Day 18: #HAWMC

Things I Wish I Could Take Back

Sorry that I have neglected my commitment to this blog challenge, but there has been some crazy stuff going on in my family right now and I have just been a little less than inspired to write.  Its a poor excuse, but I get a little self-absorbed when things rattle me.

 

 

As I consider what I would like to take back, I look back to the first few weeks after Alison's diagnosis in 2010 and remember the sessions with the nutritionist at our local hospital.  Once she asked why I was reluctant to include a mini Kitkat bar in Alison's lunch.  I must have looked at her like she had two heads!  She and my husband were of one mind, but I kept reminding the two of them that my daughter had Diabetes and that chocolate bars were no longer part of her life.

 

 

Looking back, I wish I could have given that "me" a hug and taken back that sense of panic she had.  I wish I could have reasoned with her that it would all be OK and that her daughter's life would include chocolate, cake and ice cream and everything everyone else eats, just in moderation and at the right times.

Day 13: #HAWMC

An Acrostic, When a Haiku Won't Do

 

Diabolical

Insidious

Absolute

Betrayal

Everlasting

Testing

Endocrinologist

Sleep deprivation

Day 12 of #HAWMC:

Back to School, The Lessons I've Learned

 

Today let's delve into one of the lessons that my job as Alison's pancreas has taught me. 

 

To bring my point home, I want to tell you about an incident that happened a few weeks after Alison's diagnosis in 2010.  I tried taking Alison out for lunch after one of her endo appointments as the nutritionist informed me that I would have to learn to gain a comfort level outside the house.

 

While in preparation for our brown-bagged lunch at the food court of the mall, just after I pricked my 2 and a half year olds finger, she began to wail.  A man leaned over and said to Alison "I'd cry too if my mommy hurt me like that".

 

I would love to tell you that this is where my witty response came in.  It didn't.  My response was silence.  I was so stunned, so full of emotion that I could not possibly find words - not even crass ones.

 

Fast forward to recently.  I was speaking to someone in a position of authority about Alison's condition and I used what, to some of you may be a very loaded and dirty word.  I told him that funding to the program I was discussing would hurt families like mine, families who had a member with a disability.

 

Someone later took me aside and told me that the word made her very uncomfortable.  She has family members with diabetes and that she does not consider them to be any less "able" than anyone else.

 

I took this opportunity to assure her that Disabled is not a word that I use lightly.  It is a technical term that is used by Ontario Human Rights Commission to define what constitutes a very broad scope of physical disorders, mental disorders, physical injuries.  It allows for monetary compensation and protects the rights of those aforementioned.  I by no means consider my child or, anyone else's, to be sub par or infirm.

 

These days I try not to get too hung up on what other people have to say.  I am doing, saying and writing what I fell I can to make a better, healthier world for my daughter and all other kids with T1D, I am sure that means that sometimes things will get lost in translation, but isn't it better to take action and apologize later than do nothing at all?

 

 

 

Day 11 of #HAWMC:

Favorite Social Network.

Today's Health Activist blogging challenge topic is to post about your favorite social network.  Now this is one of those can of worms, I know, but hear me out.

In July of 2010, when Alison was diagnosed with Type 1 Diabetes, I was lost.  I didn't know anyone who's children had diabetes.  I didn't know of anyone who had gone through what I was going through.  I wasn't about to put out an ad looking for like minded parents.  I was lost.

On Facebook I found a friend that I had been "friends" with for many years, but had not been close to who's son's story almost mirror's Alison's.  But I also made many, many other friends who are caregivers to children or spouses of people with diabetes.  They not only point me in the right direction to finding the right information from the appropriate sources, but have provided countless hours of support, and dare I say, love?

That's the power that Facebook, or any social app, has, if the people in the driver's seat, are steering in the right direction.

Day 10: #HAWMC:

Wordless Wednesday

One of my Fave Pic's of Myself

October 2008--Here I was, holding 9 month old Alison.  Long before her diagnosis with T1D at 2.5 years old.  Long before (in the same few months) my mother passed away.  Long before there were so many difficult things and choices that have plagued our little family in these last three years.  I look at this photo and remember being truly happy.

