How Crochet Taught Me to Value my T1D Daughter's Doctors Even More

In addition to being a parent to a T1D daughter, I'm an avid crocheter.  One of the many recent innovations to come about from the storm of social media crafting groups is something called a Temperature Blanket - the basic concept is you assign colors to a range of temperatures, then you crochet, or knit, or weave 1 row for the average temperature each day for a period of a year.  This has been used to document things like the year of a marriage, or someone's birth year, or just the current year as it occurs.

Recently while working on my own temperature blanket, I had a brain-storm....this system can be applied to almost anything that can have a number assigned to it.  Well, what number do all Type 1 Diabetics have constantly on our  minds?  Blood Glucose, of course!

So I came up with the brilliant idea of doing a Blood Glucose Blanket - in my mind's eye, I'd assign shades of green for the "ideal" range (say, 70 to 150), reds for the "lows" (X to 69), and purples for the "highs."  I was so excited about my idea, and I thought maybe I could work on it and give it to my daughter next year for her birthday.  I was PSYCHED!

Because I wasn't sure how to set it all up, I decided to post about it in one of the many online groups I'm in that focuses are crafting - this particular groups is just for "snarky" or "offensive" crafters, because I am by nature a pretty earthy sort of person, and that's where I felt most at home.

I was rather startled by the reaction.

I got a LOT of "wow what a great idea!" reactions, and, "what a loving and original way of showing how much you care!".  Those were gratifying, to be sure!  However, I also got a few responses from adult Type 1 Diabetics which were overwhelmingly negative - here are a couple of examples:

     " Honestly, I would hate this. I’m also Type 1. I just had a conversation a few weeks ago with a bunch of my Diabetes Camp friends from almost 20 years ago about how much guilt and shame we already feel about not taking care of ourselves better"

     "I know for sure I'd not want to see a year of my failures and struggles to stay even mapped out on such a visual scale.   It's hard enough getting my book reviewed with the nurses every few months. "

I realized something that I hadn't really understood before - my daughter's doctors had told me more than once that scaring her into taking better care of herself is proven not to work.  I was so frustrated with her tendency to pretend she wasn't diabetic, and ignore her BG, and fail to bolus for meals.....I was terrified for her, and wanted to try to get her to understand what a dangerous game she was playing.  And here, I suddenly had a real world demonstration of what those doctors were trying to tell me.  These adult Type 1 Diabetics in my crafting group were mostly young - i.e., between the ages of 25 and 45.  They were products of the medical system in place between the 80s through the early 2000's, during a time period when it was common practice to try to shame patients into being healthy.  I remember those days, and I had noticed more than once that there had been a shift in attitude in recent years. I particularly noticed it at the dentist, where I no longer felt like I had to be ashamed when I knew I hadn't taken adequate care of my teeth, and I had to face my dentist and hygienist with that knowledge.  I know I avoided dental appointments for years because of it.  But....they no longer reacted that way.  They stayed positive, suggested ways I could improve, warned me about possible damage, but I never once felt ashamed.  

THIS is what my daughter's doctors were trying to tell me - if I stress the dangers, and the fears, and try to shame her into doing things right, the long term results are a shame in the illness itself.  I have always, from the very beginning, treated my daughter's diabetes as "The New Normal".  I never, ever, wanted her to feel damaged, or broken, or somehow LESS than her peers.  I wanted her to be realistic about what it meant, but I also wanted her to know that it didn't mean she was any less in any way.  

And the idea for a blanket is what demonstrated to me what her doctors had tried to communicate so many times.  There is an entire generation of Type 1 Diabetics out there who overwhelmingly feel that they are inherently not good enough because they don't always perfectly maintain their illness.  That is heart-breaking.

So, with all of that in mind, I decided 2 things:  1. I would talk to my daughter first, obviously.  I would explain the idea to her, and see what she thought of it.  I would make sure to ask her how she would feel about having a visual, hands-on representation of her daily struggle right in front her her.  I would then let her decide if she liked the idea.  and 2. I would not assign colors based on value judgments.  Instead, we would pick colors she liked, in a configuration that would allow us to do ranges from low to high.  That way, looking at the blanket it wouldn't be immediately obvious which were "good" days and which were "bad."

And I did so.  I talked to my daughter, and before I had even finished explaining my idea, her eyes LIT UP!  She was so excited by the concept!  I asked her if it would bother her knowing it would show good AND bad days.  she said no!  I even had her read some of the comments from my post, and she seemed honestly baffled by them - why would you feel shame?   She didn't do anything to deserve this disease; yes, she fails to take the best care of herself sometimes, but it's still her doing the best she can with an illness she can't get rid of.  

