Another Battle Brewing

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Days like today draw a blow to me equivalent to a punch in the gut. We had Olivia’s follow up with her pediatric physical medicine specialist and orthopedic surgeon. We have been exploring noninvasive treatments to treat pain and discomfort related to hip subluxation (when the “ball” of the hip begins to drift out of the “socket”), in an attempt to buy Olivia some time before another extremely invasive surgical procedure.

Hip subluxation is another condition that develops as a direct result of Cerebral Palsy. Muscles in kids with CP, who exhibit high spasticity, like Olivia, are in constant battle with the bones of the body. As the body grows, the tight muscles keep pulling and adding pressure to the bone and joints. This leads to the development of scoliosis, hip subluxation, and many other structural problems within the body. The most common interventions are an assortment of pain medications, orthopedic intervention in the form of surgery, various adaptive equipment, physiotherapy and occupational therapy. When the less invasive approaches are exhausted, surgery is the next recommended option.

In the past, our very brave girl has been deeply affected by surgical interventions, often leading her to being admitted into pediatric intensive care units post surgery, where nurses and doctors worked tirelessly to gain control of her pain. These moments were filled with fear when her heart rate reached dangerously high levels or when her little spirit seemed so lifeless and weak as she struggled to recover, we didn’t know if she would come home. These memories are fresh in our hearts and to think we may be revisiting these moments again, well…this Momma is devastated.

I mean, how does a parent decide…really? No parent wants their child to live a life of pain, but the road to lessened pain is paved by intense and invasive pain…AND, there is no guarantee that the surgery will work.

So tonight, as I sit snuggled in tight, holding my girl close and breathing in her freshly shampooed hair while she sleeps; my mind and my heart struggle to know what is right. No decision needs to be made tonight; not even tomorrow; but one will need to be made. If we do nothing, there can be long term affects. If we do something, it may work or it may not and she still may develop issues as a result of the surgery. The surgery may not be a one time deal. She potentially could have this done and need it done again in a few years.

As much ground she has gained socially, and the minimal ground she has gained physically; the constant remains, Cerebral Palsy will be the devil she fights daily. With every ounce she has fought to keep, CP threatens to take it away.

Olivia has always been our warrior. She wakes up each day with a precious smile and a heart that warms everyone around her. In a world where our words are our greatest tools, she has spoken to the souls of strangers despite her lack of speech and has brought education and spotlight to Cerebral Palsy and disability. She has, and always will be, the bravest person I know. So, tonight, we will steady our pace, read and re-read all the literature we can and keep asking and exhausting all options before moving forward.

To all the other Mommas and Daddys out there, who are chasing these fears and struggling to do what’s best, I feel you. May the love and strength we have for our children guide us through these dark times and may we find that strength while holding our little one’s hands through metal bed rails, while trying to maneuvre through IV lines and drown out the constant noise of beeping machines. The life of raising a medically fragile child instills with it a deep respect for life’s delicacy, paired with the love for life’s resilience.

How Lucky Am I?

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It’s late. As I lay here in bed, soft sounds buzz from the lowered volume of the television and I am surrounded by the warm snuggles of my girls; gratitude envelopes me. The calmness of their breath captivates this treasured moment of quiet slumber.

It’s these moments, in which I study the freckles around their noses and the tiny curls that peek from the corners of their temples. When did they get so big? Yesterday they were wrapped and swaddled cozey in my arms, today they stretch half my body length. Sigh. Time, please slow down.

It’s oftentimes easy to get swept up in the busy tasks of the day-to-day, but one thing I have learned since Olivia’s arrival into this world, is nothing in this life is ever guaranteed.

I soak up this time and cherish every second. The same goes for nights, in which pain comes hard, and fast for her; intuitively I rock her in my arms through another storm. In those moments I beg God, the Universe, whatever; to put her pain onto me, so that her little body is spared. These moments crush me!

When you have a medically fragile child, every single day is a gift.

Tonight, as we lay snuggled in close; I soak up the warm, sweaty curls that stick to their cheeks. I listen closely to the softness of their breaths. I imagine the wonderous dreams that fill their innocent thoughts. How lucky am I, to be their Momma?

Taking The Good With The Bad: The Day to Day Challenge Of Raising A Child With Extraordinary Needs

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It was a long day. The kind of day that warrants a cold beverage and several uninterrupted moments of mind numbing reruns on television because this is all my head can handle at the moment.

