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.

Cocoa Butter: An Elixir For Healing?

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*Photo Credit

There are so many incredible things about the technological advances with T1D that have made this condition manageable and livable.  In many ways I am grateful that A has this condition at this time rather than 20 years ago, when all of the research we currently have wasn’t available.  However, I have to admit.  There are some down sides to the tech.  Some are significant, others are smaller but still impactful.  Small inconveniences are inconvenient nonetheless.

When I was growing up my grandmother was convinced I would be Ms. America.  Seriously.  Whenever I would have a physical accident resulting in a scar she would chide me, telling me that “Ms. America doesn’t have scars all over her body.”  Secretly I was thinking, “I don’t want to be Ms. America.” Of course, I never shared this outwardly.  When a scar came, as they often do with children, my grandmother would run to the store to get a cocoa butter stick to rub on the area to support in healing and decrease the visibility of the scar.  Let me just say, this beautiful butter was coveted in our house and it always worked to get rid of these skin imperfections.

Cocoa butter, comes from the cocoa tree.  Yes!  The same cocoa as the chocolate we eat.  Chocolate is its own kind of healer, especially on a bad day.  Que the hot chocolate please. It totally makes sense that this cocoa would also have some legitimate healing qualities.  One of the unintended consequences of all of the tech of T1D is scarring.  The infusion sites of insulin pumps and Continuous Glucose Monitors (CGMs) and their adhesives leave marks on my sweet brown child’s body.  It bothers A to have marks on her skin (a quality she inherited from my beautiful grandmother).  I know when she sees them she feels outward scars of what is often called an ‘invisible’ condition.  I’ve returned to the cocoa butter of my youth to address this concern with my daughter.  Some of the most noted properties of cocoa butter are moisturizing and prevention and treatment of stretch marks.  The website ‘Natural Living Ideas’ highlights 13 of the most important benefits and qualities of cocoa butter, one of which is it’s healing abilities.  Here is the full list of 13:

  • Moisturizer
  • Hair Conditioner
  • Anti-Aging
  • Skin Healer
  • Shaving Soap
  • Soft and Full Lips
  • Relaxation
  • Aromatherapy
  • Boost Immunity
  • Help in Hearth Health
  • Eases Constipation
  • Encourages Happiness

You had no idea, did you?  I know what you’re thinking.  How have I missed the benefits of this butter, this seemingly magical elixir for so long?  Let’s not keep it a secret any longer.  Shout it from the rooftops!  Cocoa butter helps our sweet ones with their scarring from the sheer blessing of their technological tools. I’d like to add, if you read my ‘Hair as Ritual’ blog you can add cocoa butter to the list of products I use in A’s hair.  Go forth and butter up!



Sweet Book Review: The ABCs

A is an avid reader.  Her head is always in a book and she finds such joy in discovering a new literary morsel to savor.  I remember the day she learned to love reading.  She was two and we were reading One Fish, Two Fish, Red Fish, Blue Fish by Dr. Seuss for the first time.  As she heard my voice change with the rhyming words and saw my facial expressions her little face lit up.  At the conclusion of the book she looked at me, smiled and said “Again.” Of course, as any parent would, I read it again, and again, and again.  After a few days with this one book I’ll admit, I hid it.   I hoped she wouldn’t find it, and when she did I held my breath and waited for her to say, “Read.”  This started a beautiful cycle of reading (mostly Dr. Seuss at first) and then discovering new topics and authors.  Nowadays she wakes up and picks up a book until everyone else wakes up.  She also usually begs to read a book in bed (in a dark room) which I always say no to.   I lose some level of popularity with her in these moments.

These days A enjoys silly books, like Captain Underpants and informational texts like National Geographic for Kids.  But she will literally give any book a try.  Given her love of all kinds of texts I try to find books that interest her at her age.  Along with her interests I’m invested in finding her books that represent people who look like her as strong protagonists and relate to her daily life.  Since her diagnosis talking about diabetes, the way it has impacted her life, and how to adapt have become important aspects of our new normal.  Finding children’s books that represent diabetes in a hopeful and positive light while also educating has been difficult.  Let’s not even talk about trying to find these types of texts that ALSO represent children of color.  I M P O S S I B L E. At least based on my research.

I’m still fighting the good fight to find interesting texts that will be meaningful to her.  I recently came across The ABCs Of Loving Yourself With Diabetes by Riva Greenberg while doing an online search. At first I thought this may be a children’s book, however once we received it and started reading we found it to be for a more mature audience.  The readability level is appropriate for A  but the content in certain sections seems to be geared towards adults.  Overall this book has  a genuinely positive vibe that focuses on the possibilities around the life experiences that come with being diabetic. The illustrations are endearing and sweet.

