Appreciation, gratitude, thankfulness... these are words I love and words I try to live by. They are not typically words that come to mind when I think about my daughter's cerebral palsy. Although I’m not grateful for the pain, discomfort and frustration associated with her CP, I have to admit that some of the positive byproducts are perseverance, advocacy skills and ingenuity.
As I reflect on our family’s journey thus far with CP, I am incredibly thankful that we knew from day one that our daughter was at-risk for developing CP. That knowledge helped empower us to seek early intervention services swiftly upon our daughter's discharge from the NICU. We were able to start in-home physical and occupational therapy about two weeks after our daughter came home, and I have no doubt that has greatly improved her cognitive and motor outcomes.
I am also deeply appreciative of our daughter's neonatologist in the NICU follow-up clinic. Taryn was diagnosed with CP at 12 months and that early identification enabled us to accept the realities of our daughter's development, set proactive goals, make the most of our daughter's neuroplasticity, access research/support funds that otherwise would have been unavailable to us. Our daughter's neonatologist broke the news to us in a caring and compassionate manner which is unfortunately not the norm for some parents. More importantly, she also gave us a ten-minute crash course regarding what we might encounter, how to advocate for our daughter, and how to access powerful and effective early interventions.
My husband had an immediate emotional response, and I was desperately trying to stay as calm as possible so I could absorb what our daughter's neonatologist was saying to us. I have replayed that conversation in my head many times. Although some of it was difficult to hear, it set the stage for us to support and encourage our daughter in the best ways possible. I am so grateful for her candor.
Finally, I am appreciative of research-based interventions supported by reputable organizations such as the National Institute of Health and the Cerebral Palsy Foundation. Participation in these studies has helped our daughter make progress that has shocked most of the professionals with whom she works with. I feel confident one of these studies has given my daughter hugely improved sensation and functionality in her left hand.
Although we'd certainly never wish for CP, there is no doubt that CP has helped make our daughter strong. She's a determined overcomer and knows how to work hard (even at the age of three)! As her parents, CP has turned us into massive advocates for early intervention and research. It has given us an appreciation we may not have otherwise had for the incredible ability of the young brain to forge new and healthy neural pathways to maximize function. We have learned so much over three short years. For all of this and for all of the amazing professionals who helped us along the way, we are incredibly grateful!
This holiday season, I hope you’ll support the Cerebral Palsy Foundation’s Early Detection Initiative so they can help more families receive an early diagnosis and get them the therapies and interventions when it matters most.