Outside of my parenting and blogging life I am also an educator who is super passionate about social emotional wellness in children and adults. Take a moment to think, you adults out there reading this. When you were growing up, who taught you about your emotions? Who in your life, whether you parents, teachers or other important people in your life, discussed emotions and their importance? Continue reading “Glitter for Emotional Wellness?”
A book review of ‘Even Superheroes Get Diabetes’
Asays “Mom, do you think I have Fly-A-Betes?” I respond, “I don’t know. We will need to test it out.” She gets out of bed, climbs up on the side of the bed posts, puts both arms out and jumps. Boom. She looks at me. “I didn’t fly, mom.” She checks her insulin pump and tell me that her blood sugar is 136. We look at each other and smile. Tonight we read Even Superheroes Get Diabetes written by Sue Ganz-Schmitt. Continue reading “A Sweet Book Review: T1D Superheroes”
Our experiences with the JDRF Sugar Free Gang monthly meetings and what it has meant to our sweet brown child and our family.
One Wednesday each month, regardless of the weather conditions (hey, we live in a part of the country known for epic winters) or what else we’ve got going on in our personal family life, we head out to the Sugar Free Gang. We rely on the support and education that comes from the monthly JDRF Sugar Free Gang meetings. During these sessions the sweet ones go with educators who do activities with them and the parents stay with guest speakers. However, there’s more to these ‘meeting of the minds’ than just education. It’s not without a little sweetness. Continue reading “The Sugar Free Gang Is Never Sugar Free. Shout Out To You, JDRF!”
You can feel, almost touch, the anticipation that a new day brings. The glorious early morning orange glow signaling a new beginning. As an early bird I’m somewhat biased but I feel that dawn is the most beautiful time of the day. It will beat out dusk for me any day of the week. At the end of the day there is little to look forward to leaving only the reflections of what went well, or not so well during the prior hours. The early morning marks another opportunity, a new chance to do something meaningful. In our home most of us are early risers. Now that her honeymoon period (a period of time shortly after diagnosis when blood sugars remain fairly level) is over we’ve noticed that A’s blood sugar is an early riser as well.
We usually notice this rise in BG (blood glucose) levels around breakfast. After some research and discussion I thought it might be the product of what is known as the Dawn Phenomenon. My understanding of this phenomenon is that there are often hormone surges early in the morning that lead to increases in BGs. These surges then impact the insulin required to counter the highs and, in A, may be showing up as highs following breakfast. She typically does not have BG spikes after lunch or dinner, just breakfast. After doing some reading, speaking with medical care providers and other parents of children with T1D it seems that this is common. However, this is not due to the Dawn Phenomenon at all because when she immediately wakes up her blood sugar is not elevated.
There is some psychology involved in these early morning blood glucose rises, like most other things. A doesn’t want to manage highs first thing in the morning (or at any other time of the day I guess). I can’t blame her. Who wants to start their day like that? The other part of the psychology here, she’s got other things that she would like to keep their attention on as she starts the day like her upcoming birthday, having lunch with a friend or what to look forward to in school that day. We’ve started to consider her routine that may impact these early morning spikes. Here are some things we’ve found that sometimes work to counter the early morning high:
- Exercising before breakfast — This is not one we typically turn to. Given that A is still fairly new in her diagnosis we don’t want her to feel like to eat she needs to do 20 jump and jacks.
- Bolus 15-20 minutes before eating (this is called pre-bolus)- Normally when we give her a bolus before a meal it is as she is sitting down at the table. For breakfast we start a little bit earlier.
- Bring on the dairy — I’ve heard that adding dairy in the morning can counter the effects by increasing absorption.
- Lower carbs in the a.m.- I don’t like the idea of limiting what my daughter can eat. When she wants pancakes she should have them. We are fortunate, however, that she loves hard-boiled eggs and other lower carb options to eat for breakfast. We go for that win!
The blog ‘A Sweet Life’ does a nice job of breaking down some of the other reasons for highs BGs in their post ‘High Blood Sugars After Meals and What To Do About Them’ https://asweetlife.org/high-blood-sugar-after-meals-and-what-to-do-about-them/.
Say 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 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)
All 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.
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.
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:
- Hair Conditioner
- Skin Healer
- Shaving Soap
- Soft and Full Lips
- 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!
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.
“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.