In the introduction the Greenberg says “I believe all of us with diabetes, and our loved ones, can benefit from the emotional nurturing, spiritual principles, understanding and support you’ll find here.  It is my hope that this little book will put a tiny “I love me” patch on the hearts of all who read it.”  Although not a book you might choose for some of our littlest sweet children, there are some beautiful messages here for those with this condition and those who love them.  We could all use a few ‘ABCs’ of self-love and acceptance.

Purposeful Language or Passive Resistance

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“Hey, A you need to check your blood sugar levels.”  She looks at me.  Pauses.  Then she continues what she was originally doing.  I believe she heard me.  I want to correct her.  Before I do, I sit and think for a moment.  I can sense a certain level of passive resistance in her lack of response.   I’m constantly reminding Anabel that I will not tell her what to do with her body.  There are enough daily demands on her with her condition that must leave her feeling out of control  often.  I fix my statement. “Anabel, when you’re ready and if you would like to eat we will need your current blood glucose level.”  She pauses again and then responds.  “Okay, mom.  I am hungry.”  She goes to get her blood glucose meter.  When my children were toddlers I used the term ‘immediate obedience’ to communicate that they needed to listen to mom and dad.  That was important to keep them safe and at an early age to teach them the importance of listening to adults who they knew.  I guess in the current day and time its ‘old school’ but when I was growing up if I didn’t listen to my mother or grandmother there was bound to be trouble.

Early on after her initial diagnosis like most parents I guess I was obsessive about her BG levels.  I panicked when her blood sugar was high and low.  They were very often low and I would react with my tone of voice and facial expression when I saw a number I didn’t like.  This was unconscious.  However, when it was brought to my attention I realized that my unintentional responses were impacting my sweet brown child.  A very wise and experienced staff member from Northeast JDRF discussed the importance of language choices when talking to our kids who have T1D.  One of the key messages of this dialogue was to avoid the communication pitfalls.  Here are some of those takeaways:

  • Avoid value judgements. We don’t discuss high blood sugars or low blood sugars as good or bad, they are just a number.
  • Give ownership.  Each child with T1D has a choice to make about the care and maintenance of their condition.  Giving increasing ownership over care and decision-making is important in their growth, development and overall independence.
  • Be patient.  Just because a request was made does not mean our babes will respond immediately.  That immediate obedience expectation isn’t applicable anymore for us.  Many of the requests we have of our children are physically painful for them.  We can’t expect that they will quickly and enthusiastically comply.
  • Give options.  We all want options, don’t we?  Our kids should have 2-3 options to choose in the moment when diabetes care is needed.  Example: Hey A, do you want to change your infusion site in the morning or before you got to bed?  When she doesn’t want to change her infusion site.  I always remind her that we can go back to doing insulin shots before she eats and long acting insulin at bedtime.  She has a choice!  Thankfully, at this point she consistently chooses the infusion site change.
  • They are not their condition.  When A comes home from school one of the first things I want to do is ask her how she is feeling physically or how her levels were.  However, there is so much more to her than this condition.  It can’t be the first or even primary topic we discuss with her.

I’m fortunate to have a very reasonable child who is inherently responsible and thoughtful. It has been a very easy task discussing her options with her around her care and putting a lot of the responsibility in her hands.  I know all parents don’t have this experience.  A is also only 9 so any resistance we get is passive and short lived.  I know it may not always be this way.  I also acknowledge that teens and those who are frustrated with their condition will, at times, very naturally rebel against it.  We’ve got a long way to go along this journey and there are bound to be bumps and bruises along the way.  I have, however, made a commitment to respect A’s right to be treated with respect and that begins with my purposeful language.

Guest Blogger: Faux Mommy Love, Sunshine, and Judicial Insight

I am literally honored to introduce tonight’s blog and the guest blogger who is an integral part of our village.  She is passionate about our sweet brown child and sharing our experience with a community of people it can help.  Our contributor tonight is my twin sister, Topaz, who herself is a force to be reckoned with.  Here are some of her words about our story:

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“We all have specific days that remain as vivid in our minds as the day itself. Anabel was 2 years old, wearing a pink plaid skirt and a pink wind breaker. Her curls were short and bounced as she walked. The day was beautiful, sunny with the slightest bit of wind. My mother and I decided to take our sweet brown child on a walk to a nearby park. We strolled along, chatting, with Anabel quietly taking in the sights. She was never a child to say much, but she observed everything.

