Imagine hearing these words spoken about your baby: Brain Injury. Neurological Disturbance. Infant Stroke. Cerebral Palsy.
Do you shudder and wish to turn your attention elsewhere as you read that first line? It’s scary. I understand, but I rarely if ever share the dark side of CP and what over a million other families face so please keep reading. Part of awareness is pride and acceptance, but the other side of awareness is helping society to understand the challenges our community faces and our community’s list is long.
-Imagine praying for your child’s life and bargaining with GOD. I DID THIS.
-Imagine not being able to find a reliable online source of information on infant brain injury or cerebral palsy. This is what we faced but now we have our resource website and blog called CP Daily Living and our non-profit CP NOW (and we are working on merging them)!
-Hearing that nothing can be done for your child and to go home and love them and wait and see how they develop. This is what parents typically heard when Maya was born 12 years ago, but they are hearing less of it now and are being referred for early interventions services.
-Hearing that your child may never walk, talk, learn, hear, or eat on their own.
-Feeling that you are to blame for what you are hearing about your child.
-Feeling anxiety, fear, anger and unceasing guilt about today and the future.
-Feeling physically exhausted because your baby has an infant sleep schedule for years.
-Wondering how the next phase of development may go and what new symptoms or diagnoses may emerge–because the brain is the control center for everything and our knowledge is so limited.
-Hearing that the majority of people with CP are in chronic pain and that there aren’t good solutions.
-Wondering how you will gather the strength to physically care for your growing child who can’t stand on their own.
-Hearing that just as you busted your behind to help your child get ahead that people with CP start to decline in mobility and function very early in adulthood.
-Hearing that you are almost at ground zero yet again because there isn’t enough research to help you or your medical team know how to best help you (as and adult with CP) or your child address their symptoms.
This is just a small window into what parents of children with CP face and some of what I personally have faced and continue to face as a parent whose baby suffered an infant brain injury. This is why CP NOW exists. Some of these circumstances have already improved and I believe there is tremendous potential for change, but we have work to do!
This is why I, a mother have set my fear aside and never hesitate to share my perspective and to speak out against people and ideas that hold this community back or don’t give people with CP their best chance. I have spoken out at medical conferences, in books, journal commentaries, at our local hospitals and at NIH. Getting this community ahead and helping my daughter live her best life is what keeps me up at night.
These families and much of our adult population constantly find themselves swimming against the tide. They are looking for support, hope, inclusion, freedom from pain and knowledge to advocate for themselves and the best treatments and opportunities. CP NOW exists to develop the supportive educational materials that have never existed for people with CP and their families and to advance research and health and wellness programming that facilitates inclusion and participation in life.
We exist to offer people with CP and their families the best possible life–NOW.
Will you donate $12.00 or more to CP NOW today to honor Maya’s 12th birthday fundraiser for CP research? We are well on our way to reaching our $25,000 goal but we need your help. You may donate here in honor of CP Awareness Month 2019: cpnowfoundation.org/donate