Amber’s Awesome Angels

Tonight Amber showed me a couple Barbies that she’d been playing with today, and one of them she’s always said is her twin.  It’s got blond hair, and she dresses it with the same kinds of clothes she wears.  She held held that one up and said, “This is me all grown up.  See what’s different?”  I didn’t understand what she was thinking at first.  I said something about what she was wearing, and I made a joke about Amber growing up to only be a foot tall, like that Barbie. 

She said, “No, Daddy.  She doesn’t have diabetes.”

It was all I could do to not cry.  I just hugged her, because she was in such a great mood that I didn’t have the heart to explain to her right then that we never find a cure for this damn disease which has invaded our lives.

Now I get to spend the night thinking about how I’m going to talk to her about this tomorrow.  A Monday is an appropriate day to break your child’s heart.

One of the hardest things to get people who aren’t parents of kids with serious or chronic diseases to understand is the fear.  The fear of loss of control of management.  The fear of not being there when something happens.  The fear of losing your child for something preventable.  The fear of your child growing up and not needing you to help them any longer. 

I belong to an email distribution list on Children with Diabetes for parents of kids with diabetes.  There was an email sent today from a mother whose daughter is about Amber’s age.  She told a story about a friend of her daughter wanting to take her out to a movie and a meal.  She talked about sending a scale along so that her daughter could weigh her food to be able to bolus properly.  She talked about how nervous her daughter was about counting carbs and bolusing without her mom there.  But mostly she talked about the fear.  The fear of not being there.  The fear of the unknown and not manageable.  The fear of making a mistake and harming your child. 

As a parent of a kid with diabetes this is the fear we live with every day.  I can describe what the fear is like to others, but you just can’t know.  And this isn’t meant to make people feel bad, like their empathy isn’t appreciated and helpful.  It’s just meant to say that unless it’s your kid, you just won’t understand.  We have to worry about Amber whenever we send her out to play.  We have to worry about Amber when she goes to a friend’s house.  We have to worry about her at school, on field trips, at day care.  We have to worry that we’ve trained her teachers well enough, that we’ve explained the symptoms of lows to the parents of her friends.  We have to worry that she eats all the food in her lunch, so that the insulin amount that we calculated at breakfast is correct and she won’t go low.  We have to worry that she’s not going to do well in class because of too many highs.  We have to worry about what she’ll do after school next year because she’ll be too old for day care.  We have to worry about her going low as she sleeps at night and not waking up.  It is a constant state of fear.

I hate that this damn disease makes us feel like that.  I hate that this damn disease is taking away the innocence from our kids, as they are having to deal with the same things. 

Diabetes sucks.  And everyone can understand that.

At the Children with Diabetes conference in Orlando this summer (yes, I still need to post about that), one of the things we realized is that there is a lot we don’t know about how to fully use Amber’s pump.  Everything from understanding the different types of boluses to insulin duration to basal rate testing.  So when we found out CWD was going to have a regional conference in Minneapolis, we jumped at the opportunity!  Not only could we go to a CWD event, which are just awesome and inspiring, but we could drive there and not have to buy airline tickets.  Plus my sister, Patty, lives in Minneapolis, so we thought we’d get a chance to see them as well.  We did a little bit, but not nearly as much as we’d have liked. (more…)

Wow, what an emotional weekend. (more…)

Diabetes (di-a-’bE-tEz)

From the Greek word meaning “a siphon”

Wow, I hadn’t heard that before, but it is such an appropriate name, both in the physical and metaphorical sense.  If untreated, it physically siphons from you your life.  It forces your body to consume itself.  Insulin fixes that, however.

In the metaphorical sense, diabetes also siphons your life from you.  A person with diabetes is in the prison of shots or infusion sites, insulin, carb counting, and finger pokes.  The constant-ness of it just continues to eat at you, continues to keep you restricted.  The challenge for a diabetic is to have the personal strength and conviction to ignore those restrictions.  Through JDRF and CWD, we’ve been exposed to dozens of people who give us hope and inspiration. 

We also get hope and inspiration from those of you who choose to donate to find a cure just because we tell you our story.  You have no idea how humbling that is for us.  We also get hope and inspiration from those who choose to join with us to walk or volunteer.  That kind of physical and emotional support helps us survive the day to day prison that is living with diabetes.

We talk a lot about how bad diabetes is, how hard it is to deal with it.  But something happened over the past 8 months or so which really puts things in perspective for me.  A family that goes to our church had twin 3 year old girls, cute as a button and full of life.  They began to notice last spring that one of the girls was having problems focusing and balancing.  She was diagnosed with a tumor in her brain stem.  This type of tumor is inoperable and always fatal.  They family did what they could to extend her life as long as they could, and they treasured every moment they had with her.  She passed away early this morning, just a few weeks before her 4th birthday. 

No matter how bad we think we have things, no matter the troubles we see with highs and lows, with malfunctioning pumps, with expired insulin, and all that, we still have our children.  We can still listen to them complain about finger pricks, we can still give them hugs when a shot hurts, we can still treat them when they go low.  I almost feel guilty being an advocate and a fundraiser for my child when others have to experience grief like this. 

I’ve dealt with death before, but watching one like this was different.  This was a life at the beginning, this was a life who was so young but old enough to understand what was happening to her.  This was the first death I’ve been even remotely close to since Amber was diagnosed.  This was harder on me than I ever expected.

Cherish every moment you have with your kids and family.  Consider yourself lucky to still have your children around for you to cherish.

We just got back from a Western Caribbean Disney cruise, and it was awesome!  The links are grouped into sets by day as well, if you click around the flickr site.  We went on this cruise only because of Amber’s diabetes.  I can hear you know saying, “Huh?”  Well, here’s the story.  Friends of ours we met through our support group meetings had booked passage on this cruise, and they suggested we go as well.  So we did.  It was a blast.  We went to Disney’s private island twice, and we went to Costa Maya and Cozumel.  Great trip, I’d definitely recommend a Disney cruise to anyone and everyone!

Well, two and a half, anyway! (Sorry, Kim Letz!)

This past summer at a ChildrenWithDiabetes conference in Orlando, we had the opportunity to meet Miss America 1999, Nicole Johnson Baker. Pictures and story from the first time are here. We were so impressed by her. She was so down to earth and friendly, and she has a great message. We got to hear more of that message this weekend. Nicole came and spoke at our Time to Talk meeting, which is our local support juvenile diabetes group.

She talked about the obstacles that she had to overcome in order to make it to Miss America, as well as the prejudices she faced from people who told her she couldn’t do it. She’s a great inspiration for kids.

Thanks to Animas and Kim Letz for bringing Nicole in to Iowa!!

This site is just plain awesome, very moving.