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

 

And at the end of the day . . .

If you have been reading my blog for any time you probably know that I am married to this guy Jerry, with whom I also happen to work.  Often people say to us, “I don’t know how you do it, I could never work with my spouse.”

To be honest sometimes we don’t know how we do it either.  And sometimes we have to work through what Doug (who also works with his wife) calls, “Business Card Roulette.”  It goes something like this.  While we are inside the walls of this building my business card trumps yours.  Once we walk out the door that may all change!

Thinking back, in the twenty plus years we’ve been married we have only worked at separate companies for about 6 of those years.  I recall many conversations when we were dating and engaged and dreaming about our future – almost always they included working together.

Was that because we were starry eyed in love?  Most definitely.

Is it because we waited longer than most to marry so we wanted to redeem as much time together as we could?  Possibly.

Is it because we are strong willed and enjoy a good challenge?  Some days it feels like that.

Is it the way God built us?  Likely.

One of Jerry’s favorite lines about working together is:

The best part about working other? We’re together all the time (said with a positive lilt in his voice).  The hardest part about working together?  We’re together ALL. . . THE . . . TIME (said in a different tone to the previous statement).  And, at the end of the day SHE gets to take me home (again with a smiling lilt in his voice).

Are there days when a little more time apart might be beneficial?  Certainly, and over the years we have found a number of ways to create some personal space even in our togetherness at work and home.

Overall though, I am thankful that this is the way God built us and called us together.  There is something very soul settling to know that the one I am one with on this earth shares my dreams, my challenges, my days and my nights.

It may not work for everyone, but I am glad it does for us!

 

To Roll a Mile In His Seat

I speak fairly regularly on the effect disability has on the entire family.  Having lived and worked with disability in my home for more than 30 years I genuinely felt I had a pretty good understanding of the reality of disability and ambulation.

Then I had foot surgery . . . .

To be fair the Doctor told me in advance that I would need to stay off my foot for two weeks.  I was sure though that I’d be able to go back to work after a coupe of days, after all I have a high pain threshold.

After surgery the Doc told Jerry, “now it’s your turn to try to tie her down the best you can for the next two weeks!”  Thankfully I listened and heard what he said – I can do two weeks now off my foot, and a relatively reasonable extended recovery.  Or I can push it now and then have a long drawn out recovery.

Prior to discharge from the hospital a Physical Therapist gave me a pair of crutches.  It didn’t take more than a few steps to realize they weren’t for me!  So then we tried a walker – still meant I had to hop on one foot only, but at least I had more stability.

The walker got me home (with the help of a friend and the lift on Jerry’s van).  But once I was home I took the seat of honor – one of Jerry’s older power wheelchairs.  Now that was the way to travel and survive this journey!  I could keep my foot highly elevated and still be able to mo

elevated foot
Snuggled in his chair, under his Tiger throw, elevating and icing my foot.

ve through the house.  A few days later a friend lent me a knee walker.  I’v
e been alternating the two throughout the week.

You know, sitting in that chair, even knowing that when absolutely necessary I could stand up for a transfer, gave ma a whole new perspective on my husband.  It’s not as easy as it looks to just manipulate that little joy stick and successfully navigate the corners, halls and doorways of a home. Getting things from the refrigerator take a considerable longer amount of time that I ever thought they “should.”  Shutting the blinds, or putting laundry away – it just doesn’t happen in the same way.  It’s hard to balance a meal you’ve just taken out of the microwave on your lap with one hand while moving the chair with the other hand.

Then add to that fun two wheelchairs, and a Christmas tree and the challenge moves to a whole new level.  If you want to see the fun for yourself you have a week or so left to come view our “dance” in person.

On the flip side Jerry, while not having the option to walk for this week has commented several times about, “Wow, you go through this every time you get a meal out for us?”  And mind you – he is “just’ reheating food that other have graciously brought us!   A quick trip to the grocery store becomes a full evening activity for him.  Taking a couple of hangers of clean laundry to the closet really does take about 10-15 minutes to complete.

Yes, this is just a temporary arrangement in our home and lives, but the eduction and appreciation we have both gained will hopefully impact our lives and appreciation of one another for years to come!  I know the laughter and tears from the memories will be there.

Forget that walking a mile in his shoes – I’ll ride in his old wheels any time!

When the Helper Becomes the One to Help

A year or so ago I took an informal survey among my caregiving friends asking them to complete the sentence, “You know you’re a caregiver when . . . ”  The responses ran the gamut from humorous to painful to thought provoking.  They were also plentiful.  If you’d like to read the compilation of all the responses, click here.

Over the last week I have been thinking about one of those responses, “You know you’re a caregiver when you consider your own hospital admission as a vacation.”  Tomorrow I am scheduled for some routine surgery on my foot.  Recovery will put me out of commission for a couple of weeks, but I am looking forward to the rest.

We’ll be in good shape though. Jerry has an excellent team of friends who will graciously step in and cover for all his attendant care needs.  Work is at a place where I can manage a little more time off and ministry events should not be effected by my recovery.

But then the tricky part for me came – I had to acknowledge that I will need some help.  See, it is much easier to acknowledge that Jepush for helprry (or anyone else for that matter) needs assistance.  I have no problem asking for someone else.  As Jerry and I talked we realized that meal help would be needed.  It was a huge challenge for me to contact our church’s meal ministry and ask for a few meals to be provided for two weeks.  It is hard to go from being the caregiver to the receiver of care!

I thought back to other times I’ve had a medical need and how did we do it then?  I don’t remember doing all this scurrying around to prepare the house, or the need to ask for meals.

That’s when it  me – this is the first time I’ll be “down” for a time since Mom has gone.  Two and a half years later and we are still hitting a new “first.” Once again I am grateful in hindsight for ALL she did for us that I took so much for granted.  I wonder if God can let her know that I realize it now?

Yesterday I had a melt down of worry.  Jerry was a bit under the weather which totally changed all our plans for the day.  I wasn’t ready for that – I had my agenda of what needed to be done, and how I needed him to be ready to take care of me. And just like the caring Daddy He is, God met me right there with Luke 12:22-34.  Worrying won’t help me one bit, and in fact can harm me.  Our Abba Father, Daddy God knows our needs and He is m
eeting them.

In fact, once I pulled myself together and the day moved along I was blessed by so many people offering to help us in so many ways.

I am aso grateful that we are not alone.  We are surrounded by a church and friends and family who will and even want to help us if I’ll just let the stubborn pride drop and be willing to acknowledge I need them.

Hands Help Represents Question Human And Solution

 

 

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!