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.

I Am Olivia

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For eight years we have worked very hard at translating Olivia’s non-verbal queues (a smile might mean a “yes” or “I’m happy”). Sometimes we got it right, other times we didn’t; leaving both of us tired and frustrated. Temper fits and meltdowns were a common occurrence for Olivia; could you really blame her? My heart broke when I “guessed” wrong (because let’s be honest, it was just that…a best guess), and I would feel as if I failed her. But then a beautiful thing happened, we learned eye gaze communication.

When Olivia was two years old, I began to notice that she would look towards specific objects or people when she understood the name or word spoken. I began to ask her, “Olivia can you show Mommy where the clock is?” or “Where is Daddy?” She would then shift her eye gaze towards our clock hung on the wall or her father sitting in the chair. I proceeded to ask her about other things and when she showed me correctly, I would clap and celebrate her accomplishment. Finally we were building a bridge of communication and it was wonderful!

Olivia advanced her communication skills to low tech devices like eye gaze boards and then eventually onto partner assisted scanning using PODD (Pragmatic Organisation Dynamic Display), an example of augmentative communication using a book or device that displays a series of symbols and words. A great example of how to correctly model PODD is shown by Karen Owens of We Speak PODD. 

PODD was a great stepping stone for communication technology. Olivia was able to improve her ability of controlling her eye gaze, a difficult task that can be quite fatiguing, but necessary when utilising devices like the Tobii Dynavox Eye Mobil Plus. It is here where Olivia has really begun to expand her desire and ability to communicate. She is truly finding her voice for the first time!

Today we use a combination of low tech and high tech communication. I like to think of it as an adapted version of how we all communicate on a day-to-day basis. We each tend to use our bodies to convey messages we want others to receive. For Olivia, her body language is her facial expressions combined with her communication software and device, her voice. It has been such an amazing transformation to watch her grow both in mind and spirit. She is a much happier child and her relationships with both of her siblings has grown so much stronger. She enjoys razzing them both when the opportunity presents itself (youngest sibling = kinda her job…lol) and I never stop getting tired of her “Hi Mom. I love you” messages. I have waited eight years to hear those words and each time they still bring a tear to my eye.

“I am Olivia.”
It makes me so proud when she chooses to use this sentence because it is a profound three word statement that is more than just a statement of her name, it is the building blocks of individual advocacy and the opportunity to personalize her individual abilities. . The sky is the limit and we have just embarked upon the cusp of the horizon. Look out world, my baby has found her voice and she ain’t afraid to use it!

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Number Eight: This Is Our Normal

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Today marked Olivia’s eighth surgical procedure. This was the eighth time I put on a puffy, blue hair net paired up with an equally unfashionable light, blue Johnny shirt; all necessary for inside the OR. This was the eighth time I carried my little girl into an operating room, surrounded by strange masked faces and numerous medical machines (beeping and making strange noises), where I place her down onto a narrow operating table.

It was the eighth time I watched the fear in Olivia’s eyes as they stick, poke and tape foreign objects to her, all the while listening to her medical team attempt to explain to her the purpose of each. As I hold her hand and tell her, “you’re ok, Mommy’s here” my heart is quietly shattering. In my mind, I tell myself this is necessary, when in reality I hate seeing her go through any of this and am doing everything to not break down and bawl. Then I get in close, once the mask goes over her face, and I sing to her. I watch her little eyes become heavy, falling deeply into a medicated slumber. I kiss her head, say a silent prayer for “please God, protect my baby and give her strength.”

This has become a part of our normal. Doctors appointments, hours upon hours of physiotherapy and occupational therapy, and thousands of dollars spent on equipment needed to assist in muscle development, posture support and mobility. Countless sleepless nights spent trying alleviate pain brought on by muscle spasms and surgical procedures required to lengthen hamstrings, release hip abductors, heal chords and to assist in dietary improvement.

Olivia’s little body has been tattooed with forever reminders of each and every procedure. Each scar she carries, is representative of a battle she has fought. With each procedure she endures, strength is achieved. I call her my warrior for a reason. Cerebral Palsy has provided her with a body broken and riddled with pain and discomfort, but through all of it, Olivia has persevered. She has fought and pushed through each of these battles with a courageous spirit.

Sometimes being strong, means feeling the pain, but not letting it consume you. Sometimes, even no matter how strong you are, the pain breaks you. This is the fine line we walk….every….single…day. The truth is, this may be our normal, but I’ll never get use to it. I’m her Momma and she’s my baby, and our babies (no matter their age), should never have to endure pain; of any kind.

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Epilepsy Wasn’t A Term In Our Vocabulary

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Six months ago, epilepsy wasn’t a term we used in our vocabulary. Olivia had had one serious seizure two years ago, but nothing since then….or so we thought.

When you have a child with a complex medical condition, sometimes symptoms get overlooked because you think you are witnessing a symptom already associated with a diagnosed condition. Very disheartening as a parent to realize this wasn’t the case.

Olivia’s seizures went undiagnosed for about a year. We began to notice a pattern in her sleeping behaviour; she would awake the same time every night with episodes of vomiting. We originally took this for reflux. Then we began seeing behaviours when Olivia would drift off to sleep. These behaviours often appeared as twitching, arching, repetitive sounds, periods of semi-consciousness, and crying.

