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 can’t think of a better day to discuss mental health, than on #BellLetsTalk day. When it comes to parenting/caregiving children with extraordinary needs and various degrees of medical fragility, traumas that impact you, aren’t often discussed. Instead, if you are like me, you fall into an almost robotic mode, building a protective wall around your emotions because let’s face it, when your child is fighting for their life, your only focus is them!
I got so use to building my wall higher and higher that I didn’t see it beginning to crumble beneath me.
It’s ironic though, thinking back now, here I was, an advocate for sharing and connecting….and I did…but, I couldn’t release the worst emotions I had held deep for so, so long.
I have written before, in a previous blog, the complex emotional acceptance of living in today, but always having the weighing fear of death lingering in the back of your mind. That weight coupled with experienced emotional traumas of witnessing your child in the worst possible circumstances, moments in which you try to convince yourself this can’t possibly be happening…your worst possible nightmare can not be today’s reality, it’s here where my wall began to crumble.
I couldn’t identify the dire emotional state I was in, straight away though. I recall a vacation we took a few years back, to my hometown. My husband and I decided to take our kids for a walk around my old neighborhood. The sun was shining, the street was quiet; an absolutely stunning day! Then all of a sudden I experienced numbness in my face followed by a pounding feeling in my chest. Shortness of breath followed soon after; I thought I was having a heart attack. This experience was the first of several to follow. What I was experiencing were panic attacks.
Panic attacks were the first sign, then came the nightmares. Visions so clear and terrifying that I would wake and never return to sleep.
The mental health of caregivers/parents raising children with extraordinary needs is such an important discussion to have. If it weren’t for the incredible counseling I received and the support from my family, I wouldn’t have had the courage to speak out now. Please don’t be afraid to share, lean on a close friend or family member, or reach out to a mental health provider today. You deserve peace of mind and always know, you are never alone!
Nine years ago, I had no idea what Cerebral Palsy was or how it would become a part of our everyday life. Like many, I never knew anything about the most common childhood disability and how it impacts millions worldwide. But, all of that would change on a cold October morning in 2010, when our daughter Olivia was born.
I remember the first time I laid eyes on her. She was lying in an incubator in the NICU, wires and machines everywhere, but there she was…this perfect little nine pound gift, with fire red hair in a faux hawk style. Her hair and spunk would become the talk of the NICU, and the nurses would all have their turn at styling that badass little do. So, how could such a little wonder be dealt such a heavy hand? Receiving Olivia’s diagnosis of Cerebral Palsy haulted every emotion I had. The future her medical team painted was filled with struggle and sadness.
How could that be? How did they know? The thing was, no one really knows what the future holds. That was the moment we decided Olivia would get every opportunity to succeed; whatever that looked like.
Here we are, almost nine years later and the term Cerebral Palsy no longer carries with it, a punch to the gut affect on me. It also doesn’t look anything like the picture painted for her, almost nine years ago.
Olivia’s successes are not measured by standard milestones, they are celebrations of perseverance achieved by overcoming adversity. As Olivia found her way, she lead us through her journey, and taught us to look beyond the challenge and see the ability.
Olivia has developed skills in advocacy, teaching others about eye gaze centred communication; she has developed a love for physical activity through inclusive sport, she continues to build on her love for learning and has shared with me, that one day she would like to become a teacher. Her abilities far outweigh the challenges she faces daily.
This week, on October 6, we will be participating in a day that holds great importance to us, World CP Day. World CP Day is a global awareness day dedicated to research, education and awareness for Cerebral Palsy. You can learn more at http://www.worldcpday.org. If we are to change how we as society perceive disability, days like this are essential. What most of us seem to forget is, disability can affect us all, at any stage of our lives. Topics surrounding accessibility and inclusion should be conversations we are all interested in having and learning how we can achieve higher standards of each.
On October 6, I hope you all will consider joining us in wearing green, for Cerebral Palsy.
Today our daily routines officially switched from laid back, wake-up-when-you-damn-well-feel, to waking up to alarms, bustling around the house and getting out of the house on time for the bus to arrive. Yup, we are in full swing of the back to school season!
