Pathways

The development of what we now know about the  brain regarding how it operates, its patterns and capabilities to show flexibility has increased exponentially in recent years.  Neurons in the brain fire, make connections and create pathways adapting to its environment in remarkable ways.  This ability to create new trails, and sever ones that aren't as useful is the realm of neuroplasticity.

Ali and I have been learning about the many pathways the brain creates in order to perform tasks such as movement ever since James was born.  One early morning, looking out a window from the Ronald McDonald House I began drawing comparisons between neuroplasticity and the way that trees grow.

They send out branches, reaching for further ways to progress and develop towards the sun.  A tree is a network of trails and paths, above and below ground, that intersect and make connections in creative ways.  If a certain branch of area of a tree is damaged or is not producing like it should, the tree can creatively work around that area, self-prune, and continue its network of pathways to find success in its environment.  This is precisely the hope and prayer that Ali and I have as parents over James.  That his brain would creatively make new connections and ways to accomplish movement through the possibilities of neuroplasticity.  Every human learns and develops through the brain making these connections and realizing what it can manipulate around them, and this is so important for James in his development.

Movements that come naturally with time for most children such as bending, sitting, rolling, crawling, balancing, bracing, standing, and walking will take many hours/years of intentional training through daily physiotherapy for James to allow these neurological connections to take hold.  The goal is that in time, they happen without thinking.  The spasticity and stiffness that is common in CP can be shifted, because of neuroplasticity.  This road is a long road to travel with many hills and valleys along the way.  No parent wishes these difficulties for their child.  It will be painful.  It will require a summoning of resiliency, patience, grit and stamina to continue on.  The journey James and other children like James will experience will bring them face to face with grappling the unfairness of the world in ways that the majority does not have to.

I have found the current Sick Kids marketing theme so moving.  It speaks to the fighter in every child that encounters medical issues.  It's called Sick Kids "VS".  It promotes the strength of the child, not the weakness of the disease/disorder.

When Ali and I were unexpectedly told that James was being transferred to Rouge Valley Centenary Hospital in Scarborough in a few hours, we quickly packed up our things and prepared to leave.  One of the nurses pulled me aside and described that they have been preparing a necklace for James that symbolizes all of the moments of bravery he had to undergo during his stay at Sick Kids.  Each bead represents a specific part of his medical journey from various procedures to events (NG tubes, CPAP, blood work, MRI's etc.)  This is such an empowering source of internal strength that James can look back to later on.

James' Bravery Beads

So, earlier than expected, James was transferred to Scarborough.  He stayed 3 and a half weeks at Sick Kids.  He would stay at Centenary for a further 3 weeks before his homecoming.

The support that Ali, James and I experienced through prayer, gifts and encouragement while at Sick Kids was immense.  I wasn't always thinking to take pictures in these moments at Sick Kids but I do have a few shots of friends and family that came to visit.  If you're reading this blog and you have some pictures of us together at this time, please forward it to me.  Here's a sampling of the amazing family and community that surrounds us and James.

Papa Boakes, James and Mike

Gran Heeney, James and his nurse

Our favourite nurse Megan

Family visiting at the hospital

Visiting with Lindsay and Tim Wadsworth, and Lydia

Visiting with Mike and Christine Armstrong, and Dar and Mike Costas

James will tell his story

After a couple of days of arriving at Sick Kids, our nurse Shantelle asked Ali if she would like to hold James for the first time. She organized the lines, set up James' biliblanket (phototherapy for jaundice), situated Ali in the chair close to James and carefully passed him to her. It was such a beautiful moment.

First time holding James

James' initial ultrasounds revealed a brain bleed that needed further investigation.  We listened to the rounds each day and asked a spectrum of questions to the team of doctors and nurses to try and catch us up to speed with what James was experiencing.  There was so much to learn.  Brain bleeds were quite common occurrences for early preterm babies and for many they healed over time.  We began to hear stories from well intentioned people about how their babies were also preterm and just needed more time to develop.  Or, that they knew of someone else who was a premie and now that they are older you would never tell.  And although these stories were hopeful, it didn't quite seem to fit our reality.  Two weeks later during one of the doctor rounds they asked to speak with Ali and I after the rounds were over.  I knew I wasn't going to like what they had to say.  The doctors said that they had found results in the MRI scan that suggested some damage had been done to specific areas of his brain due to the lack of oxygen at birth.  We were told that James would very likely have spastic diplegia, a form of cerebral palsy, which is a movement disorder affecting primarily his legs and gross motor ability.  However, the doctors also said that even though this damage is present in the MRI, the brain has plasticity, meaning it can create new pathways and rewire as we challenge James in reaching key developmental milestones.