Day 9: #HAWMC

What Am I Messing Up

What Am I, Hopefully, Doing Right.

I decided that I would boost my confidence a bit and help my writing (cheat) by asking my five-year-old and favorite diabetic what she thinks I might be doing right as a caregiver.  I said, "Hey Ali, as a stand-in Pancreas, what do I do well, and where could I improve".  She looked like she was giving it a great amount of thought and then simply said "I dunno".

So, on my own, I must rate myself and tell you what I hope I am doing well.  Open up that big can of worms that keeps me up at night.  OK, that's a lie, the fear of hypoglycemia keeps or wakes me up at night, but these things are what I think about when I can't sleep and desperately want to not get out of bed.

I believe I am a good researcher and planner.  I decided to take a course (I mentioned the chronic illness course back in the post about resources in week one).  This was an eight week course to learn to deal with every aspect of living and caring for someone with a long term illness, including your own stress.  It was important to learn to take care of myself in order to take care of my family.

That's point two.  I neglected myself at first and have stopped that within the last year.  I have to get up at 3:45 am to get to the gym, but I go.  I am getting back to my healthy weight, feeling better and stronger inside and out, which allows me a sense of clarity I need to deal with the stress of this life.

I don't freak out about Diabetes.  It's here to stay.  I am stuck with it, it with me.  I have resigned myself to the fact that I will never, ever have a life where it will not be in my thoughts or fears.  I will always love and worry about my daughter, so it's best to just accept that we're a Diabetic family and go from there.

I am teaching my child that she is a champion, not a victim.  At five,  she understands her condition.  She doesn't feel self pity, in fact, it is quite the opposite - she raises money every year for the Telus Walk to End Diabetes (for JDRF).  She explains her "sleeping pancreas" to classmates and adults alike.

All in all, we are teaching and learning from each other and finding our way as a family.  Some days are really hard, I won't lie, but we'll pull through it together, because, in the end, that's what we do best.





Day 8: #HAWMC Animals

Diabetes, The Sneaky Weasel in our Lives

In thinking about what animal Diabetes would be, my thoughts kept jumping back to the weasel.  Oh! not the real life version.  I actually find members of the Mustelidae family; weasels, ferrets, badgers, to be quite endearing.  I mean the anthropomorphism version of the animal.  You know, the little buggers who occupied and sacked Toad Hall in The Wind in the Willows by Kenneth Graham or the mafia hitmen in Who Framed Roger Rabbit.

Diabetes is sneaky.  It comes in, unnoticed, like a thief in the night.  Everything seems fine and then, all of a sudden, it's not fine anymore and you don't even know what happened!  It is like something snuck in and out.  Like something something so small, so smart, crafty and silent must have crept in, done it's evil deed and you didn't even notice.

Beady little eyes, cute little face, but dont' get too close...this little baby has teeth, and lots of them!

PS!  This post was not meant to offend weasels, weasel lovers, Weasley's, lover's of Weasleys (or any Harry Potter fans), or anyone.

Day 7 of #HAWMC 30 Day Challenge

What's the Most Ridiculous Thing You've Heard About Diabetes?

As a parent of a child with a chronic illness, I have found that most people are polite.  Usually their questions are kind and if they seem silly or crass, it is because they truly don't know.  I don't mind educating them.  Now, I realize that I am lucky.  I work in the health care, not for profit industry, so a lot of my colleagues have medical backgrounds of some sort. Maybe that colours the type of questions they ask?  Maybe the industry we're in has taught us all to use a degree of tact that people in the general public don't need?  Who knows.

That being said, I have had someone who believes in very New Aged techniques when it comes to illness.  He's not a bad guy, quite thoughtful actually.  He has beliefs that he thinks would helps ease some of the suffering and illness that Alison lives with.  He once asked me to ponder what from Alison's emotional past might have influenced her developing diabetes.