It’s all good though. Getting back on track and routines situated after a restful summer, brings with it a sense of renewal. We all needed this reset and are eager to see what this new school year has in store.
For instance, last year was a tough one for Olivia. She endured a tremendous hip reconstruction surgery that took an immense toll on her, both physically and mentally.
The impact lead to almost two months of missed school. Missing that amount of time impacted her ability to catch up on the work she had missed. Knowing how much our girl loves school, like seriously LOVES school, we felt it only right to have her repeat her current grade. Yes we considered how friends would move on to the next grade without her, but we also knew that it’s a great opportunity to meet new ones; growing that beautiful circle of friends even more. We also knew how unfair it would be to push her ahead, without her having the foundation of information from her current academic year. I mean, how could she retain and understand new information in the next level, without having a solid understanding of the previous work?
So here we are, believing wholeheartedly in our daughter’s ability and how she absolutely deserves every opportunity to succeed. Call it a “do-over” year, a repeat year, or whatever you want; we choose to call it Olivia’s Year. Because damn it, she deserves a shot at showing she can do it…and we know she will.
Truth be told, when I found out I was pregnant with our third child, I never thought we would be raising a child with severe physical disabilities, a seizure disorder, gastroesphageal reflux disease, or care beyond anything we had ever experienced before.
It’s not something any parent ever imagines, but here we are eight years later, learning day by day how to provide the best care for our daughter; all the while finding the balance between being her Momma and her caregiver.
As odd as that may sound to some, parents are typically not caregivers. Yes, we care for our children through nurture, love and support. We guide them throughout their milestones, celebrate their independence, and as they grow, what is required of us, shifts. We move from changing dirty diapers and the messy (but fun) toddler years, to sending them off to school, watching them establish new friendships, seeing the occasional glimpse of who they will become in this world, and knowing one day your nest will be empty.
Many families, like us, raising children with extraordinary needs, instead live our lives through a different lense; one that consists of two roles: parent and caregiver. The role of caregiver becomes deeply entwined into our parenting role. As we love and nurture our children, we are learning to provide care that is essential for the well-being and development of our children, for the rest of their lives.
Some of us have not moved beyond the diapering stage, and possibly never will. Some of us are still feeding our grown children because they lack the motor function to do so independently, or they require feeds through a feeding tube in their nose or bellies. Some of us are lifting our grown children in and out of bed, into wheelchairs, into bath tubs, or into specialty devices. Some of us have chronic back problems. Some of us are struggling with mental health issues like anxiety and depression. Some of us have chronic broken sleep because we must tend to our children throughout the night with seizures, muscle spasms, reflux pain, insomnia, etc. Some of us have had to sit at the bedside of our children in the hospital and struggle with the worry they may not be coming home. All of us have had to learn the medical lingo used by professionals when discussing our child. All of us have had to learn to become fierce advocates so our children get the support and care they need. Some of us have had to leave full-time jobs and careers to care for our children. Some of us struggle with worry for the day we become old and our bodies feeble and we wonder who will help us care for them? What if we die before them?
Throughout all of this, us Mommas and Daddys work hard to strengthen our children’s abilities, pushing them to never give up. There is no better feeling than the moment you see your child overcome a challenge and see the sheer pride and sense of accomplishment in their eyes. These are the freaking AWESOME parenting moments!
We have learned to be parent caregivers. We had to be trained by physiotherapists to do specific stretches and positioning that would benefit our child.
We were taught exercises targeted at motor function development by our occupational therapist.
We have had indepth discussions surrounding caloric intake and ways to improve growth and development with nutrition support teams.
We have sat with our daughter through several EEG tests to address seizure activity, all the while working hard to distract her while the technician attached nodes to her head.
We have sat by our daughter’s bedside in the hospital while she recovered from surgery over a dozen times.
We have been at her bedside in hospital for Epileptic events and sickness countless times!
I have watched my eight year old daughter not even flinch when poked with a needle because by now, she has been poked literally hundreds of times.
