It’s More Than Just Wearing Green

Standard

Why are awareness days so important? What makes them so special? Why do we put the spotlight on a particular group of people?

I’ll tell you why…

The only way to successfully eliminate ignorance, discrimination and inequality is through education. Awareness days are opportunities to discuss, teach and learn about others who may look, speak, walk, or learn differently from us. As a society, we have been conditioned to take notice of other people’s differences. For individuals like my daughter, having these differences cause her to stand out; sometimes generating whispers, stares, or abrupt spontaneous questions (often asked nervously).

Awareness days like World Cerebral Palsy Awareness or National Cerebral Palsy Awareness Day, allows us to start the conversation, eliminating the so called “elephant in the room”. It’s an opportunity to speak about what CP is and how there are many people who have it, that are living very fulfilling lives, participating in various aspects of society. It gives us the opportunity to speak about various types of equipment you may see someone with CP using, like a wheelchair; and understand that this device assists with the individual’s quality of life.

Awareness days can inspire us to invent or develop better devices and services to assist and improve the life of individuals living with CP. These days encourage others to look beyond the limitations or challenges and see the person.

image

In this day and age of fully integrated classrooms and full inclusion in recreational activities; awareness days are absolutely essential, especially for school age children because they are the future generation. It’s not just about wearing green or whatever color is associated with a specific ribbon of an awareness day, it’s about WHY are we doing this? It’s about promoting equality and understanding one another. Fear is such a natural feeling that can occur when we are faced with something or someone that appears very different from us. Learning about these differences and understanding that we really aren’t that different, helps to strengthen bonds and allow relationships to develop easier. By eliminating the boundaries we create equality.

So the next time you hear about an event promoting World CP Awareness or World Down Syndrome Day or any day set aside to educate, celebrate and promote equality; take a few minutes to stop, listen and learn. At the end of the day, all anyone wants is to be seen for themselves, not judged by what they appear to be.

image

Advertisements

What Will Tomorrow Bring?

Standard

I think the hardest thing about being a parent is accepting no matter how badly you want to, you will never be able to give your child everything they need.

I’ve known this reality since the day of Olivia’s diagnosis, but I never truly accepted it. I guess somewhat, in a distant part of my mind, denial became my safety net.  By not fully accepting the diagnosis, maybe cerebral palsy wouldn’t affect her to the capacity predicted. 

I know it sounds completely crazy, but as a parent, how do you wholeheartedly accept that your child will have limitations for the rest of their life? You might put your best face forward and learn everything there is to know about the future possibilities. You attend all the therapy appointments, physician consults, support meetings, etc, etc, etc. You become an advocate, bringing awareness and blogging about raising a child with cerebral palsy. You do the absolute best, that you possibly can; to understand everything there is to know about this incredibly selfish condition, that has robbed your child of their independence.

It’s been a bit of a high wire act finding the balance between all of it. In the end, hope is all you have left.

Hope is an incredible gift. It has the ability to inspire and fulfill the sometimes empty feelings of despair. It’s not fueling your mind of miraculous occurrences because that would be setting yourself up for a big let down. Hope is allowing yourself to believe that tomorrow has possibility. Tomorrow a cure could be found. Tomorrow a technological breakthrough could discover a way to give my daughter her legs back. Tomorrow, maybe just maybe, cerebral palsy won’t touch another family.

#hopefaithlovecerebralpalsyawareness

image

Why October Is Important To Me?

Standard

October is a special month in our home. It is the month our youngest daughter was born and it has become a month in which we spread awareness about a condition that has impacted her life….and ours.

Olivia was born a few days before Halloween. It was to be a “typical” scheduled cesarean section, but nothing typical came of that day.

Moments before Olivia’s arrival, something occurred. We may never know what that was, but whatever it was lead to our baby girl fighting for her life.

Hypoxic Ischemic Encephalopathy…a phrase that we would soon become all too familiar with; means a loss of blood and oxygen to the brain.

image

Five years ago, the life we dreamt for our child changed in an instant. Olivia suffered severe brain damage and was diagnosed with Cerebral Palsy, a condition that affects muscle tone and control. We didn’t know anything about CP and really hadn’t any idea how it would impact Olivia’s future.  Doctors were quick to fill in those blanks with images of a child who would struggle, have little capacity of comprehension for the world around her, and become a stress on our life.

They were so wrong….

Olivia flourished!

image

She began smiling and her eyes sparkled with love and joy as if a spark was ignited within her.

image

Olivia persevered. Her strength and willingness to never give up was inspirational. The word “can’t” didn’t exist in her vocabulary.

image

When you focus on the day at hand, never looking ahead; miracles begin to occur. I will NEVER forget the day I witnessed my daughter’s legs and feet take their first steps.

image

Olivia has faced and overcome her fair share of struggles, but throughout it all she maintained her courage. These days are not done. They come and go, but we fight through them together.  Always being hopeful of what tomorrow may bring.

image

image

image

image

Five years ago I gave birth to a red headed, cherub cheeked spitfire who happens to have Cerebral Palsy. CP has NEVER defined who she is. Olivia is our daughter. She is a sister, a friend, a sometimes silly-giggly little girl. She has enriched our lives with love. She has taught me much throughout these five years. The lesson that resonates the loudest is today is all that matters. Yesterday is gone, there is nothing you can do to change it. Tomorrow is a lifetime away, but today….today a miracle can happen. Have faith, love deep and listen with an open heart.

This month, designated as World Cerebral Palsy Awareness; listen with your heart and open your minds. Individuals with CP are actors, writers, teachers, athletes, students, children, and adults and so much more! I’ll be wearing my green on October 7, will you?

Getting The Message

Standard

Recently I was fortunate to have the opportunity to speak at my childrens’ school about Cerebral Palsy and why days like World CP Day are important.

From the day of Olivia’s diagnosis,  I knew we needed to spread awareness about this condition.  I’ll admit, until Olivia was diagnosed, I had not known a single piece of information regarding Cerebral Palsy. After her diagnosis I did research online, raided my local library for books on CP, and asked every possible question I could think to her pediatric rehabilitation team.  There were no parent support groups available in my area,  had there been, I would have frequented them…believe me, I was craving to know every aspect of what Cerebral Palsy meant.

So now, almost four years later, you can imagine what a surreal, yet honorable experience it was to educate these young little minds on my daughter’s disability. I explained to them how CP can be caused by lack of blood and oxygen to the brain, causing brain damage and that this damage leads to limited muscle control and function. It is not a disease, and to this date, there is no cure.

I appreciated their attentiveness and their wanting to learn more about their friend, Olivia.  I spoke to them how CP is a large part of her life, however it does not define her as an individual.

I explained that Olivia is very much like all of them.  She has the want and need for acceptance, the desire to be respected, and the promise to be seen for her ability!

This is why days like World CP Day are important.  They challenge us to look for opportunity to continue the message, to spread the word.  It is evident the impact on awareness, how it leads to change and development, whether it be interest in medical research to discover a cure for CP or to invent new and improved devices for individuals affected by Cerebral Palsy. Awareness promotes progress!

When we educate the young people of today, we are breathing hope for success into tomorrow.