Reflections

Stephen

Today I joined with about 200 other people to celebrate the life of my friend Stephen.  Stephen's mom shared that when he was born nearly 31 years ago she was afraid and didn't know what to do or how to parent a child with his disabilities.  It is appalling to hear things the Doctors said to them, just a short 31 years ago.  But praise God she and her husband joined forces to raise Stephen, along with their two daughters.  Through the journey they found their source of strength, hope and joy in Jesus.  In the 12 or so years I've known the family (and from hearing others it goes back longer than that) his Mom and Dad are perhaps the most accepting, loving and humble people I've ever known.  Every memory I have of Stephen, and most of those recounted by those who shared, are of his never ending smile, his zest for life, his positive attitude (one of Jerry's favorite stories is his family trying to teach him the word "bad" and he wouldn't say it - he would only answer "good" when asked how he was!), his attitude of gratitude, and his joy of throwing kisses to every woman he encountered!  

Stephen was not a man of many words, but the words he spoke, and the way in which he loved and encouraged people impacted more lives than many who supposedly have more skills, abilities and education.  

Celebrating Stephen's life brought back memories of some of my other friends who were born with developmental disabilities or cognitive impairments.  

Charlie

I think of Charlie, whom I had the joy of being his "houseparent" when I was just in my early 20's,  Charlie was in his mid to late 40's at that point.  I still smile thinking about the times we'd be out at a store and Charlie would want to show me something.  He knew lots of people, but didn't have a great memory for names.  So most often he'd call me "Mom."  The looks we got were priceless as people saw a 40 year old black man calling a 20 year old white girl mom!  But even more I remember Charlie for his profound wisdom.  I wish I had written down the "Charlie-isms" I heard over the years.  I can't share a specific one, but Charlie had a way of weaving his words, to say something so poignant that cut through all the fluff and went right to the heart of the matter.  I have no doubt that on more than one occasion he spoke straight from the heart of God to me.  We were living on the other side of the country when I got the word that Charlie had died. I felt like my heart had broken.  Jerry looked at our budget every way possible to try to get me back to his service, but it just wasn't to be.  

Leroy (giving me a back rub on a camping trip)

Then there was Leroy, what a goofball (and I mean that in the most endearing way!).  Race cars, motorcycles, dirt bikes, cowboys and anything rough and tumble brought Leroy such joy, though the heart condition he had meant that he watched them more than partaking.  Leroy idolized my best friend's husband.  They lived in southern CA, and we lived in northern CA (I was also Leroy's "houseparent.")  One time I took him with me on a trip to visit them.  Leroy and Bruce went out to the desert to dirt bike while Susan and I enjoyed a girls visit.  You would have thought Leroy had received "the trip of a lifetime", and maybe he had - though he also enjoyed the camping trips we all did, and vacations to Hawaii, Colorado, Lake Tahoe.  Leroy was one of the ushers at our wedding.  I remember that he was so thrilled to walk the first pretty lady down the aisle on his arm and then proceeded to sit down with her.  He was surprised when someone went to get him and told him he didn't get to sit yet - he had more pretty ladies to walk down the aisle!  

Oh, now that I've gotten started talking about my friends, I could keep sharing stories of Lee, Allen, Robert, Bill, Nam Sun, Randee, Diane, Barbara, Dorothy, and on and on . . . . maybe they'll be future posts.  

With all these friends, and so many more, we did life together . . . day in and day out . . . that's what made it so memorable.  They knew the good and bad of me and loved and accepted me anyway; as I did them.

I juxtapose the celebration of Stephen today and the memories of these friends, with a news story a friend shared with me this weekend.   Read the story here.  In short, a teenager with similar disabilities to many of my friends was found wandering the streets in Washington state.  When the police contacted his family they "were not interested in taking him in."  Really?  I know I don't know the full story, and yes - life is HARD when disability enters the picture, so I need to be careful about judging; and focus my energies on praying for him and his family, and be grateful for those who are trying to help him.  

If you are someone caring for a person with a disability; thank you!  Your investment in their life, and the example you set for the rest of us cannot be overstated.  If you are not caring for someone with a disability, but know someone else who is - walk their journey with them please . . . you may make the difference in a family being able to continue their journey together; and likely you will be changed forever!

A few of the amazing Moms I know who are raising incredible kids!

Who Do I Ask?

This morning in Mark chapter 8 I read this:

14 The disciples had forgotten to bring bread, except for one loaf they had with them in the boat. 15 “Be careful,” Jesus warned them. “Watch out for the yeast of the Pharisees and that of Herod.”

16 They discussed this with one another and said, “It is because we have no bread.”

17 Aware of their discussion, Jesus asked them: “Why are you talking about having no bread? Do you still not see or understand? Are your hearts hardened? 18 Do you have eyes but fail to see, and ears but fail to hear? And don’t you remember? 19 When I broke the five loaves for the five thousand, how many basketfuls of pieces did you pick up?”

“Twelve,” they replied.

20 “And when I broke the seven loaves for the four thousand, how many basketfuls of pieces did you pick up?”

They answered, “Seven.”

21 He said to them, “Do you still not understand?”

I couldn't help but think how much I am like the disciples (when in fact I am called to imitate Jesus, not them),  How often have I heard or read a word from God and instead of asking for the One who spoke it to clarify it for me, I turn to others to ask (verse 16).  And  often like the disciples, I miss the right answer by doing this.

Some commentators say that the disciples were really trying to figure out which one of them they could blame for not bringing bread.  Even if that is what they were doing rather than carrying what Jesus said, I can still identify.  There are times I miss the point of what I've heard from the Lord only to divert to another topic to take the heat off of me needing to respond.  

