Special Sibs of D-Kids Day!

This post was going to be about my amazing seven year old daughter, Jazmine and how supportive she is of Jenna, her little sister with type 1 diabetes.  I was going to recount how she spotted the signs of hypoglycemia in Jenna and took it upon herself to check her blood sugar - not once but twice!  I was going to say how caring and sympathetic she is when Jenna is not feeling well.

But then during an exchange with a friend on Twitter I was reminded of an incredibly important aspect of being the sibling of a child with diabetes: they are just as much in need of support and understanding as their brothers and sisters with diabetes, particularly in the weeks and months following diagnosis.

Jazmine was only four when Jenna was diagnosed at the age of two.  That’s the same age as Jenna is now.  When Jenna came home after a four day stay in hospital Jazmine witnessed her sister having to endure finger sticks 6 to 8 times a day and insulin injections 3 to 4 times a day.   Not surprisingly, Jenna was fearful of each needle stick and would cry.  While I concentrated on helping Jenna endure these relentless physical trials, Jazmine was going through an emotional trial of her own.  It was frightening for her too.

Numerous times Jazmine would run into her room crying, unable to cope with her sister’s distress. I recall feeling so torn at times.  Jazmine would often have to go without my hugs and words of comfort for longer than I would have liked while I assisted Jenna.

On one occasion, when I was finally able to attend to Jazmine’s needs I explained to her that Jenna needed us to be brave to help her find her bravery.  I told Jazmine that she could help Jenna cope by offering her encouragement.  Jazmine needed to be involved.  She needed to be a part of it all in some capacity.  And really, Jenna needed her to be a part of it too.  I told Jazmine that she could be so helpful if she could find a way to cheer Jenna on.

And that’s just what my then four year old little girl did.  From that day on, Jazmine conquered her own fears and found her bravery to help her little sister find hers.  Jazmine found it in herself to stay by Jenna’s side when Jenna became fearful.  She offered comfort and reassurance and was always ready with praise when Jenna endured a frightening procedure.  Such a selfless act by a child so young is truly incredible.

My point is that it is too easy to overlook the needs of our non-diabetic children.  We get immersed in the daily management of diabetes, especially in the weeks after diagnosis.  We can forget that they too are scared and need support, education, involvement, encouragement, comfort...

It’s been said many times before but it’s worth repeating here: Diabetes affects the whole family, not just the pancreatically challenged.  Often the siblings are young children who need to be shown how they fit in to this whole diabetes business.  If we can include them, everyone benefits.

So in honour of Jazmine, we are going to do something we rarely do but always enjoy when we do it; we are going to the movies.  We are going to buy massive quantities of overpriced popcorn and watch the 3-D version of that new Disney animated movie - Tangled.

When I told Jazmine our plans for the day her eyes lit up and her jaw dropped!  She couldn’t wait to go tell her sister - her best friend.   I can’t think of a better way to celebrate and honour Jazmine than doing something fun together, as a family.

After all, that’s what it’s all about - Family.  And nothing is more important than that.

Celebrating Our Special Sibs of D-Kids

Once again my beautiful seven year old daughter recognized Jenna’s symptoms of a low blood sugar, took the initiative to perform the check, then upon confirming her suspicion quickly reported her findings to me.

Those who follow me here or on Facebook will recall a time earlier this year when this very scenario played out once before.  I was so proud that I quickly shared the story online.  Jazmine was proud too, and rightfully so.  She was a hero that day and repeated that heroic act again yesterday.

And this isn’t the only heroic act worth celebrating, although it may be the most obvious one.  There are countless other times that I’ve become aware of Jazmine’s quiet patience and understanding when Jenna has, out of necessity, been in the spotlight for a prolonged period of time, perhaps due to persistent blood sugar problems.  Or maybe she’s been taking the brunt of Jenna’s hyperglycemia-induced foul mood and has had to show maturity and understanding in dealing with that.  In fact, Jazmine is a hero everyday just by being a loving, protective, big sister to Jenna.

So I got to thinking - shouldn’t there be a day when we, as a diabetes community collective, recognize and celebrate their awesomeness in its many various forms?  We all know that, out of necessity, our children with diabetes often require more attention to manage this disease.  But our non-diabetic kids are often expected to go above and beyond and because they are such great kids, that’s just what they do.

