Hurt

As I laid awake last night, unable to sleep because of Lovebug waking me up with a bg of 50, I was thinking of how much Diabetes hurts.   

Physically it does things like this to Lovebug's body. 

This, by the way, makes her feel like crap.  I can only imagine what that feels like but she knows. She just can't voice it yet, but I can see it in her demeanor, her attitude, and in her sleep at night. When she as a days like this, she sleeps harder then normal. It's harder to wake her up to get juice into her when she is low. Like last night, she kept falling asleep while she was trying to drink her juice.  I had to keep reminding her to suck.  

Emotionally it makes me just hurt.  I don't sleep. I worry.  I let my mind go places it shouldn't. I want to cry and scream at the same time.  I want to take diabetes by the neck and strangle it.  I HATE what it does to my little girl.  I HATE IT.  

Then the worst part of everything is the horrible reality, that the worst hurt EVER could sneak into my house and take Lovebug's life.  

Last night I learned of 5 families who lost loved ones due to complications from Type 1 Diabetes.  Today my heart hurts.  Not for Lovebug, but for those families. 

A 27 year old mother of two

A 24 year old who died of ketoacidosis

A 16 year old boy

A 9 year old girl who succumbed to depression and took her own life

A 18 month old who was misdiagnosed

This is the reality of the disease.  This is the hurt.  

Worst of all, this is my reality.  This is my hurt too.  

The fear I live with every single minute of every single day.  I can not relax or let my guard down for even a second.  Because in a second EVERYTHING could change. The fear that no matter how hard I work, or how diligent I am, Diabetes could decide to take her life at any moment.  

This is why I advocate.

This is why I educate.

This is why I fight for a cure. 

Every. Single. Day. 

And I will not stop until there IS a cure.  

Aware

I knew it would happen....


It's starting with seeing her put her finger up to the strip and not waiting for me to bring the strip to her finger anymore. 


The way she is starting to remember how many glucose tablets she needs based on what her bg is. 


When she tells me she is sweaty, when she hasn't been running around and tells me she thinks she is low. 


It's asking me how many carbs are in her banana. Or asking if cheese is a free food? 


I know this is just the start of more things to come. At least she hasn't said to me that she doesn't want to have Diabetes anymore or that she hates it. Although, I'm sure that time is coming. She is just growing up and starting to become more aware.  


Aware that she is different.  That she has a insulin pump that is her life support.  


Aware that even though she can do ANYTHING she puts her mind to, there will be times when Diabetes will get in the way and puts a little kink in the road.  


Aware that her friends can eat whatever they want, when ever they want. Without poking their finger first.  


I am thankful reality will be kind to her and set in a little slower then it did for me.  But to be honest, I hate reality.  


I can deal with everything, but I'm NOT ready to let her start dealing with Diabetes.  I'm not ready to let diabetes steal more of her childhood then it already has.  I knew this day was coming, but I am not prepared. My head is ready, because let's be honest here, I could use a break. My heart on the other hand, HURTS.  It hurts for her.  


I'm not ready for her to grow up and have to start dealing with this on her own. I want her to be able to be a kid and not worry about all this. If I taught her not to worry I would be irresponsible though.  I have to teach her to take care of herself but how can I do that and still let my little girl be a little girl? 


I want to take that reality right off her cute little shoulders and bear it all for her.  ALL of it. The highs, the lows and everything in between. If only it were that simple.  If only I could just take it from her so she could be a kid just a little bit longer.  


I could complain that this is unfair and just plain cruel.  (just because I don't complain doesn't mean it hurts any less) I can't though. I have to stay strong for her. I have to remember that my attitude rubs off on her. 


Despite that,  I have to remember that God is walking this road right a long with us. He is holding our hands and watching out for us. He is only giving her what she can handle. (although personally I have had a few words with God about this, I don't like it for one second that He has given this burden to her) 


That is what keeps me together on days like this.  Days when I realize my little girl is starting to grow up a little too soon. 

