The final lancet

"It's blue.  A darkish blue.  And it sort of looks like a pen.  Except thicker.  And there isn't a point on one end.  Just a flat surface with a hole.  It should have some white writing on it... I think.  Or maybe not.  It could have worn off by now."

I felt the words tumble out of my mouth, painting a very inadequate picture of what I was describing.

Then I lamely added, "It's what people with diabetes use to check their blood sugar."  Knowing full well that probably no help at all.

"Well Miss Joanne, if we find your item, I will be sure to give you a call straight away." Her sweet, southern drawl did nothing to make me feel better.

You see, as you probably know by now, I was describing a lancet.  And not just any lancet, a multiclix lancet, one of just a few left in our dwindling supply.

Elise has only ever used the multiclix.  When she was a tiny 12 month old, that was what we used to pierce her little fingers to draw blood.  It has been the one constant through our diabetes journey. And now we are down to one.

Others have been lost.  Some broken.  All of them irreplaceable because there are no more multiclix being made to replace it with.  And I know the fastclix, the younger sibling to the multiclix is just as good, but that does nothing to get rid of all the drums I have sitting in the diabetes cupboard.

That, and I don't do change well.

So for now, I might have to chain that last remaining multiclix to Elise's diabetes bag. Just like a bank with their pens.

Would that make me weird?

Sometimes...

Things have been rough lately.  Diabetes has been a big, stupid jerkface, and Elise is collapsing under the burden of it all.

The other day we had a meltdown of epic proportions. My heard was breaking because I couldn't fix it.  She's hurting down to the depths of her soul and I can't do anything about it. It was haunting to listen to.

She's right... Diabetes is awful.  And horrible.  And not fair.  She's right to ask, "why me?"

But what, as parents, can we do about it?  We can hold their hands. ease the burden in any way possible, validate that their feelings about diabetes are okay (though I've had some argue with me about this.  That's another post for another day), and love them as best we can.

But there is no tangible way to help.  And that's the kicker.

I went to bed that night with a shadow resting over my heart.  I replayed her sobs in my head, feeling like an utter failure.

It's my fault she has this.

My fault her numbers have been erratic lately.

My fault because nothing I do fixes them.

My fault because by now, I should know what to do.

The next morning I awoke with a renewed determination.  First and foremost I wanted Elise to know how proud I am of her.  And how she constantly amazes me with her strength.  And even though diabetes is hard, she is bigger and better than it, and it won't beat her.

So I wrote it down in a note and tucked it into her lunch bag.  Usually I write her jokes, but that day she needed more than a laugh.

There were quite a few calls from the nurse that day (because of the erratic numbers), and I could always hear her in the background; she sounded in good spirits. Usually multiple nurse visits cause major grumpiness.

When she got home, she bounced off the bus to meet me and gave me a big hug when we got in the house.  Then she said this:

"You know that note you wrote me?  Thank you.  It made me smile.  I also read it to M (other girl n her grade with d), and it made her smile and happy too.  And then we talked about how hard diabetes is.  Can I keep the note forever and look at it when I need to?"

With that, she showed me exactly why I wrote the note.  Because it's true.  All of it; she's amazing, and brave.  Strong and a fighter. There are days when diabetes will get her... but she'll prevail in the end.  I know it.

And sometimes... even though I feel like a failure when it comes to diabetes, it's nice to know that I can get it right.

The birthday that never came

December 26.

I have been dreading this day.  The day I was supposed to meet my son. I wish it could have been avoided, but the month has carried me to this day, much like a riptide carries one out to sea.   I was helpless against it.

Since July 21, there have been a lot of "supposed to's", but obviously this one is the hardest. My actual due date was January 1, but Nicolas was scheduled to arrive via c-section today.

There is so much I want to say, but losing Nicolas has stemmed the flow of words.  Writing through such sorrow is not easy for me because the emotions are so overwhelming I don't know how to express them.  Not a day has gone by when I haven't thought of him.  I would even go so far as to say not an hour passes without him being on my mind.