So another awesome D-Mom, Alexis from Justice’s Misbehaving Pancreas, and I got talking and we both agreed that our non-D kids deserve a day of recognition.  It could be celebrated in as many ways as there are D-families to celebrate it.  Maybe you make a favourite meal or dessert.  Perhaps it can be one big family fun day!

Or it might be as simple as telling your non-D kid, either with the spoken or written word, just how incredible you think he or she is.  Because, really, can you ever say stuff like that too much?  I don’t think so either.

So the date we decided on is November 28th.  However you decide to mark the occasion, we’d like to hear about it.  Perhaps you can share your ideas here or on Alexis’ blog in the comment section of our posts.  Or if you have a blog, grab the button and blog about your Special Sib of a D-Kid!

Let’s show our non-D kiddos that we know how awesome they are and we love them for it!

A World Diabetes Day Toast

It’s still dark out.

The furnace is droning on, working to take off the night’s chill.  Oatmeal bubbles and snaps as it simmers on the stove.  My oldest daughter is lounging in her bathrobe on a chair in the living room watching cartoons.  Jenna is still in bed, sleeping soundly.

I’m here tapping away on the keys of my laptop, being tantalized by the smell of coffee brewing, thinking about the bolus I gave Jenna almost two hours ago to correct the high blood sugar she was knee-deep in at 5am.  I wonder if she is going to wake up for breakfast before her blood sugar drops too low.  But I’m confident her blood sugar will indeed come down, thanks to that precious liquid - insulin.

And on this World Diabetes Day, I’m filled with heart-warming, tear-summoning gratitude for it’s discovery.  Without the tireless efforts of Dr.’s Banting and Best my little girl wouldn’t be here today along with countless other children -  children who were given the gift of life and allowed to grow up instead of becoming another tragic, heart-breaking statistic.

So, on this day I would like to raise a glass (or at this hour, a mug) to the good doctors, Banting and Best, and to all the scientists working to find a cure for the disease that was a death sentence before their discovery of insulin.

Happy World Diabetes Day.  May we one day soon be celebrating a cure.

Six Things I Want To Get Off My Chest

Today is D-Blog Day so I’m going to share my 6 things I want people to know about diabetes.

1. Neither I nor my daughter did anything to cause her to develop type 1 diabetes.  It didn’t occur because she ate too much candy or was overweight.  It wasn’t  because I over-indulged during my pregnancy.  Type 1 diabetes is an autoimmune disorder caused by the immune system mistaking a person’s insulin producing beta cells in the pancreas for a foreign invader.  The immune system destroys the beta cells leaving a person without the ability to produce insulin.
2. Without working beta cells a person either needs to inject insulin several times a day or infuse insulin via an insulin pump.  Without insulin a person will die a slow and miserable death.  Before Banting and Best made their miraculous discovery that is precisely what happened to people.  Their misery is documented in pictures.  I’ve seen the pictures.  It is most horrifying and deeply disturbing.
3. People with diabetes constantly need to monitor their blood sugar and count carbs.  They must always be conscious of their activity and hormone levels and their overall physical condition to dose accordingly with insulin.
4. Humans are poor substitutes for working beta cells and are constantly at risk of either overdosing or under dosing on insulin.  The immediate consequences can range from feeling unwell to seizures, unconsciousness, coma or death.  The long term consequences are kidney, heart and peripheral vascular disease, neuropathy and loss of vision to name just a few.
5. My daughter Jenna is a remarkable little girl with a zest for life and a sense of humour beyond her years.  She deserves to live a long, full life filled with love and understanding.  I want Jenna to live in a world full of compassionate, educated people who won’t judge her out of ignorance.  In fact, I want that for both my girls regarding life in general.  Understanding and compassion come from being educated.  If you don’t understand something about diabetes or have questions I will gladly educate you.  Just ask.
6. I too am guilty of being uninformed in the past regarding diabetes, even though I have a medical background.  I cringe every time I recall conducting physical assessments on diabetic patients and asking them if they were “well controlled”.  I’m surprised no one told me to go fly a kite, quite honestly.  Control of diabetes is fleeting and can change from moment to moment.  It is a constant battle with far too many variables to be a walk in the park.  It never ends.  If there is one thing I would tell health care professionals it’s to not judge a diabetic.  Don’t think that because you are a medical doctor or a nurse that you know all there is to know about this disease.  Odds are you don’t. This disease is harder than it looks to manage.  And even when you seem to be doing everything right it can still mess with you on so many levels.  And for goodness sake, don’t ask a type 1 diabetic if they are “well controlled”.  It’s just about the most ridiculous thing you could ask.  

