Lisa Peters’ blog, On a Life Less Perfect, illuminates the fierce nature of decision-making confronted by long-term caregivers. She and her husband care for two sons, Weston, who struggles with Attention Deficit Hyperactivity Disorder, and Nicholas, who was diagnosed in 2002 with Prader-Willi Syndrome. PWS is a genetic disorder with a host of symptoms, including behavioral and cognitive challenges, seizures and, as Lisa puts it, “…a bizarre and life-threatening uncontrollable appetite.”
In a recent post, “A Good Decision and Another 6th Grade Presentation” Lisa talks about doubting her instinct to hold Nicholas back one year in school. His experience in sixth grade had been outstanding:
She decided to try for another year with these teachers, but ran up against the usual difficulty caregivers find in dealing with administrations.
She prevailed. However, all summer, “...the doubt that plagues every decision every special needs parent will ever make returned and I asked myself if I had made the right choice?”
Lisa says, ”...when you are the parent of a child diagnosed with special needs you have no more secrets. You cannot hide your child's differences.”
But even before the school year started, she found her son’s educators, “…eager to come up with new and exciting ideas for educating their incoming students on the importance of inclusion.”
As in the past, she was asked to speak with Nick’s new classmates to tell them about Prader-Willi Syndrome.
Her most recent post, expands upon the peril of decision-making. “A Very BIG Decision” depicts how Lisa and Nick are caught between risk and hope. One of Nick’s long term medical providers, had...
But when the fierce emotions pass, she states,
Lisa tells her readers:
Through hundreds of beautifully written posts over the last four years, Lisa has not only portrayed how dependent a caregiver is upon acceptance and understanding, but also how a single small decision becomes overwhelmingly consequential to her childrens’ futures. The decisions faced by every parent are magnified by a child’s special needs, and the caregiver is often caught in circumstances outside her control, even after she has been able to successfully “…dance and sing and slay…”
About the Caregiver Blog of the Week Award
The Caregiver Blog of the Week Award will recognize the most outstanding, beautiful, uplifting, painful and/or moving story of the week blogged by a caregiver.
Caregivers are the unsung heroes of our world. Caregivers who not only do the more-than-fulltime work of caregiving but also write and share their experiences with the world deserve to be recognized and honored. Each week our team will sift through the caregiving blogosphere and select a winning blogger, blog or blog post to be honored at CAREGIFTED.ORG. Email us at email@example.com to nominate a Caregiver Blog of the Week.