Today was Olivia’s annual appointment with her rehabilitation team. These appointments consist of Olivia being the focus of more than a dozen medical professionals ranging in various medical expertise, talking about her development and achievements; as well as medical issues that have arose and require further investigation. She always gets xrays, is examined by both ortho and physio teams and we answer series of questions ranging from nutrition to muscle spasticity and seizure control.

Olivia is a beautiful seven year old with a keen sense for adventure, loves everything family and gets more joy out of life than anyone I know. She is also a child that was born into a body that battles her every movement, deprives her of rested sleep, jolts her into epileptic seizures, causes her painful muscle spasms and is the reason for more than a half dozen surgeries and medical procedures. For every success she has strived to achieve, there has (and always will be) something else Cerebral Palsy affects.

This is why it came at no surprise when her orthopedic surgeon looked at me and said,”we think it’s time we started to discuss the need for hip surgery.”

This is Olivia’s reality. This is our reality.

These are bad days. These days suck. But parents like us realize if we focus too long on the bad days, we miss out on the good ones.

I am a firm believer in living for today and always having hope for tomorrow. So tonight, as I mull over all of the information we received today; tomorrow we will research alternative, non-invasive treatments to alleviate the strain from Olivia’s hip.

Tonight I will remember all of the previous challenges Olivia has faced and kicked ass because this kiddo was born a survivor. We will get through this. There will always be the day to day challenges, but we must focus on the good.

An Accesible Nova Scotia, Ambitious?…Nope. It’s Essential

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The topic surrounding accessibility; and what that means, wasn’t a topic we discussed (or even thought about) prior to Olivia’s birth. And I think it’s safe to say many people never think about the importance of accessibility because, well, they have never struggled with physical, environmental or societal barriers personally, or there is no one within their circle who they’ve witnessed struggling with such barriers. I can understand that, but here’s the thing; disability affects everyone. Disability can impact our lives at any given moment. An individual can be born with a disability, a severe sickness can attribute to loss of mobility, speech, bodily functions, you could be involved in a serious accident that leaves you permanently disabled, or the natural progression of aging and our body’s own deterioration. Knowing this is the first step in recognizing why accessibility should be important to you.

Lastnight, my husband and I participated in a public discussion regarding the province’s plan to make Nova Scotia fully accessible by 2030. A plan the province is calling “ambitious”.

We spoke with other families and individuals within the disabled community, listening to their personal stories and challenges they have faced most of their lives. One gentleman shared his story, he was serving with the Canadian Armed Forces and was injured during a training exercise. He told us, “Accessbility punched me in the face. I never thought about it prior to my injury. I’ve been in the chair twenty years.”

Another family shared their struggles with locating an accessible apartment for their daughter and her family. Because present guidelines state that apartment buildings require a certain number of accessible units, most owners build one bedroom units, thus eliminating the potential for families with a disabled member to require one.

And the story that hit hardest with me was shared by our lead presenter. A young woman who he had been mentoring, who had obtained her Master’s Degree and was enthusiastic to join the workforce, had committed suicide; all because she was throttled by huge societal barriers surrounding her disability. The young woman distributed over 200 resumes. She had letters of support from professors and her mentor, she graduated top of her class and had excelled in her ambitions. She felt the need to include her being disabled in her resume. She never received a single response. Her mentor advised her to eliminate that detail and as a result, she was given one interview. A year went by, she was unemployed and fell into a deep depression and then ended her life.

Accessibility isn’t just a “something”, it’s so much more. Accessibility is a frame of mind, it’s the environment we live, it’s everything that acknowledges we are all the same, despite our differences of abilities. It’s the validation that my needs are just as important as yours.

Amongst those in attendance who shared their stories and experiences were those who work with members of the disabled community; health care workers and teachers. Some shared the challenges that lie within their workforce, both physical and educational. They spoke about the heartbreak they felt for clients who weren’t getting the care they required, whether that be someone waiting for a bed in a long term care facility (many die on the wait list before ever receiving one), or the lack of professional health care workers to fill the voids.

Our province has ignored the importance of an accessibility standard for far too long. Implementing this action plan will hopefully establish a policy that has enough teeth to hold both public and private sectors accountable. We also need to hold our governments at a high standard of accountability. Decades have gone by and those who were elected to pursue the best interest of the people of this province, failed. From here on out, we as Nova Scotians can’t allow that to happen. When I here politicians repeatedly using the word “ambitious” in regards to this plan’s implementation, I hear, “this is our back door in case we don’t meet all the strategies.” Like they can go back and say, ” well yes, we didn’t get this and that completed, but look at a we did! We were ambitious to think we’d get it all done in twelve years, and did the best we could.”

