Here we hope to educate you further and create awareness about cerebral palsy by offering the personal stories of people who live with it. You will see our community includes people with many diverse interests, talents, and professions:
Come hear our stories…
My daughter Lexi has Spastic Quadriplegia type cerebral palsy and here is her story:
When friends, neighbors or collogues inquire about Lexi, I have to stop myself from talking to them ad nauseam about every minute detail of her development. I want so desperately for them to understand our “normal” and celebrate every milestone with us, no matter how insignificant it may seem to them. But, I have yet to master this, somehow, I can never seem do our story justice in the context of a simple conversation. I mean, how does one compress the most joyous and the most devastating moments of their life into just a few minutes? How do you explain what it’s like to have a perfectly normal pregnancy, be decorating the Christmas tree and baking Christmas cookies one minute and suddenly rushing off to the ER the next – not having any idea of what is happening and certainly not having any control over it. How do you explain the fear you felt when the doctors rush you away for an emergency c-section at 27 weeks’ pregnant? Or how it felt to be my husband, waiting helplessly. How do you explain:
The first visit to see your precious baby – so fragile you’re not even allowed to touch her. Spending three long months in the Neonatal Intensive Care Unit (NICU) dependent on doctors, nurses, medicine and monitors. Being petrified to take your child home because, more than any new parents should, you have a complete understanding of how fragile your new baby really is. How do I make them understand that while every parent experiences sleepless nights, ours were more about researching therapies, doctors and studies than diaper changes and bottle feeds.
How do I explain what it’s like to have many months with a doctor appointment on every single day. Or, what it’s like to hear that your child may never walk or talk, that your child is “not compatible with life?” I’ve realized I can’t do that. We are lucky. We’ve been blessed with a wonderful support system of family and friends who’ve been with us every step of the way, and I don’t expect even them to completely understand what it’s like to be in our shoes, so how can I expect anyone else to understand?
BUT — What I am certain I can do is tell you the facts:
Fact Lexi was born at 27 weeks, she weighed 2lbs, 5oz;
Lexi has hydrocephalous and cerebral palsy;
Lexi has cerebral hypoplasia; She has vision problems and enamel hypoplasia;
She wears glasses, braces, uses a walker, and a whole host of other smaller issues.
Fact Lexi is not defined by any of these things; Lexi is the strongest woman I know;
Lexi absolutely loves life.
Lexi has fought from day one, against all odds. She has endured being poked with needles so many times that her tiny heels are scarred from pinpricks, she has had multiple surgeries, numerous CT scans and MRIs and has spent over 3 1/2 months of her life in the hospital. But through it all, she’s has handled it with more strength and courage and tenacity that I ever could. She hasn’t just endured. She has excelled.
You see, Lexi doesn’t know that other kids instinctively do things she has to work hard for. She doesn’t know what CP means or that therapy isn’t a normal part of life – but someday, I hope to able to tell her that she played a major role in educating the public and raising awareness about cerebral palsy. That even at such a young age, she served as a role model for many and that because of her and other brave kiddos like her—one day—all children with CP will have the treatment and resources available to live independently.
Beth Sonneborn (aka Lexi’s Mom)