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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