This is something that really caught me off guard for a couple of reasons.  One, while I think that our attitudes can help us improve our outcomes when we're ill, I don't believe that they bring on illness.  But, two, even if it could, what would a two year old have in her past to have brought on such a horrible disease?

Here's what a couple of websites had to say about the metaphysical link between Type 1 Diabetes and the mental causes:

"failure to deal with spiritual,emotional,mental or physical issues is likely to result in the manifestation of illness or disease in the body.


Longing for what might have been. No sweetness left in life" - www.vitalaffirmations

"Juvenile diabetes may manifest in children who feel insufficiently acknowledged. They are exhibiting an inner emptiness that seeks some form of compensation.

Mental block: Diabetes is a signal that you need to learn to let go and let things happen at their own pace. Stop trying to control the course of events. You need to realize that it is not your purpose to make everyone else happy. Others may not even want what you want for them, or they might not desire it intensely. Acknowledge all the goodness that flows freely in your life, become mindful of the moment and taste each moment in all its delicious glory. Don’t let yourself be distracted by what you may want tomorrow. Accept that, even though you may have been unable to fulfill a very important desire in the past, you still can enjoy smaller ones in the moment.

If you are a young child or adolescent with juvenile diabetes, stop thinking that you are the forgotten child. Find yourself and your place in the family.

Spiritual block and conclusion: To uncover the spiritual block that keeps you from responding to the needs of your BEING, refer to the Key Questions" - www.livepositive.com

Day 6 of the #HAWMC 30 Day Challenge:

Day 6 of the #HAWMC 30 Day Challenge: 

Write a Letter to your Disease

Okay, it's Saturday and I am really feeling the itch to enjoy the sun...it has been the the winter that won't end in these parts.  In April of 2012 Jen Hamilton Loving at the Blue Heel Society wrote a fantastic letter to Diabetes.  I wrote my own letter to Diabetes.  Turns out that D isn't like a politician, it isn't swayed by letters from it's constituents   The BHS posted my letter on their site.  Here's what I had to say at the time:

Jen encouraged the rest of us to write and share our own letters to Diabetes.  I want Jen to know that I tried; God knows I did.  My first attempt was an f-bomb laced diatribe.  My second attempt was a letter of a defiant and threatening nature.  The third time around I just wrote "you can't have Alison" and cried until I couldn't cry anymore.

While my attempt at a letter that I could share with all of you, one that would be therapeutic and helpful, might seem like a bust, I re-learned a lesson that keeps coming up.  My friend Tammy's mother Debbie has told me that the universe will send you the same assignment over and over again until you learn it by heart and this one is taking me a while.  IT WILL TAKE A LONG TIME FOR THE PAIN OF DIAGNOSIS TO EASE, if it ever will.

I keep thinking that my life has moved on.  That I am okay with poking my child with lancets and testing her blood several times a day.  That putting tubes into her body and giving her needles is just the way it is.  That it is what it is.  That the late nights are fine.  That watching my child go through her worst moments while feeling helpless is okay.  Then I will have a day when I get that feeling like I did on the day that we were diagnosed almost two years ago.

The best way I can describe it is this.  When they told us that Alison was in Diabetic ketoacidosis , the room felt like the air had been sucked out of it.  Everyone feels it differently.  But that's what it was like for me.  When it hits me, every once in a while, it feels like that again.

The one thing I would tell Diabetes is this though, someone like Alison, who is currently running around the living room, wearing a cape calling herself Super Ali, is hard to put down and hard to be down around your very own super hero!

Day 5 of #HAWCMC: Aspiration:

Just what are you Hopin’ to Accomplish Missy?

So today’s challenge is, well, simply put, challenging for me.  We were tasked with writing, for your reading pleasure, what, as an advocate for our specific cause, we would hope to accomplish – thinking big picture.  Pie in the sky big.  Capital B, I, G, big.  Now the part of me that Alison calls a “poopy head” would say “Great!  Easy!  I am going to cure Diabetes in 5 years – 10 at worst” realizes that this is too short a blog post so here goes.  Something hard, but realistic:

Here in the Province of Ontario Canada, where we live, quite happily, there is no real protection for diabetic students who are too young to manage their own care.  I am talking about the children like mine who are in the Junior kindergarten to early school years and not the kids who can test their blood sugar, test,  treat and bolus (if pumping) on their own except in the case of great emergency.  Alison is currently five.  She started school at four and while she can test her blood glucose levels and type in her bolus and press ok, she’s still too young to calculate the actual amount of insulin her body needs or how to treat a case of hypoglycemia.