2am Madness

I am sitting her wide awake thanks to a low blood sugar number for Lovebug.  We had one earlier in the night, Lovebug came down because Dexie woke her up.  Then when I went up for my infamous 2/2:30 check and looked at Dexie.  74 and arrow straight down.  Finger poke said 72.  Dang, caught that one.  To top it off Lovebug had wet the bed so I had to fully wake her up and change her clothes and sheets.  I just LOVE having to do all that at 2:30 in the morning.  Really, it's my favorite thing! (sarcasm intended there folks)  


As I sit here (Lovebug back to sleep blood sugar going back up) completely unable to get back to sleep I find myself getting mad. MAD at diabetes. MAD at everything. You see my emotions and everything else seem a bit amplified this time of night and all the more harder to bear. This would be the time of night I cry the most often. I am so impatient this time of day.  I cursed at Dexie tonight, twice!!  Even though I LOVE that little machine!  I would be LOST without her.  I would  get even less sleep then I get now, if that is even possible.  What is it with me?  Why can I not hold it together when I am sleep deprived and trying to take care of diabetes at 2:30am? Maybe it's because my brain is going 80 miles and hour and my body about 5.  I don't know....


It's nights like these that I just want my old life back. My life before diabetes.  When I could sleep all night and not worry every day.  When I could just let Lovebug be a kid all the time, not just some of the time.  When I didn't have to burden her teachers or childcare workers at church with the extra responsibility.  Back before I didn't know what in the world a carbohydrate was or how to count them. I want to go back to when I didn't understand what a I:C ratio, bolus or basal was.  I just want to go back.  I don't want Lovebug to suffer anymore, I don't want to suffer anymore.  


I was reading Hallie's post This is LOVE calling. (another thing I did while I was up tonight, caught up on some of my blog reading!) Boy did I need to be reminded of that tonight. The song she quoted by Toby Mac is a song I jam to quite often.  Despite me losing my way, I will get back up again. Shoot, I have to pick my self back up again every day, sometimes numerous times a day!!  You really should go over to Hallie's blog and read her post, the song is playing on her music player!  You will know what I mean when you listen to the song. Those of you who really know me know the song fits me to a T.  


In all seriousness, I am not even 2 full years into this and I already feel like I am burning out.  How am I going to keep doing this? How is Lovebug going to do this her whole life?  My body hurts, my head hurts and my heart hurts.  Everything just plain hurts.  I'm tired of not being about to get diabetes off my mind.  I'm tired of site changes,sensor changes and the smell of insulin.  But every day I have to get back up and do it all over again. I don't have a choice. 


Despite everything, I accept it. Diabetes has taught me A LOT about my self. My faith has grown and my relationship with my husband is stronger then ever.  I know God has dealt us this for a reason. A reason I may not ever know in this lifetime, but I'm okay with that. Well, maybe not always in the middle of the night when I am half awake and frustrated but I know.  I know in my heart, even if my head doesn't always go along with it!  We all have our bad days and moments, right?  Mine just seem to come in the middle of the night. 

D-Feast Friday - Lentil Soup

This is my husband's favorite soup. :)

Lentil Soup
Ingredients:
1 cup dry lentils
1 cup sliced carrots (about 2 medium)
1/2 cup chopped celery
1/2 cup chopped onion
2 tbs instant chicken bouillon granules
5 to 6 cups of water (or you can use about 3 to 4 cups of chicken stock)
1/2 tsp dried sage, crushed or 2tsp of snipped fresh sage
1/8 tsp ground black pepper
2 cloves of garlic, minced
6 oz fully cooked smoked sausage links, quartered lengthwise and sliced
grated Parmesan 


Directions:
In a large pot combine the lentils, carrots, celery, onion, bouillon granules, sage, ground pepper, garlic and water.  Bring to a boil and reduce heat.  Cover and simmer for 30 minutes until vegetables are tender.  Stir in sausage and simmer for another 25-30 minutes. Serve with grated Parmesan.  


*add more water for thinner soup, add less water and simmer longer for thicker soup


makes about 8 - 1 cup servings - about 36 carbs per serving. 


Lorraine over at This is Caleb has another fabulous version of Lentil Soup to try!

Oh The Drama!

So I just can't get my mind to concentrate on one thing lately. Every time I sit down to write my mind wanders in 20 million different directions.  It's seriously starting to drive me crazy!  I just want to write and let it all out but none of it makes sense because I am all over the place.  


Maybe I have adult ADHD. I don't know?  I just wish I could concentrate a little better.  It's probably because there are so many thing going on right now that I am trying to focus on everything and yet one thing at a time. Does that even make sense?  


The BIG one is school.  Decisions have to made about this fall in the next couple months.  I am seriously afraid to send Lovebug to school where Peanut goes now. I seriously don't know what it is but I do know that even though I have her enrolled at one place doesn't mean that's where she is going to end up.  I do know I am filling out re-enrollment papers at the private school too, and see what happens.   


