Tuesday, February 21, 2012

How am I doing? Not great

I've been wanting to write this entry, but have been hesitating. 
I'm afraid it will make me look weak, and well, I feel weak enough on my own, I don't really need the confirmation from others.
However, when I changed the name of my blog, I promised to keep things real.  I promised to let that weakness show through. 
So, here we go. 
This is one of the hardest things I've ever had to do.  This whole diabetes thing, I mean.
It is so so hard.
The thing is, I know that no one understands that.  Unless you've been where we are, you have no clue.  People think diabetes can be controlled with diet and exercise.  And while that's true in type 2 diabetes, it is not true in type 1.  I know I said it in my last post, but no amount of exercise...no perfect diet...nothing we do will make her not dependent on insulin.  Her body doesn't make it. 
Her body has decided that it would be fun to destroy her pancreas.  I'm having such a hard time with this.  I don't understand it.
CHD makes more sense to me than this.  I mean, the fact that a heart ever forms normally is the thing I don't understand.  It's so involved.  It makes sense that it doesn't form perfectly every single time.
But this....I don't understand this.  How does it happen that one day your body just up and decides to start attacking itself??  I don't understand!
And the fact that I don't understand is making it so hard for me to cope with this.  Maybe cope is the wrong word.  I mean, we get through, we do what we have to do.  We check blood glucose levels all through the day and night.  We inject our daughter with insulin at least 4-5 times a day.  We count carbs.  We watch her behavior, trying to determine if her glucose is going too high or too low. 
We do these things, we get through, day by day.  What I'm talking about it coping emotionally.
I am having an incredibly hard time dealing with the fact that this isn't going away.  Ever.  Sure, there's talk of finding a cure, but who knows when that will be.  Right now we know it's not going anywhere.  This will be my sweet, sweet child's reality, forever. 
How does one accept that?  How does one deal with that knowledge?  Other than just doing what we do?
But yeah, it is so hard.
Days like today, I just want to curl up in bed and never leave.  Try to wake up from this nightmare.
After dealing with a day of low sugars all day yesterday, she woke up wanting daddy.  Well, daddy wasn't here.  She had a huge meltdown, didn't want me to check her sugar, didn't want to eat, just wanted daddy.  Finally, I was able to convince her that she would feel better if she ate.  And she did. 
I go crazy trying to figure out why her BG (blood glucose) levels do what they do.  For no rhyme or reason they will shoot too high, or drop really low.  I don't understand any of it.  Honestly, I'm a pretty smart cookie, but this disease has me so confused.  I hate the feeling. I  need to understand these different things.  And yet, I have a dear friend whose daughter has type 1 as well, who has been holding my hand through this, and who keeps telling me that there really is no reason for anything this disease does.  She says the sooner I accept that, the sooner I will stop going nuts.  It's in my nature to want an explanation though! 
So yeah, I'm having a hard time dealing with this.  I know, in time, it will get better.  Right now, it sucks.  Right now, I can't even say the words, "Emily has diabetes" out loud without breaking down. 
I guess if all this makes me weak, then it is what it is.  I feel completely weak and broken right now.
I just wish my girl would get better, and I know she won't.  That's the most helpless feeling in all the world.

