Keep Me In Your Heart for Awhile

I've read about the passing of Eilish and the many, many eloquent blog posts about our children. About our collective sadness and shock. I think it jars us in such a way that our world just tilts slightly. I am so filled with grief and anger and 'knowing' that it's even hard to write about it. I know my thoughts are with her family. I know she is at peace. I know that everyone wishes she were still here, with us, on Earth.

 I thought of one specific song these past few days, by one of my favorite musicians in this world, Warren Zevon. He passed away in 2003 and before he died of mesothelioma (a form of cancer associated with exposure to asbestos) he produced an extraordinary album, The Wind. He refused treatments that he thought might incapacitate him. If you never saw his performance on the David Letterman Show in 2002, in which he was the only guest for an hour, you missed something incredibly moving and intense.

I thought I would share this with you. The pictures are of Warren, recording his album and this song. The words remind me of the heartbreak we are all experiencing now.

Gratitude

Praise the bridge that carried you over. 

~George Colman

Gratitude. How do I begin to say thank you for the support I have felt since Grace Let It All Go? There are comments that left me speechless. There is Kelly's post about Grace, telling her she is not alone and she understands. There are all of you out there, supporting and caring and telling me so.

I thought when I started blogging that it would be a way to help me understand my daughter, and in the process, begin to share this journey. What I didn't know is how much it would cause me to change as a person. How much healing it has led me to. How much growth there is to be had along the way.

Thank you for helping me grow.
Thank you for caring about a little girl.
Thank you for always understanding.
Thank you for always standing by and letting it be exactly what it is.
Thank you.

Letting It All Go

Honesty is the first chapter of the book of wisdom. 

~Thomas Jefferson

8:30 pm Last night

I was about to tuck Grace into bed. The following is our conversation, in summary. I think it was about time. And she let her rip.

Goodnight honey, have a good sleep.... What's wrong? You look like you are gonna cry...

(The tears begin....) It's just that... it's that... I hate diabetes. I hate having to checking my blood sugar and I hate that I can't eat candy like other kids when I want all the time and I hate that I am different. You know why I loved camp Mom? You know it's because I wasn't the one who was different and I was there with all the kids and I wasn't different... I hate that I go to my friend's house and I can't eat what I want and I have to call you and get checked. And I don't like that it hurts sometimes and I just don't like it.

I am so sorry honey. I want to tell you I understand, but I'm not the one who has diabetes. So I can tell you that I am sorry you have diabetes and I will always help you. How can I help you? I am so sorry that you have this Type 1 diabetes. Mommy and Daddy really are sorry about it.

And you know what? When I am at the nurse's office, some kids peek at me checking my blood sugar and they gotta LOOK LOOK LOOK at what I am doing and they peek around the corner and I have NO privacy in there. It really bugs me. I mean they are looking at me do it and I don't like it. And I have to go to the nurse's office, that's another thing. I have to go and sometimes I am out of class and I don't like it. I don't like it that I have to go.

Maybe we can talk with Mrs. B and make a solution. Can you check around the corner of the desk or on the other side? Can you turn your back on the kids who are looking? What about the other table? I know you don't want people to look. I think they are looking cause they are curious, not cause they want to bother you. You can always ask them not to look and you can tell Mrs. B. to tell them not to look. I'm sorry you feel you don't have privacy sweetie.

But this stinks Mom. I mean I don't like it. I really don't like it.

Can I tell you something? Something I don't think I have told you lately? That I love you and your diabetes?

You LOVE diabetes? I don't think you can LOVE diabetes Mom!!!!! You love me cause you HAVE TO, you are my Mom!!!!

