A few weeks ago, M was crying that she didn't want diabetes any more: "it wasn't fair!"
Thankfully, T often handles these moments.... together will list all the things that hate about diabetes: lows, checking blood sugar, pump changes, etc.
But that night was different.
M: It's not fair that I have diabetes.
T: No, it's not fair.
M: I want to do things all the other kids do...
This is where it felt a knife going into my heart. We have NEVER let diabetes keep Maddie from anything. Anything. Even if it means more work (or less sleep) for T & I.
(Well, that's a lie. Sleepovers. I haven't let her go on a sleepover yet. But I'm working on it - in the next few months. Pray for me!)
Me: What things can't you do?
M: Eat candy everyday.
I started laughing.
Me: Does your brother eat candy everyday?
Me: You don't eat candy everyday because it's not good for your body. Not because you have diabetes! We make good food choices in this family. Candy is a sometimes food. We eat it sometimes as a treat.
She was happy with that answer. But it's gotten me thinking: what else does she think diabetes is keeping from her but really it's a parenting choice??
So I've started giving these long explanations for things....
M: Can I eat the fruit loop necklace I made at school?
Me: No, it's filled with yucky dye and chemicals. Plus you played with it all day at school. It's covered in germs and we just got over the flu. And Mommy can't take another two weeks of the flu.
She rolled her eyes and let out a sigh...
Wednesday, February 20, 2013
When T was diagnosed, we lived in a small house (still do) and storage space was limited.
We came back from our honeymoon to tons of wedding gifts and a boat load of diabetes supplies. For the longest time, all his stuff graced the top of our dining room bar. Then it was moved inside of its cabinets. The poor guy had to balance the boxes on top of the liquor bottles.
And that's the way it was for almost 5 years: me refusing to give diabetes space in our home and life.
Then four years ago today, I reluctantly welcomed diabetes in.
Within hours of bringing M home from the hospital, I cleared out not only one but TWO cabinets in the bar. I packed away the crystal and barware that had hardly been used since we had kids. I rearranged the kitchen to make space for the liquor bottles. I organized bins and boxes to make life with diabetes easier.
Diabetes was here to stay.
Six months later, both started different pumps: M (Animas) & T (OmniPod) - each with different supplies, meters & test strips.
The bar was sold on craigslist and I replaced with an ikea cabinet.
Now with the help of the trusty label maker, the diabetes cabinet is the most organized place in our house.
Tuesday, February 19, 2013
4 years. 1461 days.
Last night, I was troubled by the idea of a Diaversary.
Maddie does't remember her life before diabetes; she's lived longer with it than without. Insulin and a blood glucose meter have always been a part of daily life in our house.
So how will we celebrate February 18th?
By helping others.
We spent this afternoon at AC Moore picking out craft kits. The kids paid for them out of the share jar money. (I'll do a post later on our 3 jars: save, spend & share.)
The amazing Child Life staff at INOVA Fairfax have supported M, our family and the greater Nothern Virginia diabetes community for the last four years. They volunteer their time and resources to our local diabetes support group. Young 20 & 30 year olds, who give up one Sunday a month for M & her friends! . There really are angels on earth... and I believe they are Child Life specialists!
The craft kits will be donated to the Child Life staff for them to use with other kids on the P-ICU floor.
M loves a trip to AC Moore! In her mind, it's better than a toy store. But she just didn't seem to be enjoying herself today.
She had been running a little high (before &) after a late lunch, but she had enough insulin on board to bring her down from the 200s. I figured she was tired from last night's crazy numbers and the tooth fairy excitement at 1:30.
At checkout, M asked if she could use her own money to buy a bottle of water. Red Flag.
First check 483, Second check 408. Ugh!
Really Dexcom?? Really? How can you be that off? *
Poor kid, no wonder the decision between the purple or pink friendship bracelet kits took 10 minutes.
Thankfully, a large bolus and a temp basel had her back in range for Part 2 of the celebration:
Maddie's favorite dinner: tortellini with peas & bacon
CAKE! Chocolate with cream cheese icing plus fresh strawberries between layers. Yum!
And "kid" wine. Or sparkling grape juice!
Here's to 4 years of an amazingly resilient kid!
* 10 days until we toss this dexcom and move to the new G4!!
Monday, February 18, 2013
Sunday, February 17, 2013
This started off as a short Facebook post and it grew. So, I decided tonight was the night to start a blog. Here goes nothing....
Valentine's Day week, four years ago, the flu hit our house. And a few days later on February 18th, M was admitted to Inova P-ICU. She was diagnosed with Type 1 Diabetes and just like her Daddy.
For the last 10 days, since C's positive flu test, this has been a constant script in my head.
The flu happened and then it was diabetes.
Every time he's asked for water in a demanding urgent tone, I checked his blood glucose. The numbers aways normal….
Night time calls for a drink, keep me up for hours. Even if he only took the smallest sip before returning to sleep...
I hate this week every year. The people in my house are always sick and I can't get it out of my head.
Many people celebrate their child's Diaversary, the anniversary of the day they were diagnosed with diabetes.
For the last three, I was just thankful to reach February 18th without our third Type 1 diagnoses. Our only "celebration" has been Trey and I quickly mentioning in passing that we survived another year.
But, tomorrow will be different. I think M needs a celebration to honor how much she has accomplished this year…
If only Pinterest had diaversary party ideas...