The day he was born was so traumatizing (I could seriously teach a class on how not to treat a woman in my situation), that I missed out on really seeing my son and saying goodbye.  The time I had with him was short and is already fading in my mind.  I wanted to write him a letter to say all the things I never got to tell him.

--------------------

Dear Nicolas,

Today was to be your day.  The day I would finally hold you in my arms and our family would be complete. I cannot describe the ache in both my arms and my heart today.

There is so much I wonder about you... hair colour, eye colour, height and weight. But so much more than that.  Who would you be? What would your life become?  There is such sadness in possibilities never realized. I long to see how your piece would have fit into our family puzzle.

Though I only carried you for 17 short weeks, you are forever with me.  I carry your named engraved upon a bracelet on my wrist, your initial graces a pendant I wear, and your soul is forever stamped on mine.

I am sorry. So sorry that I never got the chance to meet you. To look into your tiny eyes and kiss your nose.  I'm sorry for all the snuggles I missed and hours in the middle of the night when it was just you and I. The stories never read and lullabies never sung.

Finally, I want you to know how loved you are.  So very loved.  Your brother and sister still talk about you.  In their world, the span of a week is a lifetime, so it seems you are eternally on their minds as well.  In fact, to them you are a part of the family, just as they are.  Your sister was telling someone just the other day that she has three brothers. 

Merry Christmas Nicolas. The only thing missing is you

And so, my sweet boy, Happy supposed-to-be Birthday.  I miss you.  I love you.  I always will.

Love,
Your Mama

May the road rise up to meet you.

May the wind always be at your back.

May the sun shine warm upon your face,

and rains fall soft upon your fields.

And until we meet again,

May God hold you in the palm of his hand

In memory of Nicolas Daniel

Yesterday was National Pregnancy and Infant Loss Day.  I didn't find that out until well into the afternoon.  It makes me sad that the day that is meant to honour our lost children isn't really talked about. 

Much like the loss itself.

I discovered that there would be a candle lighting close to where I live, so the kids and I went.

I lit a candle and cried for my son.  And for all the little lives taken too soon.

Every cry is a song

Every song is a prayer

And our prayers must be heard

Fill the air

-Hothouse Flowers

Darkness

If you are FB friends with my husband, you have already heard the news, but for those of you who are not, it is with immense grief and sadness that I share that we have lost the baby.

My water broke a week ago, but the baby still had a strong heartbeat, so they sent me home to see what would happen.  Unfortunately, the follow-up sonogram on Monday showed the heartbeat was gone and the baby had died over the weekend.

Monday I was induced and delivered a tiny baby boy, who we named Nicolas Daniel.  The pain and heartbreak is indescribable.

I am thankful that we do have the joy of Elise's involvement with the bionic pancreas trial to focus on, and I will do my best to post updates.

Thank you to all who sent messages via FB, or email.  I have read every single one of them with tears in my eyes, knowing that we are loved.

Pop Quiz

Put your books away, it's quiz time... can anybody tell me what this is a picture of?

If you said a picture of a Dexcom, you'd be right.

If you said a nice BG, you'd also be right.

If you said a pretty sweet 3 hour graph, that would be correct too.

But the picture doesn't tell the whole story.  In that 3 hour time period that is displayed on the dex, Elise received NO insulin.  None. In fact, when she dipped into the red, she got 6g of carbs.

Today was Elise's first field trip, and she was just a wee bit excited.  The nurse went along and just after noon, she called; pod alarm.  Basal stopped.  Crap.

I had just come home after picking up Mattias from school.  He was starved and exhausted.  I also had a very hungry and tired baby.  I knew Elise would HATE it if I had to come and change out her pod in the middle of her field trip (the nurse doesn't do pod changes per our request).

Thankfully, Elise was on the low side... hovering around 100.  I told Nurse K to watch the dex, and let me know if she started to rise and we'd figure something out then.