Until 2010, Kids in Ontario were not able to test their BGLs in classrooms.  They had to leave the class and go to a designated area to test.  Sometimes, due to low blood glucose levels, they may not have made it to where they were going before losing consciousness or before falling very ill.  This is where MPP Dave Levac comes in.  He was instrumental in bringing into law Bill 5, Bill of Rights for Pupils with Diabetes, 2010 which ensures that children in Ontario schools can not only test themselves, but can also treat both low and high blood sugar episodes in their classrooms.

The work of Mr. Levac and his staff is amazing, but more needs to be done.  I personally would like to see legislation that makes it so that there are rules in place that standardize how children find treatment within our schools.  Currently, the schools themselves can deny to test and treat the child.  We’re very lucky in that our school principle has bent over backwards to ensure that Alison gets tested and treated before meals and snacks.  If this was something she and the teachers didn’t want to do, either my husband or I would have to visit the school at every snack and meal to ensure that Alison was getting her treatments.  Many parents across Canada do this on a daily basis.  Many parents cannot work 9-5 jobs because of this.

Another issue that is faced by children with Type 1 Diabetes (and children with Allergies as well) is that the bus companies refuse, and it is within their legal rights, to provide life saving treatment to a child like Alison should she start slipping into a coma due to hypoglycemia.  They will call 911 and pull the bus over, but even though we can walk the driver through the delivery of the meds she has readily on her person, as can a 911 operator, the company does not want to take responsibility for any liability charges that could ensue.

Both of these issues are of great concern to me.  My child has had many, many challenges already in life, more than I have ever faced and she is at the start of her journey.  If I could change something to make her school years, which will be hard all on their own, just a bit safer and easier, that’s what I would do.

Day 4 of WEGO  30 day, 30 post challenge

Sharing Resources.

So my goal today is to create a “care page” for someone who is newly diagnosed with Type 1 Diabetes.  A one stop shop to get you, the out-of-the-frying-pan, into-the-fire T1D, or parent of one, who’s head is still reeling and who’s room won’t stop spinning, onto solid ground, or at least point you towards it.

There’s no one size fits all, but here’s what worked for me.  Just keep in mind that it took me about eight months of sulking to get to the point of looking for help (now I was in the middle of a rough pregnancy and dealing with my mother’s terminal illness and those may have played a part).  I let my wonderful husband, Terry, take care of all things Diabetes until I was ready to face up to Alison’s diabetes…it takes time, so don’t expect to be ready to go on day one.

First things first, I took a course on living with a chronic illness.  I took one the one in Ottawa from Champlain Health, but I am sure that there are other health care organizations in your area that would offer similar courses.

There are great websites listed on the sidebar of my blog that you can visit for support.  Some, not to name them all are: JDRF Canada or JDRF USA, Children with Diabetes,.  These will give you facts on advocacy, tips and where to get help. 

Also, Google and youtube things.  I found that I would, and sometimes still do, google set changes or injections just as a refresher.  There are so many parents, nurses and companies that create videos on how to check blood sugar, how to inject a needle, how to do a site change…if you are not sure, look it up!!!

For me, a little levity, hope and some downright sarcasm is the way I approach most adverse situations.  Here are some inspiring, sometimes “tell it like it is” folks that I just couldn’t make it through life without.  Most of these people I am proud to call my friends, but I used to just watch them anonymously before:

 Mike Lawson  Socially Diabetic  Mike is the king of sticky note inspirations but don’t let the depth of his testimonials fool you,  there are days (usually the ones where I am really frustrated with the rest of the world) where he seems to echo my thoughts and give the non DOC (Diabetic Online Community) what-for.

