Love Our Village

The saying “It takes a village . . .” can be true of much of life.  Today as I was driving to Spruce Lake where we will host our first two weeks of Family Retreat for families affected by disability I was so thankful for those in “our village” who make this, and so many other parts of our lives easier.

People like Denise, who I asked to pick up a prescription that wasn’t ready yet before I left and bring it to us at camp when she comes.

Guys like Scott, Roger, and Gary who step in while I am at camp and Jerry is at home to help him get up each morning and to bed at night.  Then there’s Ron who comes to camp (hauling much of our equipment) to help Jerry here so I can focus on my role.

Ginny, my sister who said dinner will be provided the night we come home exhausted from two weeks of camp.

Once I pulled into Spruce Lake there was Lucas who offered to carry my suitcase to my second floor room.

And the best thing about our village?  They love Jesus, and they know by serving us they are serving Him.  Can’t wait to turn some of that love around these next two weeks to serve other families affected by disability at Family Retreat!

“Behold! How they love one another.”

Want to get more of an idea of what happens at Family Retreat?  Follow our hashtag #JAFjourney2joy for the next couple of weeks.

Disability Privilege

As I grow in my understanding of urban ministry I have had to wrestle with the phrase “white privilege.”  As I’ve thought about that concept, I came to realize that Jerry and I live with “Disability Privilege.”

Friends, or those we meet, often comment on how much we are “on the go.”   The unspoken remainder of the sentence is “especially for someone with disability.”  Though some courageous commenters will ask “how do you do it?  Can you get an wheelchair on a train/plane or whatever means of conveyance we are awaiting?”

I don’t typically think about what we do as anything special or unusual, it’s just our life.  We travel several times a year for the ministry, both within our region and across the country.  We try to get away a couple of times a year for some vacation or rest time – we’ve spent that time driving around the US, relaxing at the beach, visiting family, hosting family, cruising to Alaska and some points in the Caribbean (different trips – ha!).  And we make sure we get to a number of baseball games each year and other local events.

We have a number of  friends who live life affected by disability and travel even more extensively, but honestly, we are part of a very small group.  The larger number of people affected by disability in this world struggle to get an appropriate wheelchair, support services, housing they can afford and maintain, reliable attendant care or transportation so they can secure a job.

Even on our worst days about 90% of people with disabilities around the world would love to have the “privilege” of working through our challenges.  It’s good for me to be reminded that we are blessed beyond measure.  Not because of anything about who we are, but because of the graciousness of our God.  It doesn’t even mean God loves us more than those who struggle – He doesn’t.  What it does mean is that we have the opportunity to use the blessings God has given us to bless others.  That is a fun and exciting challenge in which to participate.

To Whom Much is Given, Much is Required.  Luke 12:48

 

Riches in Secret Places (part 2 of 2)

 

If you missed part one of this story you can read it here.  It sets the stage for what follows.

A little after 6:30 the phone rang, it was Jerry’s cell.  I answered “What’s wrong?”  He said, “I am coming home, I have a wheelchair problem and need your help.”

A few minutes later he pulled in the driveway.  The cord that supplies the connection between his wheelchair motors and joystick came apart.  This had happened a few times recently, in fact a new wire was recently ordered.   Today when Jerry tried to plug it back in while sitting in the van in the restaurant parking lot there was a spark.  This is NOT GOOD when he is still sitting in the chair and has no way to get out of the van.

I realized that I would need more light and space to maneuver than I had in the van if I had any hope of fixing this.  Now imagine getting 500 pounds plus of stationary wheelchair and husband out of a full size van under just “wife power.”  I tugged and pulled and grunted, trying to balance the need to use enough force to pull him over the hump and onto the van lift, without so much force that I’d loose my balance and topple over, or more likely plop off the lift.

Jerry on lift

Mission accomplished, now to push him up the ramp, in the door, and to the room where I could transfer him out of the chair so I could safely try to fix the chair without endangering him.  After about 15 minutes it became clear that the spark in the parking lot did more damage and this was not going to simply be a “reconnect the parts” type of job.  We deemed the chair temporarily out of service and I trudged to the garage to get his old back up chair.

I got to the garage only to find a problem there; the large power door would not raise to get the other chair out.  Thankfully adjusting the door sensors was a simple and easy fix I could do.  As I took the old chair to the house I realized that I was now at least 15 minutes behind schedule, MY schedule, for getting to the Y.  Thinking I may have to let that part of the schedule go, I consoled myself with the thought that since Jerry was already up early to go out to breakfast, maybe he would take me to breakfast instead!

At about 7:15 just as I am about to help Jerry into this chair he said, “I don’t think it’s worth going back to the breakfast.  I think I’ll nap for  half an hour before I go to the office.”