I hope to never hear those words. I’m tired of words. I want to see it with my own eyes and touch it with my own hands. I want to go to dinner with my family, park in the well painted, well labelled accessible parking space, enter through the easily accessible power doors, walk my daughter through the wide, easily passable aisles, and take her to a fully accessible washroom equipped with a proper adapted table; NOT a baby change station. Is this really too much to hope for?

Our Normal: Whatever That Means

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We live a pretty hectic day to day life like most families, racing to the bus in the morning, running to evening soccer practices, homework, making time for each other, running a not-for-profit and the occasional revolving door of my husband getting home from work and me leaving for my second job, an evening part-time gig; one to three nights a week. It is what it is when you’re a family of five, but that’s only half of what has become the rest of our normal…whatever that means.

I remember back to when Olivia was a year old and we were fully immersed into a life that was dictated by weekly appointments that consisted of meetings with her pediatrician and developmental team, sessions with her physio and occupational therapists, house visits with her early intervention worker and the middle of the night hospital visits that seemed all too often in that first year. The list literally goes on, and on top of it all, trying desperately to maintain a sense of normalcy for our two older children, so that their lives didn’t become engulfed by our worries or this new medically facilitated lifestyle. Life seemed ironically chaotic despite the daily calendar I lived by, and the feeling of spinning out of control consumed me. It was like my body was suspended in air and I was desperately grasping at something to hold onto.

It took some time, but eventually the staggering amount of appointments just became what we did to give her the best shot at a happy life. Her brother and sister grew to love being the tag-alongs to each session because it usually meant a popsicle was in it for them or the chance to play on the mini trampoline in the rehab clinic.

We built a village of support through friendships with other families moving through similar journeys. The wisdom and advice gained lifted me up higher than I could have ever imagined.

The feelings and fears I had eventually evaporated and a new sense of understanding emerged.

The notion of ever having control is an illusion; I see that now. Because life is chaos; beautifully random and ever changing. It took me a very long time to learn this and to hold it fiercely within. The combination of never knowing what the future holds (and how terrifying that use to be for me), to living in today and having a deep appreciation for those moments we often take for granted got me here.

I’m writing this blog today for all those Mommas, Daddys, caregivers, whoever out there that is feeling just this exact feeling, now. Control… normal…it’s an illusion. There is no handbook or list of “7 Ways To Achieve Your Normal”. Embrace your chaos, find beauty in change, enjoy today and make memories now.

Grateful For Her Grit

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Sometimes our life is filled with many extraordinary circumstances that are unrelatable to many families, but then there are moments like tonight that prove we are in many ways, just like every other family out there and Olivia is just like every other seven year old.

The kids had been playing on the Wii prior to dinner, each of them taking turns being Mario or Luigi because when you have three kiddos and only two remotes, you do your best to minimize the possibility of WW3 erupting in your livingroom.

When I told them it was time to put away the game because supper was ready, Craig and Olivia were in the middle of their turn, working with Kameron to defeat one of the levels in the Mushroom World (definitely not the official name, but they all look like mushroom worlds to me).

I gave them a five minute warning while dishing up dinner and I could hear complaints coming from Olivia, which sounded like a series of annoyed groans and squeals. Like most seven year olds, she LOVES video games and doesn’t like to turn them off when told.

When the game was shut off she began to get herself riled up into what I thought would become a temper fit. Immediately I tell her if she is going to act this way, she will need to have a time out in her bedroom until her behaviour changes and there will be no more Wii the rest of the evening. I ask her “are we all done with this behaviour?” and proceed to hold up my right and left hands (right hand means yes and left hand means no). Olivia scans both hands with her eyes and chooses no. I say, “excuse me, but that is unacceptable. I think you meant to say yes.” Again she looks to my left hand and then shoots the biggest dirty look directly at me.

So usually by now I think most parents would be hopping mad that their seven year old was challenging them, but I wasn’t and you know why? Olivia was acting like a seven year old and this was her letting me know that she was miffed with me. Big deal, right? Seven year olds. Damn straight this was a big deal!

