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!

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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!

A Diagnosis Totally Changes Your Life

“It’s a manageable condition.”  When Anabel was first diagnosed this is one of the first things I heard from people.  “People live long lives with diabetes.”  Each person who brought these words, that they thought were encouraging, were all well meaning.  They were people that cared for me in some way.  They said these things to try to be supportive. Listen, when people are in crisis others try to help them and usually the first way we try to support loved ones is through our words.  We take the information that we’ve collected along the way in this life and try to use them when we think it’s appropriate.  People want to help other people.

Anabel’s story of diagnosis is personal.  It’s a day I’ll never forget.  I don’t think she’ll forget it either.  We had just recently moved to the Washington D.C. area and my schedule was hectic.  Fortunately, we had part of our village there with us to support along the way.  I noticed that Anabel was acting oddly.  She seemed out of energy all of the time, she had lost weight, was always thirsty.  We went to a movie one Saturday (a major labor of love because I really didn’t have those hours to give having just starting a new and demanding job).  We got a large drink to share.  Before we were half way through the movie Anabel drank the whole thing.  In retrospect, I should have known then that something was wrong.  This was unlike her.  We continued our regular lives.  I was not looking out like I could have or should have.  September started and it was the weekend right before Labor Day.  I had to run an errand and wanted Anabel to join me but she didn’t have the energy to get herself ready.  Something told me it was time to go to the doctor.

We made our way to urgent care.  The office was busier than I thought it would be right before a holiday.  After waiting about 90 minutes or so, the nurse came to take a urine sample.  I thought, maybe she had a urinary track infection.  Though she never had one before I thought this might explain how she was behaving.  We waited 40 more minutes.  At this point a tall doctor entered the room, introduced himself, and said that he had ‘bad news’.  As you might imagine, my mind started to race.  “Did I let this infection go too long?  Has it spread to her bloodstream?”  I had no idea what this bad news could be.  He continued saying, “Your daughter’s urine has a glucose level of 500.”  Internally, I’m thinking to myself  “Huh?  What does this mean.”  He continues in a low voice and with a very sad look on his face as his eyes looked directly into mine, “Your daughter is very sick and you need to take her immediately to Children’s Hospital.  I believe she has juvenile diabetes.”   As I write this blog, I’m struck by the fact that the doctor who diagnosed my sweet brown child was a black man.  He was one of the only that we’ve encountered through the last year of our journey.

I called my husband.  I told him what the doctor said and asked him to meet us at the hospital. On the way, Anabel said that she was hungry.  We were right near one of Anabel’s favorite fast food restaurants, and I got her a kids meal with a lemonade.  I didn’t realize it at the time, but this would be the last unregulated meal she would have.   We made it to the hospital and she was seen before they admitted her.  It turns out that we made it there right before serious Diabetic Ketoacidosis (DKA) kicked in.  The doctor’s there praised us for seeing the warning signs and acting quickly.  Every time a doctor or nurse said this, and it was often, I thought to myself, “What are they talking about?”  All I could think about was how I let it go so far.  I knew she was losing weight, I saw she had no energy and was thirsty and going to the bathroom all of the time.  All I could do was kick myself for not getting her there sooner.

I have to own that when she was diagnosed, after the initial shock wore off, I felt a deep feeling of sadness and loss.  I knew her life would change.  I believe there was a part of me that mourned the change to her childhood and life and the responsibility that I started to understand she was taking on.  As we went through the crash course of how to take care of our sweet girl I began to realize how responsible she would need to become at such a young age.  I wondered, who would take care of her when we weren’t there.  We had to train everyone and we couldn’t just leave her with anyone who wouldn’t know how to take care of her if her blood sugar dipped or how to dose insulin.  It was scary and intimidating and completely and totally overwhelming.  Anyone who tells you it isn’t is either lying or has forgotten how initial diagnosis feels.  So, allow me to validate you.  You have a right to feel scared, sad, and angry when your child is diagnosed.  It doesn’t matter that it’s treatable.