How do I respond?  I really wanted a reward for all I had done, and thought that going out to breakfast together was a great plan.  But I also thought about how worn down Jerry’s body was and how early he had gotten up.  After a short debate in my head I replied “Ok” and he shut his eyes and was immediately asleep.

Gathering my wits about me, I headed to the kitchen to make my breakfast and have that quiet time I planned on an hour ago;  all the while muttering to myself, “my life is not my own!”  This is not the first time I’ve uttered those words.  Nor is it the first time I’ve heard the still small voice of God respond with “And the problem with that is? “    Consistent, isn’t He?

And then God reminds me . . . what is it I want my life to be about?  In high school I once had an assignment to write my epitaph.  I wrote “A woman who loved and served God by loving and serving others.”

“So my daughter,” God gently asked, “isn’t that what you are doing?”  He makes a good point!

Could I trust God enough that if I do what He is calling me to do now in this moment, perhaps He could help me find another opportunity to swim?  Would it not follow that if I were truly loving and serving God by loving and serving others that my life would not be my own?  In fact the Bible tells me that I am not my own but have been bought with a price (I Cor 6:19-20).  So yes Lord, my life is not my own, and that’s a good thing.

Nap well sweetheart!  And Lord let me again rest in the assurance that You have bought me and I am Yours.  Thank you for the riches you have stored for me in secret places, that lead me to You.

Riches in Secret Places (part 1 of 2)

This was first printed in a book entitled Hope published by Calvary Church Souderton, PA in 2012.  It is edited and reprinted here with permission.

Having worked with people with disabilities for most of my career, and now being married 16 years to Jerry (who was born with cerebral palsy and uses a power wheelchair) one might think that I have a handle on what it’s like to live with disability in the family.  Some days I do, but surprises pop up in the most unexpected ways.

Early on one of those surprises was the pace of life – it became so much slower!  Things I was able to do in a matter of minutes before could now take closer to an hour; there was no such thing as quick!  Just to load in and out of the van adds 15 minutes to anything we do!  Spontaneity is really not in our vocabulary.   Yet even as the pace of life became slower; the demands on my time and life increased significantly.  Essentially I have more things to do in less time.  Slower and fuller – what a combination!  Disability has been described as a part time job; and sometimes it feels like a job without benefits . . .

But there are benefits, and one of my favorite passages about those benefits is in the Old Testament in the book of Isaiah.   Cyrus is the man God has appointed (though Cyrus hasn’t acknowledged God’s role in his life) to lead the children of Israel out of captivity.

Isaiah 45:2-3    I will go before you and will level the mountains I will break down gates of bronze and cut through bars of iron. (My note – how’s that for making things accessible!)   I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the Lord, the God of Israel, who summons you by name.

Treasures of darkness, riches stored in secret places.  I think it is safe to say that if someone (especially the God of the Universe) offered treasures and riches to us we’d love to accept if there were no strings attached; but there are some strings attached, so to Metal Doorspeak.  Isaiah tells us those blessings are found in darkness and secret places.  Not usually places we willingly go – especially if the path is not well marked or heavily traveled.

 

I am not saying life affected by disability is all darkness, but there are some tough times; and it’s ok to admit that.  There are things that just don’t make sense, yet because God is there and He is the one making the way before us, we know the adventure is not in vain.  Don’t miss the last part of verse 3 – God says He give us these treasures and riches in darkness and secret so that we may know that He is God and He is personally and intimately involved in our lives (summoning us by name) whether we are ready to acknowledge that or not.

Can I tell you about one of those days in my life?  I had a plan, my plan.  I had gotten Jerry up early (which means I was up even earlier); at 4:00 am to be exact, for a 6:30 am breakfast meeting. Once he was out the door at 6:00 I laid back down for 30 more minutes before getting up to have a quiet time and head to the Y.  It seemed like a good idea to me, and one that would surely honor God because it included taking care of me both physically and spiritually. . .

Check back here tomorrow for the conclusion.

 

Feel Good Stories Don’t Always Work for Me!

Ok, I may have to stop driving and listening to news, even the “feel good human interest” news stories. In fact, two of those that I’ve heard in the last week had me driving down the road shouting, “NO, NO, NO, NO!”

The first was a news story that a clerk in a chain pharmacy was found helping a customer who was blind do his shopping. Really? That’s news? Now don’t get me wrong, I have no problem with what this employee did. But is that seriously deserving of a news story? Have we as a society really sunk so low that someone who is paid to do customer service, and actually does that, is a hero worthy of a national news report?