After several EEGs, one sleep deprivation and a video EEG, Olivia was officially diagnosed as having Epilepsy; a chronic seizure disorder usually associated with a neurological condition. Olivia already having Cerebral Palsy put her at a higher risk of developing Epilepsy.

So…the last six months have been a bit of a blur to say the least. I’ve joined several Epilepsy forums, trying my best to understand what my daughter is feeling prior, during and after the seizure has passed. Olivia is nonverbal so it is impossible for her to communicate what her body is experiencing, so finding the right medication to control her seizures was essential. I am happy to say we have!

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Throughout these past few months, I have learned so much; like for instance, seizures suck…BIG TIME! It never gets easier seeing your child’s body twitch, stiffen or move uncontrollably. I honestly hold my breath every time Olivia has a seizure. The dangers they present are a terrifying reality and an important reason as to why awareness and research are so important in the field of Epilepsy.

Epilepsy is now part of our life. Olivia’s seizures are now controlled, but we understand eventhough controlled, she can still have the occasional incident especially when she’s sick. So today, if you see someone wearing a purple ribbon, know it’s in support of Epilepsy Awareness.

The Struggle Is Real

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Although I work hard to focus on “one day at a time”, I find myself searching down the unknown path of what the future will hold. These last few weeks have catapulted my thoughts into a million different directions and feel as though I am on an emotional cusp of breaking. Olivia has been having greater difficulty sitting willingly in her wheelchair. My husband and I have wracked our brains and have covered all of the possibilities related to comfort, support, and posture. We had originally thought her displeasure was caused from pain (and still aren’t entirely certain it’s not), because Cerebral Palsy causes her to have daily pain to some extent; it’s also possible this could be behavioral. But how can we be entirely sure? This is our dilemma.

This is the stuff that really sucks. The stuff, that in most situations, could be cleared up with a conversation or a few poignant questions? Is your seat uncomfortable sweetheart? Are you feeling pain today? Are you frustrated with sitting too often? But when you have a 5 year old nonverbal child who is still developing reliable eye gaze communication skills, and when thoroughly pissed off refuses to use what she knows; instead chooses to scream her hardest and sky rocket into a full on meltdown, everything goes sideways fast.

These are the times that break me down, ugly crying because I know as hard as I try, I will never fully understand my child’s needs. The best I will ever do is a best guess and that is a hard pill to swallow.

As emotionally draining these last few weeks have been, the small wins are what have gotten me through. Today we made it the entire way home from school, without me having to carry Olivia any part of the way. What did this tell me? Well for one, she probably wasn’t experiencing pain (and I highlight “probably” because thats my best guess) and/or she was in a great mood! That was a BIG win! I immediately praised her for being such a “big girl for sitting nicely”. She replied with a smile. Was she choosing to sit? I have no idea, but that was the hand I was going to play. It seemed to work, she felt proud, and I felt good (somewhat relieved) for guessing right.

To me, parenting a child with special needs is finding the steady balance everyday, grasping tightly onto hope and struggling to keep the fears at bay. It’s understanding that we never truly can predict what the future will hold and convince ourselves to stop trying. It’s reminding myself/ourselves that I am/we are doing the best we can.

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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.

An Army Of Butterflies

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The sun couldn’t have shone brighter today as friends, family and school community came together in droves to participate in our local Child Development Centre’s annual race fundraiser. As special as this event was, it was even that much more remarkable seeing a community come together to remember and honor an extraordinary little girl.

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Each one of our Team AOS shirts was decorated with a purple butterfly over our hearts. This was in honor of a beautiful little redhead with a smile as breathtaking as sunshine that moved an entire community to honor her memory through simple, yet extraordinary random acts of kindness and we called it “Bryleigh’s Butterflies”.

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Bryleigh holds an incredibly important space in my heart. She and Olivia were bestfriends that shared more in common than most. Both beautiful ginger girls shared big, warm smiles and the ability to gravitate others to them just by being their adorable, sweet selves and both warriors, taking on the daily struggles and challenges Cerebral Palsy brought to them….but you’d never know it because these girls loved to laugh!

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The bond they shared was one spoken beyond words. Witnessing them interact and communicate in their own way was a truly special moment. I know Olivia misses Bryleigh everyday. I see it in her eyes when she enters the classroom they once shared. I also see it when she is surrounded by the friends they once played with together. She misses her in her own way, as we all do. Participating in “Bryleigh’s Butterflies” brings us all a little closer to Bryleigh once again.

So if it so happens that you receive a purple butterfly along with some act of random kindness, you can be sure it was given to you to put a smile upon your face. I once read that a single smile can change the world, well Bryleigh changed all of ours for the better. Think of each purple butterfly as a smile from Bryleigh, a beautiful gift that will forever impact your life.

