Welcome to our site! I was ready to launch this project a year ago. My intention was to create a website for parents and caregivers of children with cerebral palsy. Each time I got the motivation and inspiration to pick it back up, “Maya” (as we shall call her throughout the site) would have a seizure that required a hospital visit. At that point, the last thing I wanted to do was think more about her condition. I also felt vulnerable in sharing myself so openly with other people. I am a very outgoing and outspoken person but I am also very private.
As we have continued on this journey as a family I have discovered the importance of using my voice to help my child and I believe I have done this successfully and positively in a variety of forums, circumstances and relationships. At the very least perhaps you will find value and camaraderie by me sharing the discoveries I have already made while stepping out of my comfort zone. Cerebral palsy presents in uncountable ways and the journey is always unique, but there are commonalities and struggles we all may relate to in tangential or sometimes even in profound ways.
So many people have said to me, “I am sure you have read, or heard, or seen the movie about…” and often they do not even hear me say “no” I have not. I have the type of personality where I make it my business to know whatever I can to help my daughter but I have my own way of doing it and I like it to be quick and thorough. There is so much information out there I could not possibly attempt to familiarize myself with all of it.
After our daughter was born I would periodically review the list of milestones provided by the pediatrician and would avoid torturing my psyche by not reading entire books written about milestones. My approach has always been to surround myself with the best doctors, therapists, and professionals I could for my daughter, and with whom I could have a good relationship and gather relevant and accurate information. I aim to collect the most important information I need to protect and care for my daughter and I seek out details later when I feel it is necessary and appropriate. However, I have continued to come up empty-handed when searching for a website on cerebral palsy that I felt addressed the heart of what concerned me. With this in mind as well as the limited time people reading this may have, I intend to create a space with a couple of ways of accessing information. I offer parents and caregivers eager to know the facts, and those who are overwhelmed, with a central location to access pertinent information that you may search by subject, as well as our personal experience and how it relates to these topics.
My greatest healing and relief has been through the often brief, yet genuine moments of connection I have had with other special needs parents. I am constantly amazed by the strength, humility, love, and pieces of invaluable information I have learned from parents. There have been times where it was knowing that someone else had successfully made it through to the other side of a challenge I was facing, that offered me the hope I needed.
It is my personal desire to offer you a hand through cyberspace, to know that you really aren’t alone, that someone does understand or can relate to your pain, your joy, and your occasional feelings of discouragement. This can sometimes feel like an isolating journey and I hope to make it less so.
I am not here to say I have all of the answers or that my life is more or less difficult than someone else’s. Some days I feel less than successful in handling the challenges facing me and I have been fortunate to have a wonderful network of support and love around me. It is because of this love and support that I feel the obligation to take on this endeavor and share whatever I can with you in hopes it offers you some healing. Whether it is quick access to information, resources, or a connection to my family, I hope you will find something here that eases your travels on your unique journey.
From our family to yours!