Sunday, March 10, 2013

I'm so sorry...

I'm so sorry that my child is an inconvenience to you.
Ella has a chronic disease that requires some special needs.
You can't just sweep it under the rug or pretend it's not there.
As hard as we try to give her the most normal life possible,
we can't make it go away.
But she can do anything and eat everything everyone else can.
It just takes a little extra time & planning.
Livie doesn't have a chronic disease.
Not yet.
She doesn't need insulin.
Not yet.
But she also can't keep up on her own.
If we tax her little 3-year old system and load it full of carbohydrates,
I will see a blood sugar number > 200 staring back at me.
And I don't want to see that.
We are all doing the best we can to feed her meals that will be easy & gentle on whatever remaining beta cells she has. Because, in theory, if we can give her beta cells a break, we may be able to prolong full onset of Type 1 Diabetes. And if I can get just one more year...just ONE MORE YEAR...without the worry of insulin and highs and lows and blood sugar checks and night-time monitoring and ketones, then it is worth eating chicken and green beans for dinner EVERY NIGHT.
I'm not asking you to eat chicken & green beans every night.
All I'm asking is that you be considerate.
And yes, that might mean that you are slightly inconvenienced for one afternoon.

But I think I should be able to ask that, right?
Because "We're Family and "That's What Family Does"
Isn't that what I've been told time and time again?
You see, telling my family to not come because you're not willing to change a darned thing isn't OK.
Not when they are related to you.
They are so amazing, don't you see that?
Don't you want to be a part of their lives?
To do ANYTHING to be a part of their lives?  
There are so many people that ARE willing.
The mom at the preschool who overheard my conversation with the teacher and said she would bring in crystal lite for all of the kids instead of lemonade because she didn't want Livie to feel left out.
The neighbor down the street who knows nothing about Type 1 Diabetes but is willing to learn so my daughter can play at her house.
The Girl Scout Mom who is willing to learn all about Ella's pump so that she doesn't have to be the only one with her Mom around all of the time.
The Grandparent who was up 4 times last night checking Ella's blood sugars just so that she could have a sleep-over at their house.
The school nurse who texted me at 7:30pm Friday night to see how Ella was doing after her crazy combo-bolus for a 70 carbohydrate pizza hot lunch.
I have learned so much over the past year.
I've learned much happiness and much heartache.
I've learned that sometimes blood isn't thicker than water.
I've learned who my true friends are.
I've learned which family members I can count on and which ones I can't.
Which one are you going to be?


  1. Wow! I read this with tears in my eyes. My family and friends have been incredible. I'm so sorry you have some who have not been, but glad for those incredible people who are so supportive!

    1. Most have been wonderful. It's the people we only see once in a while that just don't get it. Or don't want to get it, I suppose.

  2. I like the way you've said everything in this post...except for the title. You're just playing the hand you were dealt, and doing a damn good job of it. You have nothing to be sorry for.

    1. Thanks, Scott. I'm not really sorry. :)

    2. I read it as some super-acidic sarcasm.
      LOVE IT!

  3. If you are 'putting anybody out' by protecting your babies...SCREW EM! Family should bend over backwards for those precious girls. Aunties got freeze dried green beans with Livie's name on em....hahahhaha. Wait...I'm serious....hhahaha

    1. And probably even freeze-dried chicken, too!

  4. Same here. It's impossible to understand. I try for it not to, but it hurts my feelings sometimes. They are family - my girls are awesome and they have been dealt this crap. Don't you even want to know how they are doing? Would it kill you to save the nutritional label of even one item of food for the bazillioin family gatherings? Do you even know what an insulin pump is? We would be happy to tell you.

    1. I know, right? But then the Class Mom calls out of the blue because they're having a chef demonstration at school and she wants to make sure everything they're planning is OK for Ella and I know that there are people out there that care. Just have to learn how to weed the ones that don't out of your life!

  5. It sucks when others don't understand, but it sucks even more when it's family. Sorry you are related to jerks. There is no reason they can't try other than the fact that they are selfish.

    Can you tell this makes me mad?

    1. Seriously. And then there are those who are thoughtful like the Mom who wrote me this response today when I thanked her for inquiring what Ella can and can't eat:

      "Yes, of course. We want to make sure Ella will be okay. We would want the same for XXX so no problem at all!"

      Why can't everyone be like this?

  6. Great Post! I'm amazed how people would feel inconvenienced by our kids. I get that from work sometimes. People must think we gave type 1 to our kids with bad diet. I could vent for an hour. I'm glad we both have people who do want to understand and want to help.

  7. D truly does weed out those who are willing to make sure our kids are included. It sucks when those weeds are people we thought would be the most understanding and willing to help, no matter what that help meant.
    Love you guys!

  8. this made me cry a little. the kindness of the crystal lite and your tender care of Livie's remaining beta cells. you're such a good mom.

  9. I am sorry you are experiencing this! I was 22 before I had to deal with family who acted like that. It was before I got my pump, and I had to eat at a specific time. They knew I had to eat at a specific time or I would be low. And yet, they would not be ready for dinner (to go out because heaven forbid she actually cool) until 2-3 hours after that time. Then they wondered why I stopped visiting...

  10. just visiting your blog for the first time. people continue to impress or disappoint me daily with their tolerance or lack there of for my girl too. by the way...i laughed out loud at your bio where you state that you're your daughter's pancreas! i'm so using that! thanks for visiting my blog and for your comment :) hang in there!