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.