This Will Be The Fourth

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I have seen the inside of an OR more times than I’d like to admit. This will be Olivia’s fourth procedure and her fourth time being put to sleep. It’s the fourth time I put on one of those funky OR gowns with the poofy mesh hat and held my baby’s hand while the doctor held a mask over her face to put her to sleep. It’s the fourth time I’ll sit anxiously in the waiting room, outside the recovery area, patiently waiting the surgeon’s arrival to let me know everything went ok.

It never gets easier…

The reality is, this is a part of Olivia’s life. A life living within a body that fails her. A life in which she will always rely on doctors to help “mend” her body.

Today, when we entered the OR,  Olivia remembered. She remembered the awkward table she needed to lay on. She remembered the masked faces that surrounded her and she remembered the uncomfortable mask they were putting on her face. I knew she remembered because those big blue eyes of hers looked up at me in fear, with tears pouring down her face. I took my baby’s hand, got close to her ear and sang her favorite song until she fell asleep.

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To My Mom

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Today’s blog post is dedicated to the woman who taught me to love with all my heart; who taught me to be fearless and to always fight for what I believed in; a woman who taught me compassion and the importance of forgiveness; a woman who I am so proud to call my Mom.

Growing up, my parents divorced when I was very young. It wasn’t easy for my mother to start over, choosing to work full time so she could attend classes at night to better her education. Her determination and courage was driven by a mother’s desire to do the best for her child. There were times that were difficult and I know she sometimes felt guilty for working so hard. What she doesn’t know is the immense amount of respect and appreciation I always had for the sacrifices she made.

Over the years I have had the privilege of watching all of the lives my mother touched. She worked as an early childhood educator for two decades, working with many children, including those with special needs. When my daughter Olivia was diagnosed with Cerebral Palsy, my mother was the first to teach us the importance of advocacy, implementing the importance of early intervention by teaching my husband and I ways to stimulate our child.

After her retirement as an ECE, she would go on to become a foster parent to many children over the years, sharing her love with kids who came from lives of crisis. Some never knowing the love from a mother until they had her in their life.

I credit the mother, the woman and the individual I am today to the woman who is the grandmother to my children, my best friend…my Mom.

I love you Mom. I hope you have the best Mother’s Day possible. You truly are the best mother anyone could ask for.

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How a Sweet Little Boy Made Our Vacation Extra Special

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We are on a mini vacation with our little munchkins. While enjoying the water park yesterday, a young boy made his way across the pool to me and Olivia.

“Hi” he said.
“Hello”, I smiled.
“She is so beautiful. What’s her name?”
Smiling and feeling a bit of an emotional lump in my throat, I reply, “Yes she is. Her name is Olivia.”

I never know what to expect when we go out in public. Stares are a given, especially from adults and older children; but questions are rare and when they come I can never predict if they will be asked sincerely or with ignorance. This sweet little boy’s demeanor was so kind, I almost teared up on the spot.

Olivia immediately smiled back at this sweet little boy.

“Hi Olivia. I bet you are in school?” he asked her. Olivia smiled back letting him know, “yes”.

This little conversation continued a few moments longer between them. He never once brought attention to the obvious, that Olivia didn’t answer one of his questions verbally.

After he swam away I realized this was the first time Olivia’s disability never came into conversation. He didn’t ask or even seem to care that she didn’t speak. He accepted her as she was.

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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.