A (small) Step For A Boy, A Rainbow Of Hope For A Community.•
Posted on May 13 2020
I think of Jordana's Rainbows - The Chronicles as my portal to heaven. All of you are along for the ride, a place I can talk and be honest with everything I am feeling. The truth sets you free right? Yes it does, but always at a cost, and some days my truth is so painful I can’t breathe. Every step of the way - even those days - Jordana helps me. For example, after a very personal post, I am left paralyzed by the fear of “what did I just do?” Should I have been so personal, will that offend someone, was it too much? Am I too much? And just as I am frantically playing with my phone, opening and closing my Instagram account debating to delete, I get a message notification. Its timing is always divinely sent. Someone writes to me, thanking me; they proceed to share their current trials with me and I find myself crying staring at my phone thinking OMG - I did that? I am so broken, how did I help them? Then I realize that’s how we all fix each other - when we find ourselves in each other.
I received so many beautiful pictures of rainbow art after my April 22nd post to join in the movement and create rainbows of hope. This movement started in Italy to lift spirits during the COVID-19 crisis. It was carried on across the globe and Jordana’s Rainbows encouraged a call to action to do the same. We received so many wonderful and unique rainbows and there was one particularly sweet photo sent to us from CE Academy. The photo was of two children doing a rainbow experiment at home. I thought, what a great activity during homeschooling! I learn so much from our instagram followers. What I didn’t know was that the children in that photo were the twins of Miriam and Dave D’Onofrio.
We met Miriam and Dave over a decade ago through close friends. They were always supportive of Jordana's Rainbows, and during my journey with Jordana’s diagnosis, Miriam and Dave were navigating some storms of their own, with their son Alex. Miriam and I never spoke personally about any of this until now. It took a Rainbow of Hope to reconnect us - a rainbow from heaven wrapped its arc over both of us and we finally got to share a moment, share our pain and our determination to turn our pain into purpose.
Thank you Miriam for sharing your story with us.
It’s 10:00pm again. Where did the day go? After playing, learning, snacking, cleaning, bathing, story-telling and good night cuddles, another day has passed by.
It’s week seven of a province-wide shut down; we are at home, practicing social distancing and doing our part to flatten the curve. I still can’t believe that we are living through a pandemic. Knee-deep in a global health crisis seems universally foreign; it was something I thought only existed in history books. Although I had read and learned about the social consequences of pandemics prior to COVID-19, nothing could have really prepared me for the impact it has had on our lives. We are taking on roles and responsibilities we have yet to face, and developing new found appreciation of day-to-day mundanities which we took for granted as we continue to navigate and establish a new “normal.”
As I crawl into bed and open up my laptop, I get a glimpse of my hands and suddenly I have a lump in my throat. My stomach turns and I can feel my heart beating quicker and louder. They are red, cracked, dry and painful from all the hand washing and sanitizing I have been doing these last seven weeks. It was a sight and feeling that was familiar to me, having existed only one other time in my life - a time that is never forgotten and one that changed me forever.
When “The Littles”, Alex and Olivia (my twins) made their way into this world, they weighed only 3 lbs. 1oz. and 2 lbs. 11oz. They were born premature at 29 weeks gestation, and spent the next three months in the Neonatal Intensive Care Unit (NICU). My husband Dave and I very quickly learned to protect our tiny and fragile babies by practicing proper and thorough hand hygiene. As a result, we began what felt like a compulsive hand washing and sanitizing habit. Needless to say, a few short weeks into our NICU stay my hands were red, cracked, dry and painful, the very same as they are today.
I wish I could look back and say that our time there was “typical” for what you would expect for babies in the NICU. But, our experience was in fact so far from general expectations and what we could have hoped for. The reality I was soon to face turned my world upside down and left me broken, scared and pleading with God to give me the strength to make it through the days. About 10 days after the twins were born, Alex fell sick and spent the following few weeks fighting for his life. Although his fight in the hospital ended in victory, another lifelong fight had just begun. We were told that there was a very real possibility that he would never talk, walk, or do daily things that would enable his independence. Determined to give Alex the opportunity to reach his maximum potential, we researched different therapies and started filling up his schedule with appointments. Slowly, he was reaching some of the developmental milestones we were told he may never achieve.
At 18 months, Alex was diagnosed with cerebral palsy, a neurological condition caused by injury to the brain and resulting in a movement disorder. It was a diagnosis we feared but anticipated. Struggling to cope with the possible implications to my child’s future, I often wondered, would this condition define him? Would it hinder him? Would people look past the beautiful curly hair, big bright eyes and infectious smile to just see this label? The truth was, I didn’t know. But, I soon came to realize that it didn’t matter; we were going to give him every opportunity we could, enabling him to be his very best.
The days rolled into weeks, weeks into months, and months into years. Alex and Olivia were doing great. They were growing, meeting milestones (of course at different times), and our family was building routines. Yet, when it came time to think about school enrollment, Dave and I were filled with uncertainty, anxiety and worry.
Olivia, my spunky, vivacious, loving, smart and caring little girl would find herself accustomed and successful in most situations, and there were plenty of school options for her. Alex needed something different, something more than just school, something I soon discovered did not really exist in Toronto. Alex was involved in many different therapies, all of which played a huge part in the developments he had made over the years, though, one program stood out in particular - Conductive Education.