Well I do sweetie. Diabetes is a part of you, like your blue eyes and your brown hair and your funny personality and the way you dance around the house. It joined you late, at age 6, but it's just one part of you now. I love it cause it's part of you. It doesn't mean that I don't like how it makes you feel and what it does to your body and all the stuff we have to do because of it. But I love it cause I accept it as part of my love for you. You know your sister and her autism? I love the autism, cause it's part of her. It just is. I love her jokes, the way she loves things so intensely, the way she shares her joy, her love of all things Veggie Tales and her smile. And her autism. And your other sister, I love how she always gets the joke, her glasses and her hair and her braces and her love of all things beauty-related. You are all so different, but you all have pieces that I love. You happen to have diabetes. I love it cause it's part of you. That's just how I feel about it. You don't have to love it, it's ok. I just want you to know that I love all of you and it will be OK.

I'm not sure I love it Mom. OK, so I don't actually hate it. I mean I don't like it - the checking and the calling you and the carb counting, those things...I mean, B has a feeding tube in my classroom and he's different and he goes to the nurse all the time and my friend C has asthma and she can't go on the hayride at the orchard and they can't have a cat. I got a lot of different friends Mom. I just am sad. I'm sad about having diabetes tonight. I don't want to have it. 


You want to call someone? You want to talk to L from camp? I have her phone number? Then you and her could chat about camp and what fun you had and then you could talk about how the D is bringing you down lately. You could call Kelly - she could talk with you. I mean, I know she's a grown up and all, but she has had D since she's been little like you. She would talk with you. I could call her and you could chat...

I could write to Kelly and tell her. I'm not sure I wanna talk with her, I think I am gonna cry and I don't want to talk with her and cry. I think I am tired Mom. I am really tired.


You want me to read some of your story to you?

Yeah, that would be good. I'll go to sleep and you read. Then I can fall asleep. And Mom, you know what? Thanks for taking care of my diabetes. I mean, I know I don't like it, but I 'm glad that you love it cause you love me.

AWOL from the D

Hey gang out there! Where have I been? Blogged down with a million things to do, ending with a huge conference my autism support group is putting on this October 21st. I am the Treasurer and I'm doing all Treasurer-y kinds of things. Up to my eyeballs in it. Mired they would say.

And working.
Oh and the three kids.
Oh and the D.

I never thought that the D would take a backseat, but it has these past few weeks as Mommy is mired knee-deep in conference. And you know what? It has all been OK. In fact, it's been refreshing to NOT be weighed down with this number and that number and OH-MY-what-should-I-DO number. The numbers have rolled like water off of a duck's back.

And it's been good.
Hell, it's been great.

I bolus for the 250 and it comes down. I don't have time to sit and wait and watch like a hawk and worry. But you know what - it comes down and I never even watched it once!!!!

I carb-guess and frankly, I didn't do half bad in the crap shoot that it sometimes is. I didn't guilt myself into thinking I did a bad job, when I did a mighty fine job.

I pack her up and off we go - to this meeting, this event, this get together with the committee so I can work. And she does just fine. She manages. I manage. We snack and we graze-bolus and not once do I worry that she is eating or not eating. Flippin' refreshing.

Sometimes it's good to be mired in something else and realize the one thing that I have tried to tell myself since this journey began.

That it's going to be OK.

Sugar Bolus Baby!

So many giveaways on these blogs nowadays! Here is a great one from Jen over at I Am Your Pancreas.

You can win a Spibelt and a package of local Seattle made coffee goodies.

So what are you waiting for?

Head on over and enter!

No D Day! It's all about quilts baby!

George over at Ninjabetic had a great idea - a No D Day! where we all blog and Facebook and Tweet about our other lives, where no D is mentioned or even hinted about. I hope you all participate today as I want to know more about each of you. So, here goes, a whole blog post with nary a D in sight. Enjoy.

It's all about the quilts baby!

I am a quilter. I love quilts of all kinds. I love to sew and I love to create. I don't have nearly enough time to quilt these days and I truly miss it.

You have a new baby? I am right there with a new quilt for the cutie.
You getting married? Voila! A quilt for your bed.
You need to feel loved? A quilt is on its way.

I love the whole process - choosing the fabrics, planning the pattern, sewing the pieces together into blocks, sitting at my machine in the dining room, hand quilting it night after blessed night. It's very cathartic for me.