It turned out, nothing needed to be done.  Elise made it all the way until she got home.  Her BG was 113 and a ketone check (just in case) showed 0.2.

The knife through the heart was Elise's thought on the whole experience, "Mama, it was like being a normal kid again!  I was just like everybody else!"

Cue big, sad sigh.  Followed by tears when she wasn't looking.

Damn you, diabetes.  Damn you to hell.

***this is NOT medical advice, and I am not a doctor, although I watched a heck of a lot of ER when it was on TV.  What?  I thought Dr. Carter was cute.  Anyway, you should never follow my example and not give our child insulin for 3 hours.  Seriously... DON'T DO THIS.  This was a special circumstance and a unique experience.  

Fake Pancreas, out.

Lights

Once there was this Mom.  She was in a very dark place.  Her heart ached and she seemed to spend most of her waking hours weeping.  She couldn't remember ever feeling so alone in all her life.  All she had were her words, so she threw them out into the void hoping that somebody, anybody was listening.

Somebody was.  Lots of somebodies.  And little by little, the door to where she was hiding inched open and lights started to shine.

Lights like Penny.  And Jill. Meri.  Laura.  Jessica. Wendy. Tracey.  Misty.  Amy. Kristi.  Lora. Heidi. Kelly. Chasiti. 

And Shamae.

I count these ladies as people who helped save me, and Shamae was one of them.  She was so positive and encouraging; as well as a fierce D-advocate.

My favourite memory of her is when she blogged about a terrible Letter to the Editor someone had written to her local newspaper. The person took issue with a little boy injecting insulin at a table in a restaurant. Shamae was fired up and wrote this blog post, encouraging us all to write the paper.  My response was published and Shamae was so sweet, sending me a copy of the paper and proclaiming me a "published writer in Idaho!"

I was shocked to find out on Sunday that she had passed away in her sleep. I am still in shock, it just doesn't seem possible.

So once again, this Mom is weeping.  For the loss of a friend.  A fellow D-mom, and a sweet soul who was taken way too soon.  I cry for her husband and three little girls; who shouldn't be saying goodbye, but have to.  

How can you mourn so deeply for someone you've never met; never even talked to, except through the written word?  I think it speaks to the bond that we D-Moms all share.

Thank you Shamae, for being a light in my very dark world.  

Heavy conversations

The following took place one morning as Elise, Mattias and I ate breakfast.

Elise: Mattias, I want to talk to you about something. About my diabetes.

Mattias: Bleeg!

Elise: Mom, can I talk about my diabetes?

Me: Of course you can.

Elise: Why do I have to get insulin shots? (we've talked about this many times with her, but she likes to ask again from time to time)

Me: Because you have diabetes. A part in your body, called the pancreas is broken. The pancreas makes insulin, which we need to live. Since your pancreas doesn't make any insulin, we have to give it to you with shots.

Elise: Why did my pancreas break?

Me: (thinking in my head, oy... I'm not going over auto-immune attacks with a THREE year old) Well Elise... we just don't know why your pancreas broke. Doctors are trying to figure out why.

Elise: Does your pancreas work?

Me: Yes.

Elise: How about Mattias's?

Me: His works too.

Elise: Why did I have to get diabetes, Mom?

Me: You know what I think? Only the strongest, the bravest, and the most special kids have diabetes. Because God knows that you would be able to handle it. Other kids would run away screaming from a needle, but you just hop up in my lap and you don't even cry! You and all the other kids with diabetes are pretty amazing!

Elise: Sometimes I don't feel very brave.

Me: But you are. And I want you to always remember it, okay?

Elise: Okay.

And with that, question time was over. Pretty heavy stuff for a three year old.

***some of the content of this conversation has been edited; like when Mattias stuck his hand in his smoothie, or the squirrel who decided it would be fun to taunt our dog from the safety of his tree, causing Seven to go all sorts of berserk.

How sad is too sad?

"I just hate this so much".

