Kids helping Kids

"We make a living by what we get, but we make a life by what we give" (Norman MacEwan)

April 13th was an awesome day! We went to Bracebridge for a Birthday Carnival put on by a community we didn’t know! The connection started with my Rodan and Fields skincare business. Katie Peleikis is also an R+F consultant and we are friends on Facebook and part of the same community of Rodan and Fields consultants but we had never met in person. She saw my posts about our fundraising initiatives for James and quickly made the connection with a boy named Ethan who along with her two kids, Phenix and Journey, helped fundraise for his SDR surgery a couple years ago. She told her kids about James and his acceptance to the same surgery and Phenix looked at Journey and said, “let’s do it!“ They took out their Ethan jar, wrote James’ name on it and Journey immediately went to her piggy bank to place the first donation.

Seeing this moved Mike and I to tears. Kids helping kids. So wonderful to see their hearts of compassion through this image of a jar with James’ name on it. This act of genuine kindness would have been enough on it’s own but little did we know, they were just getting started! Phenix (10 years old) and Journey (7 years old) decided to combine their birthday celebrations and host a community birthday carnival all in support of James! When we saw this announced on Facebook, we were absolutely amazed and overwhelmed that people outside our local community would be so willing to help us. They blew us away by how they rallied the Bracebridge and larger Muskoka community to put on this event. Everything from the arena where the event was held to the giant inflatable, bouncy castle, donations of silent auction items, cotton candy, magician, giant plinko and lots of games and prizes. They even had Santa Claus connections to encourage people to attend the carnival in support of James!

They were featured in their local radio station, "The Moose" and given the chance to talk about the carnival twice!

Also, Boba nominated Phenix and Journey to be Country 102’s Local Heroes for their efforts to help James and they won!! Their certificates say “Thanks for taking some time to do something nice for someone else. We see you, we appreciate you!!” 💚💚

Here's a video of the kids inviting everyone to their Birthday Carnival:

Leading up to the carnival date, they were featured in their local newspaper!

Here's the article:

Stars of the Carnival! From left to right - Journey, Ethan, Phenix

The kids loved the bouncy castle!

Media footage of the event:

Here's an article that was written after the event:

The power of generosity that we experienced stems from Katie showing her children how to care for others. She has demonstrated to Phenix and Journey that life flows when you cultivate a giving heart and a generous spirit. She revealed to her kids that they too should reach out in helping another and by seeing them as worthy of their time and care.

We were handed a precious gift that day. We, as a family, were shown that there is good in this world, even outside of our known friendships. We were shown a huge act of random kindness. We experienced a community rally behind the hope of two children who proved that when given a valued role and a platform, they could use their energy and spirit to make a difference in someone else's world. What a precious gift to us all. We received the blessings of embrace in their community and the financial support of helping James get closer to his goal of the SDR surgery - $3430.15 was raised! We are so grateful! It certainly is a day we'll never forget and happy to have this blog as an archive to show James and Shae when they're older!

The Little Way

Much of this blog is devoted to documenting the ups and downs of the physical journey for James Michael as he learns about how his unique body operates. But there is also a very present mental, invisible journey of the soul that has its various ups and downs that goes alongside this physical journey as well. This invisible, internal journey of the soul is one that affects us all – every cheerleader for James (including friends, family, and the beautiful strangers out there). Just as our body needs nutrition and a balance of use and rest to reach its potential, our mental and spiritual life needs its nourishment, use and rest as well. This blog post attempts to offer some clarity - some focused attention on the importance of the small moments of our days. In that pursuit, my hope is that it may provide some degree of perspective and nourishment for you in your own spiritual journey.

I’ve come across a small concept, a spiritual approach that packs a big punch. In his book “Stranger God” Richard Beck refers to this practice as "The Little Way" and it comes from one of the most popular saints in Catholicism, Saint Thérèse of Lisieux. 

Saint Thérèse of Lisieux. Easter Monday, April 15, 1894.

Here is some background on Thérèse:

Thérèse did not live an adventurous, heroic, or what we may label today as a "change the world" type of social justice life style by any stretch of the imagination. Thérèse was born in 1873 in Alençon France to a devout Catholic family. Two of her older sisters joined the monastic life at the Carmelite Convent in Lisieux, Normandy, when they were 16. Thérèse, being the younger sister, couldn't wait to do the same. She appealed to Pope Leo XIII to let her enter the convent early at the age of 15 and he agreed. She entered the community and participated in its quiet and rather uneventful day-to-day existence of prayers, meditations, meals, daily tasks and more prayers etc. I'm sure the highly anticipated monastic life for her would have lost some of its appeal as the mundane and ordinariness of her existence began to set in over time. Then one day, she woke up to find some blood in her mouth and two days later died of tuberculosis when she was only 24. Some of her friends at the monastery even wondered "Are we going to have anything to say about her at the funeral?"