Sunday, February 12, 2012

Update on Emily

Since I last wrote, I am happy to report that we are home.  Emily is doing much better.  We are working on getting all her sugar levels regulated.  Who knew that this was so much trial and error??
Who knows much about Type 1 Diabetes?  I sure didn't.  I feel like I still don't.  But I'm learning quickly!
For example, did you know that when diagnosed, 70-80% of the cells that make insulin have been destroyed?  And that within a year, the rest will be destroyed?  Her pancreas will never make insulin again!  I had no idea that T1D was an autoimmune disease!  That's a huge difference between type 1 and type 2...type 2 can be somewhat controlled with diet.  Type 1, even if you are eating the healthiest foods, you still need insulin to get the sugar to the cells.  No "perfect" diet is going to give you that insulin.  You HAVE to have injected insulin. 
It's all so crazy to me! 
And where does it come from?  They don't know!  Another one of those things that no one knows the origin of that just so happened to hit my family!  Crazy, crazy, crazy!
So, we are trucking along.  Em gets at least four injections a day, sometimes more, all depending on her glucose levels.  Today was a happy day, with only four!
She has hated the injections....who would like them?  She is getting better though.  Someone told us a trick, which is helping tremendously.  We freeze quarters, she puts them where she wants her injection, it numbs the skin a bit, and the injection doesn't hurt as bad.  She then gets the quarter.  I made a huge deal out of it and called them magic quarters.  Now she thinks they are magic, and while she still says she's scared, she doesn't cry anymore.  
I can't imagine how confused she must be.  There's no way she can understand any of this.
Earlier tonight, Natalie was laying on the ground and Emily was being her doctor.  She told Natalie that she was at the doctor because she had diabetes, and that she, herself, got diabetes when she was little.  She explained to her that she needed "shots" and gave them to her.  She also told her of the magic quarters and that all she had to do was say "brrrr".
She amazes me.  She is so brave.  She tells everyone, "I had to go to the doctor because I have diabetes."  It breaks my heart to hear her say that.  To me, it's still surreal!
My family has been through so much.  And through it all, I still know that God is good. 
I know some people think I'm crazy for thinking such a thing, especially after everything we've endured.  I know, though, that He has a plan for us.  It may not be a great plan!  It may just be a plan to help our children learn to lean on Him, no matter what.  Dillon told me last night that he knows God has big plans for our family.  I'm not so sure.  I certainly don't see us as the type to be out there telling the world our story, impacting loads of people, but if we can impact our children, it is all worth it to me. 
I'm pretty sure, the plan won't be revealed to us, this side of Heaven, and I'm ok with that also.
In closing, just a cute thing that happened in the hospital. 
There were loads of doctors coming in and out, everyone talking with Emily and us. 
Someone was asking her about her brothers and sister.  They asked who her favorite brother was.  She looked at them like they had three heads, and said, "all of them, I love them all!" 
And that's the type of girl Emily is.  She loves everyone (except by the end of the hospital stay she did say she didn't really like people she didn't know..of course not, they all poked her!).  She is so silly, and such a good big sister.  If you know her, you are blessed.  I don't know how we got lucky enough to be her parents.  She's one amazing little girl.

Wednesday, February 8, 2012


Did you know that this week is Congenital Heart Defect Awareness week?  Well, it is. 
I sit here and think about how I became a part of this community.  It's a great community of people, just not one I ever thought, in a million years, I'd be part of.  And yet, here we are.  We've been here for eight years.  And we've survived eight years! 
In the middle of the week that so many CHD parents are so passionate about, we find ourselves thrust, head first, with no warning, into a different community. 
One that, right now, seems just as frightening.
Another chronic illness community.
Another community I never, in a million years, thought we would join.
A couple months ago, Emily started wetting the bed.  We weren't sure why, but finally bought her some Goodnites because she was wetting the bed nightly. 
Then, she started not making it to the toilet in time.  I thought she was just being totally distracted for whatever reason.
Over the last couple weeks, it has gotten increasingly worse.  To the point of needing to go to the bathroom about every half an hour. 
Of course, the first assumption is a UTI, but she said nothing hurt.  And while she had the urgency issue, she was peeing a LOT. 
Yesterday, we hit a new low.  She was going potty all day long. 
On Monday, I had made her an appointment with the pediatrician, but they couldn't see her until Thursday.
Last night, she was up all night, needing to go to the bathroom.  Finally, around 5 am, she fell asleep and just peed in her goodnite.  By 8 am her goodnite was completely soaked through and the bed was soaked as well.
I took her to the ER, because I knew something was very wrong.  They took us right back.  The first thing they did was test her blood sugar.  She hadn't eaten since last night, and her sugar was 298. 
After running several more tests, they told us Emily has Type 1 Diabetes.
I think I'm in shock.  I know nothing about diabetes.  Nothing.   It all seems so scary right now.  I know we will learn to live with this, but today has been rough.  So many finger sticks and blood draws and IVs and insulin shots.  By the time I left tonight (Matt is staying the night with her) she was screaming bloody murder when they gave her her shots.  She is so scared, and this must all be so confusing to her.  I want to take it all away from her, but as we know, I can't.
And so I sit here, wondering what lesson God needs us to learn.  What we are missing.  Wondering when we will get it right!
And I also am wondering what the diabetes community is like.  I guess I'll find out soon enough.
Sweet Emily with her new diabetes bear, Rufus.  He has owwies on all his injection sites.

She was soo happy to see Natalie.  All day she kept saying, "I NEED to see my sister"
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