*This is part seven of Harlie’s story. The rest of her story can be found here:
part one, part two, part three, part four, part five, and part six.
Life for Harlie will always be about balance. It is balancing what she wants to do with what she can do. Balancing living with a disability but not being defined by it. Of knowing her limits and embracing them but also learning when to take risks.
God gives us tools
She knows she’s a masterpiece created by God. But her skin isn’t. It’s flawed. And there are times when she would prefer that it wasn’t. Especially when it prevents her from doing stuff she would like to do or when it painfully reminds her of her limitations. Those days are hard.
What helps her get through difficult times is her relationship with God. It has allowed her to look past the imperfect and see hope and possibilities.
She puts it this way, ‘everything God gives us on earth can be a tool.’ We can surrender and submit it to Him, allowing Him to shape and mold it into something beautiful. Or we can grip it so tightly that it becomes deformed.
Gripping too tightly
In other words, if Harlie were to hold on to all her imperfections and flaws, she would only see the negative consequences of EB and develop a woe-is-me mentality. This could turn into bitterness which she could also use as a tool against her family.
She could blame her parents for having her. After all, they knew EB was a genetic condition, so they shouldn’t have had children.
She could even take it further and blame her mom for not praying hard enough when she was pregnant with her or even not having enough faith.
Essentially, Harlie’s gripped EB so tightly it’s become a tool that causes pain both to herself and to those around her.
Gripping it lightly and allowing God to use it
On the other hand, she could also choose to grip it lightly by surrendering it to God. She could trust that He has a plan even if she doesn’t understand it. This means she isn’t a victim of her circumstances. Instead, every part of her life has a purpose even the parts that are hard, painful or incomprehensible.
And instead of bringing division to her family, she can use it to draw closer to them, knowing they understand her struggle. She can also use it as a learning tool for compassion, patience and growth.
Ultimately, gripping it lightly brings clarity because Harlie sees EB for what it is. It’s a rare skin condition. That’s all. It doesn’t make her imperfect. In fact, it has nothing to do with who she is. It’s something she has and God can use it as a tool to make a difference.
The chain around her neck
Harlie has accepted the fact her life is different and she’s happy with that. In fact, if she could go back in time and tell her younger self anything, it would be to accept and embrace being different because that’s who she is. And it’s okay. This difference that has taught her to be more compassionate, understanding, and accepting. It’s also a tool she uses to connect and encourage others who have disabilities, invisible or apparent. It has provided her with a platform to impact others and be a source of hope for them.
Although EB is a chain around Harlie’s neck, how she views that chain is up to her. She can see it as something big, heavy, and cumbersome that weighs her down. Or she can view it as a piece of jewelry that accessories her story. But one thing is for sure, she’s living a blessed life. It may not be typical but she wouldn’t change anything about it.