I have learned to change a g-tube in the comfort of my home, unassisted by nursing staff and have removed bandages post surgery, administered medication, carefully and accurately measuring each dose of all medications she requires.
I have not had a full night’s sleep in eight years! I watched EMTs perform lifesaving measures to save my child. These images will never be gone from my memory.
I have sat by my child’s bedside in hospital, not knowing if she will ever come home again. I have poured my heart out to God and the Universe begging to heal her and I have cried my heart out inside hospital chapels.
I have learned to use countless adapted devices that support my child’s well-being.
I have come to accept that our daughter will not have the independent life we had always wanted her to have. It’s a hard truth that has taken me a long time to accept.
Although she may rely on us fully, we will always make sure her life is full and rich with experience.
I will forever be my daughter’s cheerleader, her soft place to fall, and her fierce protector.
Life can be a lot to handle sometimes…heck, a lot of times. It’s hard. It’s messy. It’s beautiful. It’s crazy. It’s raw. There are days I cry heartbroken tears, then there are days I cry joyful ones too. There are days I don’t know how I’ll ever make it through. There are days I question if I’m enough or if I’m doing enough. The lines between parent and caregiver has blurred for me because I can’t be one without the other. Throughout these last eight years, I have learned I am resilient, I am strong (eventhough at times, I feel weak…and that’s perfectly ok), and if given the opportunity for thirty minutes of peace, I’m headed straight for a nap.
It has taken me two weeks to process the last two weeks…
The morning following Olivia’s hip reconstruction surgery all I could think about was, she made it through. The road to recovery will be long, but she survived.
Breathe Momma, breathe.
Raising a child with complicated medical conditions creates a duality in the mind; living in the moment and enjoying every beautiful minute with them, but at the same time, carrying the devastating reality that their life is exceptionally fragile. The next surgery, virus, or complication in their condition could kill them.
Walking into the hospital the morning of her surgery was a surreal. My mind was carrying heartwrenching worry, while my body moved through the motions. It felt like an outer body experience. Olivia had been through countless operations and procedures before, but this time was different. This time, our greatest fears our daughter may not come home, were real.
As I entered the operating room with Olivia, I watched how unphased she seemed. Like I said, this kiddo has been through more than her fair share and had developed a tough armor of courage. I watched as the nurses transferred her from hospital bed to operating table, taking great care in her comfort. She smiled at them; her way of saying thank you. Once she was situated, I scooched in close to her as the anesthesist placed a mask of medication over her face to promote a medicated slumber. I then did what I have done many times before; I sang my baby off to sleep, only this time a chorus of OR nurses joined in. An enormous lump formed in my throat and tears filled my eyes as I continued through the lyrics of, “Out on The Mira”. As Olivia’s eyes closed, I looked around at her team and told them, “take care of my baby”, kissed her head and silently prayed for God to keep her safe. Walking out of the OR this time was different. My body moved, taking steps one foot in front of the other, but my soul was drowning in fear for Olivia’s life.
Craig and I spent the next while sitting in silent prayer in the hospital’s chapel. There was nothing more we could do. As the next seven hours passed, we went through the motions, trying our best to occupy our minds. We longed for the call that Olivia was in recovery.
Later that afternoon, Olivia was in our arms again. The vice of stress that held tight my chest, released. I took my first real breath as I laid eyes on my sleeping beauty. Emotionally we were broken, exhausted, relieved and thankful. A complete mixed bag of feelings drenched in gratitude.
We are now two weeks post op. Life is slowly emerging into the recognized routine we relish. Monotonous tasks like dishwashing bring with it peace of mind. Olivia’s wounds are healing from this most recent battle. These scars join the others that tattoo her body, serving as a constant reminder the havoc Cerebral Palsy has waged on her tiny body.
Olivia is her amazing marvelous self. She is getting use to the constant wear of her hip brace and is enjoying all the added attention from her siblings, friends and family. I am, once again, in awe of my daughter. Her sheer tenacity and resilience is something of wonder to witness.
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!