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.