A Special Halloween Tradition

I admit, I was very anxious the first Halloween with D.  Even though Jenna was rocking her pump for almost two months prior, it was still pretty tense for me.

What if she goes animal on me and starts ripping into the candy like a sugar-crazed...well...KID! 

The thing is, it didn’t happen like that at all.  Jenna was just like most kids and thoroughly enjoyed the actual act of trick-or-treating.  She wasn’t focused on the candy in the least.  At least, not until we wrapped up the trick-or-treating part of the program.  And after a quick, post-haunting check revealed a low blood sugar, she enjoyed several pieces of candy as we made our way back home.  Besides, I find candy in small amounts is pretty easy to deal with.  It’s the burgers, pizza, pasta and french fries that give us the most grief with regards to glycemic control.

But candy is still candy and although I firmly believe kids need to be allowed to pig out on junk now and then, I like to limit the amount consumed.  Halloween and Easter candy is usually around for months after the fact because it is metered out as after-meal treats.  So reducing the overall amount consumed is a good thing.

For several years now, even before the big D came a knockin’, I have employed a little help from Charlie Brown and used the Great Pumpkin concept to help minimize the amount of junk my kids consume.  Here’s how it works in our house:

Once home from trick-or-treating we pour out the candy bags and my girls have fun sorting and examining the night’s pull.  This is when my husband and I take the opportunity to check all the treats for safety purposes and to perform a little quality control, of course!

After the scoping...uh, I mean....sorting of the treats, we ask our girls to make some decisions as to which goodies they want to swap for non-candy treats from the Great Pumpkin.  The more candy they are willing to part with, the greater the trade!  Often it ends up being close to half the night’s haul.  They then place these treats into a special bowl for placement by the front door of our house.  The Great Pumpkin visits sometime in the night and makes the swap.  The next morning my girls race to find a few fun items for each of them such as a new video, a toy and a book in place of the candy!  Another great item to include, as a friend of mine suggested, is a new toothbrush!  I think that’s an awesome idea and I’m going to...uh, I mean... the Great Pumpkin is going to include one as part of the trade for each of my girls this year.

The Great Pumpkin usually leaves a letter of thanks for the great trade and bids them farewell until next year when he hopes they can do business again.  My girls enjoy this tradition very much and are only too happy to divvy up their goodies.

The only question I haven’t been able to answer is what the Great Pumpkin does with all that candy.

Before Another Child Is Lost

The unthinkable has happened.  Again.

The unfathomable has happened and we are all left reeling from the reality of what we face.  Every.  Single.  Day.

The unbelievable has happened and a family I’ve never met but have so much in common with occupies my thoughts and my heart.

The unspeakable has happened and I, along with countless others in the diabetes community weep tears of grief, pain and anger.

The unimaginable has happened and mothers and fathers of type 1 diabetic children are left to hug our children tightly as we are snapped back into the sombre and sobering realization that there, but for the grace of God, go any one of us.

We all say, I can’t imagine what they, the parents, are going through.  But the truth is, it is only too easy to imagine the heart-wrenching, oppressive pain and grief they must be feeling.  We were faced with the reality of what could happen when we learned about the intricacies of managing our children’s type 1 diabetes.  Insulin is a double-edged sword.  It gives life but it can just as easily take it away.  And we don’t have the luxury of being able to say,  it could never happen to us.  We know only too well how life has a way of dealing out the unexpected.  We have been burned before.

You see, there was a time when most parents of children with type 1 diabetes didn’t believe a serious, life-threatening illness could strike our children without warning.  Not our child.

And then one day it happened.

We are too wise to hide our heads under that cover of naiveté.

And so, when we hear of a family who is suffering the worst loss imaginable, we all know it could happen to any one of us.  It is what bonds us — perfect strangers — in a very real and profound way.
We understand one another and what we go through every day.  The reality of what we all face.

What we need to do is find a way of sharing this reality.  We need to figure out how to impress upon the public the urgent need for a cure.  Because our children don’t look sick.  They look just like every other child.  Most days people wouldn’t even know that our children are usually feeling the exhausting effects of erratic blood sugars.  People would never guess that they are constantly at risk of overdosing on insulin.  People don’t think about the long term complications our children face because of type 1 diabetes such as heart disease, hypertension, peripheral vascular disease, vision loss, limb amputation, neuropathy and the list goes on.

