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It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Photo-A-Day: Advocate

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 I won’t always be there to do it for her.

As her mother, I believe it is my responsibility to teach her how to stand up for herself in this world.

Originally posted in July 2013 over at Type 1 Nation, I’m re-sharing this post about our journey to the 2013 session of JDRF Children’s Congress through advocacy.

I stood next to my baby’s hospital crib, staring at the cardiac monitor and multiple IV pumps. Her little face was incredibly swollen, and she couldn’t open her eyes. She was barely conscious, responsive primarily to painful stimuli. Every 15-30 minutes she moaned as someone poked holes in her innocent little body – arterial lab draws, multiple attempts for venous access, finger and toe pricks. As the night progressed, she slowly began moving around more, and eventually called out for me.

“Mama.” 

At first it was just a soft whimper, but before long I could hear the energy return to her tender voice, and took comfort in her stronger cries.

Our journey to JDRF Children’s Congress began on July 25, 2005.

I didn’t know it at the time, of course. At the time, I was lost in a haze of confusion, fear, and disbelief. I was overwhelmed with information, and doubted my ability to learn everything necessary in order to keep her alive at home.

The horrible low blood sugars started shortly thereafter: random occurrences of passing out, hitting her head, and an hour or more of confused recovery.  She was hardly able to communicate verbally, let alone find the words to tell me when something was wrong. Paralyzed by anxiety, I was on constant guard for the next episode, and secretly wondered if it would be the one that would take her life.

And I knew.

Faced with the imminent loss of our health insurance, my husband began a worldwide search for a position that would provide our family with secure access to benefits. Ultimately, we would leave everything we had worked for behind to move across country as the economy crashed around us. In the interim, I called one insurance company after another in search of a policy to cover the gap, and was denied time and time again, because of her “pre-existing condition”.

And I knew.

We decided to transition to an insulin pump, hoping the precise micro-dosages would stop the terrifying lows. We had to fight with our insurance company to prove it was a medical necessity. We had to fight with the medical supply company to use the infusion set that suited her best. We had to fight with the pharmacy to get the number of test strips we needed.

And I knew.

She started preschool, and they refused to help her in the classroom. Then the school nurse insisted that we put her back on injections. Even after district level meetings involving an advocate, she was sent home with a low blood sugar once, because she identified a problem at 3:22 when the school day ended at 3:20.  My neighbor carried her limp body to my doorstep five minutes later in tears after trying, unsuccessfully, to force her to drink a juice box in the parking lot.

And I knew.

I knew we had to fight back. I knew I needed to equip her with more than her diabetes supplies. I needed to help her find her voice; then use it to advocate for her rights, her health, and her life.

We applied to attend Children’s Congress, and were rejected.

Again.

And again.

All the while, she attended meetings with legislators at our State Capitol, worked hard to raise awareness in her community, and made it a point to welcome newly diagnosed kids into her circle of T1 friends. She has defeated stereotypes, overcome challenges, and takes great pride in her ability to manage her diabetes with confidence.

In the fall of 2012, we applied for Children’s Congress a fourth time and cheers erupted from our home when she opened her invitation of acceptance a few months ago. The road to Children’s Congress has been a steady journey of battles and victories, but one thing is for certain:  She’s just getting started!

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