It’s just like you see in the movies …
You are sitting on the other side of a very cluttered desk full of magazine articles, books open to chapters describing symptoms, medical files scattered and stained with spilled coffee. There is a doctor in a white coat, holding a pair of glasses in his hands, leaning forward on his elbows knowing that he is about to deliver news that he shares day after day with families but to you, you are the only person that has ever heard this, ever lived through this moment.
As I type I can feel my heart speed up, swallowing hard and that oh so familiar knot in my stomach begins to tighten. I don’t wish this situation on anyone. Heart wrenching … that is the only word I can use to describe what happens next.
“Cerebral Palsy, by far at the most severe spectrum of the chart.”
But she will be able to live somewhat of a normal life, right? I mean I see people with CP all the time who walk and talk and function and yes it maybe challenging but this will be her life.
This baby will never be able to care for herself. You will never hear her say mama, you will never see her sit or walk or run. She will be a baby in a growing girls body. Her tiny brain just couldn’t handle her early birth. So many brain bleeds that covered every inch of development. The worst part was that there was nothing the doctors could have done, nothing that I could have done or do now. However I had her now was how I would have her for the remainder of her life.
Cerebral palsy (CP) is a general term for a group of permanent, non-progressive movement disorders that cause physical disability, mainly in the areas of body movement. There may also be problems with sensation, depth perception, and communication ability. Difficulty with cognition and epilepsy are found in about one-third of cases. There are subtypes including a type characterized by spasticity, a type characterized by poor coordination, and types which feature both symptoms or neither.
Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth, or after birth up to about age three. About 2% of all cerebral palsy cases are believed to be due to a genetic cause. Cerebral palsy is not an infectious disease and is not contagious. Most cases are diagnosed at a young age rather than during adolescence or adulthood.
Improvements in the care of newborns has helped reduce the number of babies who develop cerebral palsy and increased the survival of those with very low birth weights. There is no cure, with efforts attempting to treat and prevent complications. It occurs in about 2.1 per 1,000 live births.
Cerebral refers to the cerebrum, which is the affected area of the brain. The disorder may often involve connections between the cortex and other parts of the brain such as the cerebellum. The root word “palsy” means “paralysis”. In medicine, this is often used in reference to the paralysis or weakness that often accompanies nerve damage, loss of sensation or muscle disorders involving uncontrollable movements such as trembling or shaking.
So here I sat, as quiet as I could be listening to the doctor explain to me about her future. What future?? He had just told me she would never be able to speak to me, run to me after school, make any decisions for herself. I was handed one pamphlet after another … Physical therapy, occupational therapy, speech therapy. Wheelchair companies, prosthetic companies that would mold her for braces over her lifetime. She will have specialists, okay how many? Neuro, ortho, cardio, an optometrist, a special dentist, a special pediatrician. Nutritionist, ENT’s find a good anesthesiologist because the number of surgeries she will need will be too many to count today.
And just like in the movies he stands up and walks over to me, leans back on that desk and asks me if I have any questions. Why do doctors do that? Yes, no … I can’t even speak at this very moment. What now? Do I just walk out of this office and take Elizabeth home and wait for the day I need all these things? I knew better than that. I knew that this little girl was going to need her mom and I was going to have to be her voice, her biggest fan, her greatest advocate. I had no idea what lied ahead and looking back now I am so glad I didn’t. The innocence of inexperience is what would get me through the easy part of this but I soon found out that Elizabeth and I were in for quite the adventure but not to worry because I was up for the challenge. Elizabeth was going to be given every opportunity to live as normal of a life as her mind and body would allow her to. Only it wasn’t those things that she chose to use. This little girl had a sprit of fight that I have never witnessed from any child or any adult I have met in my lifetime. She found her inner voice that only she can hear and told herself that she was going to tackle every single day with the determination to someday prove all of these doctors and specialists wrong. Today you can see it, you can feel it … it’s a drive to live. I have discovered that she is actually my voice, my biggest fan and greatest advocate. She is her mothers daughter, she is my HERO.