The second story came this morning, and rose my ire even more. The audio portion of a video that has gone viral was played on the radio. Apparently in this clip a girl who was identified as a cheerleader and very beautiful took a large cookie to a student with autism and on the cookie it was written, “Will you go to the Prom with me?” One can hear the excitement in the young man’s voice as he read the message and responded with a jubilant “YES!”. The radio host went on to ask what was it about a girl who is so beautiful and had so much going for her that made her want to ask a student with special needs to be her date?

I almost had to pull over to vent without hitting anyone!

Prom Dates
 

Me and my favorite (and only) Prom Date!

 

Why do we have to emphasize the difference between the two students – and that one is beautiful and has it all together (or so it looks) and the other who has more obvious needs. Is it so impossible to think that perhaps this girl has a heart and has actually developed a friendship with this male student? Might she enjoy spending time with him? Maybe I am just brain washed from being married twenty plus years to someone who would be considered a “special needs student” in today’s systems. And I am proud to say some of the people I most have enjoyed spending time with through my life are friends who the world labels as “Special Needs.”
Yes, there is also the another possible side to this story. A mom of a student with special needs called in to the station and noted the rise in these types of stories and how they go viral so quickly. In her experience (a separate story) the typical girl who invited her son’s friend with special needs to the prom did it to achieve her 15 minute of fame – and then abandoned her “date” at the Prom. Oh may it not be so.

I appreciate that there are more news stories that paint people affected by disabilities and special needs in a positive light. I pray the story I heard this morning is legitimate and this girl finds she has the best prom date ever and thoroughly enjoys her time with her friend. Maybe I am just too simplistic, but can’t we all just treat one another with the honor, dignity and respect we each want to receive? Can we drop the labels and build bridges over the chasms of differences?

I know it won’t happen overnight, but maybe if each of us stop to think before forwarding a “heartwarming video or story” we may understand there is more than one side to every story (including the fact that I could be off base on what I share here).

Pastor Appreciation

October is designated Pastor Appreciation Month. I realize the month is nearly over, but time for a true confession that will hopefully help you see life differently.

rural churchWe (those of us in disability ministry) frequently try to urge “the Church” to understand the impact of disability on a family. We talk a lot about the added pressure and demands parents experience.

A number of years ago Jerry and I learned of a pastor in the region who had a child with a disability (there are several in that role; I am trying to be vague enough to protect their identity!). We tried to reach out to this pastor in a variety of ways, through others who knew him and those in his church. We were never able to make a connection and after a period of time we “gave up” thinking that he was probably a bit full of himself.

Several years went by with no additional attempts made on our part to connect (perhaps we were full of ourselves writing him off like this). At one point Jerry felt God telling him to pray for this pastor every time we were reminded of him. Some time later a tragic situation occurred that necessitated us to communicate with this pastor. From that event we built a relationship, in small doses at first, which grew to a deep respect for, and a solid friendship with, one another.

That was when it hit us – this pastor is a father of a child with a disability. We knew this, but this was the first time we really acknowledged how that extra pressure may impact him as a pastor. Had we first encountered this pastor as a “dad” we would have looked at his life with a great deal of compassion and support. But because we failed to see him as a dad, but only as a pastor we lost sight of the dramatic needs he and his family experience due to disability and made a very unfair and untrue assessment of him.

I (and Jerry) am grateful for this perspective change we gained, and the friendship we now share with this pastor and his family.

Why do I share this story? For two reasons. One is to let you know that even those of us who are disability ministry professionals make mistakes; so allow yourself some grace if you are not always sure how to reach out or connect with someone who has disability in their family.

Even more though, as we focus on pastor appreciation this month I’d like to encourage you to think about any pastor you may know who have a loved one with a disability or special need. In addition to “typical” ways you might appreciate a pastor what can you do to encourage a pastor who is also a parent, child, spouse or sibling of someone with a disability? If you need a few ideas to kickstart your thinking consider these, but don’t consider this an exhaustive list by any means:

  • Pick up some extra groceries on your shopping trip; it may be hard for them to get out
  • Rake leaves, shovel snow, weed gardens, wash windows without being asked
  • Clean and vacuum their car
  • Spend time learning from them how to interact with and care for their loved one
  • Extend an extra measure of grace to them when life doesn’t go as planned
  • Give some gift cards to local restaurants that deliver for long days of appointments and therapies
  • Give the family an extra week of paid time off and scholarship them to a week of Joni and Friends Family Retreat.

One last thought, don’t forget about those who are still pastors in their heart, head and gifting but due to their own disability are not currently serving in a formal pastoral role. They would likely enjoy a visit from you, and can benefit from some of the same ideas above. You may find that they can still serve in a pastoral role if you just think outside the box a little!