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Hope writes its own story

August 3, 2009

When Gretchen Peters was expecting her fifth child, she hoped to bring home ultrasound pictures and reassurance of a healthy baby,  but left the doctor’s office empty-handed.  The imaging picked up a cleft lip and other possible problems of a serious enough nature that her doctor recommended an amnio. Preliminary results ruled out the more common trisomies . . . but pointed to something more rare. Further testing of the baby’s cells at Mayo Clinic brought the surprising answer: tetrasomy 12, aka Pallister-Killian Syndrome. Now 4 yrs old, Simon is not the child Gretchen Peters expected – but he is the child she hoped for. 

Each child is uniquely affected by PKS.  While about 50% of children with PKS are able to walk, most have low muscle tone and the majority are visually impaired. Simon is profoundly affected, he has many disabilities. Yet, he is learning and achieving at his own pace. For instance, he recently has begun to use a straw more regularly – a skill that will really be of use to him. One skill he has definitely mastered is giggling – and making others laugh right along with him. Regardless of what he can or cannot accomplish now, or ever, Gretchen believes that Simon is able to please God just by being who he is – and that is good enough for her. Her motto is  this: hope writes its own story.

simon

Sharing hope is part of the story. Gretchen enthusiastically reaches out to any newly diagnosed parents. She knows the diagnosis experience can be overwhelming, and wants parents to know they can turn to her and to her org, PKS-Kids for support and information. When Gretchen wrote her story for us several years ago, she ended with these encouraging words, “Yes, the diagnosis is frightening and not what you want, but it’s your child and you will love him or her with a fierceness you’d never imagine. Not every day is easy or optimistic, but have faith and stay strong even when it doesn’t seem like you can anymore. Take one day at a time and even one hour or minute if that’s all you can do. Your child loves you and needs you. You won’t be sorry.”

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