Stand!!

I was listening to a song by one of my favorite groups today and really listening to the lyrics.  So much so that I went specifically to a website to find them and be sure I had them right.  I have been trying to get myself out of the stress and negativity of all that is going on in my life lately, that I need some pick me ups!  This song struck a cord in me today.  The song is called "Stand" by Rascal Flatts.  Here's the video of it...


Some of the lyrics are:

Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take
On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand, Then you stand

I am feeling like I need to wipe myself off and take a stand.  A stand for me.  A stand for Charlotte.  A stand for all the children and adults living and dealing with T1D!  So, I am going to attempt to raise a much money as I can for the Juvenile Diabetes Research Foundation (and maybe win Charlotte a new bike in the process).  So if you are reading this now and you can STAND with me, please consider donating to our JDRF Walk for a Cure.  Click here and you can read more of our story.  Any amount will help us reach our goal!!!

Stand with me!  For Charlotte!  For my family!

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place

Support!

In the last month or so I have been thinking a lot about support and help.  For the most part, Gordon and I don't really ask for help.  We are a strong team (most of the time), and we just try to figure things out ourselves.  T1D has thrown somewhat of a wrench into that for us.  We have been struggling to find the balance between everyday life and diabetes.  I mentioned to a good friend to think back to when her kids were little...she has three...and think about them 6, 4, and 2 years old.  Then think about the oldest one, who was the most self sufficient, now needing almost as much care as the baby.  It's crazy.  Both of us working very demanding jobs, the kids going to all their activities, school, and daycare.  It is almost too much some days.

So many people will read this and say, "we've offered to help", or "what can we do to help", and our answer is always the same.
 
We don't know what we need. 
We just need support. 

So what is support?  What does that mean?  Even as I am writing this, I don't know how that should look. 
Support or help...what do we need. 
Both, I guess.

There are days that we are good.  There are days that are just ok.  And there are days that are not good at all.  My head hits the pillow and I am so exhausted from all the emotion and stress that I just can't even think anymore.

I know some people will read this and think, "it's Type One Diabetes, it's not Cancer"  and while that is true, this is my life and the life of my little girl forever.  That has been a very tough pill for me to swallow.  I need to feel that it's ok and I don't.  I still want it to go away.
It is time to reach out for support.  It is time to reach out for help.  We need it.  And the first step is admitting it.  :)
I started writing this post a few days ago and now reading it back up to this point, I think I have to realize that support and help looks different to different people.
I have family and friends who check in on us often.  Either calls, emails, FB messages, or whatever...they check in.
I have other family who want to do more.  They want to be the Type 3's with us.
I have friends who every once in awhile will text or call or something and just say three simple words "Thinking of you" or "I miss you".
I have co-workers who whenever they think of it, ask "how's Charlotte doing?" and then inevitably the next question is "and how are you?"
We have gone to support groups.
We have had other families, who have been dealing with T1D longer than us, reach out to us.
And still there are others, who I know are thinking of us and caring for us even if they say nothing.

Support.  We need it.  We have it.  It makes things easier. There can never be enough.  We need to stop being so proud and ask for it.

Thank you to all of you who are reading this and offering your support in many different ways.  We are doing ok.  Today.
 

That's My Type!

 In this new reality of Type 1 Diabetes I have been reading a TON!  Books, articles, research, and even other blogs.  I found one blog that I started subscribing to that is written by a Mom of a little girl with T1D.  She has some great stories and insight that I haven't found anywhere else. 
Anyway, in one of this woman's archive posts I found another blog.  This is a blog written by a man with T1D.  He is in his late forties, I believe now, but has had T1D for years.  One one post he and his son had a You Tube video of themselves singing a song they had written together for World Diabetes Day.  It was about all those people who care for those with Diabetes.  He refers to them as Type 3.  His song struck a cord in me.  It says so many of the things that I have been thinking and feeling for the past two months or so.

I was thinking about this song tonight as I checked Charlotte's blood sugar before she went to bed.  Thinking that most likely we would have to recheck her again in the middle of the night.  Interrupting her peaceful sleep.  I started thinking about all the nights that Gordon and I can't sleep until that in the middle of the night blood sugar check. 
We will sneak into her room, turn on the light, she doesn't stir...she is sprawled out on her bed, with her Hello Kitty or puppy in one arm, and the other arm hanging off the bed as if she knew we were coming.  Palm up and fingers relaxed as if they were already in the position for the check.  Almost immediately after the test, she would curl her arm in and hug her special friend.  She barely stirred.  Not even one minute of sleep interrupted. 
Telling her the next morning that we tested her, she doesn't even remember or even believe us that we did our midnight test!
I feel like the more the burden I can bear, the less she has to.  There is time for that.  In a few years she may be able to count carbs and give herself insulin.  In just more than a decade she will be living on her own, away at college.
But for now it is my cross to bear.If I can do midnight finger checks or count all the carbs she will consume in a day, without her having to worry or even think about it, I will.  And she doesn't need to know.  Not yet.
Type 3.  That's my Type.
There was a quote from an article describing how a duck swims:  "everything looks smooth above the water, but below the surface the duck's legs are paddling like crazy."

That's exactly how it is being a parent of a child with Diabetes.  That's my Type.

It is amazing what we parents do so that the burden falls on us and not our children.  It is amazing the knowledge we gain to literally keep our children alive. 
We somehow make it look effortless to outsiders.  Other parents see our kids and just see another kid.  They don't see all the behind the scenes that go on.
We are sleep deprived, we are stressed, and we are constantly thinking about Diabetes.