I don't know why I'm not comfortable with Lovebug going to Peanuts school. It's a great school, we love it there. I've been trying to put my finger on it but I just can't seem to figure it out. It's that gut feeling I just can't get rid of.  I know they have other children there with Type 1. For goodness sake, the secretary has 2 children with type 1 and her husband has it.  I know they know how to deal with these things....but why I am so freaking nervous about it?  


Maybe it's just because I'm comfortable where she is at, and I really don't want to change schools for her, even if that means having my kids at two different schools. It might mean that.  Then there is the cost involved. Looking at the budget I have no idea where the money will come from, but I have faith, and if that is where Lovebug is supposed to be things will work out.  While I know this is something that will get answered and I am positive I will have a clear answer soon, it weighs heavily on my heart.  

Then there is Lovebug's blood sugar numbers. They have been ALL over the place lately.  I mean severe lows as well as crazy highs, and for no apparent reason! Breakfast spikes are back!  I am trying something different here and will blog about it later, like after I have experimented with it a little more)   Her night time highs are back as well and I have tweaked the basal rates a little but I am still playing with the doses.  I set the basal rate higher and it keeps her down where she should be when she normally spikes but then she goes low about an hour after that basal ends.  I lowered the that basal following the higher basal and then she just goes high.  I HATE how diabetes is so unpredictable.  This was all working a month ago.  PERFECTLY!  Why in the world....I know, I know. It's the nature of the beast. 


On top of all this I haven't been sleeping well. I know, what D Mama does sleep well but this is worse then normal, which makes this D Mama more emotional then normal. I don't handle things as well when I am sleep deprived. Well, sleep deprived more then normal.  


Needless to say, this is life for me. I'm not complaining, just stating a fact. I have big shoulders and I can carry a lot. The bright side of all this I am still finding my joy!  Seriously things could be a lot worse. But I have all of you out there supporting me and cheering me on!  That keeps a smile on my face through it all. :)

Move Day

1-11-2011 Move in day in Grand Rapids.  Our Children's Hospital opened it's new state of the art facility today! I couldn't be more excited and humbled at the same time. 

 

While I never want  any of my kids to be sick or have to have surgery, having a child with Type 1 Diabetes means trips to the Emergency Room and hospital stays are inevitable.  Having a state of the art facility right where I live is priceless.  

Info from the Helen Devos Website about the new hospital: *if you watch the video (which you should, it shows some of the awesome feature of the new hospital) be sure to turn the music player off first!

"Since 1993, Helen DeVos Children's Hospital has grown to become a community resource, a regional referral center and a national leader. The new 206-bed children's hospital features dedicated pediatric emergency and trauma services, operating rooms and diagnostic imaging, and comprehensive care for ill and injured children. Every hospitalized child has a large, private room to accommodate parents staying overnight. Even the neonatal intensive care unit (NICU) includes 40 private rooms in addition to semi-private rooms.

Our team of more than 150 pediatric physicians in 40 pediatric specialties works with nurses, therapists and allied health specialists who have devoted their careers to caring for children.

As a teaching hospital, training the next generation of pediatric experts will be done in collaboration with the Michigan State College of Human Medicine."

There are some really neat features to the new hospital. Of course the building itself is gorgeous but inside is where the magic is.   

• a playroom on every floor
• a gorgeous outdoor garden for the kids
• spacious family rooms with refrigerators, double beds, bathtubs, and on-demand movies 
• all the artwork in the building was created by children for children.
• an Emergency Department solely dedicated to pediatrics. 
• A bubble wall featuring a soothing look at enclosed, moving water that creates bubbles
• Interactive play area.  Description taken from the Hospital website: Children see their image abstractly projected on an interactive screen which functions like a video game console but without controllers. For example, children can watch falling snow and make a "virtual snowball" by bending down to "scoop up a handful of snow" and "throw" it against the screen to watch it splatter. Another interactive feature: liquid underneath the floor that changes color when stepped upon. 
• Restaurant that features a Pizza Station, Salad Station and an Ice Cream Window.  
• Coffee Kiosk with hot and iced coffee beverages. 

Helen DeVos Children's Hospital will always hold a special place in my heart.  Helen DeVos was where we took Lovebug when she was diagnosed with Type 1.  The staff there is incredible and we had a wonderful experience, despite everything. The care they took to make sure Lovebug was comfortable and helping to keep her entertained was simply amazing. I could not have asked for a better hospital for us to end up at. 

