When Will We Get It?

It happened again.  My heart is broken as I heard the latest news report on another child with disabilities who was abandoned by his Mom in some woods.  There is absolutely nothing about this tragedy that is right.  Even so, it’s an indication of how hard life with disability can be.

Two years ago there was a similar situation in Philadelphia.  The reflections I wrote then still apply and reposted below.  Church – these stories beg for us to act  – what is your response?

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I am sure that by now most of you have heard or read the story of the 21 year old non verbal young man with cerebral palsy who was abandoned by his mother for more than a week along Cobbs Creek Parkway in Philadelphia while she went to her visit her boyfriend.  This young man laid in the park for multiple days with only a blanket and a Bible.

hospice-1797305_1920The mother, who has been arrested and is currently hospitalized (reason unknown), has been berated by all who hear the story.  I have to agree that this is a horrendous situation.  I am grateful that this young man lived and is now being cared for by CHOP and other family members.  There really is no excuse for what the Mom did.  It is wrong to endanger her son’s life in this way.

Now don’t flog me; while I completely disagree with the actions of the Mom and cannot condone them on any level, I have some compassion for the woman and some understanding of what she may have been up against.

Caregiving is hard!  It’s constant and continual.  I know, I’ve been doing it full time about a year less than this Mom.  And gratefully the person I care for is verbal and independent with all but his personal care.  He also has attendant care that spells me off a few days a week.  Even so, caregiving is exhausting and relentless.

While some may say she should have sought services to help, we are all aware of how difficult it is to get services through the social service agencies and governmental avenues.  If there is funding available the wait can very long, and often appropriate caregiving support is difficult to locate.  Again, this does not excuse what this Mom did.  Honestly what this story tells me is that I am in the right line of work!

The answer to the challenges of life with disability and caregiving is NOT more money or better services (though they may help).  The answer is Jesus Christ and His family.  The only hope we have is the hope that is greater than anything in this world, and carries us into eternity because life on this earth is not all there is .  While we are still in this world though, the answer includes those of us who call ourselves the Church (not any individual location, building or gathering but rather those who claim Jesus as Lord of life and want to live for Him) taking seriously the call Christ gives us to care for one another, to love one another and bear one another’s burdens.

These stories reminds me that it’s time for the Church to step it up.  I wonder if these stories would have had a different ending if some people in the community who are Christians would have come along side these Moms and been there to encourage her, help care for her son and let her know there is a better way than abandonment? 

I don’t know that for sure – there are so many factors involved in every family and life.  But this story gives me a renewed sense of passion to go to work tomorrow and build the passion, capacity and burden within the Christian community to come alongside families affected by disability so this type of thing never ever happens again!

Who do you know in your community who cares for a family member with a disability?  

What can you do this week to share hope and joy to let them know they are not alone?

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Disability Humor and Insight in the Christmas Story

We who live/work in the disability world sometimes laugh about how people often assume that a person with one disability has them all.  For example, because Jerry uses a power wheelchair he must also be hard of hearing so they shout at him, others assume he cannot think or talk so they ask me what he wants.  This is not unique to us, you’ll hear similar stories from anyone who has a disability or special need.

While reading Luke chapter 1 last week I saw this phenomenon in the Bible which neither Jerry or I had ever noticed before.  Here’s how it goes:

Zechariah scoffed and was struck mute when he was told by the angel Gabriel that his wife Elizabeth (who was well advanced in years) would bear a son.  He was told that he would remain mute until his son was born.

I’ve looked this passage up in multiple versions and notes of the Bible and all tell me he was “only” mute – not deaf.  Nine months later when his son was born and Elizabeth named him John the people nearby thought he should be named after his father and began sign_languageto make gestures to him to confirm the name. When Zechariah wrote “His name shall be called John” he was able to talk again.

This story illustrates the words in Ecclesiastes that there is nothing new under the sun.  We think that it is a current world issue that people treat a person with a disability as having all of them. Here , just a few months before the birth of Jesus and the people were treating Zechariah as if he were deaf, though he was not.  It made me smile and snicker.

Upon further thought it also made me see another similarity to today.  Zechariah became mute before his wife became pregnant; roughly he was silent for nine months. Scripture tells us the people learned as soon as he came out of the temple that day that he could not speak.  I have to think that perhaps they didn’t engage much with him once he became “disabled” or they would have figured out he could hear and would have verbally asked rather than gesture to him about the name.

As we move into the new year I have a challenge for you:

Is there someone you know who has a disability or special need with whom you could invest some time to get to know?  Not only might you make their day/week or year – you may also find they have a whole lot more to add to the community and you’ll be richer for it. Don’t get hung up on communicating “the right way” or with the “right words” when you meet someone.  Let them see your heart and get to know them.  It appears Zechariah extended a great deal of grace to those who treated him as if her were deaf.  Others will too!

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

 

Meet My Guy

I have often written about my amazing husband Jerry.  I thought you might like to meet or hear directly from him for a change.  Check out this video blog he posted.  He’s pretty wise!

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.