We do it.  We have to.  We are Type 3.  That's my Type.  Now back to the song.  There are lyrics here on George's blog, along with his backstory.  But the lyrics that hit me the most are:
                                 Even though I know I'm prepared
                                 There's a part of me that is so scared

I cried.
And cried.

Watch the video.  But grab a tissue. That's my Type.

The Highs and The Lows!

Living with diabetes has it's highs and lows, not just in blood sugar numbers, but in so many ways. The most obvious high/low, is everytime we check Charlotte's blood sugar.

Will it be too high?
Will it be too low?
Will it be just right, and is it just right for that time of day?

We don't want her too high, and we don't want her too low, we want her just right! But what does just right mean? Well, for those of you reading who don't know a lot about Diabetes, the "normal" range is 70-180. That is the ideal range. But...the ideal range, right before she is going to eat a meal, could be the lower end of that 70-180. Or right after she eats, ideal range could be a little higher as her body and her insulin processes the food. It is crazy! I can feel myself, holding my breath waiting for the count down on her meter to tell me the number,
5
4
3
2
1
or once 1pm hits on a school day...

I find myself checking my email every minute until the school nurse is able to send me the number.

Stress!

We have had some real lows, and just recently a high that was the highest it has been since we left ICU. When I say low, I mean 58! And when I say high, I mean 345! It is crazy to me how her little body can be under so much stress of blood sugars that change so dramatically in just one day or even a matter of hours. Highs and lows!

Now, like I mentioned the blood sugar numbers are not the only highs and lows that we are dealing with. A high could be her Sunday School teacher saying to me "now I have to ask, is she like a different kid"? So many people in her life have made comments to us that she seems to have come out of her shell, or just a little more outgoing. She is not an extremely outgoing kid, but now that she feels better, she is more her true self. If that's not a "high", I don't know what is!

A low could be when she wants to have donuts, or a cupcake like her friends or something and we have to be the ones to tell her that she can, but has to have a shot of insulin in order to have it. I think that is a low...telling a six year old that she has to have a needle in order to have a treat. It stinks. low!

We are trying to focus on the emotional highs and not the blood sugar highs. We don't want to focus at all on the lows.

Everyone and everything has highs and lows. In diabetes there are going to be highs and lows. They don't necessarily mean we did something good or bad, they are just what they are...highs and lows. It's how we deal with them that counts. Deep breath and deal with it.

So today we are dealing one day at a time. One step at a time. One hour at a time. One meal at a time. That's what we are doing. And that's the best we can do.

We are ok.

Type One

So, it's been forever since I have been on this blog. And with everything currently going on in my life, I thought I should write again...if for nothing else, to find some strength in the small things!

On February 19 2012, one of the darkest days I have ever known! I woke up for some reason with my precious little girl "sleeping" right next to me in our bed, I tried to wake her up. Why? I don't know except that I thought she sounded funny.



And there it began...
She wouldn't wake up...

Her hands were cold!

Her cheeks were cold!

And nothing I did "woke" her.

Even now typing it, it makes me cry!
From that moment on, our lives have changed...Charlotte has been diagnosed with Type 1 Diabetes.
The trauma of that early morning, still lingers in my mind. I can't shake it. I can't even describe it! Even if I tried I think that anyone reading this would never truly understand the fear and total dismay we felt.
We have learned so much about Type one Diabetes in just one short month, that I almost can't believe it is all true.
Charlotte is such a trooper. At six years old, she has had to deal with so much in her life. From anaphylaxis from tree nuts and an emergency room visit to now this her second emergency room visit. It is all so crazy!
Now our lives consist of counting carbs, insulin doses, and blood sugar checks. I talk to Charlotte's school nurse (who has been wonderful by the way) a couple times a day. I talk to the endocrinologist a couple times a week. It is like a full time job. Plus I have a full time job, and two other children, and a husband, and a life...

I am overwhelmed.

Having to give your child shots is no where near fun. Even though Charlotte doesn't give us a hard time about it. What six year old do you know who likes needles. She takes insulin shots four times a day. And her blood sugar is checked at a minimum of six times a day. It is crazy. My poor baby. I just wish it would all go away. I keep saying that, but I know in my head that that is not possible. But heart is where it hurts...

I have reached out to various people and supports, which are all good in their own way, but I think I need to just go through this grieving process.
Yesterday, when I was speaking with the social worker in our endocrinologists office, she said something to me...
she said, "It's is no wonder you are feeling like you are, Charlotte was critically ill. She almost died."

"almost died"

"almost died"

Oh my God! She is right. I know that is true, but hearing it said out loud was like someone punching me in the stomach. I don't think I have still recovered from hearing it, nevermind living it.

Everyone says...Now you know how to deal with it. Or now you know what it is. I know all that, but it is not making it easier. We know how to give insulin shots and test her blood, but really how do I deal with it? How does it get easier? When does the extreme worry stop? Will I ever be ok with all that happened?

I don't know.

So, I put one foot in front of the other, every day. I thank God that I did try to wake her up that morning. I thank God for all the support of amazing family and friends. I thank God for everyone on her team...from the doctors, nurses, to the pharmacist, to the nutritionist, to her friends at school, to my friends and co-workers, to my amazing family, to my rock...my husband.

It's going to be a long road. But, like this blog forces me to do, I will still try to find strength in the small things.

Like Charlotte's laugh.
Her smile.
The way she hugs me.
And how I could never live without her. She holds me up. She makes me strong.

I will find my strength in her!