awakening.

It's the number two
song playing currently on my playlist. Listen to the lyrics....
and if our God is for us
then who could ever stop us
and if our God is with us
then what could stand against

Wow.


Tonight was like balm for my tired body. And my aching heart.


It was encouragement. To keep going.


Because it's true.


NOTHING can stop us. Nothing that D throws our way will ever keep us D Mamas and D Papas from fighting for our children. I KNOW us. And I know that until our last breaths we will fight for a cure.


And with God by our sides (which I believe He is), no monster is too big. D might kick our rear ends from time to time. But it won't defeat us. And it won't defeat God.


I don't know about you, but I needed that tonight.


Because I'm just so tired. I'm tired physically. I'm tired emotionally. I'm tired of getting things worked out and then having to start over because the new basal rates and carb factors only worked for a week or so. I'm tired of counting carbs. I'm tired of getting up in the middle of the night. I'm tired of saying NO to food that other children can eat. I'm tired of being different. I'm tired of fighting so hard. I'm tired of trying desperately to hold it together. I'm tired of sticking my child with needles. I'm tired of seeing her blood. I'm just so darn tired! And I've got some anger going, too. It's simmering just below the surface. I can feel it in there. And so far, I've managed to keep it pushed down. But it's there.


Tonight was a like a shot in the arm. A little boost to keep going. To keep fighting. To keep living. To keep loving.

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Monday, July 5, 2010

Purging

We're having a garage sale!

This coming weekend, we are going to have the Mac Daddy of garage sales!

We have sold NOTHING since Sweetpea was born. We still have all of her clothes, toys, pack and plays, (we have 3), highchairs, bouncy seats, gates, infant swing, inflatable pool..... You name it, we've got it!

We also have things (like dishes, furniture...) that we had as "singles" before we got married. We each had houses when we got married so we had to combine two already functioning households.

When Sweetpea was diagnosed, we were still in "negotiations" about having another baby. And we had kept all of our stuff - just in case.

J says that the only good thing about D is that is put us on the same page concerning having another child. I wanted one. He didn't. And now... well, I agree with him.

It's not like D took that dream away from me. It really isn't like that at all.

I was never totally sure another child was in our future. I'm an only - and I've always been cool with that. And I could see us living very happily with our Sweetpea.

And then D happened....

And I know that it's just not in the cards for us.

Part of it is the timing... We are just now getting to a comfortable place with D. And neither of us is getting younger. J thought he was too old a few years ago!

Part of it is money... I'm OUT of sick days. I have NONE. Used 'em all up when Sweetpea was diagnosed and I spent the remainder of the school year at home with her.

Part of it is our personalities... We like structure and order. We like traveling and going and doing. And that is very easy with one child. Even one child with D.

Neither of us wants to add anything else to our plates! We're full, thanks! We're button undone-pushed away from the table- sitting on the couch watching football after Thanksgiving dinner- DONE. (Unless God has a sense of humor... which I know He does... but... it's going to have to be His call.)

So - the SALE.

I've been going through clothing. Clothes have a strong pull for me. I remember each piece. I know where she wore things. I like smelling them. She was a spitter. Reflux for the first year of her life - projectile spitting. So her baby smell is that of Spray-N-Wash.

And I got the point where I was going through recent clothing.

There were the jammies that she wore all winter. One sickness after another. Scarlet fever. Stomach flu. A strange "virus"..... I hate those jammies.

I found the dress she wore at Easter (a month before dx). When she was skin and bones. She looked awful. Those pictures are terrible.

And the pants she wore on the airplane trip home from Florida. The pants she SOAKED in less than an hour. And she had a diaper on. We had to take them off of her and dry them in the restroom with the hand dryer. Seeing those pants turned my stomach.

I can't wait to get rid of it all.

And there was the outfit that she wore the day she was diagnosed.

I'll never forget it.

It was the Gymboree 2009 line with the monkeys on it. The top was white and had monkeys on it and said "Silly Monkey". The pants were jean capris with a braided belt and monkeys on the bottom.

Everyone commented that day on the Silly Monkey thing. All the nurses tried to distract her by asking if she was a silly monkey.

That outfit... I just can't sell it. That's probably really weird, I know. I don't know why I can't let it go. The rest of it... I can't wait to unload. But that outfit is different. It's part of our history. And maybe the reason I don't hate that outfit - like I hate the others - is that although it was the WORST day of our lives - it was also the BEST - because it was the day her life was saved.

So that outfit will sit, along with a few chosen others, in a special box. As a memory.

And although going through those old clothes brought me to tears, I'm ready to purge all that stuff and move forward.

I read an amazing quote today on Heather's blog, Sweet to the Soul. You really should click and read it for yourself!

"Be encouraged. God sees your tears. Cry them, wipe them, feel them, but don't let them stop you. It is possible to cry and walk." - Kelly Minter



I just LOVED this.

Because it says EXACTLY what I'm feeling. It says EXACTLY what I'm doing - each and every day.

Diabetes has not stopped us.

Not even with having another child. Because if we really felt that was the plan for our family, Diabetes would not hold us back.

I might cry. I might weep.

There are times when the memories are too much. Times when I can't stand another shot or finger prick or site change. Times when seeing what D does to her little body makes me physically ill. Times when she's high, or low, or both in the same hour. Times when it's all too much.

Although there will be weeping in this life, the direction in which we weep is what truly matters" - Kelly Minter
(another quote from Heather's amazing blog post)

And so I purge all those feelings through tears (and blogs!).

And I keep on walking. Walking forward.


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Thursday, July 1, 2010

Our Story: Thanks for the Love

When I started this blog, almost a year ago, I had no idea that people would actually READ it!

It started as a way to keep people up to date about how we were doing after Sweetpea's dx.

It became a way for me express all the feelings I have about this disease.

In one of my first posts, I put something like "If you ask me how I'm doing, how we're doing - I'll say fine. But THIS is where I'm going to tell it like it is. I'll be like that old person who when you ask "how are you feeling?" will go on and on with a litany of complaints. In person - I'll say fine. But HERE is where you'll get the real story."

And I found that the more I wrote, the better I felt.

The more I wrote, the more I felt at peace with this life.

And then I met other D Mamas.

And it became more than just me and my computer....

And it was incredible. INCREDIBLE to find other people who "got it". Other families going through the SAME things. Other people who spoke my new language.

And so I read, and I wrote, and I cried, and I made new friends....

And I LOVE it!

My blog is one of my favorite places to go.

It's where I feel like ME.

It still surprises me that people actually READ it! And that people LIKE it!

So I just wanted to say ...

Thanks for reading! Thanks for commenting!

I see you all out there.... reading from places that I know and places that I don't.

I see people reading in the city I live in. I see people reading in other countries.

And I always wonder about you...

Who you are. How you found me. What YOUR story is....

I LOVED that, in addition to my faithful commenters (who I love so very much), I had some new folks introduce themselves on my last post.

If you've been out there reading - I'd love to "meet" you! Say Hi and introduce yourself!

I'm honored that ANYONE reads this blog! And I'm incredibly honored when you read it and you like it and you connect with what I've got to say.

Because it's not just MY story. Or SWEETPEA'S story. It's OUR story.

Thanks for the love!

(Musical Accompaniment: Thank You for Loving Me by Bon Jovi)


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