Conductive Education known as “CE”, something suggested to us by family in Hungary, was a methodology intended to help those with neurological conditions such as cerebral palsy, Parkinson’s disease, strokes, among others, achieve as much independence as possible. I once heard that Conductive Education, was a methodology grounded in human potential. It is about recognizing ability and creating an environment that fosters the success of the individual. It’s foundation includes many concepts, that of neuroplasticity, repetition, music and learning in group settings. The program looks at the individual as a whole and targets not only the physical, but the emotional and social aspects of the person by teaching activities of daily living such as eating, self care and dressing.
Alex’s CE conductor Sophie, introduced me to The Peto Institute in Hungary, Budapest. This is a live-in institution for children with neurological conditions, cerebral palsy being the most common of them. There, the children attended school while simultaneously partaking in CE programs throughout the day. Families from all over the world traveled to this live-in institution as the benefits to the children were life changing. The missions of Peto Institute sounded just like what I wanted for Alex - he would have access to the same level of academics given to others his age, while being in an environment enabling the continuous progression of physical gains and other developments. The question remained how did I get access to a PETO Institute here in Toronto when one did not exist?
As Alex came of age for enrollment in school, I fought with myself over the right course of action. We were witnessing incredible strides in growth and improvement of his motor development so I was petrified that it would all unravel if we did not keep it up. I also did not want to rob him of the bundle of benefits that came with school, including crucial learning and the opportunity to build friendships. Alex is a bright boy who has an innate love of learning, how could I deprive him of that? In expressing my concerns to Sophie (who I will get back to in just a moment), she revealed to me that her dream was to one day have a full day school program. However, she identified the scale of the project, being a significant undertaking which she had not found the right opportunity for starting. Without a moment of hesitation, I found myself saying, “I’ll do it with you!”
The CE Academy is a private school for children with neurological or other conditions impacting motor development such as cerebral palsy, global developmental delay, Down syndrome and others, which is based on the Conductive Education model and philosophy. The CE Academy’s unique programming offers children the opportunity to access CE, additional therapies, and education under one roof. It offers appropriate accommodations to the Ontario Curriculum in a physical and learning environment customized for each child. Each classroom has a conductor, a teacher and enough assistants to ensure the ratio of staff to children is at least 1:2 and often 1:1. The Academy offers a full suite of additional therapeutic services such as physiotherapy, occupational therapy, speech and language services, and yoga. It is a place that provides children with different abilities the opportunity to experience school in an environment that meets their unique needs.
To say that Alex’s life was the only one changed by the CE Academy would be inaccurate - it has changed mine as well. I am inspired every time I walk into the school; I find myself inspired by the staff whose dedication and care for the children is overwhelming. It is rare to find people who see past the physical limitations of kids, and only see the wide reaching scope of their potential. These are children who can learn, children who can achieve great things, children who have a place in this world. The staff unlock the magic within each child and inspire them to do great things. I am inspired by the children, whose drive and resilience are unmatched. The strength and determination of these children makes me want to be stronger and better every day. They have formed a bond so special that no words can describe. In essence, they have learnt to celebrate each other’s successes, be good examples for one another, to help each other out and best of all, to laugh together.
Life’s curveballs force us to learn a multitude of lessons. They expose us to people and circumstances we had never planned for. One of my biggest lessons was taught to me by Sophie. Sophie came into our life at a time when worry and uncertainty characterized our day-to-day. Sophie gave us the gift of hope and promise. She taught me to believe that kids can defy the odds, to always advocate hard for my child, to never give up, and to always get back up when you fall. Her goals encompassed all the lessons she had to share. The establishment of CE Academy actualized the hope she gifted our family.
School closures amidst this global pandemic have been tough on parents. They find themselves having to juggle the many hats they wear all at the same time. We are somehow busier now than we have ever been. I, like many, have taken on the role of teacher… not an easy task! Will my kids be able to keep up with the expectations? How do I get them to understand what is being asked of them? Am I pushing them too much? Not enough? How do I motivate them? Will they continue to make gains? And there it is… the question that haunts me every day. Will they continue to make gains?
For Alex and his schoolmates, not having school means also not having their direct daily physical programming and the therapy that they are used to. This inaccessibility may not only slow their progress, but can lead to regression, pain, contractures and more challenging effects on their development. For some children, it also means not having the critical socialization they otherwise had.
As parents, we try exceptionally hard to fill the place of our conductors, teachers and therapists but with chaos at home and the simple fact that we are not the professionals we are so fortunate to be working with, I feel like I often fall short. The impacts of COVID-19 stretch far beyond the illness it brings for everyone, and particularly those who rely on the care of others. I know these measures are necessary to ensure the health and safety of our community and to flatten the curve.
For now we weather storm by staying home, practicing social distancing, and washing our hands often. A beautiful rainbow will soon replace this storm, gifting us an enhanced normal.
Written By: Miriam D'Onofrio
"Everybody wants happiness, nobody wants pain, but you can't have a rainbow without a little rain."
To learn more about the CE Academy please visit their website: www.ceacademy.ca
Welcome to Jordana's Rainbows - The Chronicles
It has been 3 years and 3 months since Jordana left this earth. It has been a journey of truth, healing, discovery, growth, change and yes eternal ...Read More