Elise said this to me today as I was changing her pants and underwear for the second time in three hours. Her blood sugar has been soaring after lunch for some reason, and today Fred and I got busy cleaning out the garage to remember to ask Elise if she needed to go potty.

She was having too much fun helping us, and didn't want to go inside. Both times she stared to bawl, telling me she was sorry. I hugged her and told her that it wasn't her fault. That when her blood sugar is high, it makes her body need to go pee pee more often. I let her know that we weren't mad, and we should have been the ones to take her to the potty.

That's when she told me that she hated this (diabetes). It's enough to make your heart wither and die.

And yesterday I noticed she had been in a funk all morning. In an attempt to draw her out, I took her grocery shopping with me; just us girls. It was like pulling teeth trying to get her to talk.

First she said she was sad that Mattias's eyes weren't changing colour (she has green, he has blue, and she wants his to look like hers. Anyway you look at it, it's a strange thing to say).

Then she said she was sad she didn't have a sister. Mmmm, okay. We'll get right on that.

Then she lowered her head and was very quiet. And in a very small voice she said, "I don't like having diabetes. I want to be like all the kids at school. I don't want to have this."

I said most of the same things I had said the other day. She asked me why she has diabetes. I told her I didn't know. I told her that diabetes is a part of her. A hard part, but one that makes her so special. She seemed to think about this, and as we held hands and walked into the store she told me,

"I am special. I have diabetes. God loves me and you and Poppa love me and diabetes helps me to be special."

She seemed okay from that point on, but I wondering... is it normal for a 3 year old to be this consumed by it? I understand being sad every once in awhile, but she has said something almost every day.

When did your child start being sad/angry about diabetes? How often do they mention it? I'm wondering if I should take Elise to see a professional to help her with these feelings. Has anyone done this? Does anyone have any other tips that I could use to help Elise?

It's just breaking my heart and I don't know how to help her.

Living with Diabetes is hard

No, this is not our mantra. And nor is it something I have ever said to Elise. Tonight she broke my heart with those 5 little words.

She's noticing now. She sees that she's different. And she doesn't like it. On Friday she told me that, "having diabetes makes me sad." Oy.

And I don't know what to do for her, besides sitting her down and letting her talk. The problem is, she doesn't say much. Not with her mouth. I don't think she has the words to adequately describe how she's feeling. But in her eyes I can see all the pain and sadness that is swimming inside of her.

I hug her and tell her that it's okay to be sad. That her Poppa and I will always be there to talk to and help take care of her. That we love her. And her diabetes makes her even more precious to us. I tell her how strong she is. But is she getting it?

As a parent, it is so hard to watch your child struggle with something you cannot fix, and neither can she. We have all said this before, but I would take it from her in a heartbeat if I could.

Yes Elise, living with diabetes is hard... but I've seen you in action. You will not only live with diabetes, but live well with diabetes. The great Nelson Mandela said, "The greatest glory in living lies not in never falling, but rising every time we fall."

And you, my sweet daughter, shall rise.

Courage doesn't always roar.
Sometimes courage is the quiet voice
at the end of the day saying,
"I will try again tomorrow."
- Mary Anne Radmacher

What would YOU do?

Have you ever seen that show, entitled "What would you do?" It's on one of the major networks and the basic concept of the show is they set up a dangerous/uncomfortable/bizarre scenarios, and then let their hidden cameras capture how people that see it, react.

For example, one time they had two people acting like they were on a blind date. When the woman steps away to go to the bathroom, the man, not-so-surreptitiously drops something in her drink. The man and the woman are in on it, but the people sitting around them are not. The point of the show is to see if people will step up to the plate and help the woman, or if they will mind their own business, or pretend they don't see what's going on.

The show really makes me mad. Rather, the people who keep their mouths shut and don't offer help in any way make me mad. And I had a first-hand experience with people that just didn't want to get involved.

You'll recall my post about Elise going low during a shopping trip. I am sad to say that there were people watching me during the whole episode, but never offered to help. Even when I was struggling with carrying an 40 pound child, a backpack, and a cart (don't ask me why I just didn't abandon it).

