Wednesday, February 18, 2015

Letting go and letting her

I'm a control freak.  There's no denying it and I have no problem letting my control freak flag fly (within reason, of course... I do my best to not let it affect other people).

Elise was diagnosed at 12 months old, so obviously either Fred or I were in charge of everything at the start.  For the most part I did most of it because I wanted to.  Because along with being a card-carrying member of the Control Freak Society, I also have some type A tendencies.

These two things can be both a blessing and a curse when it comes to diabetes.

I constantly read and try to learn all I could about type 1... but all that information can be scary.

I weigh her food counted carbs down to the decimal point because the accuracy can be crucial... but it can cause meal times to be stressful and makes me crazy at times.

I study her BG readings and dex graphs, trying to figure out how to dose for problem foods, even keeping a journal at one point hoping I could spot patterns... but it's exhausting and what works one day doesn't work the next, causing this control freak all sorts of rage.

Elise has now had type 1 for over 6 years and is in charge of certain aspects of her care.

She does all finger pokes (except while she's asleep, of course)
Helps set up for pump/dex changes.
Cleans the insulin vial/dex transmitter with an alcohol wipe, along with the insertions sites.
Presses the start button to insert the cannula for the pod.

But part of me has been wondering lately if I need to let go of more responsibilities.  She vacillates between wanting more, and wanting nothing to do with D.  And I struggle with the question, "how much is too much?"  She's only 7 after all.

Sometimes just asking her to wash her hands and check her blood sugar puts her into a tailspin.

"Why do I have to do this and nobody else in the family has to?"

"I'm tired of checking my blood sugar!"

"I'd rather not eat so I don't have to poke my finger again."

On days like these, I offer to do it for her.  She seems tired and over-burdened by the disease and is grateful to have me step in and do it for her.  But then I worry... Am I enabling her?  Will this delay her independence?  What will happen when she moves out on her own and there isn't anyone there to take over?

Other times she is gung-ho about her diabetes care. She wants to learn how to count carbs, even asking me to print up a cheat-sheet of her favourite foods to hang on the fridge.  She wants to check her brother's BG after she checks hers (and the sweet boy always obliges). She begs me to let her fill her pod with insulin.  But again I worry... how much is too much?  She's going to be doing this for a long time and I don't want her to burn out.

Because there are so many aspects of her care that I will slowly be doling out on her way to adulthood.

Dealing with insurance companies.

Making doctor appointments.

Scheduling lab work.

Managing prescriptions.

Ordering supplies.

Organizing supplies.

Keeping up with all the technology.

The list goes on (and on).

Parents of kids with T1 who are diagnosed at an age where they rely on us walk a very perilous tightrope. On one side we run the risk of raising a child who is totally unprepared to live on their own.  Cannot count a carb or figure out an insulin dose, and is completely dependent on someone to help with their care

On the other, there's the real possibility of them burning out very early on, when they have decades to go in living with this disease.  We must let them be kids first, and kids with diabetes second.

We try to stave off burnout by doing it for them.

We try to teach independence by letting them do it themselves.

It's a dance, and I'm doing my best to teach Elise the steps.

Saturday, February 14, 2015

Happy Spare a Rose Save a Child Day!

We don't really acknowledge Valentine's Day around here.  I am lucky to have a husband who shows me that he loves me pretty much every day of the year. And I don't need a card company or a calendar to tell me when and how to be romantic.

The only one allowed to be that bossy around here is me.

I did, however, text the following Valentine to Fred this morning as we were frantically getting the kids ready for their 9 am soccer games... it made me giggle.

More importantly, we skipped the flowers thing and donated the money to Life for a Child as a part of the Spare a Rose Save a Child campaign.  

One year's worth of insulin for child who might otherwise go without... I don't think there is a sweeter gift out there.

Tuesday, February 10, 2015

Flowers die... spare a rose so child child won't

The following conversation took place a few years ago...

"Mama? Why do you hate flowers?"

This question was posed to me by Elise just the other day. A neighbour had brought by a vase of flowers because she and her family were going away and she didn't want them to go to waste. Elise saw them and proclaimed them to be, "absolutely so gorgeous."

Apparently she noticed my indifference, because she then asked her question. I made some off-handed remark, then distracted her with something bright and shiny.

Because really, how do you explain to a five year old that flowers are stupid because they die, without sounding like the most heartless person ever?  It's just hard for me to spend a lot of money on something that just sits there for a few days, and then... Poof! They go to the great flower bed in the sky.

Give me chocolate any day.

So why the post slamming flowers? Because Saturday is Valentine's Day. And no doubt roses are in your future; either as the giver or recipient. Enter the Spare a Rose, Save a Child campaign.

In my fridge I have vials of insulin.  Enough to keep Elise alive for months at a time.  Even better, I have access and the means to get more; insuring that Elise has every opportunity to live a long and healthy life.

But it's not that way for everyone.  In some countries, children diagnosed with diabetes will not survive even a year.  In Haiti and countries in Africa, there is a mortality rate as high as 90%.  

The Spare a Rose campaign is simple: instead of giving a dozen roses this Valentine's Day, give 11, and donate the cost of the 12th rose ($5) to provide a months worth insulin to a child in a developing country.  The money goes to the Life for a Child program, which is sponsored by the International Diabetes Foundation.  The IDF distributes the funds raised to established diabetes centers, helping them to provide ongoing care and education to children with type 1 in developing countries.

For the cost of JUST ONE rose, you could donate to save the life of a child. Even though here in the U.S., I am able to keep my daughter alive with life-saving insulin, in developing countries, type 1 diabetes can be a death sentence.

To donate, just click here.  Flowers for Valentine's Day might be nice, but saving the life of a child is even better.

Wednesday, February 4, 2015

It's been awhile...

There's been some fun and exciting things happening around here, but finding a few spare minutes to even compose a thought about them has not been easy to find. So here's a few bullet points before I forget entirely:

  • The video "I am Type 1" was picked by JDRF Canada for their fundraising video for the Telus Walk to Cure Diabetes.  They did some editing, so not as many lovely faces made the final cut at the end, but it's still pretty cool!  You can see their version by clicking here.
  • They also did a french version called, "Je suis un Type 1", which was fun to listen to.  Listening to make me realize that my french is beyond rusty and the "cookies made with poison" line just doesn't have the same ring to it.  You can view the french version here.
  • Right after Elise was in the Bionic Pancreas trial, Fred was contacted by a reporter from Times for a quote or two about it for an article they were doing on Ed Damiano.  Ebola kept pushing back the publishing date, but it finally came out this week.  
Elise checking out her name in print
  • And we finally booked our trip for Friends For Life 2015.  Don't know what that is?  Pretty much the most fun temporary Diabetes commune on the planet.  There are parties!  And learning!  And food labelled with carb counts! And friendships!  And SWAG (Stuff We All Get)! Whew... I could go on and on, but it's something you and our family need to experience for yourself.  Check out the Children with Diabetes website for more info.
So there you go... that's what is happening around here. I have some other blog posts up my sleeve, but for now they only exist in my brain. For now, I'm going to make the acquaintance of the lovely mug of Earl Grey tea that is calling my name.