To be with, to walk beside...

[Han] Encounter, acrylic on canvas, 20" by 24"

I was invited to co-present at a Caregiving conference recently. My immediate reaction was “Where do I even begin?” This was not coming from my brimming enthusiasm or confidence, but fear of presenting before people whom I regard as saints, people who put physical, emotional and spiritual effort to care for someone else. They bring tremendous comfort, along with selfless devotion. They are special people who put others’ interests above their own. 

Samantha, my ever encouraging and brave partner reminded me that what was important was our sincerity. In any case, we will be speaking about creative expression and providing a space for caregivers to experience therapeutic artmaking. That’s our area, we will be fine. 

As I delved deeper, I realized I have many reasons to be nervous, as I was sitting on a reservoir of unresolved emotions on caregiving, caring for my own children, including one with special needs. Not forgetting the challenging experiences my own parents faced looking after their aged parents. Being a caregiver myself, I have found it hard to be altruistic. I tend to put my own interests first. I feel like I have battle scars, along with a dose of bitter resentment. So how can an injured soldier smarting in her own pain tend to someone else?

Caring for one’s own family can be one of the hardest things. A common adage shares that external people, no matter how perplexing, seem easier to deal with than spending long hours with family members, especially the ones who seem to savor in your undivided attention and attachment. I tend to agree. Those of us who like our own space find it harder. Much is left unsaid with family but a lot can be felt. The unexpressed expectations can be deafening, the words uttered piercing.

I recall my parents telling me how guilty they felt whenever they tended to their own needs as opposed to their aged parents, pangs of fatigue and upset that they did most of the shuttling compared to their siblings. Old stories of sibling rivalry and buried conflicts would erupt when discussions of collective care responsibilities get heated. Though ultimately, the common affection for the loved one would pull everyone in the right direction.

The process of caregiving can be emotionally rewarding if one is able to find support, camaraderie, understanding, and the ability to share the load as a community. Many fond memories, touching moments and interpersonal personal growth can come through. These can heal many past misunderstandings and open new pathways of being with each other. It’s the bond between family members that holds everything and everyone together.

My own journey as a caregiver has been nothing short of a miracle. An exceptional achievement not explicable by my own efforts. Many helpers in the form of family, teachers, therapists and coaches have been instrumental in aiding me and my children through the years. Raising a child with special needs can be an awakening experience. Awakening not just the love, care and concern but also my most vulnerable fears and protective instincts. The range of emotions I go through mirrors the myriad of emotions felt by my child who bravely faces the multitude that accompanies each day. I found that beneath the deepest place in my heart, there was an even deeper place of love I never knew I possessed. On the flipside, I uncovered an abyss of helplessness and rage that burrow within whenever I witness how being different can be so painfully difficult for others to accept.

Learning to navigate with a new type of compass mentally and emotionally is what I figured. Instead of a linear path forward, I began to relish the circular ones my child and I would take before suddenly emerging on the other side. Some are relays, others are steeple chases, odd sprints but mostly contact sports where we both need to lean on each other, trustingly. I have never wished for things to change but just more benevolent people and forgiving education systems that would embrace the whole child. For I know that every child, special or not, find their own place eventually, at their own pace.

What made my caregiving journey bearable and even inspiring were the helpers I met along the way. The teachers who saw my child’s potential, the therapists who celebrated small wins, and the coaches who discovered hidden talents. The sudden enlargement of what growth and innate talents meant in a person profoundly changed my perception of life. I began to see that beyond the cognitive and physical realms, where many special children struggle, there lies significant strengths in their sensory, emotional, creative and spiritual capacities if we know how to harness them.

Real communication and connection comes through touch, sight, scent beyond sound. Sensing, feeling, touching, observing, looking, and listening – these are the things that only come when we walk closely alongside someone. To be with, to walk beside, to accompany, to be present... When I finally stopped telling, expecting, demanding, trying to change my child, I saw the joy of being with my child. Eventually my child found a natural rhythm to grow at an even pace. Without anyone noticing, we observed leaps and bounds of growth inside, a quiet confidence and genuine sense of safety emerged. A loved and accepted child is an emotionally resilient one, ready to take on the world, a day at a time. The ability to develop life skills and work competencies naturally follow.

If we attempt to instill, transform and shape who we are caring for in ways we think useful, the journey can be arduous and stressful. For it is after all what we wish for the person, not necessarily what he or she wants or could be capable of doing. Both young and old, the people we care for want a voice, to be heard even when they appear to be vulnerable and need help. I realize nurturing a trusting relationship, providing love and acceptance, a listening ear and being present allows the other to grow phenomenally. They learn to draw on their own immense emotional capacities. At first barely noticeable, but with time, the fruits appear miraculously and continues to flourish on its own. The joy, peace and love which reside in both the caregiver, and the one being cared for, is undeniable when both find a lasting bond. In spite of the challenges which still remain, coping as a child or adult who require special care, the bond with the caregiver cheers them on and truly liberates.

As Samantha reminds me, in the end, it is not just the person being cared for who benefits, the caregiver is the true recipient of the gift of unconditional love, patience and grace. The caregiver lives a life enriched with a rainbow of emotions, the highs and lows, from the most intense to the mundane, going distances that he or she never thought could stretch so far. Being a caregiver can be a life transformative experience. The personal growth is immeasurable.

So I think perhaps I do have something to share at the conference that could be valuable. I have, just like all the caregivers whom I will meet, this gift of an enriched life. Though I may not measure up in selfless devotion, I certainly do a good job of walking beside and being present. I share a deep common knowing of the caregiving experience from within. Like their charges, caregivers need to be reminded of their own aspirations, have someone celebrate their small wins and help them discover their creative talents. I can introduce a blank canvas from which they can paint on and rediscover themselves. For every caregiver is an artist with a treasure trove of changing colors and rich stories to tell. Imagine the rich tapestry we will create, art making together. I can share the universal language of art that can carry their inspiring tales. A caregiver's growth journey is indeed beyond words, and art will give it its rightful weight. 

Han Li June

Reaples appreciates Caregivers this weekend at the "Celebrating Life Together" conference, in partnership with Mamre Oaks: A Centre for Adults with Intellectual & Developmental Disabilities. For all the caregivers out there, we deeply appreciate you!