Coming Home by Julie Sellers

Author:Julie Sellers [Sellers, Julie]
Language: eng
Format: epub
Amazon: B004U2TFCS
Publisher: Thunder Hill Press
Published: 2011-04-23T04:00:00+00:00

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As time went by, the women fell into a routine. Lillie appeared without fail at Donna’s new home on Monday and Thursday nights allowing Donna some time to herself to get groceries or a haircut. Lillie had always been one of the few people Donna felt comfortable leaving her granddaughter with. An ordinary sitter couldn’t watch Molly. Her feeding tube alone was more than most were interested in learning about. In fact, Molly became agitated if left for more than a very short period with anyone other than her loving grandma or Aunt Lillie.

For Lillie, caring for her niece/goddaughter was therapeutic. It gave her a meaningful focus outside herself and for that, Lillie was grateful. On nights Lillie wasn’t caring for Molly, she began researching on the Internet for information regarding new treatments and therapies that would potentially help Rett’s Syndrome patients. The heartbreaking part of Rett’s, beyond the severe disability it brought, was that the baby girls were born and appeared to be normal for a time. Some even walked and spoke single words for up to the first two years of their lives. Then these seemingly normal little girls digressed to a point, when in some cases, they were not capable of controlled movement. No doctor or scientific researcher had ever been able to halt the process, only watch it happen.

Treatment was limited to physical and occupational therapies. The only hope for these girls was to adapt and learn ways to cope with their disorder. There was no cure, but it was easy to consume her free time surfing the Internet and reading—just in case there was something new they had not heard of or some new treatment they had not tried.

She almost always turned to her computer in the evenings instead of concentrating on the emptiness around her. Her tiny bungalow seemed huge to her without the larger-than-life personality of her husband to fill the vacant space.

One by one, she read stories of families touched by Rett’s. They were heartbreaking stories of baby girls who one day were walking and calling out “mama” and giggling. Swiftly and without warning these mothers watched their daughters digress to the point they were unable to communicate or even smile. Most became wheelchair bound and were moderately to severely mentally impaired.

Story after story Lillie read was heartbreaking and nearly always the same. There were small triumphs, to be sure, but the stories more often reflected gaining an understanding of the limitations of their daughters and finding acceptance and even peace.

One such story touched her even more than the others. It was the story of a single mother whose daughter had Rett’s. This mom advocated for her daughter in amazing ways and the little girl had made some remarkable progress. More interesting though, was the fact that this mother went on to adopt two more little girls with Rett’s and raised all three of them on her own.

What Lillie admired most about this woman, beyond her accomplishments and her strength, was her attitude.

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