One Helluva Week…

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Olivia has been experiencing full body spasms and severe reflux episodes this week. My tears have dried, but my heart is still carrying heaviness. Watching your child battle chronic pain is the absolute most unimaginable helplessness a parent could ever experience.

This week, I have held my nine year old child in my arms, gently rocking her, as she sobbed. As her eyes searched mine in a desperate plea to alleviate her pain, I broke and sobbed because the medication I gave could not numb the pain, the midnight stretching and massaging of her tightened muscles would not sooth, nor did the tender Momma cuddles bring reprieve. I cried harder as her little body wretched with each agonizing burst, and there was nothing I could do to soothe her pain.

My beautiful sunshine girl with a smile that could take your breath away, lives with chronic pain every single day as a result of Cerebral Palsy. Most days we can help her concur it, but days like this last week, these days the pain overcomes our brave fighter until she passes out. These are the days I hold her wrapped in my arms, her forehead wet and cheeks flushed from fighting through the pain. Her eyes close for a moment, as she folds in towards my chest and I wipe her dampened bangs from her eyes. There is little I can do during these episodes, but I know when they end, in my arms is where she wants to be.

Exhausted, emotionally defeated, and utterly shattered. These are the days I question why my little girl must endure so much. From the moment she breathed her first breath, Olivia has lived a life with chronic pain. Many who know her, see a child with a bright, charismatic personality and a smile that can take your breath away; and all of this is true, however, she also endures more than any of us could ever understand.

As I type this, I still sit at her bedside watching her sleep. Finally, her body is calm and hopefully will rest. She is drained. I’m drained. I know I should go to bed, but my heart needs to be near her longer. As she sleeps peacefully (for now), I cherish each calm moment she can dream. I pray that tomorrow will grant her grace.

It’s More Than Just Wearing Green

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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.

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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.

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I Am Proud To Be A CP Momma

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If you told me five years ago I would have the ability to dress, change and clean g-tubes, be trained in specific therapeutic stretches, master the in’s and out’s of a substantial amount of adapted equipment, and be well versed in “doctor talk”; I most certainly would never believe you.

I have learned this, and so much more, from becoming a Momma to child with Cerebral Palsy.

What does being a CP Momma (or Daddy) mean? It means you are part of a journey you never seen yourself taking, but soon realized you could never imagine yourself anywhere else. It means you know the definitions of hypertonic and hypotonic tone and how it applies to your child. It means struggling to watch your child overcome so many obstacles, yet continuing to be their biggest cheerleaders. It means using your voice to advocate awareness, seek equality, and fight for funding to get the specialized equipment your child desperately needs. It means you learned early on, that giving up was never an option and holding onto hope was the only option. It also means you’ve fallen apart when days seemed too much to take, cried in silence and felt anger and frustration; picked yourself up, dried your tears and kept going.

You are living a life no one outside of it will ever truly understand. Only those that can, are other CP Parents. They become your tribe and together you become warriors fighting this battle called Cerebral Palsy.

Our children become our heroes. We get inspiration from their courage. When we witness our child overcome challenges and watch that child flourish in ways never thought possible, that is what strengthens us to keep moving forward. They need our strength, just as much as we need their courage. Together we are a team trying to win this fight!

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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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How I Approached A Co-worker About Using The “R” Word

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We are all at fault of the occasional slip of the tongue. You know what I mean, the accidental swear word that slips out in front of your kids or the sometimes awkward “foot in the mouth” incident. We are human and we all make mistakes. But what if the word we are saying, holds a stigma of damaged, broken, delay and downright negativity surrounding being different.

The word retarded is used so casually by some in day to day conversation. You hear people saying it in reference to foolish behavior, music, television, etc., you name it, and I bet you have heard it used in many different contexts. 

Let me tell you where it was derived from. It came about as a means of defining an individual’s mental disability. It’s a word, in my opinion, that holds a great deal of disrespect.

I am a mother to a child with severe special needs and have had the “R” word said to me in reference to my daughter’s disability. I will never forget that moment, it will forever be burned into my memory. Thinking about it still turns my stomach into knots, but I have taken away a positive approach to educate anyone I hear using it.  This is exactly how I handled a co-worker who used it in a conversation with me.

I calmly interjected our conversation with, “do you know my daughter Olivia has Cerebral Palsy?” This was completely off topic, but I wanted her undivided attention. I continued to share with her our story of a lady who asked me, “is your daughter retarded?”. I explained how that word, the “R” word, holds so much disdain and disrespect and I would appreciate if she refrained from using it.

Never did I witness someone so remorseful. She felt terrible and apologized perfusly. I told her there were no hard feelings, but appreciated her apology. By sharing our story, my hope is it will forever be tied, in her mind to that word. I hope every time the “R” word pops into her mind, an image of my daughter follows. She will see her beautiful face, bright smile and loving eyes and remember how this one word disrespects, insults and holds a great deal of ugliness.

