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!