Here is some of my work over the years:

A quilt for my 2nd born child...

A wall hanging quilt I created that hangs in our upstairs landing.

Three angel-girls on the beach, sporting their wings. 

It reminds me of my three girls at the beach. Oh and it makes me laugh every time I see it.

Can you tell our favorite place to hang is at the beach? The saying reads: 'I'm at my best on the beach in the sun' and it contains photos of my first two girls hanging out and playing there. 

I created it before the 3rd one came along and threw me for a loop :0)

Grace's baby quilt. She still sleeps under it.

My most ambitious quilt yet. It entitled '100 Houses' and that's exactly what it is - 100 houses, composed of varying fabrics. It took me over a year from start to finish to complete it. 

It hangs over our bed in our bedroom.

Here is a detailed view of four of the houses. Can you tell I love color in my quilts?

There you go readers, a glimpse into my non-D life. 

Where the heck have I been???

Life. 

That's what has kept me so busy. I am trying desperately to keep up with everyone's postings and wow, you mamas are some busy writers these days! Great posts everyone is 'pumping out' (get it?)

Here is the latest and greatest:

D Meet-up

Kerri of sixuntilme was in town for an ePharma summit conference, along with Manny of TuDiabetes. She put together a get-together at a watering hole downtown. Of course I went! And she asked if I brought Grace along. Well, no, I don't bring her to bars, but she would have come if I had let her! Bennet from YDMV was there, as well as Lee Ann from The Butter Compartment, along with other T1s that I met. It was a great night of schmoozing and laughing and you know what I really wished the whole night?

That my Grace have something like this when she is a young woman with T1. God willing, she will.

(That's me in the way back on the left side)

Craptacular Day

It sure as heck was on Sunday. Let the numbers speak for themselves:

2 am - 386 (where did that come from???)

5:30 am - 120 (whew, much better!)

8 am - 52 (whoa, this sucks)

10 am - 432 - recheck 393 (big big rebound, crap)

11 am - 137

11:45 am - LO (are you friggin' kidding me???? really? G shows no symptoms - AT ALL)

12:30 pm - 174

1:30 pm - 287 (here we go again!)

3 pm - 263 (oh no, it's hanging around, that's not good)

4:30 pm - 184 (ahhh, good BG, ok, I can live with that)

6 pm - 179

8 pm - 325 (crap on a stick now!)

9 pm - 170

See, totally craptacular in every way.

And the next day, Monday, was a perfect BG day all around, right back on track. Didn't change a thing.

I think the Diabetes Gods and Goddessess are messing with her. Seriously.

Crap-Apple-tacular Day #2

The new Apple store opened downtown. It rocks. I took the girls on Sunday downtown to well, look around and play with all their gadgets and feel like we were in heaven. Yes, we covetted a lot of their items. 

Well, Grace took her iPod Touch into the store. And well, Grace is 8. She laid it down to play on an iPad and a computer and you know what happened. Yep. Someone took it. Took an 8 year old Type 1 diabetic's iPod Touch (there, that oughta get a lot of sympathy votes from someone out there!). I had to say it, cause I wanted to shout it in the store. 

"OK - WHO TOOK MY TYPE 1 DAUGHTER"S IPOD TOUCH?????? 

GIVE IT BACK NOW AND NO ONE SERIOUSLY GETS HURT!!!!"

But, alas, I did not yell it. We searched the store, we looked up and down the street, we asked the Apple workers, the Apple manager - nothing. Now, you should know, we live in an urban city. It was GONE. I mean, like it was probably reset and sold within minutes of walking out the store. It was a HOT item and I don't mean temperature.

I was so very sad for Grace, to learn about something like this. To experience it firsthand. We talked about people in the city and how not everyone is honest and she wondered why anyone would want HER iPod Touch with all her camp pictures on it and her girlfriends pictures and her cupcake maker application and SkeeBall - Mom , they have the SkeeBall game!' - Yes honey I know.

Hard lesson. Crap-Apple-tacular Day #2.

See, I told you, Life.