Even when I sat in customer service with a nearly catatonic child, the contents of my bag strewn everywhere. Discarded alcohol wipes, empty juice bottles and used test strips littered the seat next to me. As I sat and rocked Elise, I saw them watching me. Even a cashier that worked at the store stared at me every chance she got. But nobody offered to help.

It's not that I needed help, really... what could anyone do for me? But an offer would have been nice. Maybe they could have refilled the juice bottle with water for me when Elise asked for it, so I didn't have to leave her sitting on the chair by herself. Sure, the fountain was only about 10 feet away, but I wanted to stay close to Elise in case she passed out.

I think what I was looking for was a friendly voice. Someone to tell me it was okay, and I wasn't alone. Somebody to help me not to freak out.

I've always thought that I would speak up or step up in a situation where others wouldn't. After my experience, I now know that I would.

So, what would YOU do?

Maybe if I ask nicely...

Dear Diabetes,

I wonder, do you have a pact with the universe to bring it at the most inopportune times? To kick us when we're down? Do you see us in difficult situations, call up the universe on his cell phone and tell him, "it's go time!"

Because that's what it seems like to me. Realistically, there's never really a good time to deal with you when you decide to rear your butt-ugly head. But really, some times are better than others.

Like, why do you decide to crash Elise's BG while I'm nursing and alone? Kinda hard to treat a low BG while you have a baby attached to your boob. And do you know what happens when you pull the baby off in the middle of you milk letting down? Milk shower for everyone... YAY!

Or take for example the other night... it's just me, all by my lonesome, and it's time for Elise's BG check, snack and shot. Mattias also needs to eat and is getting quite fussy. So I check her BG, make her snack, prepare her shot, then settle down to feed Mattias while she eats. For some reason, she decides to get upset about something, drop her yogurt all over the carpet and then start to scream. Which freaks out Mattias; he stops feeding and starts to cry. Then spits up all over me and the sofa. And then refuses to feed.

Meanwhile, I have no idea how much of her yogurt Elise has eaten, how much is now on my carpet, how how many carbs I need to replace. Seriously... do you find situations like these humourous?

Or how about this past Friday... date night. I use the term "date night" rather loosely since dragging 2 kids and three bags o' crap to dinner with you, is in no way a date. But it's okay, because someone else is doing the cooking.

So why, 30 minutes after dinner, is Elise's CGM telling us her BG is 48 with double arrows down? And why while we're driving? Do you know how hard it is to check a BG while in a moving car? Of course you do... that's why it happened this way. And why, after stuffing 20g of smarties and fruit snacks in her, does the CGM still read LOW with a slanting downwards arrow? And why won't Mattias stop SCREAMING?

Look, all I'm asking for is a bit of a break. I'm tired. I'm beaten down. I'm stressed and I'm sad and I'm struggling. I just need you to go sit in the corner and behave for a bit, okay? Please?

Thank you for your attention in this matter.

Sincerely,
Joanne

At a loss of words, for once

I don't even know what to say.

Though I feel like I should say something.

Maybe it's because since I heard the news that we had lost another member (and a child at that) of the diabetes community to Dead in Bed Syndrome I have tried my absolute hardest not to think about it.

But it's there anyway.

It's there in the way that tears start to fall any time I allow my mind to go there.

It's there in the way I find myself so freaking mad that diabetes is my daughter's reality.

It's there every single time I haul my tired ass out of bed to make sure Elise's is still breathing.

It's there when I pray for a cure.

It's there when I hug her for about the hundredth time today.

It's there when I don't want to let her go. Ever.

I am so totally heart broken for the family that lost their 13 year daughter to this insidious disease. I cannot imagine the pain. In fact, I'm expending a whole lot of energy trying not to.

Instead, I will add my voice to the rallying cry for a cure.

Let it come soon.

Sadness

I've got the diabetes blues and I don't know why.