In the past, Olivia would have usually just erupted into a full blown meltdown, crying similar to a hard newborn cry that would have ended with her puking or passing out from exhaustion. This wasn’t just exhausting for her, it was extremely draining on us too. There wasn’t any opportunity to talk or ask questions, just riding out the emotional storm until it past.

Olivia has grown so much this last year, developing strong communication skills and a distinct behavioural maturity typical of her age. Her ability to beautifully communicate her displeasure of having to put away her game, using verbal indicators, non-verbal facial cues and eye gaze was amazing! In that moment, I had an incredibly deep respect for her because the road it took to get here was both long and difficult; and we were never sure we would get here. I was so proud I wanted to cry, but didn’t because it wouldn’t have been fair to her and here’s why.

Olivia is often treated or spoken to differently because she is a child with extraordinary needs. People will speak patronizing to her, often assuming she doesn’t understand. Children sometimes dismiss her, or don’t include her in activities going on around them. How she is treated every day within society is determined how others perceive a disabled child with special needs.

As her mother I do the best I can to educate and advocate equality and acceptance on her behalf, but the reality is I can’t control or change everything that happens in her environment. I can however, provide her with an environment within our family where she is treated equal to her siblings, accepted for who she is, where her voice is heard and where she will always be loved, taught respect and be respected.

Living Outside The Lines

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Growing up as an only child, I knew I always wanted to have a big family; so the news that we were expecting our third child was incredible and we couldn’t have been happier.

Already being a mother to a busy little bunch of munchkins, I felt quite confident in my mothering abilities. My pregnancy was fantastic! The kids were super excited for their new baby brother or sister to arrive and often would talk about what games they’d play or toys they’d share.

When the day arrived for my cesarean, I never in a million years anticipated things would go terribly wrong. Our new baby had suffered serious trauma, causing the loss of blood and oxygen to her brain resulting in massive brain damage.

From the moment of Olivia’s arrival, she fought to hang on. Our daughter was diagnosed with Spastic Quadriplegic Cerebral Palsy at eight months old. I remember feeling incredibly lost, unsure and deeply angered. What I needed was for someone to tell me everything would be ok; instead I had a neurologist tell us of all the things she would never do, painting a picture of a broken child. In my heart, this wasn’t going to be her truth.

It was at this moment I felt like we were living outside the lines of “normal”. When new parents bring home their new baby, they are flooded with knowledge and wisdom from seasoned parents. When you are a parent to a baby with special needs, you feel alone. There is no one to give you advice. Any information shared comes from doctors, therapists, and nurses. And although helpful information that attributes to the care and survival of your child, it is far different from the love and nurturing information shared between grandparents, parents, close friends, or new moms and dads. It feels as though no one is celebrating this beautiful child with you; sentiments arrive in the form of sympathies, and those who attempt heartfelt greetings carry looks of heartbreak in their eyes.

Truth be told, the early years were extremely difficult. Olivia had many health issues. There were many nights and days spent in and out of hospitals. It seemed every conversation we had with family began with, “how’s Olivia? Is she doing ok?”. As much as we appreciated everyone’s concern for her well-being, conversations around her were generally focused on her overall health and not specifically her. So, I did my best to show “her” to them and to the world.

I began writing about her and shared pictures of her. I wanted not only those close to us to “see” her, I wanted new parents receiving their child’s diagnosis to know their child was beautiful and special and something to be celebrated. I wanted them to see my child, despite her limitations, was living a life that was so much more than Cerebral Palsy. I wanted the community we lived in to open their eyes to people living with disabilities and recognize they to have so much to offer this world.

Olivia is this feisty little force-to-be-reckoned with, red head with a smile that lights up a room. She loves to read books, go to the park, and play tea party with her sister. She giggles at whatever adventure her daddy creates. She snuggles into my chest every single night, where I literally watch her breathe for hours. She never really cared much for being on her tummy, but loved bouncing up and down on the yoga ball. And when she started school, you never seen a happier child!

Olivia’s sense of adventure and fearlessness always has had the ability to draw others close. She has made many friends and she learned to communicate with an eye gaze board. Suddenly this child who was once deemed broken, was building relationships and teaching others how to be compassionate and understanding. She has inspired others to think differently and to contemplate positive change. She has taught others to see the ability!

From the moment I first laid eyes on her, I knew she had the power to change the world. How could she not? She perfectly changed ours.

So, here we are, valuing each day, learning as we go and happily living outside the lines.

