My Daughter Is Not Special Because She Has Special Needs; She’s Special Because Of Who She Is

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I think one of the challenging aspects of raising a child with special needs is coping with the reality that there are people in their life who will define them by their diagnosis, and not for the person they are inside.

Olivia has Cerebral Palsy and with that comes many physical challenges. As her mother, it’s tough to sometimes watch her struggle, and it breaks my heart watching her go through countless surgeries and procedures, but through it all, she perseveres. Olivia works extremely hard, each and every day, to accomplish things most of us take for granted and she does it with grace, patience…well, sometimes (may I remind you of the red hair), and determination.

But most will never know this side of her. Most will see her as a disabled child, wheelchair bound, who appears to observe the world around her, rather than a defining aspect of it. They will stare awkwardly at her unusual body movements and dismiss her beautiful smile. They will pity the child they see. Most do not realize that lying beneath that blanket of Cerebral Palsy is a child rich in wonder; a child with purpose and ability, a child in which words will never leave her mouth, yet she will speak deeply to our hearts and teach us to listen with our souls. This child, my child, has been through tremendous struggles, but has found strength through it all.

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who loves to have fun and play….

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an animal lover and green thumb at heart…

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a music enthusiast and craft extrordinaire….

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a diva…

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a child who has overcome so many odds and continues to astound us with her progress …

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Many will never understand the battles special needs families fights daily to achieve equality for their children. Our children are not broken. They are not without purpose. They are beautifully different and just as uniquely important. What makes them special is not what they have, it’s who they are. They are teachers of hope, love, determination, equality and perseverance. They are people who deserve to be treated as people and nothing less.

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Happy Birthday Super girl!

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In six days Olivia will be five years old.  Seeing those words typed out in front of me is surreal because five years ago we didn’t know if our daughter would live.

Fast forward to now and my goodness….

It’s been an emotional ride.

Recently I had a conversation with another mom about Halloween costumes for our kids. She asked who Olivia wanted to be; with a huge smile, I replied “Supergirl”. (I’m not gonna lie, I’m going to cry when she puts on that costume.) Everyday of her life, she has been “Supergirl” in my eyes.

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Everyday has been a blessing. Now, I’m not saying we have a picture perfect life; no one does. I’m saying each day from the moment Olivia took her first breath has been a blessing. From the seizures, surgeries, hospital stays (too many to count), hours and hours of therapy, countless doctors appointments and through it all; she remained courageous and strong. That’s a blessing.

When you don’t know how long you will have with your child, each second, hour and day are blessings.

When you are told your child has no future and the odds are stacked against them….each day you prove this to be untrue, is a blessing.

When your child proves to the world (because c’mon, special needs kids have to earn their place in this “typical” world), “I Can”…that’s a god damn blessing.

When your child takes their first steps without you holding on, looks up to you with an enormous smile that screams “I did it!”…..that’s a BLESSING!

So next Saturday as I light five candles on Olivia’s birthday cake, I’ll be also counting my blessings and feeling ever so thankful that we get to celebrate our Supergirl.

What Will Tomorrow Bring?

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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

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Why October Is Important To Me?

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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.

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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!

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

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

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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.

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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.

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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?