It's not like anything out of the ordinary has been happening... Elise's numbers have been okay, although not great. But we haven't had any crazy, unexplained highs, or difficult lows (we did have to leave play time at open gym today because her BG would not go up, even after the 20g, and then 18g I stuffed into her).

I just feel beaten up. I feel sad every time I test her BG. I want to cry with every shot she gets. Counting carbs depresses me, and I've shut off all thoughts about what her future holds.

Maybe I'm just overly tired. Maybe it's the pregnancy. It could be due to the fact that we heard back about our insurance and the CGM, and the news wasn't great (covered, but the cost may be prohibitive).

Maybe it's the fact that I feel so poured out, yet I feel like I have nothing to renew my spirit.

It happens to all of us from time to time. It will pass and I will feel better. I know this.

I just need it to be sooner rather than later.

A diabetes flashback

I was reading through some stuff that I had written, but never posted. This one almost took my breath away. It was written over a year ago; at a time when I was feeling very alone and isolated. I think I had just discovered other D-blogs out there, but it was all still new to me. This post makes me want to cry, because those feelings are very ghost-like to me; not 100% here, but still hanging around, haunting me.

But it also shows me just how far I've come. I was at this same park I talk about in the post, just the other day. And not one of those bitter feelings came back. It's amazing how far we can travel in such a short time, even when we are weighed down by the heaviest of baggage:

Diabetes plays dirty. It will hit you when you're not looking, and does not have a problem striking where you're most vulnerable. In fact, it seems to wait until you're feeling pretty confident about yourself before it tries to KO you.

Yesterday, diabetes used me as it's own, personal punching bag; reminding me that I am not in charge here. We've been having some very bizarre BG numbers lately; I'm talking a level of 490, and then down to 50 in less than 4 hours. I know, weird.

Elise woke up pretty high yesterday morning, at 330 with a trace of ketones. We were supposed to go to our local rec center for some open gym time, something we do every Thursday. Elise loves playing with all the fun toys and other kids as much as I love getting to talk to grown-ups. But it wasn't to be. I gave Elise her insulin plus correction, she ate her breakfast and I made sure she drank a lot of water. My hope was if I checked her in an hour or so, the ketones would be gone and we could still go.

Now her ketones are small and her BG is at 490. And she is one unhappy little girl. She wants to go out for a walk, but how do you explain to an 18-month old that she's not allowed to do that right now? I try to make her drink more water, but when I offer her the cup, she throws it and starts to cry.

Fast forward to lunch and her BG is now 127. I guess the insulin is now kicking in. And the ketones are gone - Yay! She eats all her lunch and goes down for her nap. About 90 minutes later she's up and crying... and at 50. I give her 7g of carbs (anything more will take her BG sky-high), but she wants more. She's loopy, cranky and very upset. It takes about 30 minutes to calm her down. Finally her BG is at a good level.

Because she missed her morning play-time, I take her to a nearby park that is filled with laughing, screaming children. It's amazing that it's at times like these that I feel the most alone. I look at the other moms and envy how relaxed and at ease they are. I'm angry. Angry because I feel like nobody out there understands what I have to deal with. Angry because they can sit and chat with their friends without a care in the world. Angry because I am alone.

I watch Elise and worry that the exercise could make her drop low again. I tell myself to shut-up and enjoy this beautiful, sunny day with my daughter. The feelings of despair lurk, ready to pounce at any sign of weakness. Tears threaten, but I will them not to fall.

When my husband came home from work yesterday, I finally burst into tears. I had a good cry and moved on. I'm learning that this is what I need to do. I cannot dwell on it. Today is a new day; no ketones, good numbers, and we were able to go to story time at the library this morning. With a normal blood sugar level, Elise is happy and content.

If somebody had told me back then how much better I'd be doing a year later, I would have called them a liar. I still battle those feelings of despair and loneliness on an almost daily basis, but I am also thankful at how far I have come.

