Tuesday, July 26, 2016

One Father's Desperation Holds Urgent Lesson for Us All

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. 


Wednesday, May 18, 2016

When Graduation SHRINKS Rather than EXPANDS a Young Person's World


Spring is here in all it's glory and the greens seem more vibrant to me than ever before. I hope you're seeing opportunities to soak up the refreshment of this new season!

Our daughter Carly turned 18 years old this past weekend. And she'll graduate from high school in just three weeks. For Carly this is a dramatically new 'season' and you might be surprised that there are some very unsettling things about this for her dad and me—things that are causing us some grief. I hope you won't mind that I share some personal reflections about it here because I believe God has something to say about this to each and every one who is reading today. 

As other students head off to college, explore new jobs or take a 'gap' year to discover their true passions, Carly will begin a transition program a few miles from home in a building filled with several other young adults who, like her, experience significant developmental disabilities. While there will be plenty of important and enjoyable activities, a skilled and caring staff, and new friends among her classmates, there will be no typical students in that building. None. Unlike high school where Carly participated in the mainstream choir class and walked halls with typical teens, she will now be more isolated from 'normal' society than she has ever been before. Occasional school outings to places like the grocery store (to learn money skills), some family activities and church attendance will be the extent of her exposure the 'outside' world.


Typical high school graduates are seeing the world open up before them; opportunities and relationships are blossoming. But for Carly, becoming an adult and finishing high school means that life will be changing in very different ways. In contrast to Carly's peer experiences, her world is in high risk of shrinking. Unless somebody thinks creatively and takes initiative on her behalf, Carly's opportunities and relationships will immediately start narrowing after her last day of high school.

Carly is highly social. Yet she is fully dependent on others to bring her places and help translate her efforts to communicate and engage with others. Her social connections will continue to narrow unless her caregivers, church and community are intentional about optimizing connectedness for her. Carly also has gifts to share with her church and community. Yet she is fully dependent on others to make room for her and assist her in plugging in. Unfortunately, I see a world that is too naïve to notice and too busy to join us in exploring and embracing the possibilities. So I'm praying for a culture change. I'm also praying that God would give me fresh energy and vision to see the opportunities for Carly (and others like her) and show me how to facilitate connections and belonging for her in a world that doesn't really understand what God has said:

“Those parts of the body that seem to be weaker are indispensable, and the parts we think are less honorable we treat with special honor." 1 Corinthians 12:22-23  
"God has given each of you a gift from his great variety of spiritual gifts. Use them well to serve one another." 1 Peter 4:10  
"Jesus said, 'Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these'" Matthew 19:14

How about you?


Have you noticed any adults in your congregation who have disabilities? If you have, you might praise God for the caregiver or group home staff who have been willing and energized enough to initiate that outing! You can greet these friends — BOTH the caregiver and the resident. You can thank group home staff for their supportiveness. You can greet these friends and ask questions about their day as you would with any other friend. The few moments you spend chatting with them may be among the very few 'outside world' interactions they have all week.

How can you help adults with special needs in your congregation find ways to serve and increase their sense of belonging in the community? The church is not complete without these friends. More than just being friendly with each other, we must think of each other as ministry partners and invest in helping each other share in the life of the church and in life with Christ.

Does it cross your mind that there are numerous adults in your community who are invisible to you? Perhaps they are there and you just aren't paying attention. Perhaps they are not there because nobody has made a place for them. There are a range of obstacles that keep people with special needs from attending church. Although building accessibility and transportation can be challenges, the more frequent issue is emotional. None of us wants to keep going where we aren't noticed, cared about or feel like we belong.



Tuesday, April 26, 2016

Who gets to decide whether my daughter's life is worth fighting for?

I heard some alarming but empowering news last week during a meeting of the Twin Cities Disability Ministry Connection. Prenatal Partners for Life founder Mary Kellett explained the dangers and opportunities involved with healthcare policies that threaten the very lives of people like my daughter Carly.

You see, Carly has Angelman Syndrome so some people believe her to be a burden on society. Because she is cognitively and developmentally challenged, her life is considered by some to have less value than mine. While I've been well aware of this fact, I was rather naive about how that could impact the care she receives when she is hospitalized. But then I read Bella's Gift by Rick and Karen Santorum earlier this year. And then I heard Mary Kellett talk about how her son died. And WHY he died. Bear with me while I try to explain the issue here.

Many hospitals have policies granting themselves rights to decide when it is time to discontinue all treatments and “allow” a patient to die. Regardless of a patient or family’s right to make their own healthcare decisions, physicians and hospitals are being given the right to make “medical futility” decisions based on their own judgments about the value or quality of patients’ lives rather than the efficacy of specific treatments or therapies available. “These policies and laws have been crafted to shield physicians and hospitals from legal liability for hastening patients’ deaths,” according to the Human Life Alliance (HLA).

It is not just people with disabilities or special needs who are at risk.  Patients who have experienced serious medical crisis after things like gunshot wounds or motor vehicle accidents have also become vulnerable to the dangers of these policies. There are numerous cases reported where medical staff focused on the quality of a patient's life if he/she did recover instead of focusing on treatments and surgeries that would foster healing and recovery.

The HLA cautions, “before you or a loved one are admitted to any hospital, ask for a copy of the hospital’s ‘medical futility policy’” so that you are not caught unaware and unprepared.

Mary Kellett shares her powerful personal story about how these policies tragically impacted her family. You can read Mary’s testimony before the Minnesota legislature about Minnesota Senate bill SF2238, titled “Hospital Futility Policy Disclosure.” Although the bill passed the house and senate in 2012, it was voted down by the Governor at that time.

Let’s pray that bill will be successfully reintroduced in a future session!

In addition to asking to see a provider's policy, Mary encourages families, "you can invite your pastor or priest to attend a Care Coordination Meeting when significant life and care decisions are in the balance." Their presence gives a family comfort and confidence while conveying a powerful message about how the family values life as they advocate for a loved one.

To learn more about prolife healthcare issues, look for more information at the Human Life Alliance  and Hope Network.


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