Wouldn’t Change a Thing

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It’s that time of year that military families are all too familiar with; posting season. So like many other military families, we have listed our house and are making preparations for our new relocation. Recently I sat down with our agent and was having some casual conversation; feelings about living in a new area, settling the kids into new schools and the usual “new move” stuff. Then we began speaking about my youngest daughter, Olivia; her having Cerebral Palsy and the benefits to moving closer to a children’s hospital in another province. Both of us being mothers, she reminisced about how fast time passes and how quickly her daughters grew up, but that she had been “so blessed to have healthy children” and “I don’t know how you do it”. We get this sympathized remark often. It’s an honest assumption most people make when finding out that you have a child with medical fragility and various challenges. They see before them a parent who is wearing exhaustion like an old, worn out t-shirt and can’t comprehend what life must be like for them.

Well, let me be the first to tell you, life is really pretty wonderful. The exhaustion sucks and I’ve completely forgotten what eight hours of uninterrupted sleep feels like (and I drink way too much coffee), BUT, every morning I get to walk into my little girl’s bedroom and see her big smile shining back up at me. The previous night of waking every hour, rubbing her back to help calm her dry heaves, helping her through another seizure and (or) rocking her as she cried through pain; it’s gone…vanished with that big, beautiful smile. The smile of a very courageous child who has bravely learned to live with chronic pain.

For as many hospital stays, surgeries, procedures, therapies, there has been an astounding amount of celebrations for taking supported first steps, splashing around in the swimming pool, watching her eyes light up when a butterfly landed on her wheelchair, happy giggles from tummy tickles, experiencing the joy of swinging high on a swing set and so much more! Our lives have been filled with so many blessings! I ask myself everyday, “how did I get so lucky!? What did I do to deserve so much love?”

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I look at my three children and can’t help but feel a great sense of pride.

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Our family is in no way perfect, but really is anyone’s? All families face challenges and all of us celebrate together. That’s part of being a family.

Four Days Of Gastro Woes

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The past few days have been tough on Olivia. Reflux pain, vomiting and many sleepless nights has drained her completely. We never see these flare ups coming and when they do, it could be a day or days before she is over it. Craig and I will take turns, sleeping with her to make sure she doesn’t choke from vomiting in her sleep, positioning her throughout the night to lessen the pain and giving her meds around the clock, hoping to relieve some of the pain she’s feeling.

One of the many linked conditions to Cerebral Palsy is poor digestion. Because CP affects all muscle function and control, the digestive system which is made up of soft muscle tissue is highly affected; leaving Olivia with gastroesophageal reflux disease (GERD) and other issues surrounding her entire digestive system.

It’s during times like this I wish it were possible to switch places with her. It kills me watching her go through this.

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Medications offer little relief; instead excessive vomiting caused by mucus from her nasal passages that pools into her throat and chest, continue this unending vomit cycle. When I see her go through all of this I can’t help but wonder, will she ever know what a pain free day is like?

And yet, despite it all, she still smiles and although completely exhausted, wants to play! She is a child who was born never knowing a life without pain and discomfort. Her tenacious spirit serves her well; pushing through the hellishness of this condition and striving to be a kid.

With everything this little munchkin has endured in her five years, she keeps persevering. Sitting here rocking her in my lap, listening to her finally sleeping peacefully, and tears in my eyes; I know that tomorrow could be a better day. I know that despite these last few difficult, completely exhausting days; it won’t last forever. The medications will eventually begin to work and Olivia will be her vibrant, happy and funny self again, but I do know there will be more days like this that lie ahead. So try as I may to search for positivity in this moment, the harsh reality is Cerebral Palsy will continue to wage war on my daughter. We will make it through this battle, but there will be more to fight in the days, months and years to come.

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.

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.

Olivia’s Lunch Dateā™”

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The highlight of my day, when I’m sitting down reading through Olivia’s daily journal from school, is when I read the sentence, “Nicholas came for lunch today”.

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Everyday, since the first day of school; Olivia’s big brother, Nicholas comes to sit at her table, gives her a fist pump and asks her how her day is going. At the beginning of the school year I had no idea he was doing this, until a teacher mentioned he had been coming everyday to the kindergarten classroom to spend time with her.

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My heart instantly melted and I filled up with pride. Nicholas was so casual in response to my emotions.  He said,  “I just wanted to check up on how her first day in kindergarten was going. She was really happy to see me”.

It’s this stuff you can’t teach your kids. It’s the deep connection and bond they form with their siblings.

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It’s how I know he will always have her back and fight for her when she can’t fight for herself. And it’s how I see the love and compassion he holds for her.

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