Why we do what we do

My heart is breaking for a family I have never met, yet am connected to because of a terrible disease. The Mom went into her son's room one morning, only to find he had passed away during the night, they think from a low blood sugar. His name was Tyler and he was only 14 years old. He, of course, had Type 1 Diabetes.

All my D-Mom/Dads already know what I'm about to write, so I mainly write this for my friends and family members who read my blog.

When I usually explain to the uninitiated all the work that goes into caring for Elise, the response is always surprise. Especially when I get to the part about how we get up at least twice a night to check her blood sugar.

I know it seems over the top to most people, but as Elise's Mom, I will do everything in my power to protect her from harm. And I know that I cannot be there 100% of the time. I know I cannot protect her from every evil in this world, but you can bet that I will bust my ass to try.

Let's look at it this way; when you get in your car, you either strap your kiddo into their car/booster seat, or make sure they put their seat belt on, right (let's disregard this is a matter of law for the moment)? Why do you do this? You're a safe driver. You obey all posted speed limits, you use caution, and pay attention to the road.

But what you can't control are other circumstances; drunk drivers, people who text and drive; and the ones who just plain suck at driving. You have no idea at what might happen next, so you do what you can to protect your child... it's just good ol' common sense, right?

As so many others have eloquently stated, a parent is NOT a pancreas. No matter how hard I try, I cannot replace that precious organ in Elise's body. I was not created to control and maintain blood sugars. All I can do is use my common sense and do my absolute best.

And this is why we weigh every carb Elise eats.

This is why we check her blood sugar 10-12 times a day, and at least twice a night.

This is why we don't leave Elise with anyone.

It's why Elise isn't in pre-school.

It's why I ALWAYS have a watchful eye on Elise.

It's why Elise comes with us on our date nights.

And why I carry a backpack full of strange gadgets and food. It may seem odd to you, but it might just save Elise's life one day.

It's why I am so tired, so distracted, so overprotective, so consumed and so frightened. Because stories like Tyler's happen. And they happen to people who do everything they can, just like we're doing. I mean, his Mom is an ER nurse.

And so, my heart is breaking. Not just for this family, but for all the other D-families out there who hear these stories. And the need to check their kiddos a little more often and hold them a little closer consumes them that much more.

Please God, let us find a cure soon.

Saying bye bye to boo boo

During all the craziness of finding out I was pregnant and my thyroid going haywire. Elise and I passed one very important milestone.

I made the decision to stop nursing her. I think I had been ready for awhile, but just didn't know how to stop.

When Elise was diagnosed at 12 months old, I was still nursing her 4 times a day. When we met with the dietitians in the hospital, I was told I would have to either stop, or start pumping and feed her my milk that way. I had just put away all my pumping supplies, and there was no way I was going to do it. I hated that contraption.

But there was no way I was going to stop nursing my baby just because they said so. She was still MY baby and I knew what was best for her. I could not cure her diabetes, but I could offer her one thing that nourished and soothed her.

It was hard to know how much she was getting, but we soon figured that it only affected her BG by about 30 points. I don't know why, but it always seemed to work out.

Then, one by one, I dropped a session, until only the bedtime one remained. When I found out I was pregnant, I knew I couldn't continue to nurse her (for my own health reasons). It took her about a week to get used to it, and her tears just about broke my heart. But life goes on and so did she.

I'm glad I made the decision to nurse her as long as I did. It's not for everyone, but it worked for us. I've said it before in another post about nursing, but I think it has contributed to Elise's overall good health. To this day, she has never even had an ear infection. And when we all came down with the Swine Flu in September, she fared the best out of all three of us!

It was definitely a sad milestone for me, but hopefully if all goes as planned, I'll be back at it again in September!

Elise's new words

"No bla shure, no bla shure"

Translation: Please don't poke my finger and squeeze out the blood.

Usually uttered when her BG is low and is accompanied by the saddest cry you've ever heard.

Talk about breaking a Momma's heart.

How can I miss you if you never go away?

