The Morning After…

Screen Shot 2017-11-10 at 4.58.40 PMSay cheese!  It is holiday picture time (we’re serious Christmas celebrating people… like Christmas music and decorating on November 1st kind of people).  If this blog were set to a sound track, it would be to Mariah Carey’s very first Christmas album with the opening number being ‘All I want for Christmas is You’, but I digress.  It may look like A is striking her fiercest pose on Mr. Snowman here, but in fact, she’s so tired she doesn’t want to sit up straight.  Mr. Snowman’s face looks like even he knows that something is up. Continue reading “The Morning After…”

A Deceptive Honeymoon

A honeymoon… the time of calm, sweet, and easy days.  There are seldom major challenges during a honeymoon.  It marks a major life change that has taken place and its time to settle in to a new life with a new partner.  Ahhh.  Bliss.  Right?

After my sweet ones diagnosis we heard the term “honeymoon” phase a lot.  A’s blood sugars were so good for so long I swore she had the wrong diagnosis.  Her insulin dosages were so minimal they seemed insignificant.  One unit here or there.  No corrections needed.  I’ll admit I even forgot her correction formula and had to look it up to remind myself.  I sometimes thought that the doctors got it wrong.  In some part of my mind I was waiting for her body to go on auto pilot without insulin like it did before her diagnosis.  If diabetes was her new partner and they were on a honeymoon her partner was seldom showing up.  It’s deceptive, this invisible condition.  A part of me thought “If this is diabetes we will be A okay!”

In comes the real diabetes.  Here’s a view of my sweet one’s blood sugar over the past 24 hours. (Shout Out to Dexcom for their G5 Continuous Glucose Monitoring system)

img_4530All of that orange shows the times that A experienced high blood sugars.  You may be asking, did we bolus her insulin correctly? Yes!  Had her insulin expired?  No! Did she properly count her carbohydrate intake? Yes! This is what diabetes looks like outside of the “honeymoon” period. Unpredictable. Then some days when she will stay on her target range all day.  There’s no rhyme or reason to it.  When Anabel has days like this she’s chronically tired, gets very quiet and has less energy.   But.. she always has a smile on her face!

So, as she’s going through this day of highs my mind goes to her A1C and her upcoming Endocrinologist appointment.  What’s going to come during that appointment and what will the doctor ask about our management of her care?  As much as I start to think that I know about this condition, the more I realize how much I don’t know.  Diabetes education needs to continue for our family so that we gain an intimate knowledge of it.  I guess if we look at her diabetes as a marriage, we’ve got to continue to get to know her partner.  We didn’t choose it, but it’s here for the long haul and although the honeymoon is definitely over we’re looking forward to great days ahead.

The Why: A Labor of Love.

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If you’ve been reading my blog you might have noticed I like to start with stories that make the message personal.  I often share anecdotes about A and me or memories I have from my own childhood.  It’s not that I believe you want to know personal things about Anabel, our family or me.  Maybe you do.  Zero judgement if that is the case.  I share because this is personal to us. We are real people sharing our personal experiences with T1D.  As a child I spent almost every Sunday in church.  My mother was and still is very active there.  She opened and managed a food pantry when I was an adolescent.  Each Sunday and Wednesday we would go with her to stock the pantry and open it for people in need.  It took hours and as most teens and preteens I was bored when I was there.  I didn’t fully understand why she gave so much attention to the pantry when she got little to nothing in return. It wasn’t until I got older that I understood her investment there.  She’s passionate about loving people and offering kindness when she can.  She has shown this in pretty much every aspect of her life.  I consider blogging a labor of love like my mother’s. When I publish a blog I call a ‘LoLA’ or a Labor of Love Alert.  Blogging may not be as meaningful as my mothers vision to feed her community, but it is one way I show love and kindness. I’ve thought long and hard about why I decided to write a blog, when I have several competing priorities and it comes down  to love.

The Labor– Let’s be real, moms (and dads) are generally busy people.  Whether you are working out of or in the home there are tons to do.  Our kids are busying with activities, school, sports and other interests.  Let’s not even discuss the investment it requires to help them become decent human beings and contributing members to their society.  When you then add the management of a medical condition the labor becomes that much more intense.  Blogging is time-consuming.  I think intensely about what to write and how it may or may not help others.

The Love– I am hands down and completely in love with my children.  Anyone who knows even a little about me knows that my life begins and ends with them.  It’s a mom thing.  My writing, although therapy for me, is out of love for my daughter and the children out there who look like her living each day with this condition.  Being given a life long diagnosis can seem really bleak and dark at first.  You literally go through a mourning process.  Thankfully, that doesn’t last.  Over time, you begin to realize that although not ideal, you can manage it.  I have to say this.  That management, though, requires a network of people.  I can’t imagine managing her condition as a one-woman or one-family show.  She has a team of folks that care for her medically and equally important she (and we) need a team of people who will help us care for her emotionally and psychologically.  Multiple times a week I give A a diabetes pep talk.  Sometimes I give myself one.  Seeing your kid in pain is painful.  I feel building this network of people with shared experiences  is important.  As we share our experiences we can also share our best practices, tips, and encouragement.  I can’t speak for anyone else, but I need that and Anabel does too.

The Alert– I might also consider this the awareness.  Awareness with this condition is crucial.  There are so many misconceptions out in the world about T1D and the sweet ones that have it.  When A was first diagnosed I had people tell me she shouldn’t have candy and how I really need to watch her diet.  I also had others tell me that it wasn’t a big deal and how so many people live with it successfully.  Some even compared Anabel to their aunt or grandmother that was living with Type 2.   A favorite question, will she grow out of it? Misinformation and misunderstanding of T1D abounds.  I get it and I judge no one.  Before I had a sweet one with the condition I knew nothing about it.

Why does this matter?  Creating a space to tell a story and share information for people who otherwise have limited representation in this community is important.  Of all the bloggers, support groups, books and other resources I’ve sought out as a new parent of a child with T1D none looked like me or my daughter.  I’ve heard other parents, through this blog, share very similar stories.  We need this network and a space.  It’s worth the labor.