I slid into adulthood as a romantic idealist–eager to change the world in the classroom as an elementary school teacher, then as a children’s ministry director & eventually, & happily, as a mom.
Somewhere along the lines of encountering so many raw obstacles with those I worked with–including broken homes, alcoholism, lack of educational support in the projects of Chicago, & tough child onset diseases–my idealism relented & morphed into something akin to realism. But, my heart never let go of hope.
When our youngest daughter’s body showed symptoms of a progressive neurological disorder, realism courted fear & cynicism, which I then let into my heart. However, as I wrestled then, & continue to now, my faith anchors my hope & brings grace into the wrestling match of trying to reconcile the ideal with the real. The spectrum of my emotions have been widely set on this journey–from anger & discouragement to gratitude & relief. But, by Grace, I have not lost hope.
However, & much harder to remedy, my daughter has. She gave me a brilliant word picture one day when she said,
“Mom, I feel like a balloon whose air has been all let out & is lost to the random flying around a room. Deflated.”
So how do we buoy hope for kiddos with complex medical needs, who have good reason to feel deflated & some days little reason to carry on? How do we keep hope afloat?
Here are a few things I’ve learned along the way:
- Acknowledge their feelings & remind them they are not alone. Take action where you can to support that point: camps help with a like bodied community as do books that tell a story with some victory in the face of adversity. Wishes are an incredible way to give a burst of hope to a fragile body and soul.
- Get to know what buoys your kiddo’s hope. Is it painting? Horses? Friends? Outings? As you figure out and employ external sources of ‘hope-fuel’ help them gain internal sources as well–as those are the most sustainable. Is it faith? Music? Prayer? Journaling?
- Never, ever give up. Ever! It’s easy to give into defeat & discouragement with a constant barrage of medical issues, insurance hassles, medical equipment difficulties, isolation & disappointment but waiting & hoping for a new ‘day’ will rarely prove in vain. When we model this internal hope it helps kiddos see how to hang on to hope.
- On that note, find what buoys your own heart, as you too, will need fortitude to cultivate hope. Is it books? Friends? Walks? Prayer? Work?Music? As you can, insert these life giving fuels so you can keep hope afloat.
Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all. -Emily Dickinson
In all honesty, breathing hope into my daughter doesn’t always ‘fix’ or ‘fuel’ her heart–a difficult truth for this mom who wants to help. But, I never give up & keep on hoping! She will find her way.
And I am cheering you on to do the same with the kiddos who are in your life!