tradition (n): a pattern of socially or culturally meaningful belief and action that is sustained over time

(Faith’s definition)

The wheel of emotions

I watched the Sick Kids Mother’s day tribute a few days ago. That was also the day that, before 11am, I had already had the long, emotional conversation with school, and some very unproductive conversations with my kids who were home with me. Maybe it was the toll of the really late night that I had, up until 3:30am with J., who ran giggling around the house until shortly before that time. Maybe it was the concern about a slight skill regression I think I see, knowing that one step backwards in a moment can take years to recover. Whatever the reason, I felt every emotion expressed  by the moms on the screen:

• confusion, fear, despair and frustration …
• wondering about how long, and capacity to cope …
• stillness, resolve, determination and tenacity.

In that moment, I recognized the thin line that I navigated, attempting to remain balanced. Like the fiddler on the roof (the kids and I perseverated on youtube clips of this wonderful musical recently), the balance is tenuous, and I’m not sure if I have traditions that can keep me balanced.

Balancing precariously

As a member of our community caring for kids with varying diagnoses, I see the vulnerability we all share. A dad whose son recently had an exploratory surgery, is trying to help his other son deal with the extreme stress of the situation, while managing his (dad’s) own intense fear about the future. With multiple visits to medical and other health practitioners under his belt, he’s a familiar sight within the massive medical complex. On trips for his son. Caring for his son. Supporting. Advocating. Researching. For his son. Encouragements to self care feel frivolous and just stupid. And yet, something’s missing. What are his traditions? How does he keep himself fiddling on the ledge of the roof?

More than likely, like me, he has very few.  And it’s easy for me to see this as I watch him, but so hard for me to help myself as I teeter precariously over the ledge. I don’t want to take the supernatural grace of a loving God for granted. It’s true that He sees me getting wobbly and, like the loving Father and Warrior God that He is, protects, defends, comforts… helping me to return to balance. But He also whispers in my ear: Be still. Rest. Let go. Go for a drive. Sometimes I listen. Often, I do not.

Transparency

Traditions tend to start as meaningful behaviors that we do with others. But, like myself, many special needs parents struggle to sustain the needed scaffolding in their lives. The obstacles are too great, the need too significant.  Friends and family of special needs parents often praise their dexterity and dedication, not understanding the extent of the cost, or the grace… and not sure how to help.

I need others to create healthy traditions and invite my family inside. But, these others don’t always know I need this. We have to help our communities understand that our competence can be a mask, and our resistant is fear. We have to be willing to explain the fear and to keep explaining our lives, as it really is, on the inside. We have to help them help us. I know that to keep explaining costs us so much, but we have to help our communities understand what’s at stake. Someone may veer too far out of balance. And fall.

Start some traditions

In the face of the disappearing, healthy traditions as our kids get older, I’m committing myself to building mini traditions with others on the grass-roots level:

• reminding Tom to invite Robert to basketball with the guys and encouraging Mary to call Susan, even though she seems not to need too much conversation
• texting a quick prayer to little Peter’s mom
• sharing coffee by FaceTime with Diana in the micro-slice to time between chaotic eruptions in our respective homes
• asking Tim’s small group leader to send him the link of the worship service, since he doesn’t participate in corporate worship services because the logistics are too many
• share hysterical  ‘autism moms are like …’ quotes with Terry

Maybe our traditions won’t look like the typical ones, and maybe they don’t need to. As long as they infuse that extra drop of energy… and maybe help the wider community see, hear, and understand the needs of our families just a little better.

Together, we can courageously create inclusive moments of sabbath, solitude, conversation, worship, fun, connection, reflection, recreation, passion and all we need to keep on fiddling.

Blog written by Faith Clarke