However, as much as I felt all of these emotions during the first few weeks and months after Anabel was diagnosed, she never knew it.  My mother and sister often describe me as the ‘mama bear’ when it comes to my two children.  They remind me of how protective I was when I first brought Anabel home from the hospital after she was born.  When she was diagnosed that same mama bear and warrior came out in me.  I knew I had to protect her and the best way that I could was focusing on her social and emotional well being and not letting her see me sweat.  I smiled at her when she was admitted into the hospital.  I gave her lots of hugs and kisses through that stay and when we were released to go home.  And, once she was asleep.  I cried.  ALOT.  I cried in secret.

The good news is, a year later, I can say Type 1 Diabetes is a manageable condition.  I’ve met people who have lived full and beautiful lives as people with this condition.  They had to live their lives differently than others, but they have lived full lives.  Sometimes I still feel the sadness but I see this resilient strong girl in front of me and mostly I feel a full soul of love for her beautiful spirit.

I only took 1 picture around the time Anabel was diagnosed.  It didn’t seem a time for pictures to be taken.  As I was sitting in one of the classes we were required to take before we could bring her home, and I was considering the enormity of this moment, I snapped this one photo to share with my close friends what we were going through and ask them to keep us in their thoughts and prayers. I posted this picture with the caption: “Did not expect to spend my day today learning about all of this.”

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Our Hair As Ritual

Okay, this is BIG.  Hair. Our crown in glory.   At times, a definition of our beauty.  It’s serious.

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I had no idea that along with my ‘sweet brown child’s’ diagnosis we would experience some serious woes with Anabel’s mane.  She’s never been crazy about getting her hair done.  It might have even been fair to say that  it was among one of her least favorite experiences, at least until she realized the joys of insulin shots and changing infusion sites.   What brown child really likes to get their hair done?  Our kinks and coils, curls and the fact that it is sometimes prone to dryness makes it uncomfortable experience at times.

When diabetes entered our lives, uninvited I might add, we had some challenges ahead of us.  One we couldn’t have anticipated was the havoc this would bring to Anabel’s tresses.  Her hair thinned, falling out around her hairline.  I would brush her hair and the brush would be filled with her beautiful brown tendrils.  Everything I read about T1D did not prepare me for this.  No one mentioned this as a byproduct of our new normal.  To add to it, her scalp now looked like February in upstate New York.  Flakes everywhere!  I was obsessed.  What was going on with her hair and scalp?

Diabetes was not only impacting her blood and the sugar levels in it, but also her pH  and skin.   We needed a solution.  I went searching.  Now, it’s important to share something about me as her mom.  Your wouldn’t know it to look at me but I have some Bohemian tendencies.  I was a plant based eater for a while, use vegetable glycerine soap and try to avoid chemicals in my products, especially my hair products.  I went natural with my hair about four years ago and with that choice went a lot of the hair products I used to use.  When I noticed Anabel’s dry scalp (I hate the word dandruff)… dry scalp.  Someone suggested a  DRY SCALP shampoo.  Ever check the labels on one of those?  So many chemicals!  I tried it anyway.  It worked, but was not ideal.  I wanted a different solution for her.Anabel’s hair is long with loose curls that are prone to get knotted.  I avoid using gels or any products that have alcohol.  I also choose products that are paraben and mineral oil free as these increase the likeliness of drying her hair.  Some key products that I’ve found work to soothe her scalp and combat dryness:

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  • Camille Rose Naturals Kids Sundae Glaze (about $8.00)
  • Vegetable Glycerine (Put a few drops of vegetable glycerine in a spray bottle with water and a few drops of lavender essential oil)
  • WYN Naturals  bentonite clay shampoo bar (https://www.facebook.com/groups/wnynaturals/)
  • Argan oil (Shea Moisture about $9.00)

Each Sunday, usually in late afternoon Anabel and I engage in our hair ritual.  We wash, condition, style and love her hair.  It’s a time for us to talk about the week and ask questions of each other.  There are a few winces here and there but mostly smiles. In those times, as a I stroke my daughter’s hair I often think to a quote by Maya Angelou, “In all the world, there is no heart for me like yours.  In all the world, there is no love for you like mine.”