However, Thérèse was a writer, and it is through her writing that we have access to an approach to life she called "The Little Way". As it turns out, this "Little Way" isn't so little at all. It's hard to do. You see, the world she was born into, in the late 19th Century France is in many respects completely different from our world today. Yet, in this regard it isn’t: the “great”stories of human achievement tend to be of heroes accomplishing great things.

For Thérèse, it was Joan of Arc fighting in battle, for us today, it may be Dr. Martin Luther King Jr., or Malala Yousafzai. In comparison to how our societies have elevated these individuals to “hero”status our own lives can seem insignificant and small, often tied up in responsibilities and duties compared to what they accomplished with their lives. Yet, the reality is that although we look up to these wonderful people as bringing forth a greater love and respect for one another, the majority of our own actions can seem inadequate. So, how are we then supposed to live? What do we do with our doubts, or insufficiency, our failure to bring about a greater change in the world around us? This is precisely what Thérèse wrestled with as she contemplated what her own life story might mean, while living in a secluded convent. She eventually found peace and purpose in The Little Way.

So what is the practice of The Little Way? Simply put, it is to do little things with great love. For example: a kind smile to a stranger, cleaning the dishes with great love, waiting in line at the grocery store with great love, sitting in traffic with great love, offering patience to someone who frustrates you.

For Thérèse, she initially desired for her calling in life to involve being the gifted, talented, leader and heroic person willing to give it all to her Saviour, Jesus. But, what she found was that it was hard to live that life as a nun in the remoteness of her convent. The context she found herself in did not lead to these grand narrative type of pursuits. So, looking at the Apostle Paul's famous body metaphor of the church in 1 Corinthians 12-13, she struggled to find herself as the eyes (visionaries, leaders...), or the mouth (preachers, counsellors), or the hands (missionaries, priests...). She didn't know what her role was supposed to be. Then, in reading chapter 13, Paul continues on that "love is patient, love is kind, it does not envy, it does not boast etc." Thérèse decided that she was to be the heart; to act in kindness and love as her day-to-day existence with others. Her calling was not to be recognized, or unique, or commit to large abstract pursuits of justice, but to instead throw flowers at the throne of God through acts of kindness. She became content with being alive and becoming a small vehicle of blessing to those around her. This is why Thérèse is known as "the Little Flower".

The power of "The Little Way" is that it suggests that little deeds done with great love is something we all can do, no matter the context we find ourselves in. As Richard Beck states, for many of us "life gets trapped in routine, and we spend most of it struggling through the dramas of living with a small group of people, year after year after year. " (154) And sometimes voices attempting to be helpful will prompt us to question 'if only I tried more, or believed more, or committed more, or gave more'.

The joy in trying to practice the Little Way is that it's not about "trying to fill up your schedule; it's about trying to widen your heart."

Instead of re-doubling your effort and pursuit of the big picture of restoration, justice, unity etc., our focus may be better spent in bringing meaning to the little moments of our day such as responding with patience to a frustrating Facebook post, or, in my case, remembering to pick the vacuum up more often! After all, God's restorative plan for the cosmos can be as big as restoring the planet and mending human relationships, but it is also as small as watering a plant or leaning in to listen more carefully in a conversation.

Three of the main practices of The Little Way are to see, stop and approach; with an emphasis on trying to be with someone rather than doing something for someone. Fixing the problems of the world aren't the concern. Those are out of our control. But we can act in compassion and show kindness to ourselves and others. Thérèse gives the example of sending a kind word, or smile to one of the nuns in her community that is more quirky then most and therefore doesn't have as many friends.

This concept is so easily transferable to James and his own journey of gaining physical mobility little by little and so I decided to add it to this blog. James practices small, daily movements that to the untrained eye may not seem like they are going to be accomplishing much. However, the truth is that it is in these small movements, done with great attention and effort that will eventually lead to the larger gains in the future. The internal battle is that we so readily want the fix, the major gain, the heroic climactic win. But our lives require us to focus on the small, disciplined and sometimes mundane work of little intentional actions.

