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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.

Monday, January 5, 2015

If you decide to get out of bed in 2015

If you decide to get out of bed on January 1, 2015, you might just be greeted with a HIGH on your daughter's CGM.

And if you see that HIGH on the CGM, you will go into her room to check her blood sugar. When you check her blood sugar, the meter will tell you 389, so you will pull out the PDM to correct her.

And when you pull out the PDM to correct your daughter, it will screech at you in error.  And tell you to call Omnipod support.

And when you call Omnipod support, they will tell you to reset the PDM.  But that won't work.

When the reset doesn't work, Omnipod support will tell you they can't get you a new PDM for two days because it's NEW YEARS DAY! and people who depend on their medical supplies are SOL because, well... Happy New Year!!!

And when you're done freaking our about that.  And the fact that you have no Lantus.  And the fact that you've never USED Lantus.  And the fact that 2015 sucks balls so far, you will turn to the people who live in your computer.

And when you turn to the people who live in your computer, they come through for you.  And angel choirs sing.

But when the angel choirs sing, they get interrupted by a series of mishaps that lead to you getting an old version of the PDM and then your husband has to drive across town to get another PDM that is actually the new one.

And while your husband is getting the PDM, your garbage disposal will clog. 

And when your garbage disposal clogs, you will be reminded that it's NEW YEARS DAY!, and people don't work on NEW YEARS DAY!  And if they do, it will cost you the price of a month's worth of diabetes supplies to pay for it.

And because you are so cheap, you get on the Internets and search "unclog garbage disposals".  You grab a sink plunger, baking soda, vinegar.

After you grab said ingredients, you will go to work on your sink for about an hour, with no results.  You will then decide to try one final time, plunging that bad boy with everything that is in you.

When your tenacity pays off, and your sink begins to drain, you will thrust the plunger into the air with what could only be called a primal scream of triumph.

You will almost want to holler "YIPPIE-KI-YAY, (insert expletive)!", but when you see that your seven year old daughter has come to see what all the fuss is about, you will dance a jig with her instead.

And when your husband gets home with the replacement PDM, you will program it, slap a new pod on your daughter, and call it a day.

Because when you get out of bed on January 1, 2015, you might just get handed a big ol' crap sandwich.  

Monday, December 29, 2014

One flu over the cuckcoo's nest

Since December 17th, our household has been a hotbed of germs.  Mostly of the flu-like nature.  I am currently writing this post while recovering from my own battle.  It has left me light-headed and quite stupid, so please forgive anything written that makes no sense.

I wanted to chronicle my family's battle with the flu so that I can look back and see who sick and what was effective as far as treatment.  Plus I'm a little bored and have seen all the Love It or List It episodes that are on today.

Elise
Received flu shot back in October.  Was first one sick.  First trip to doctor showed negative for flu or strep. Extremely high BGs continued as well as fever, so I took her to urgent care.  Flu and strep re-test also negative.  Amazingly awesome doc who has experience with T1 decides to do a urine test. Positive for bacteria. Dx is UTI. As of today, still no flu.

Fred
Second one to fall.  No flu vaccine. Started getting sick on/around Dec. 21. Extreme flu-like symptoms, but no doctor visit.  Is still not feeling well as of today.

Lucas
Received flu vaccine about two weeks ago.  Fever started Christmas Eve. Very cranky with a fever coming and going. Went to doc 3 days after fever started. Flu test negative. Has his moments of feeling well, but still not terrific.

Me
Thought I had escaped the madness, but on Saturday started feeling like I had been run over.  It got to the point where I could barely move because I was shaking so bad and everything hurt.  Managed to get myself to an urgent care where I met quite possibly the world's creepiest doc. Positive for the flu type A.  Put on Tamiflu. Two days later not feeling super terrific, but at least I'm no longer convinced that I'm dying. Never got the vaccine.

Mattias
Our last man standing.  At least he was until yesterday.  Now he has fever and chills.  When he has Tylenol he goes back to his rather adorable self, but once it wears off... watch out! Received the flu mist in October.

So what does all this anecdotal evidence tell me?

  • Receiving vaccine well before flu season is best
  • Shot seems to trump mist, but...
  • ... the mist seems to lessen the symptoms
  • Getting yourself some Tamiflu (as long as you're in the proper time frame) will lessen the duration and possible severity
  • Doing nothing=being sick longer
 So there you have it, my very unscientific study on our family's battle with the flu. Hope you were able to avoid it (the flu, not my post) and stay well.

Friday, December 26, 2014

The birthday that never came

December 26.

I have been dreading this day.  The day I was supposed to meet my son. I wish it could have been avoided, but the month has carried me to this day, much like a riptide carries one out to sea.   I was helpless against it.

Since July 21, there have been a lot of "supposed to's", but obviously this one is the hardest. My actual due date was January 1, but Nicolas was scheduled to arrive via c-section today.

