A Cerebral Palsy Diagnosis
Lindsey Hughey
I am a mom to a wonderful 3 year old girl with CP and Epilepsy. She is our only child right now, so she is our world.
Cerebral palsy (CP) is something I knew existed but had only heard about in passing until our daughter suffered from brain damage at two weeks old.
The result, a CP diagnosis when she turned one along with several other diagnoses.
My daughter is classified as having quadriplegic CP. And yes, it basically means what it sounds like; her entire body is affected in some way.
It is not a muscle issue, meaning there is nothing wrong with her muscles.
The problem is the brain is sending the wrong information to the muscles.
And because of that, the muscles can’t do their jobs correctly.
The hardest part of an initial CP diagnosis is that it covers such a vast variety of things. People can be minimally affected, having only a limp in their gait.
Or they can be totally affected like my daughter in which every area of the body is limited in mobility.
For her, she struggles with everything from sitting, walking and talking to pickings up a simple object off a table.
People with CP can have low muscle tone and their limbs almost look limp. Or they can have high muscle tone and their limbs look contracted all the time.
Then there is my daughter who falls somewhere in the middle with varying muscle tone.
Sometimes she looks like she can’t bear her own weight. At other times, she can stand up with support.
You can put her in a sitting position, and she will just fall over. But you give her a little support and sometimes she will sit relatively normal.
When you are given a CP diagnosis, well that is really all you have in the beginning.
Many of our doctors told us that it is up to our daughter to show us how her CP would affect her life long term.
It wasn’t what we wanted to hear at the time.
We wanted real answers. But you don’t get real answers with CP.
The only thing truly known to help people with CP is therapies. So, ever since we received the diagnosis, she has seen every type of therapist you can imagine.
And even now she still has 2 physical therapists, 2 speech therapists, an occupational therapist and a music therapist. She also attends riding therapy on the weekends.
These are the people, who over the years, have made things possible for our daughter that were otherwise thought to be unachievable.
Because of these therapists, a little girl with little hope of ever walking is taking independent steps in her gait trainer.
The same little girl who could not hold on to anything at 1-year-old, is grasping toys and bringing them to the midline.
Because of these people who refuse to give up on her, a little girl who was released from the hospital with a g-tube for feeding is now able to eat some.
She is also jabbering and talking some and she is using a complicated speech device to show off just how intelligent she really is.
The CP diagnosis stinks. When you are handed that diagnosis, at the very least, and if you are lucky, there is a minimal limitation you will have to deal with.
And for so many people it means a lot of nevers.
But it isn’t a death sentence. It is an obstacle to climb in life.
As parents, we want to remove obstacles from our children’s paths because it is hard to watch them struggle. But overcoming life’s obstacles is where real strength and character is built.
People with CP are some of the most amazing individuals you will ever have the chance to meet. I know because I’m raising one, and she inspires every day.