My Mom is in town right now and it has been so fabulous. I've been able to get my hair cut, go to the doc so he can figure out why I'm still sick (yes, still... three weeks later), and get my passport pictures taken. I'm also planning on fitting in a chiropractor appointment and getting my driver's licence renewed. I'm whittling that to-do list down to only 1 page!

To take care of all these tasks with Elise in tow would be impossible. Nor would I want to drag my child to the DMV or the cesspool of germs known as the doctors office. But while my Mom is here, I am reassured that I'm leaving her with someone that can check her blood sugar, and knows how to do everything involved with giving her a snack or meal (weighing the food, doing the math, etc.). She's still working on being able to give Elise a shot, but as the song says, two out of three ain't bad.

Unfortunately, she's leaving in a week and I hate that I'll be back to having no one to leave Elise with during the day if I needed to. We just don't have anyone here that knows how to care for her. We have had one friend (love you Val!), step up and say she would love to learn, but life just keeps on getting in the way. She has a husband, a job, and a whole bunch of other responsibilities; plus trying to get our schedules to line up is just impossible. So for now, there's no one.

Because Elise was diagnosed so young, we've never had the chance to get her used to not having Momma and Poppa there. She's pretty good with Gramma (although she still whimpers when I try to leave), but otherwise her separation anxiety is so bad, I don't even know if we could leave her with anyone.

We've pretty much stopped going to church because the last three or four times we've left her with her one-on-one buddy in the nursery, she's had a total meltdown and they've had to call us out of the service each time. They've tried to calm her, but nothing works and we don't want her to get that upset.

I wish I knew what to do. My husband and I only get to go on "real" date nights (that Elise does not accompany us on) every 5 months or so when my Mom is here. And I miss going to church. But I don't know how to address the separation anxiety issue. We can't get her used to being left with someone other than ourselves because we don't have anybody to leave her with, and I am uncomfortable with how upset she gets when we do try to leave her (we're talking total meltdown).

But I'm going to try and enjoy the time she has left and not get mopey about her having to go home. Did I mention that she's been doing all our laundry, loads and unloads the dishwasher, cleans the kitchen, mops the floor, walks the dog, and helps me make dinner?

No, you cannot have her.

I just don't know how to make it work...

I found out some sad news today. In August, the church we've been going to for the last 7 years is moving their 6:00 pm service to 5:00 pm. Which, for most people, is no big deal. For us it means we'll probably have to find a new church.

With the insulin Elise is on, neither of the other two services (9:00 am, 10:45 am) work for us. Elise gets her shot and eats breakfast around 8:20. We've tried making it to the early service and we could never get there before 9:15, and we're usually so frazzled and stressed out, it was hard to even focus on what the pastor was saying when we actually sat down.

The 10:45 doesn't work because Elise is on NPH, which peaks at around noon. The service ends about 12:15... most days. The other reason this service doesn't work is because I test Elise's BG around 10:30/10:45 and figure out her snack based on that number. This is NOT something I feel comfortable letting her Sonshine Pal do.

The 5:00 won't work because that is the time Elise eats her dinner. Our church will be doing a community meal after the 5:00 service (around 6:15), and Fred and I talked about seeing if we could move her dinner to 6:00 (just leave the service a bit early). But that doesn't work because it puts it too close to her bed time.

I just don't know what to do. Before Elise was born, we were very involved in our church, and know so many people there. It would be so hard to leave. Plus, we have been very blessed to find two people that stay with Elise one-on-one in the nursery (her Sonshine Pals; they alternate weeks). One is a very dear friend of ours, and the other is a nurse. Without them, we wouldn't be able to leave Elise in childcare at church.

People say that we shouldn't let this disease run our life, but our day with Elise is so structured (between meals, snacks, naps and bed time), it's almost impossible to change things up too much.

On top of this awful news, I have a feeling something is up with Elise. She had a total meltdown in the nursery tonight, and we just checked her BG a few minutes ago it was 315 with .4 ketones. She just had a vaccination on Thursday, could this be a delayed reaction? Something else completely?

Sigh, I hate this disease.