 

A Place At the Table.

Growing up I remember hearing about everything that I wasn’t supposed to do at the dinner table.  No toys at the table.  No elbows on the table.  No TV while we eat.  This clearly sent the message that the place where we commune to share a meal is special, different than other places in the house, and there are rules here.  When Anabel was first diagnosed I decided we would go out to dinner on day 3.  I needed her to know that she could still do the things that she previously enjoyed.  When the food came it was time for a blood glucose check with her meter and an insulin injection.  (For people with T1D, who are insulin dependent, every meal starts with a Blood Glucose check and a dosing of insulin).  Anabel looked visibly uncomfortable.  I asked her, “Do you want to do this in the bathroom?”  She nodded silently.

So we crept into the bathroom with her supplies tucked under my arm like we had done something wrong.  We were hiding like we had a dirty little secret.  Thankfully, once we entered the bathroom we realized no one was there.  About 2 months after her diagnosis we moved and she started to see a new care team.   We decided at that point that we wanted to start to explore the possibility of an insulin pump and attended an informational meeting at the local hospital one evening. One of her nurses, who is also diabetic, said during the meeting “We are not ashamed of our condition and we do not check our blood sugars and dose insulin in the bathroom when we are out.”  My mind immediately went back to that night in the restaurant.  I realized something, maybe Anabel was ashamed of her condition.  I needed to be sure that moving forward we didn’t hide in the bathroom.

Like in many homes dinner time is a valued experience.  When we dine we share stories, laugh and support each other.  There is something special and unique about this one place and the time spent there.  I know that this is certainly not unique to people of color. Just like eating a nutritious meal is integral to everyone’s wellness and daily lives, Anabel’s routine care for her diabetes is a crucial part of her overall well-being. Because of this her routine is not something that we will hide.  It has a place at the table.

 

Welcome to Our Journey

This is my sweet brown child. Well, this is one of them. I have two children but only one has Type 1 Diabetes. Anabel was diagnosed just a little over a year ago. Like all parents who walk this road with a child with T1D, my husband and I have been through the flurry of emotions that come along with initial diagnosis, to finding a new normal and working not to compare life pre-diabetes. One important disclaimer here, I am not an expert on this condition.

Anabel is 9 years old.  You see the picture, she’s cute.  No, she’s beautiful!  She’s also seriously the sweetest child you would ever hope to meet. She navigates her life as someone who is insulin dependent better than most adults would. She’s responsible and thoughtful. Over the past few years we have all learned a lot about T1D. One unexpected experience though, has been what seems like a lack of representation of children of color in this community. Perhaps it’s our geographic location, but throughout the last year we have literally never met another child of color with the condition. (Okay, okay maybe 1). In her school, which is predominantly comprised of people of color she is the only one. In her support group, she’s the only one. Even when we went to family diabetes camp, we were the only ones!

So why start a blog? This experience and its apparent lack of diversity got me thinking about how one builds community within a community. Everyone inherently wants to feel included in something that matters in their lives. I want my daughter to be represented in the community of people managing this condition. I have been an educator for over 10 years and as an educator I am first a learner. In the last year I have learned a great deal (please note I still have so much more to learn) but I feel like there is value in sharing our experience as a family.

A note about inclusion… all are welcomed here! I’m a person of color although I am multi-racial I identify as a black woman. My husband is Dominican. I hope that this can be a place of support and learning for anyone interested. I do intend to share our experience with this disease from the lens of a family of color who deeply cares for a sweet brown child.

Thank you for taking this journey with us!