The phrase that stuck will Ali and I during this consultation was that "James will tell his story".  There are a number of ways to interpret this statement.  At the time, we were holding onto the hope that James would not have CP at all.  Even though it was very likely he would have CP, we held onto "James will tell his story" as a kind of postponement of diagnosis.  The doctors encouraged us to do this.  James hasn't shown any signs of CP because is was still so young.  Our prayers were that James would "tell his story" of recovery despite scans that suggested otherwise.  After all, he was only a couple of weeks old.  He would have years to develop, and 'who cares if it takes him longer then most to meet his milestones' I thought.  As time passed, "James telling his story" has become more about him revealing to us his abilities.

One afternoon after the conversation with the doctors, I walked down to Nathan Phillips Square to apply for Ali's PCIC and maternity leave benefits.  On my way over I couldn't help but replay these conversations over in my head and question what the future would look like for my little boy.  How severe would this spastic diplegia be?  Would he be able to walk?  What would school look like for him?  Recess?  Would he need assistive devices to get around? How might this cause limitations for James? These questions and a host of others came as a flood of worry.

As I was walking down Bay Street I noticed these sculptures installed on the edge of the sidewalk.  They were entitled  "The Brain Project".  It's aim was to raise awareness and funding for brain research at Baycrest Health Sciences. It is a series of 100 unique, diverse, colourful brains.

"The Brain Project" displayed on Bay Street at Yonge and Dundas Square 2016

At the time of passing by the art my mind automatically recalled the conversations with the doctors and of James' brain development.  I internalized this public art installation as a reminder to pray for James.  It was an unexpected, meaningful bridge between my personal world and the public realm of Toronto.

I would later come across a term I hadn't heard before - neurodiversity.  It aims at levelling the playing field for what is considered normative social neurological dispositions.  It argues that neurology, not unlike ethnicity, gender, or sexuality, is best seen on a spectrum.  The socially accepted neurotypical brain does not necessary mean it is more natural while other brains are deficient.  They exist in the colourful and varied world of diversity as well.  This art installation places the concept of neurodiversity right alongside the urban connectors and pathways of the city streets, roads, sidewalks of Toronto.

My prayer for James became a request for new connections to be made in his brain and for new pathways to be formed that would stimulate his growth and development. We encouraged our family and friends to pray for this along with us as well.

Ronald McDonald House

After the first sleepless night in the waiting room, my parents booked Ali and I a hotel nearby for the second night.  The practicalities began to set in as we began to have more exposure and time in the NICU life.

These things need to be done now, if not sooner:

• I needed to get on the phone and salvage any cancelation I could for every accommodation and flight for our Iceland and visiting Emily and Luke in England trip.

• Meet with social worker

• Meet with Doctor's during their rounds

• Start the Certification forms for James with Service Canada

• Apply for PCIC (parents of critically ill children) leave for Ali

• Kickstart Ali's maternity leave by contacting her work and applying for EI

• Research walk in clinics for Alison to have a check up post birth

• Contact my work and union

• Find a cheap location where Ali and I can stay while our son is at Sick Kids

• Connect with family and friends with updates

• Coordinate a schedule for visiting times between our contacts

• Find ways of sneaking eating and sleeping into our days

• Oh, and Ali had to pump every three hours, since James was too young to breastfeed

• Kangaroo care (holding skin to skin with your baby) could happen after James' feeding times every two hours within the short window of allowing him to sleep and not be disturbed during handling times

So, as you can tell, add the emotional pull of concern for your son and serious lack of sleep and the anxiety levels were through the roof.  Walking from the hotel to Sick Kids that morning, I felt a wave of exhaustion I haven't experienced before.  It was like my body was powering down.  I felt nauseous and needed to sit down for a moment.  Ali went to get us both a coffee and I sat down in the atrium beside the water feature.

At this moment, waiting at a small table for two and placing my head on the table in exhaustion, I heard the sound of reassurance and of providence.  Water cascading over the separate platforms reminded me that life always moves.  It shifts and adjusts to its environment in unexpected ways. The sound of water was so calming, it slowed my breathing and regulated my heartbeat. My nausea passed and I felt a renewed energy.  I could sense a serenity that went beyond my understanding.  I was reminded that life, through the metaphor of water, is resilient.  Water sustains living beings throughout all of the mysteries of the seasons we find ourselves in.  The subtle, muted trickle of this water feature was placed in the middle of the atrium, the gathering place for those living in tumultuous times.  It was a reassurance to me that God had James under his provision and that we would make it through these difficult times.

After the day of tackling my list, with the help of my amazing mom, and visiting James I was told that the social worker wanted to see us.  We had been accepted into the Ronald McDonald House to stay at a subsidized cost for the remaining time that James was at Sick Kids.  Relief washed over me.  As the staff member showed me around the place I began to cry, the thankfulness in my heart could not be held back.  We were in walking distance to the hospital, surrounded by other families living a similar reality, and they even provided meals and suggested we bring guests over to eat with us during our stay.  They were an absolute answer to prayer.

Ronald McDonald House Main Lobby

Ronald McDonald House Courtyard

Jordan, Angelica, and Aurora had a welcome message waiting for us at our door

Jordan, Angelica and Aurora

Ronald McDonald House Room

These ducks may have been for the kids...