Let’s Talk About CP: Cerebral Palsy Awareness Month

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In case y’all didn’t know, March marks Cerebral Palsy Awareness month in the United States. Canada currently doesn’t have a month recognizing the neurological condition that affects approximately 17 million people worldwide and is considered to be the most common disability in childhood, but our family actively recognizes it every single day.

Seven years ago we never knew what Cerebral Palsy was or how it would significantly change our lives.

Olivia had survived a traumatic birth that resulted in hypoxic ischemic encephalopathy, meaning she was deprived of blood and oxygen to her brain. The resulting brain damage lead to the development of Cerebral Palsy.

In the years that followed Olivia underwent over four operations and six surgical procedures, all to improve muscle tone and feeding abilities. She currently uses a wheelchair for mobility, a walker and standing frame for muscle development, intakes all food through a g-tube, communicates using both technological eye gaze software and low tech eye gaze boards, and wears specialized ankle braces. This is what Cerebral Palsy looks like for her, but it is not who she is.

Olivia is an animal lover.

Olivia loves to play hockey with her big brother Nicholas and her Dad.

Olivia is an active sledge hockey player.

Olivia likes to be silly.

Olivia is an advocate for herself and others like her.

Olivia is much more than Cerebral Palsy and so are the millions of others, who live with this condition. See the ability, always.

Please Stop Using The R-Word!

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On our way home today, from my dental appointment we stopped at the gas station to fill up. A group of high school students walked by and in all their laughter and loud banter, I heard one of them exclaim to the other, “you’re so retarded” and then laughed. To them, it was a nothing word; like it wouldn’t have been any different if they had used ridiculous in place of retarded….but yet they didn’t; they chose the r-word and that breaks my heart. It tells me that we still have a ways to go as a society. It tells me we are failing to properly educate our children about language which is not only offensive, but laced with ignorance and discrimination.

So this brings me to my post.

Perhaps a picture is worth a thousand words.

For those of you who don’t know, this is my daughter Olivia and she has special needs. Once upon a time ago, the word retarded would have been used as a label to describe hers, and others intellectual capabilities. It was a word that definitively described people like her, as being less. She most certainly is NOT less. People like her are NOT less. When you continue to use this word in conversation, you are indirectly promoting discrimination against her and the entire special needs community. So look at her face. Remember her face. Every time you are about to use the r-word in casual conversation, I hope her face floods your mind and reminds you that saying that word, hurts her. It hurts the work that the special needs community has strived towards creating acceptance and inclusion within our society. So please, choose your words wisely. End the use of the r-word.

It takes a village

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These last few weeks have been a bit of a whirlwind. I decided to take a big step towards starting a not-for-profit organization. The words of encouragement and support have been amazing and have kept me boosted, when endless documents and administrative duties have gotten to me.

But the best words came last night…and they weren’t pertaining to my new endeavour; although the message behind them were the inspiration that lead me on this journey: inclusion and acceptance; they were about teaching.

Teaching occurs numerous times throughout our every day life, although we probably don’t stop to think how often we are actually learning from our experiences, varying perspectives, or time spent in classrooms.

Teaching is a beautiful ability, with substantial power to influence perspective.

When Olivia was born, my life mission became that of changing perspectives through educating others about Cerebral Palsy. I wanted the world to know that disability did not mean less. I wanted to change how the world seen my child and other children like her. I wanted my child to grow in a world that accepted her, in spite of her differences. I wanted a world that embraced change.

The message I received last night filled my heart with such love and gratitude and showed me that Olivia has a village behind her, doing just the same.

Olivia’s teacher, Mrs. Christie, is a beautiful soul who is making our world a little more compassionate and understanding. Mrs. C has been teaching her students how to communicate with Olivia, who uses eye gaze technology, by teaching the entire class how it works. She conducted an entire science lesson with eye gaze, where students could only answer questions using the eye gaze board! How freaking amazing is that!?

Teaching opportunities such as this, have the immense capability of changing perspectives and showing how different does not mean less, rather differences can be fun, amazing and incredibly interesting! These are the kinds of teachable moments that will impact our future generation, smashing down invisible barriers that generate ignorance, intolerance, prejudice and discrimination.

From a Momma who has been fighting this fight for a long time, thank you to Mrs. Christie and the many other amazing teaching staff at Olivia’s school, who work incredibly hard to instill these messages in our future generation.