We arrived at the park and released her from her stroller, allowing her to explore on the grass. I sat on a nearby bench watching her, the sunlight shimmering along side her. She found a dandelion…picking it up and placing it in her mouth. I rushed to her, taking away the weed, replacing it with apple juice…a welcomed substitute. I watched her with the love of a mother. Technically, I’m just the aunt, but in my heart she is my child. Like all parents (or in my case faux parents) I watched my sweet girl as she played. I thought about what her life could be. Will she be a dancer? A doctor? A teacher? An artist? Will her heart be broken? Will she make good choices? Will she learn the value of kindness? I hope she finds true happiness. I hope she always loves me and lets me love her always.

That day, as we played in the sun, I never imagined that my daughter-niece would be faced with an obstacle, like Type 1 Diabetes, so early in life. Unlike my sister, I find it difficult to hide how I feel. If I feel angst or sadness it is, invariably, written all over my face. When Anabel came home from the hospital after diagnosis I worried. I worried about Anabel, I worried about my sister. I wanted something else for her life. I didn’t want her to face this type of obstacle and the limitations that can come with it.

Full disclosure, I am an attorney (don’t hold it against me) with a love of all things United States Supreme Court (corny, yes I know). After learning of Anabel’s condition I began doing research and found that Sonia Sotomayor is a Type 1 diabetic. Reading an article about her initial diagnosis and how she’s managed her condition was both reassuring and inspiring. While speaking to a young group of onlookers, who also suffer from Type 1 Diabetes, the Justice noted: “You get to do anything you want in life, because I have…”

Life doesn’t stop post-diagnosis, the way we live it may change a little bit, but we continue on, attempting to live our lives in the fullest manner possible. My two year old sweetheart, with the short, bouncing curls has grown up…maturing in ways that are unexpected. But if I look closely, the innocence is the same…her quiet, exploration continues.”

Teaching The Teacher

My daughter is passionate about her school, I mean really passionate.  This year school didn’t start until early September.  She is accustomed to starting school in August.  She was literally upset about waiting two weeks for her school to start.  She pouted around the house and said that she she wanted to speak to the principal about his decision to “start school late”.  Her brother didn’t share her passion, but that’s a different story.

As a mom of a child with T1D I know that Anabel’s experience in school is critical.  In fact, what the teachers, administration and staff that work with her know, can be a matter of life and death.  Do they know how to use Glucagon?  Can someone count her carbs and dose insulin or give a bolus?  Equally important, can they support her social and emotional needs of a newly diagnosed student?  Ensuring that the answers to each of these questions is affirmative starts with teaching her teachers.  As an educator myself you might think I have the edge on doing this.  Yes, I’m great at teaching adults and other people’s children.  However, when it comes to my own children, when it’s personal and effects my home life my passion can make it more difficult.

As most parents with children with this condition I’ve noticed how many misconceptions there are about this type of diabetes.  One of the biggest misconceptions is that our kids can’t have sugar.  I’ve also heard that our kids weight is a factor for the condition. No, no, no!  Sugar keeps our kids alive so their school staff need to know this.  I’ve made missteps in the past when introducing Anabel and her condition to her teacher.  I sent a letter and snacks in a bag and saved the in person meeting for the school nurse.  Big mistake.  Her condition needs to become personal to the staff working with her and most importantly I need to educate them about her needs outside of academics.

Here are some of the most important tips I have as a teacher and an intensely passionate parent:

  • Meet with your child’s teacher at the beginning of the year to give them an overview of the condition, key needs and to review what if scenarios.
  • Send a pack with snacks and a list of when to use the snacks. (The picture here is an example of Anabel’s pack. I got this tip from another mom online).
  • If you send your child to school with lunch count the carbs ahead of time and put a post-it in the lunch box with the carb count.
  • Get a 504 plan and don’t let anyone tell you that your child doesn’t need one.
  • Hold your child’s school accountable!  One of the biggest mistakes parents make is not calling out educators when they don’t meet the needs of their child.  This advocacy is flat out crucial.  Yes, educators are specialist but YOU are the specialist on your child and their condition.
  • Your school nurse is your best friend.  Invest in that relationship (more to come on this one).
  • EVERY child does not need to have their own class party for their birthday and bring cupcakes and goodie bags filled with candy!  Inevitably those cupcakes are given after the lunch bolus and our babes either feel left out or indulge and end up with sky high blood glucose levels.  Check your school’s wellness policy.  If you agree with it, support it, if you don’t help them to revise it!


So, moral of the story here is as a parents of a sweet child you’ve got to be an advocate.  Some of the challenges that come with advocacy in our community (as people of color) is that we are sometimes taught not to challenge authority.  We’ve got to do this unapologetically while remembering that working towards a good relationship with our child’s teacher is important.  It all starts with teaching the teacher!