And people aren’t aware of just what is entailed in managing type 1 diabetes and the constant monitoring required,  from minute to minute, hour to hour, day and night, to keep our precious children safe.  To keep our babies alive.

Blog.  Talk.  Write.  Answer questions.  Encourage discussions.  Be out there.  Test in public.  Don’t hide the minutia of diabetes management.  Encourage your children to answer questions from their friends.   Suggest speech topics that involve diabetes.

Raise money.  Raise awareness.

Walk.

Don’t be quiet about this disease...

...be loud!

We need a cure.

Before another child is lost.

How Does It Feel?

I can socialize in type 1 circles and, for the most part, fit right in.  I know the jargon; I understand the disease; I have first hand knowledge of what it takes to manage it day and night.

But the one thing I don’t know is how it feels to be off-the-charts high or crazy-ass low.  I can imagine all I want but at the end of the day, I have a working pancreas that keeps my blood sugars in pretty tight check.  So, I can’t relate to the crippling, confusing and emotionally devastating effects of a 2.1 blood sugar or the exhausting physical stress of a blood sugar of 24 with ketones.

I have some feeble points of reference to draw from.  Like most people, I have gone too long between meals or overindulged and suffered the repercussions.  Like the time I binged on a bag of Jelly Belly jelly beans I had rationalized buying for treating Jenna’s lows (in spite of the fact that at any given time I have a fully stocked arsenal of carb tabs available for just such instances.)  I ate so many jelly beans that I felt decidedly ill afterward and thought it might be interesting to check my blood sugar.  I believe I clocked in at 8 point something.  Definitely elevated but a far cry from the teens that Jenna experiences several time a week.  And by no means could it even come close to the feeling of a twenty-something reading, which isn’t nearly uncommon enough.

If I knew how Jenna felt in states of hyper and hypoglycemia I might be better armed to identify the signs sooner in some instances.  It wouldn’t be that much of an issue if my diabetic child was older by, say 5 years or more.  Then she might have a little more insight into her physical status.  She would be more skilled at verbalizing how she is feeling.  Her ability to identify physical symptoms as a manifestation of crappy blood sugar control would be better honed.  But as it stands, I am at the mercy of non-verbal, behavioural signs to tip me off to an out-of-range blood sugar.

I wish I could say that I’ve never misread the signs as being merely typical four year old antics—that I’m always cognizant of the possibility that her impish behaviour could be a direct result of a plummeting or sky-rocketing blood sugar and that, at the onset of less than angelic behaviour, I nip off to retrieve the meter and perform a check.

I really wish I could say that.

I can’t.

Usually I can connect the dots fairly quickly and surmise that Jenna’s reluctance to get dressed and brush her teeth while she sprawls, uncooperatively on the floor could be a low.

More often than not I can identify an angry, out-of-the-blue outburst ending in a box of crayons being thrown at an impressive velocity across the room to be a high blood sugar careening out of control.

But there are days when I get caught up in the energy and frustration, when the symptoms aren’t quite so glaring, and I miss it, doling out a consequence, such as time on the thinking chair, without a second thought.  Only after my own frustration has abated, allowing the significance of Jenna’s pale complexion  to sink in, do I make the connection and race for her meter.  And I don’t need to tell you how I feel when the number staring back at me confirms that Jenna’s behaviour had far more to do with physical discomfort secondary to glycemic chaos than typical preschooler antics.

I try to make it a policy to check Jenna whenever I’m in doubt.  Because those rare occasions when I’ve missed it are still too many for my liking.

But I’m learning not to blame myself for these lapses in spot-on D management.  It’s not like diabetes has a hidden code that, once cracked, will forever-more make D a cake walk.  This is one puzzle that refuses to be pieced together.  Just when you think you’ve figured it out, the rules change.

As Leighann of D-Mom Blog once told me in a comment to another blog post I wrote, think of all the times we get it right.  And truthfully, the fact that all those times we get it right far outweigh the times we don’t is pretty remarkable, given the unpredictable nature of diabetes.

This disease is such an SOB.  I have beaten it to a messy pulp a million times in my mind, mostly for the suffering it has caused my child.  But also for the heartache my husband and I have endured and will continue endure until our last breath.  As incredible and joyful as parenthood is, it can be just as difficult at times.  Throw type 1 diabetes in the mix and the stress and worry are compounded.

Kerri posed the question on her blog post yesterday, If you could change one thing about having diabetes, what would it be? 


Easy.  Without question.  I would change places with my daughter and take on this disease myself.