We named her after two fictional characters. One, curious, independent, and thriving in the fantastical. The other, unabashedly herself, loyal, and optimistic. All attributes I hope she can discover within herself.
She was born into the atypical, and I am profoundly grateful for that. I hope she recognizes the value of her unique journey throughout her life.
In the past year, she has faced challenges, and I have witnessed her navigating them with remarkable resilience.
The other day, however, it all became too much. She broke down.
In the smallest way, her little 5-year-old mind began to grasp the implications of her trial, the reality of a lifelong blood disease. It might sound simple or even silly, but she had to leave a place she loved because of yet another bloody nose.
It was a moment I knew would come—the realization that something else was dictating her life.
It wasn’t yet another appointment or one of the many needles she’s had to endure. This time, it meant leaving a fun swimming lesson early, not wanting to go, and feeling embarrassed by everyone’s shock and stares.
To some, it may seem trivial, but to a little, happy girl, it was a big deal. A heartbreak.
In that moment, I hoped and prayed that she would always overcome the limitations imposed on her. That she gets the chance to be everything she wants to be.
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