The Blue Heel Society run by Diane Pridmore, Tony Cervati, Jenn Hamilton Loving and Thomas Moore is an awesome site!  It's all about advocacy in blue shoes baby! In fact, I am wearing my blue shoes as I type this post. I cannot say enough good this about these people.  Jenn and Diane have been a candle in the window for me on dark and stormy nights.

Scott Benner, published author of Life is Short, Laundry is Eternal, Confessions of a Stay-at-Home Dad and author of the blog called Arden's Day.  Scott’s blog is a wonderful, honest account of a father’s perspective on being a caregiver for a child with T1D.  I visit there often and have found his writing to be amusing, touching and profound.  Scott is always open to questions.

And you can visit me if you wish.  I don’t have answers, but you can always bare your soul, and maybe I can point you to the right person, because I have probably been feeling what you’re feeling, in this share experience, this family called the DOC, we’re all in it together and that is truly the best resource we have.

Wordless Wednesday -

2nd Anniv With T1D

Five Things You Ought To  Know About Type 1 Diabetes

Okay, so day two’s challenge is to school you. It’s my duty to teach you five things about Type 1 Diabetes. After two and a half years of life as a D-family, can I narrow it down to five? Can I pick the five most important? Can I pick out five things you might not learn somewhere else? Can I do all this while
keeping you entertained? Delighted? On the edge of you seat? Probably not…but I will try.

1) Diabetes is not the end of the world. It seems like it on the day of diagnosis. It seems like it weeks later, months down the road. It kicks you in the nether regions even 2.5 years later, but it gets you down a little less often. At the end of the long, long day, everyone gets by. It sucks,
but you get through it. I promise.


2) There is, despite what people think, nothing my child cannot eat. Well, except for poison and cookies made with poison. I however cannot manage eggs or milk and really don’t like mushrooms.


3) Insulin doesn't cure diabetes. It is medicine. It helps her get by. It provides a measure of “control” and I use that word loosely. TYPE 1 DIABETES IS INCURABLE.

4) Type 1 Diabetics poke their fingers at least 2000 times a year (if their blood sugar is good). A T1D who is pumping will have approximately 121 pump site changes each year.

5) My biggest fear in the world is the day when I give up control. Someday, my child will be a teenager, and she’ll want to drink beer/liquor with her friends. That will be tricky to calculate the insulin for. Or she’ll rebel and decide she doesn't want to be as diligent with her calculations/ratios/insulin/care. These things scare me to death. Rebellion in my oldest daughter could be so deadly. The day that I no longer choose and calculate what goes into her mouth almost makes me want to cry.

I have to teach this little five-year-old how to take care of her diabetes and pray that all of you who don’t live with it will take up arms with me and find a cure for her, and all the others like
her.

WEGO CHALLENGE DAY 1

Ah!  Easter weekend.  I find it great that the The Health Activist Writer's Month Challenge 2013 started around the Easter long weekend (this is my first attempt at it, so bear with folks) because I always find the time leading up to the Bunny's arrival both a great time to educate and a little daunting.

It is a wonderful time for me, as a parent of a type 1 diabetic child, and, by default, an advocate for the cause, to teach those who have had no contact with the world that "we the D" live in, but it can sometimes be frustrating.  I know that this is because of  my own selfishness and impatience at answering the same questions.  I cannot blame the person who has no diabetes experience for not knowing how someone with this disease lives.

So, I put on my smile and try not to look too impatient when I tell people, again that Alison does get a visit from the Easter Bunny, and he does bring chocolate eggs, she just doesn't eat them all in one sitting!  I try to add levity and tell them that the only things that Alison can't eat are poison and cookies...made with poison.  I tell them that she east how all healthy children should eat, healthfully and that the insulin takes care of the rest.

BTW, the best way you can help is to sponsor Alison in the Telus Walk to Cure Diabetes...here comes the guilt trip, she has raised no money yet..sniff, sniff....just go to http://jdrfca.donordrive.com and type in Alison Morley.  It's that easy!!!!