Thursday, April 4, 2013

My Six Year Old Has A New Baby Monitor

My youngest child, my daughter, Eleanor, is 6.5 years old, but the UPS truck just dropped an box on my porch containing a new baby monitor for her.

Eleanor shows off the donut earrings
 she got from the Easter Bunny

23 days ago, she was diagnosed with Type 1 Diabetes, and in 23 short days reality has been stained,  turned inside out, shrunk in the wash, hung out to dry, faded in color, torn and mended, and here we are, with a very different reality.

I thought she had leukemia.  I knew something was gravely wrong.  Leukemia jumped into my head because she has three blood relatives who've had it, and I've spilled much hearts blood fund raising for that worthy cause.  Before I took her to urgent care, I googled, "leukemia," "anemia," and "mono," but I didn't google diabetes.

Symptoms of Type 1 Diabetes

• Increased thirst and frequent urination
• Extreme hunger
• Weight Loss
• Fatigue
• Blurred vision

I took her to Acute Care For Kids on Sunday March 10.  It was the day we changed the clocks, and she'd slept until 1:00 pm. 1:00 pm!! At 1:00 pm, she woke up, ate an enormous lunch and 20 minutes afterwards promptly curled up on a bean bag chair and went right back to sleep.  That's when I started scanning my memories of the last week.  That's when I really worried.

I remembered the virus she'd had the weekend before.  She'd caught it from her brother, but she hadn't been as sick as he was.  He ran fever for 6 days.  She only had fever for 3.  She didn't have fever on Tuesday, but I kept her home from her science class because her energy was so low, and they take hikes there.  I figured she was still getting over the virus.

On Wednesday on her way up to her bedroom loft, she said to me, "For the last 4 days it's hurt my legs to climb the ladder." Again, I blamed the virus.

On Thursday, her friend Lily, stopped me in the hallway outside of dance class and said, "Eleanor didn't feel well, she had to sit down and rest during class today."  That was beginning to be a little weird.

On Friday, I had a migraine and Michael took her to rehearsal instead of me.  He texted me a picture of her in her costume, with a little smile on her face.  That picture makes me sad now.   She must have felt absolutely awful.

On Saturday, we went to Gifted Kids Games day, and her friend Mabel joined us.  Eleanor played the games, but was listless, and quiet.  She went to the bathroom a couple of times, but it didn't feel excessive.  She also asked for a drink, and I got her a Sprite.  Scary to think now what that did to her BG.

Then we had a family birthday party to go to, but we ate out first.  Just before we left the restaurant she said, "I think I'll go to the bathroom before we get in the car."  So she scampered over there and went on her own.  No problem.  However, I do recall, and this was the first time I noticed the frequent bathroom trips, she asked for the restroom again not long after we arrived at the party.  I went with her.  She was very quiet and clingy at the party, she sat beside me with a long face.  I was actually kind of annoyed with her, because a woman was being very friendly and trying to chat with her about the theater, and she wouldn't really make conversation.  This is very out of character.  I couldn't figure out what was wrong with her.  I left the party early to take my older son to a teen dance.  We had two cars, so Michael took her home.  I came home late and didn't see her again until morning… when the very late sleeping happened.

So, now, here we are 23 days later and I'm still adjusting.  This is my first blog post, and I have much more to say, but I'll take it a bit at a time.

I'm so sad.  My heart is broken.  I'm glad we can help her. 100 years ago, she'd just be dead.  If we lived in parts of the world where insulin is not available or too expensive, she'd just be dead.  If she has a low during the night…she could…just…be…dead.

Other things I'm sad about.  Assuming we keep her alive, and she lives a reasonably healthy full life, which is actually quite likely.  I'm sad anyway.

Here's what I'm sad about, and frankly, any one of these could be the topic of a future blog post:
• She was born at home, but it's unlikely she'll be able to have her babies there.
• Every time I look at the digital slide show over our fireplace and see her smiling face, I think, "That was before."
• Her brothers are worried about her.  (They are at my dad's right now, but he told me Kenneth was up at 4:00 am worrying.)
• I was on the brink of some flexibility and freedom.  Kenneth took his Red Cross baby sitting training during a Spring Break workshop while Eleanor was in the hospital.  It's a cruel irony.
• A teenager said something to her about her diabetes during rehearsal, but she wouldn't tell me what they said.  I have nowhere to go with that one.  I didn't press.  She's entitled to her privacy, but why didn't she want to tell me?  She told me that it happened, so she wanted comfort on some level.
• No matter what everyone says, birthday parties are going to be a PITA.
• She really wanted a chocolate rabbit for Easter, and she didn't get it.
• Her teeth are at great risk of decay now.
• It will never ever ever go away.
• I'm at the mercy of doctors to use their power to grant me or deny me the things I want to care for her.  I can't just choose.  They hold the cards.

and finally, it makes me really sad, that…

• My six year old has a new baby monitor.


  1. I hope that this blog brings you a sense of control over your world right now and that it also connects you to other families who are going through this.
    Much love to you and yours!

    1. Thank you Suzan. Writing this is bringing me some release. Eleanor is enjoying it too. She wants to contribute in her own way. She has some bet definite ideas!

  2. I came over from the comment you left on my blog. I hope you find some information/community/solace as you adjust to this "new normal."

    And, for the record, I've had type 1 diabetes for over 26 years and my teeth are fine. :)

    1. Hi Kerri, thanks for stopping by. I've enjoyed the bits of your blog that I've read, but I haven't had time to read too much in the shirt time I've had. I did read the post secret post. All the comments kind of ate my heart up. But it was great to read them because of the insight. I'm struggling somewhat to separate and remain cognizant of the fact that this is happening to her. It's her diabetes, not mine. Those posts were helpful.

      Regarding the teeth. I'm so lad your teeth are fine. I think I have tooth issues! I have had a terrible time with my dental Heath. It could be worse, but I've had a lot of cavities, and crowns, I had 7 teeth broken in a accident. Anyway, my point is, keeping healthy teeth was one of my neurosis before she was dx! :-/

      Additionally, she is in The King and I, and the shows run late, and she keeps falling asleep on the way home before we can brush


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