The doorbell rings and Paige runs to answer it. Her friends spill into the living room, a colorful blur of activity. They idle for a few minutes, talking excitedly, as Paige grabs her purse and yells goodbye over her shoulder. The girls head off to enjoy one of the many events that take place your senior year of high school. As the door closes behind them, the light and laughter that they brought with them dissipates immediately. Suddenly it’s eerily quiet. Megan looks out the window and watches her sister Paige and her friends pile into the car, their energy palpable. She looks away. There was a time that she could tag along with them, but those days are long gone.
In October of 1997, two bundles of joy made their appearance in the world. Twins Paige and Megan were perfect and instantly adored. Mom Heather tells us, “It was love at first sight.” But the girls were 10 weeks early and kept in the hospital for several weeks while they stabilized and gained weight.
After a month, Paige was given the green light to go home. But for Megan, things were still unclear. She was having more issues than her twin sister, and was given an infant brain scan. The scan showed that Megan would have significant disabilities, and one doctor bluntly told the joyous new parents that they could expect Megan to be “severely retarded.”
But Heather had waited too long to be a mother to be hurt by his piercing words. She had two beautiful, perfect girls and she was going to take them home. The first few months were “a fun time.” She would dress the girls in matching outfits, watch as they met milestones together, and savored every moment with them.
At four months, the similarities stopped. Paige continued to develop normally, and Megan was left behind.
Megan was diagnosed with Periventricular Leukomalacia, a condition in which parts of the brain are filled with air cysts, which was causing her significant delays. After genetic testing, Megan received a second diagnosis: Neurofibromatosis Type 1. This rare disorder manifests in benign tumors all over the body and skin. It purely by chance, a “spontaneous mutation in utero.” Asking the question “Why? Why her?” was fruitless… Heather took a deep breath and made a silent promise to her baby girl: That she would give her everything she needed to have a happy life.
Over the next few years, the family settled into their new normal. Heather, now a single mom, worked full-time as a Physical Therapist Assistant. The three of them “learned to rely on each other.” The girls attended public school, dressed up for Halloween, went to the beach in the summers and got pulled around in sleds during winter. They had a whimsical childhood. The bond between the girls was less like a “twin connection” and more of a big sister-little sister relationship, but they valued their friendship above all.
But during Megan’s teenage years, things took a turn. Her NF played a bigger role and several new tumors began to show up on her face and extremities. Pain in her joints started to bother her, something she’d never experienced before. She spent more and more time in her room, alone. Heather couldn’t afford a wheelchair-accessible van but did purchase a specialized car seat in an effort to get Megan out of the house more. It didn’t work.
Megan became a recluse, weighed down by her chronic pain and limited mobility. She couldn’t control her disorders, the tumors, or the aches. The only thing she could control was how she responded to it all. She could only cope… and she preferred to cope alone. To watch the light leave her was indescribably painful for her family. She no longer left the house but elected to stay in her room, watching movies, and passing time.
Megan needed to help. She needed to remind herself of her own greatness, of how worthy and deserving she is for a life full of experience and adventure. She needed a miracle.
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