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And I hope every person who reads this post will learn from it, make a positive move forward, and spread the word to end the word! Let’s be change folks! Look at that beautiful face. Doesn’t she deserve to live in a world where being different shouldn’t mean being delayed, damaged or broken? Because each time you use the “R” word, whether or not you realize it, you are championing that notion.

It’s Not So Black & White

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In the four and a half years that I’ve been Olivia’s Momma, I’ve had the privilege of viewing life from any entirely new perspective; in which I have experienced great joy, been taught as long as you have love, you have everything you need, and I’ve also been witness to the harsh reality of stigma surrounding special needs in the form of ignorant comments, long uncomfortable stares, and sorrow filled glances.

Olivia having Cerebral Palsy doesn’t define who she is, but unfortunately most see her as a child in a wheelchair with awkward movements, who sits quietly, observing the world around her.

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But life isn’t so black and white….even the life of a special needs child.

Olivia is a four year old who loves watching her favorite show The Wiggles, getting kisses from her puppy…

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Being silly with her Momma…

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And even big giggles when Momma blows raspberries on her cheek!

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She is inquisitive with the world around her..

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She loves spending time playing and having fun…

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She is creative…

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And loves to fish…

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So you can see, my daughter doesn’t need pity. She is full of love, happiness and joy, as every child should be. Never underestimate the ability, strength and perseverance of a person with special needs.

Becoming a parent to a child with special needs is like adding color to life that was in black and white.

Things Don’t Always Go As We Had Planned

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In life, things don’t always go as we had planned; sometimes the Universe steps in, creates a wind of chaos and then leaves us to sort through the debris. That’s exactly how it felt five years ago, when Olivia was born.

Olivia was our third child. My previous children were all delivered via cesarean section, so it was recommended by my doctor to schedule this delivery as a c-section. The date for the OR was booked and we had a plan in place. A day that was so particularly planned changed into something no one seemed able to predict.

Our precious baby went into fetal distress prior to delivery. I was rushed into the OR and she was delivered nonresponsive. Several agonizing moments slowly slipped by as I lay on the operating table watching several doctors and OR nurses trying desperately to resuscitate our baby girl. I couldn’t help but feel like I was in a living nightmare, everyone and everything around me seemed to be moving in slow motion; my doctor speaking, but his words fell silent upon me. I desperately wanted to hear her cry or something to let me know she was alright. When I looked at my husband, the color had disappeared from his face and fear filled his eyes.

This wasn’t how it was supposed to be!

Our plan changed that day. On October 28, 2010 our daughter Olivia, weighing 9 lbs. 3 ounces had suffered brain damage due to hypoxic ischemic encephalopathy. Olivia had lost blood and oxygen to the brain and would spend the next 14 days in the neonatal intensive care unit. Seven months later she would be diagnosed with Spastic Quadriplegic Cerebral Palsy, a condition that affects muscle function and control.

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Olivia is now five years old and it has taken us the majority of those years to sort through the debris the Universe brought. In the beginning, we carried a heavy amount of grief, anger and feelings of isolation; sorting through it took time. We loved and adored Olivia so much. She was the sunshine that brought us through the storm.

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No one is ever prepared to be the parent to a child with special needs and it’s not something you can teach. It is a relationship, in which many times, the child becomes the teacher. From Olivia I have learned patience, to slow down and value today. So much can happen and can be learned in a day. Good or bad, a day can change your life. She has taught me to have hope. We never know what tomorrow will bring, but whatever comes, I am hopeful that tomorrow brings promise. I smile so much more because of her! It is impossible to stay in a funk when Olivia is in the room. My favorite moment of the day is walking into her room to say good morning. Those big blue eyes widen and her face fills with the most gorgeous, loving smile. There is no better way to start the day.

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Something else I’ve learned, the storms of life often produce the most beautiful rainbows.

Let’s Celebrate Being Different!

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As a parent to child with special needs, days set aside to celebrate our children’s differences and to spread awareness are days important and close to my heart.  This month there are two such days; World Down Syndrome Awareness  (March 21), and Cerebral Palsy Awareness Day (March 25).

Four years ago I would meet one of the happiest, charming, and loving little girls, whose smile was like sunshine bursting through the clouds, spreading warmth to  everyone around her. Her name is Emma and Emma has Down Syndrome. For those of you that are unfamiliar with Down Syndrome, it is caused by a genetic occurrence that produces an extra chromosome.  Emma would form a kindred bond with my daughter Olivia,  who as most know, has Spastic Quadriplegic Cerebral Palsy. The first time Emma laid eyes on Olivia,  she walked over, bent down because Olivia was seated in her wheelchair,  and gave her the gentlest kiss on the forehead. No words were spoken, both girls being nonverbal, but the emotions and love passed between them was well heard.

Love knows no boundaries, and such love is what we all should focus on. Differences aside, we are all the same beneath our skin. Days like World Down Syndrome Day and Cerebral Palsy Awareness helps to break down those boundaries, teaching everyone that different is beautiful, it is love, it is acceptance, it is wonderful.

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