So.....what is my point?  I guess....thank you to the medical professionals who figured this out.  Thank you to all of the doctors and psychologists who did all of the studies and surveys which taught them that there was a problem with the way medicine was practiced, and actually caused a change in the way patients are treated.  It may seem silly that this all came from something as unimportant as a crochet project....but I really mean it.  Thank you.  Because of all you do, my daughter not only can look forward to a long and healthy life, but she won't do so hating herself the whole time.  There is no price I can put on that.

I always knew crafting was cathartic....

Blood Glucose Blanket - A Crochet Visual of Type 1 Diabetes

As I mentioned in my previous blog post, How Crochet Taught Me To Value My T1D Daughter's  Doctors Even More, in the process of coming up with the idea for this blanket, I learned a lot about how perception affects mental health.  However, this post isn't about that, but  I hope those who have found themselves here reading about a crochet project will also go read about what I learned while brainstorming this project.

With the proliferation of Temperature Blankets, Temperature Scarves, and even Temperature Amigurumi, I recently came up with the idea of using the same concept to document my daughter's blood sugars.

But, I am getting ahead of myself.

What is a Temperature Blanket?  To paraphrase what others have said, the basic concept is that you assign colors to ranges of temperatures - for example, cooler colors for colder temps, warmer colors for the warmer temps.  Then during the course of a set period of time, usually a year, you record the temperature of your choice each day; some people choose to use the daily average...other use the high, the low, or just pick a time of day and use that temp.  Then, you translate that temp into a color, and crochet (or knit) one row in that color.

The result is a lovely, sometimes garish, project which is unique - no one else will ever be able to duplicate it.  Many people used the temps during a year significant to themselves or someone in their lives - the year of a parent's birth, or a child's, or a marriage.  Some people added a color for snow, or rain, or sun....the options are endless.

One day I was working on my own temperature blanket - I had decided to do one this year, since the affects of climate change were resulting in very unsettled weather where I live, and temperatures were all OVER the place this winter - when  i was thinking about how this concept could be applied to almost anything that could be reduced to numbers - your height as you grown, your body weight, even shoe size!  Imagine recording your child's height once a month for 18 years!  then crocheting that into a blanket..and gift it on his/her 18th birthday!!

Then it struck me.....Blood Sugar!  My 12 year old daughter is a Type 1 Diabetic, and she lives her entire life governed by that 2- to 3-digit number read off of her glucometer.  Every minute of every day that number dictates what she eats, does, how she feels.....and in some cases whether or not she goes to school, goes to bed, or goes to the emergency room.  We have 2 years of data already from the downloads from her Continuous Glucose Monitor....why can't I translate that into a range of colors and crochet her a blanket that will be  uniquely hers?!

To read about the debate over whether or not to do it, please see my previous blog post about this.

Working with my daughter and selecting yarns which would work for this particular project (i.e., the right gauge, affordable, and available in a range of shades of the necessary colors), we picked out colors and I set up my key.  I chose to record her blood glucose readings at noon every day.  I chose that time because it will allow us to have a great variation - during school days, every other day that's after gym;  during the summers that's probably going to be when she's swimming.

These are the ranges I used:

0 to 69
70 to 109
110 to 149
150 to 199
200 to 249
250 to 299
300 to 349
350 to 399
400 to +++

You will no doubt notice that they aren't evenly distributed, at least at the bottom.  That was because I was trying to accurately represent the ranges typical for my kid on a routine basis.  If one of my readers is interested in setting up their own, my advice is to record the numbers you intend to use first, then see how the numbers break down - if you rarely see anything above, say, 250, then make 250 and above your top number.  If you see a lot of lows, break your lower ranges into more divisions...and so on.

My daughter chose purples as her favorite color, but in order to get enough colors to give interest, I suggested combining purples with Teals, which is how we ended up with the colors we used.

I chose a very compact stitch called Moss Stitch - it allows you to do a lot of rows in a small area, because in order to do an entire year, 365 rows in many stitches would be ridiculously large.  I then found a pattern online for a ripple using moss stitch, because I wanted something with a little more interest than just straight rows.

Here we have the results of January and February.

I'm very very pleased so far!  I figure once we get to summer, and all of the activity my daughter will be engages in, the colors will shift more towards those assigned to the lower ranges.  On the other hand, I am very pleased that those sorts of changes are not obvious.  I know what colors represent dangerous lows, or dangerous highs, but no one else does...and they aren't obvious - there's isn't one color that is the "ideal", and everything else is wrong...so my daughter won't have a constant reminder when she looks at it that she didn't have perfect BG all the time.

I will continue to post updates on my progress as I work on it through the coming year.  I can't wait to see how it all turns out in the end!

jaz