These comments from July 25, 2015 warrant reposting today.
The Angelman Syndrome community worldwide has been reeling this week -- experiencing a horrifying, heartbreaking loss. Never before has my passion been greater that caregivers need support, encouragement, a place for resonance, an adequate rhythm of respite and the kind of hope and strength that only Jesus Christ can give.
Take a moment to read/watch the full news story (July 23, 2015). Click here: "Facing changes to the respite care situation for his 16 year old son, a father took his son to an area park and killed him" and then killed himself.
I'll never be able to thank enough the many people that have poured into our family so that we can thrive amidst the 24/7 weight of "extreme caregiving." Some seasons have been better than others but there's no denying that the way people have come alongside to support us is remarkable. (It should not be remarkable. It should be commonplace for all of us to have enough compassion and margin in our lives to reach out to others who are so stretched.)
While I can't fathom taking the kind of action this dad took, Larry and I (as well as our oldest children Alex and Erin) all know too well the kind of desperation that can be felt behind closed doors when things like difficult behaviors, seizures, diaper catastrophes, cyclic reflux vomiting or sleep deprivation have taken us to our wits end. My heart aches and a sense of nausea wells in me when I consider so many friends who struggle daily with deep depression and/or sense of overwhelming loneliness/isolation caring for a loved one.
Our culture doesn't value caregivers enough, doesn't pay respite staff enough (it's extraordinarily difficult even to find people willing to work this type of job at ANY rate of pay), doesn't encourage enough. Yet there are shining examples of progress. For example, the heart behind Caroline's Cart and practical value it is bringing to families is like a hug from God.
We must pray for the reality of this need for community and outreach to sink in and fast. May all of us to value more highly our opportunities to encourage one another, lead lifestyles that prioritize time to support a weary friend and have courage to ask for help when we're struggling. May we create churches that go beyond just being welcoming places to becoming places that truly ENGAGE with these families, do more than just "be nice" and actually figure out how to carry another's burden.
Lord, help us all.
