A Change is Gonna Come

And things were about to change.

“As soon as we explained to her that she had diabetes, she realized that she was going to have to change her life,” Bruno said. “She was sad, thinking she wouldn’t be able to do the same things or eat the same foods as before.”

And, of course, the little girl was not the only one for whom things would be different.

“My relationship with Maria Eduarda is everything. I want her to have comfort and security and if I could take on her condition for her, I gladly would,” Paula said. “But I couldn’t make that exchange, so instead I give every piece of me I can.”

Changes came quickly. Every family member felt the impact.

Of course, new food choices needed to be made and the girl who loved her sweets did not always love what replaced them.

She really didn’t like the need for frequent glucose monitoring, with at least 8-10 fingersticks every single day.

She seemingly spent most of her waking hours either getting over a stick or dreading the next. And there was Paula checking on her throughout the night. And don’t forget the insulin, whenever necessary.

 Plus school, where an assigned teacher helped with her monitoring each day, bringing unwanted attention to the fact that she had an unusual condition that made her stand out in ways she did not like.

The Rhythm of the Fight

But fortunate families move forward from health setbacks and find their rhythm. Over the next three years, the Bravils were indeed fortunate. Which is not to say they didn’t have room for some good news when an innovative continuous glucose monitor (CGM) called FreeStyle Libre entered their lives.

With the FreeStyle Libre systems, one can get accurate glucose readings¹ and trends without fingersticks^* and also provide insights into where glucose levels have been, are now, and where they may be headed.

“I have family in the United States who were talking about FreeStyle Libre 14 day, so Paula and I started to learn more about it and to see if it was available near us,” Bruno said. “When we saw it was, we decided to see how well it worked.”

It worked.

“Since we discovered FreeStyle Libre system, we noticed a better quality of life for Maria Eduarda,” Bruno said. “She didn’t have the daily wear and tear of multiple fingersticks and the measurement is constant, easier to track, and faster.”

An ever-growing, and even busier, Maria Eduarda agrees: “The fingersticks were a horror. I would feel a lot of pain with the needle and there were a lot of holes. It’s been a relief.”

Just as importantly, the sensor on the back of her upper left arm has not slowed her down.

“I still do everything I want. I run, jump, and play in the pool and it doesn’t bother me at all. It’s also really easy to use. You just connect the phone app with the sensor and it gives you the results. I don’t need anyone’s help anymore.”

Technology, however, can only do so much to improve the life of a tween girl at school.

“She loved the device, but then she started asking about maybe returning to the traditional method,” Bruno said. “But we could tell it was for another reason.”

That reason turned out to be that she felt self-conscious, as she was the only person with the circular sensor at her school.

Tattoo You

“That’s when I got the idea for the sensor tattoo,” Bruno said.

Being the loving parent of a child with a chronic condition is never easy. As Paula observed, they would do anything to make their little girl’s life easier or at least make her smile as much as possible.

Figuring she would likely be wearing the sensor for a long time, he decided to commit to wearing a sensor tattoo for even longer. A permanent sign of his love.

“I wanted to put effort into getting even closer to her, and she would know that people were supporting her, for as long as possible,” Bruno said.

Not telling anyone of his plan, Bruno went to a local parlor and had a small circle placed within a larger one, on his left upper arm, simulating Maria Eduarda’s device.

“I remembered how I felt when she was first diagnosed and those emotions ran through me again. I thought of all that she’d gone through,” Bruno said. “When I got home, I asked her what she wore on her arm and she said, ’Only my device,’ and I showed her the tattoo and said that I was now using it too.

‘Dad, I can’t believe you did that,’ she said. And she cried.”

Always Together

They shared the new “sensor” with her mother when she returned home.

“For her, with the tattoo, it came full circle,” Paula said. “She feels more confident now. It gives her a sense of security that she is never alone.”

The tattoo made physical the underlying sentiment that binds the family every moment.

“From the day I got the tattoo, there is a motto we use with Maria Eduardo: always together,’ Bruno said. “Whenever we do things, we say to each other, always together. It is a symbol that will stay with me for the rest of my life and a thought that will keep us united with our daughter.”

There are indeed many ways for a parent to share their love with their child.

Whether it be waking in the night to ensure their continuing good health, marking one’s body with a symbol of shared experience and devotion, or vowing always to be together, the sentiment is the same: We are family.

Reference

¹FreeStyle Libre 14 day User’s Manual. 

Disclaimer^* Fingersticks are required if your glucose alarms and readings do not match symptoms or when you see Check Blood Glucose symbol during the first 12 hours.