I just can not say enough good things about this hospital and I am so proud to have it in my community.  

Please, Ricki!

I  was thinking this morning about what I wanted to share with you today.  I had lots of ideas in my head but none where really tugging at my heart today.  Until Ricki Lake made a ignorant statement on Good Morning America this morning.  


Ricki made the comment this morning, when talking about her new book, that suggested that Juvenile Diabetes is preventable. Ricki has posted this correction to her statement on Facebook page which was also posted on ABC's website.  

"When speaking about my new book and AllStride program to combat childhood obesity earlier this morning on Good Morning America, I commented that Juvenile Diabetes was preventable when in fact it is Type 2 Diabetes. This was a mistake on my part and in no way was meant to offend anyone dealing with the very serious disease of Juvenile Diabetes."

Ricki, We fight these misconceptions EVERY DAY!  It is NO help when you goes on a television show that is watched by MILLIONS of viewers and spew more misconceptions.  The media (in general) is ALWAYS putting these misconceptions out there; never distinguishing between Type 1 and Type 2.  

Please Ricki.  I get it, you made a mistake, you misspoke yourself. Whatever the case YOU have a chance to make this right TONIGHT, for the MILLIONS of people who watched you on air this morning. For my daughter and all the other children who suffer from this horrible disease, PLEASE make an ON AIR correction statement on BOTH of the shows you will be appearing on tonight. That would be the BEST way to help us clear up all the misconceptions that you helped put out there this morning. Please do it for all us mom's out who have the full time job (as in 24/7/365) of being Artificial Pancreas's for our children. 

We do everything we can to put a stop to these misconceptions. Will you please do your part and help us out?  

I will thank you. My daughter will thank you.  All the other D Mamas and their children out there who are fighting for the same thing will also thank you. 

Project 365

Now that it is 2011, it's time to start my project that I have been waiting to start for a couple months now.  

 Project 365 - Life with Diabetes in Pictures.  

I am very excited about this! 


I have been inspired by some pretty awesome ladies to do this but the one who got me started thinking about it was Jen of I am your Pancreas.  (Tracy over at My Life with The Superhero and The Princess just started her own Project 365!) She has had a Project 365 going on over at her blog for a while and her pictures are AWESOME! While I am not a talented photographer, like Jen, I do think it is a wonderful idea to share our life with diabetes in pictures.  I'm not sure who started the idea, but I am going to run with it.  


So, as not to bog down this blog I started a new blog that is just for my Project 365. (Tracy was my inspiration for the separate blog, wonderful idea!) Simply Named; Sweet to the Soul Project 365. You can get to it by licking on the Project 365 tab above or click on the image below. 

I will also have a link for you to follow my posts on that blog so you can get a new picture each day and get a glimpse into our life with diabetes in a whole new way.  


If you are working on a Project 365, let me know and I will link you up to my page tab above. I want to be able to share all the other Project 365's out there with my followers.  

Resolute

  res·o·lute: definition: adjective: admirably purposeful, determined, and unwavering.

I'd say that is the perfect word to describe my attitude for my New Years resolutions.  You see this year I am determined more then ever to make my resolutions a reality.  My resolutions aren't just your run of the mill, they are purposeful and meaningful to me.  


This year I am resolute to advocate, educate and raise money towards a cure for diabetes.  


I am going to advocate by becoming part of the JDRF Advocacy.  I will advocate anyway I can, focusing on Diabetes Management in Schools. 


I am going to educate through my blog, through the Walk to Cure Diabetes and any other way that I am able. 


I am going to raise money for a cure through fundraisers to help out The Faustman Lab,  Diabetes Hands Foundation,  and the Walk to Cure Diabetes.   


Why did I choose these things?  I choose them because they are my life. They are my families life. They are Lovebug's life.  Mostly I choose them because they bring me HOPE.  Hope in a cure for Lovebug someday and Hope for a better life for her.  


You know, Diabetes hasn't been all bad.  It has strengthened my faith. I has taught me more about myself then I ever thought was possible.  It has taught me to live hard and love harder.  It has taught me to laugh at life. I have learned that the good days get you through the bad.  It has taught me what is REALLY important in life. Because of Diabetes I have friends that I wouldn't have ever met. It has brought me that deep since of HOPE that I never had before.


This year I am going to advocate, educate and raise funds for a cure. 


What are you going to do?