There is so much I want to say, but losing Nicolas has stemmed the flow of words.  Writing through such sorrow is not easy for me because the emotions are so overwhelming I don't know how to express them.  Not a day has gone by when I haven't thought of him.  I would even go so far as to say not an hour passes without him being on my mind.

The day he was born was so traumatizing (I could seriously teach a class on how not to treat a woman in my situation), that I missed out on really seeing my son and saying goodbye.  The time I had with him was short and is already fading in my mind.  I wanted to write him a letter to say all the things I never got to tell him.

--------------------

Dear Nicolas,

Today was to be your day.  The day I would finally hold you in my arms and our family would be complete. I cannot describe the ache in both my arms and my heart today.

There is so much I wonder about you... hair colour, eye colour, height and weight. But so much more than that.  Who would you be? What would your life become?  There is such sadness in possibilities never realized. I long to see how your piece would have fit into our family puzzle.

Though I only carried you for 17 short weeks, you are forever with me.  I carry your named engraved upon a bracelet on my wrist, your initial graces a pendant I wear, and your soul is forever stamped on mine.

I am sorry. So sorry that I never got the chance to meet you. To look into your tiny eyes and kiss your nose.  I'm sorry for all the snuggles I missed and hours in the middle of the night when it was just you and I. The stories never read and lullabies never sung.

Finally, I want you to know how loved you are.  So very loved.  Your brother and sister still talk about you.  In their world, the span of a week is a lifetime, so it seems you are eternally on their minds as well.  In fact, to them you are a part of the family, just as they are.  Your sister was telling someone just the other day that she has three brothers. 

Merry Christmas Nicolas. The only thing missing is you

And so, my sweet boy, Happy supposed-to-be Birthday.  I miss you.  I love you.  I always will.

Love,
Your Mama

May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of his hand

Saturday, December 20, 2014

Odds and bits and pieces and ends

Hello.  Remember me?  I used to blog here.  

It's not that I don't have much left to say, it's that I have so much to say and no time to say it properly.

But I wanted to bring attention (to the one or two of you who still might read this) to some cool (to me) stuff:

Awhile back, Fred and I were asked to take part in a You Can Do This Project video.  They wanted parents of kids who were diagnosed under the age of two to tell their story.  We did and you can see it here at Texting My Pancreas.  Feel free to comment on my awkwardness and dorkiness.  I'm okay with it.

Secondly, Sara, from Moments of Wonderful, is hosting a year-end Best of the 'Betes Blogs.  She put a lot of time and effort into it, so go here and check it out.  Vote.  You may notice that Yours Truly has been nominated in a couple of categories.  You don't have to vote for me, but if you haven't sent me a Christmas present yet, this would do nicely.  Just sayin'

So that's about it.  My first post in over a month.  Hopefully it will lead to more.

After all... my daughter still has type 1, and I still have a lot to say about it.

Monday, November 17, 2014

I'm a Disney Princess!

Okay, not really... but I am a guest blogger on the awesome Lilly Diabetes/Disney blog; T1 Everyday Magic.

Some time ago they asked me to write a post describing how you know you're a T1D parent. I mean, besides the obvious fact that your child or children have type 1.

And some time ago, I wrote and submitted it.  And then forgot about it.  Because that's what I do.  Forget.  Everything.

Whatever.  My kids are fed and I do remember to put on clothes when I go outside.  I call that a win.

So, click here.  Read it.  Let me know what you think or if you have anything else you would have included.


Friday, November 14, 2014

Today

***This is a re-post of a blog I wrote 2 years ago.  It's just as true today as it was then.



This is my daughter, Elise.  She is 7 years old. She loves to play soccer.  Paint and draw.  Read.  She loves to dance and sing.  Making her little brother laugh. The colour pink.  Roller-coasters and waterslides.  She's a girly-girl with a tough side... the absolute best of both worlds. 



She makes me laugh.  Loves everyone she's ever met. Blows me away with how smart she is.  She has the innate ability to drive me bananas, but at the same time; I am so very proud the be her Mom.  And today, she makes me thankful.

Without today, Elise would not be alive.  If it wasn't for today, I would have had to say goodbye to my first-born over 6 years ago.  If today had never happened, this would be one of the last pictures I have of my daughter...


During a month that is supposed to be filled with thanks, I am most thankful for today, November 14.

Because on this day, in 1891, a baby boy was born in a small farm house in Ontario, Canada.   He would grow up and make an astonishing discovery that would save my daughter's life 119 years later.  Not just the life of my daughter, but the lives of countless others too. 

Because in addition to everything I wrote about her above, Elise also has type 1 diabetes.  Her body NEEDS insulin to survive, but no longer produces it. 



It was nothing she did. Or didn't do.

Nothing she ate. Or didn't eat.

There is no cure.  No special diet.  No secret spice.  There isn't a bark that grows on a tree that can be brewed into a tea.

But there is insulin.

Today, I don't have to watch my daughter literally starve to death because of a faulty pancreas.  And that is why I am thankful for today, the birthday of Dr. Fredrick Banting; inventor of insulin. 

He saved my daughter's life.