“If there ever comes a day when we can’t be together, keep me in your heart and I’ll stay there forever”~Winnie the Pooh

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Wonderful Wednesday

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We’ve been weathering through a few storms these last few weeks. Discovering that Olivia has epilepsy, our basement flooding, a serious lack of sleep, disputing a suspension from school notice issued through our public health office stating Olivia is behind on a particular vaccine (which she isn’t), and hitting a few bumps in the road with Olivia’s rehabilitation team; had me rock bottom, flat on my back, burnt out.

The first Wednesday of every month is a glorious day! This is when our special needs parents support group meets. I couldn’t have been more thankful for the arrival of this Wednesday. Being surrounded by others who get what you’re going through evokes a feeling of calm, peace and understanding. Sure not all of us share the exact same experiences, but to an extent we’ve each walked in the footsteps of the same path. It’s this, in its entirety, that makes support group so great.

The problems I had going into the group were not miraculously solved. That’s not what the group is for. What I get from going to our group, is a sense of peace. Talking, connecting and listening to other special needs parents share their experiences, helps me to remember that although this journey can be extremely difficult and challenging, I am not alone. Just the fact that they get it, calms my mind and I can readjust my focus. I feel a rejuvenation and walk away empowered, ready to face the hurdles that lie ahead.

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Taking A Break Before Having A Breakdown

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Too many times special needs parents forget to take care of themselves. I know because I’m one of you. We are so busy focused on our child’s needs that our own needs come in dead last. We struggle with fatigue, ridiculous amounts of stress, and at times are battling feelings of depression. We become consumed by our child’s needs and feel guilty if we try to put our needs first.

I’m going to tell you something.  It’s OK to be selfish once in a while. In fact it’s necessary. You will be a better support for your child, partner to your spouse and overall better person, if you just give yourself a break. And folks, this isn’t just good advice for special needs parents, it’s good advice for ALL parents.

I understand everyone’s situation is different. Maybe you have family that can help out, but you’ve been too shy to ask or maybe you don’t have a family member or close friend you can ask to come sit with your child, so you can grab a much overdue nap or run a few errands, just to get out of the house for an hour.  But that’s ok. There are many highly trained individuals who specialize in providing respite services. If you don’t know where to start or how to find these people, begin by speaking to your child’s development team. Often times they know of nursing students or therapy students that are well trained and looking to make a few extra bucks. There may even be students doing work placements with them that are trying to break out in this field and are looking to do respite full time. Another great resource is talking to other special needs parents and finding out who they use; maybe their worker would like to pick up a few hours working for you too.

If your budget doesn’t allow for respite services, you can look into funding through your province or local and national organizations that grant this type of funding.

If none of this applies to your situation than look into community groups that offer special needs playgroups where you can talk to other parents sharing the similar experience; maybe you’ll even connnect with one and start a friendship, or special needs support groups where you can at least have a platform to share your feelings. It might not be the complete break you need, but at least you are among those that can understand what you are feeling and can lend an ear.

In the end my point is this….take a break. You owe it to yourself, your child and your family.

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The Voice Of My Nonverbal Child

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In the five years I’ve been Olivia’s mother, I have learned that my voice is an important tool in my daughter’s well-being. With it, I hope to help Olivia obtain opportunities that may never have been presented to her and to assist in the assurance of equality.

As parents we strive to do what’s best for our children. Ideally we make sure they receive the proper balanced nutrition in their meals, practice good hygiene, be mindful of their manners, finish their homework, be respectful of others and be kind, loving people. We hope through this guidance that they one day will grow to be confident, good natured members of society. As a parent I value all of these ideals, but one ideal I didn’t list; which not many parents think about, is equality for their child. Parents to children with special needs have this on their minds everyday.

This day in age, equality should be a given, not a goal we wish to achieve. It shouldn’t have to be a topic of debate, but we see it everyday on the front pages of our newspapers, headlining stories on the news and trending on social media, instances in which individuals’ right to equal education, equal opportunity, equal employment, etc, etc, has been threatened.

I want a world for my children that offers opportunity for each of them. Neither of them should be scrutinized due to gender, disability or how they live their lives.

Olivia is only five, but in her five short years, myself and husband have had to be her advocate; her voice. Why? Because our daughter is disabled. I cant tell you how much I hate that word. The prefix “dis” promotes negative and an unwillingness; as if being different were something that were ugly or of burden; but it’s the definition society assigns to those who have limited abilities or differences in their physical appearances than that of our own. I recently heard the term difference of ability and thought how it promoted a more inclusive feeling. How the implementation of this term could potentially have a positive impact on how individuals with different needs are viewed. We all have different abilities, this is no different from an individual who relies on a wheelchair to move around or uses communicative technology to speak. Using these tools is just that; they are tools to assist that person in life. Would you ridicule someone for wearing glasses and limit their right to equality because of this? Of course not. Then why do we do so for those who also rely on assisted devices? I bet you never considered eye glasses to be an assisted device.

We have had to strive for funding for programs, equipment, educational opportunities, and developmental support. Everyday I wake up wondering what challenges, road blocks, or walls I will face and how will these challenges prevent Olivia from reaching her full potential or achieving the goals she sets for herself. Will she grow up in a world where she is viewed equal to her peers? One day I hope this to be true. For now I will continue to be her advocate, her voice and her biggest fan because I believe this world can be better for our children.

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