In James' own unique little way, he demonstrates to me the value of practicing "The Little Way". A spiritual and intentional focus on the small, the here and now, of a little movement toward kindness today without a pressure-filled focus on the larger achievement of goals or dreams. This is what we are all tasked to do in our lives. We only live one day at a time, moment to moment. Our lives consist of a series of moments in time. If your moments do not seem valuable enough in the eyes of our world, change that narrative. Doing little things with great love brings a beautiful purpose, a gift of love offered to others. It is a statement that in the ordinariness there can be sense of gratitude, peace and compassion. This Easter weekend I am reminded that Jesus’ life was full of little moments of love, coming before his great act of love on the cross. He first devoted himself to learning the Jewish scriptures, he visited friends in their time of need, he stopped to focus on what or who was right in front of him. I've been encouraged by "The Little Way" as it brings meaning to the small decisions we encounter each day. I hope you find this practice helpful in some way to you as well.

Half way to our goal!

Thank you to Kevin May for reformatting our blog! You’ll notice the new look and a very exciting feature - you can subscribe finally! Don’t miss a post in this journey we’re on and you are on too as you support us in so many ways. What an incredible village we have! We have raised half of our goal already! We are thrilled about this and SO thankful for all of YOU for helping us achieve this!

Thank you to Kaylea Beveridge for raising over $1000 through the “Share the Love” photoshoot (photo credit goes to her in the beautiful photos above). It was so generous of you to share your time and expertise to support us. Many others are donating items in our silent auction for the June 1st pub night - we will be sure to post some of these items on our website (journeywithjamesmichael.ca) closer to the event so you’ll know what to expect! Tickets for the pub night are selling quick so be sure to get yours on the website or with us in person. Tickets can also be purchased now for the Step onto the Road concert on September 8th.

James continues to work hard daily in our busy therapy schedule.

Monday’s we have back to back physiotherapy with Jo-Anne and Kayla, followed by occupational therapy with Kali. It’s hard work which as the pictures show he doesn’t always like. Building strength is so important as he prepares for SDR surgery.

Tuesday’s we have Grandview every other week and Conductive Education on the off weeks.

Wednesday’s James has a massage every other week and we’re also adding speech at Grandview with Christine.

Thursday’s he has speech therapy with Sarah. She comes weekly to our house and we love her! She’s been using LAMP (language acquisition motor planning) with James sometimes (a program where he can select words on our iPad). She uses pictures to help James communicate as well as working on his sounds and lip and tongue movements - all necessary pieces for language development. A common question we get is what words does James say? He uses yes and no quite often as well as more and again. Many other sounds are developing and is encouraging to hear. Sarah sees and hears things that I don’t so I’m very thankful for her weekly involvement and work with James! She’s very encouraged by his progress. It’s also important to note James’ therapists are all very encouraged (as are we) by his cognition and understanding of language. We trust and pray that the expressive language will develop more. He can get quite frustrated when he‘s having difficulty expressing what he’s wanting. I don’t blame him.

Friday’s we have Conductive Education at the March of Dimes again. James loves this program! While he’s there, Shae and I have time to hang out which has been fun to spend some one on one time with my girl!

Two Saturdays a month we swim at Grandview’s pool in Oshawa. The kids love it! It’s a salt water therapeutic pool (it’s warm!) and good for relaxing James’ muscles after a busy week.

And that doesn’t include the random other appointments (paediatrician check ups, Shae still has check ups at Sick Kids to make sure the hemangioma on her eyelid is not returning, and James has regular opthamology appointments there as well. We’ll be due for another hip x-ray soon to be sure his hips are not subluxed any further than the 30 degrees they both were last year).

We continue to use many pieces of adaptive equipment at home (stander, walker, crawler, and leg gaitors for stretching and standing practice). We’ve also started researching options for a more supportive chair for James to eat. He still needs support in his core and trunk to remain upright for long periods of time and of course eating is a time you want to be sure to be upright. We’ve also started looking into wheelchair options for James as well. There’s lots of options out there and we’re having to decide if we go with a stroller that he can grow into for a couple years (he’s a long kid and is already growing out of the stroller we have) or whether we make a decision about what kind of wheelchair to get. That is seeming difficult as we don’t know what James will require after SDR.

That gives you a little glimpse of our day to day. Feel free to follow me on Instagram or add me on Facebook as I post in the stories daily about James’ therapy and what the kids are up to - photos like this!