The month of March isn't all shamrocks and green beer (although my Irish roots would like to think so)! It is also Cerebral Palsy (CP) Awareness Month. CP is an important piece of Conner's journey for many reasons.
I am sure everyone has heard of Cerebral Palsy, but what exactly is it? CP is considered a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development. Cerebral Palsy primarily affects body movement and muscle coordination.
Being born at 24 weeks, Conner was at an extremely high risk to develop CP. Furthermore, Conner has Periventricular Leukomalacia (PVL) which is a form of brain damage. Read more about PVL here. In addition to movement challenges, people with CP can have many other health concerns including: impaired vision or hearing, unable to talk and epilepsy – just to name a few.
I have said it many times before and I will probably always say it - I NEVER want to hear "Cerebral Palsy" come out of a doctor's mouth when referring to Conner. I knew it was a likely possibility and that eventually I would have to face it. Even with all of my mental preparation, my eyes filled with tears as those two words were spoken by Conner's movement disorder specialist. I imagine that telling a parent their child has CP never gets easy and I will always appreciate the way he kindly delivered the news. He even asked our permission to give Conner the official CP diagnosis.
Cerebral Palsy is a touchy subject for many. Yes, Conner has CP, but receiving the diagnosis didn't change him – he is still the same sweet little boy he’s always been. Being diagnosed with CP is actually helpful for Conner and many other kiddos like him as it can open up a world of new opportunities. Once diagnosed, it can provide more therapy and treatment options that the child will greatly benefit from. If I am being honest, having that diagnosis will lessen the fights one may have with insurance and it may provide additional opportunities for government assistance (i.e. secondary insurance, reimbursement funds, etc.) We are SO very fortunate in that we have very few struggles with insurance (as of now), and that is hard to believe considering Conner's medical bills are well into the $2 million range...and he is only two years old!
I often find myself wishing I knew some things sooner. It might not always change decisions I've made for Conner, but I think it would have helped me cope with everything going on. The biggest thing I think of with CP is simple - a CP diagnosis does not suddenly turn your child into someone different. It doesn't suddenly limit their abilities to move and it certainly doesn't limit what they are able to achieve as a person. A CP diagnosis should be seen as a tool – a tool that will help your child gain access to services that they otherwise might miss out on without the diagnosis. It can help them to reach their maximum potential and it may get them there sooner.
Don’t be afraid of a CP diagnosis. It is a scary term and it insinuates even scarier circumstances. At the end of the day, it is to your child’s advantage.