Wishing for yesterday, missing today

I've mentioned it before, but I feel like I missed a lot of summer.  Well, maybe I didn't miss it, but I feel like I didn't get enough of it.  It happens most years like that because my work load is so heavy in the summer, and this year our vacation was sideswiped by illness.  So Jerry and I whine and comment that we still need more time to go to the beach, or be outside, or  whatever else we think would make us feel like we had more summer (though we did get 11 or more baseball games in - that's summery!).

Have you seen the picture floating around social media that says, "My favorite color is October"?  That's run across my page several times.  The other day I got to thinking about that.  When asked about my favorite season I typical respond with "autumn."  I love the often still warm temperatures while also feeling the crispness in the air in the morning and evening.  And I certainly enjoy the beautiful colors of trees and even the sky.  

 

So I had to ask myself, 'if I enjoy fall so much and we are moving in that direction, why on earth am I whining that I need more summer?'  I came to realize that I could loose on both accounts.  If I really do enjoy autumn (and I do) by whining about the loss of summer and trying to regain summer days I could risk missing out on the beauty and joys of the fall season.  

So here's to living in the present.  I am going to try to not borrow trouble by worrying about the reports circulating that we'll have  terrible winter (nothing I can do about that!) and I am going to try to enjoy each day as it comes in these waning weeks of summer, and then move joyfully into the beauty of autumn.

To everything there is a season . . .  Ecclesiastes 3:1

He (God) has made everything beautiful in it's time.  Ecclesiastes 3:11

Guilt, Need and Call

Recently I've been struggling with guilt.  Not over something I have done, but more about what I have not.  It comes from posts on social media, stories on the news, headlines in the paper and songs that say, "if not you, then who?"  I am admonished by these reports to pray more, step up and act, sign a petition or tell others and together we can combat sex trafficking, ISIS, bring imprisoned and persecuted Christians home, feed those who are starving, and provide a fair wage and working conditions for the many women and children forced in slave labor, among other horrendous needs both in this country and around the world.


There is no doubt that we live in a fallen world that seems to fall more every day.  There is also no doubt that God wants His people to "act justly, love mercy and to walk humbly with our God."  (Micah 6:8)  I care about the people caught in these issues and want to see justice prevail in each of these situations.  But sometimes I feel guilty that I am not doing enough.

Then I think about my work and life; maybe not daily but at least several times each week I hear stories of someone's accident or illness that left them or a loved one disabled, the challenges of living with disability in a world that doesn't always get it, or even worse the hurt and pain that comes from someone in the local church responding to someone with a disability in a way that doesn't represent God's heart, or the trauma in a family when  disability takes time way from others.  I could go on and on with examples.  Sometimes these stories come from our neighborhood, sometimes from our region, and even from around the world (yes, the photo here came to our attention at the office this week when someone sent it asking us to pray and help as able).

But I, and those I have the privilege of working with, don't just listen to those stories.  We pray with the person, share a word of hope that is found in Jesus.  We strategize and work toward moving people affected by disability from the margins of our society to the mainstream of Church and community life.

Then I come home and read the headlines and stories referenced earlier and feel overwhelmed.  "Lord, what I read/see is horrendous; how it must grieve Your heart."   I wonder how I can do anything more and God gently reminds me that a need is not a call.  There are many needs that exist out there (even some in the world of disability) that I am not called to meet or respond to.  I need to be open and listen to God's direction for me, but when He doesn't call me to meet a need I can continue to pray for those He does.

As I release my false guilt, I'll lift you up in prayer for the needs God calls you to meet; will you do the same for me?

Rugged Beauty

One of the blessings in my life that gives me great joy is that we get to travel . . . a lot!  Especially for a family affected by disability.  

I grew up in New Jersey and when I moved to Denver to go to school my Dad told me that I was a western girl and would never move back east.  For many, many years I fulfilled his prediction, living in Colorado and California.  I would have been happy to stay out west, but then God and my hubby intervened and back east we moved.  I am grateful for our time in PA and have come to love our home, our community, our friends - our life here.  

Still, I have to say there is something in me that draws me westward . . . . as we flew last week I snapped these photos of the rugged beauty that calls to me.  Some may see dry barren land . . . the colors and beauty of the desolation call to me.

Sleep - the beauty of it all!

To say our summer (or if you want, even go back to spring!) has been a whirlwind and packed way too full would be a significant understatement.  This past Saturday evening we returned from a 10 day trip to southern CA.  We spent a few days with friends and then a week at the Joni and Friends International Disability Center.

From the time I got up Sunday late morning I was "off."  I can't really describe it other than to say I felt like a wreck.  Literally the only way I could keep from crying for several days was to bite my tongue!  I got piles of laundry washed and put away, grocery shopped to fill our fridge, paid our school tax bill (that alone was enough to make me cry - but that wasn't the reason!) and even went back to work on Tuesday though I told my co-workers that I was going to hole up in my office; something just wan't right.

I asked Jerry if this is what it felt like to experience a breakdown, but my processing seemed too rational for that to be the case.  Finally the light went on in my head - perhaps I need a little extra sleep (perhaps sleep deprivation kept me from realizing that earlier!).  Wednesday, after getting Jerry up and going I decided to lay back down, thinking maybe I'd sleep until 10:00.  When I rolled over and looked at the clock it was 2:30 pm!

As I got up I thought that I might be feeing a bit better.   I spent a whole 5 hours up that day, doing only minimal tasks before I just couldn't keep my eyes open and had to go back to sleep!  I won't tell you how much I slept this week (and honestly I don't think I've met my full quota yet, I am thankful for a low key long weekend!). But I longer feel like I am going to cry just at the thought that someone somewhere is wearing a hat that may drop!  I can even smile and interact again with people; and feel almost human again.

Why am I sharing this with you?  For these reasons:
1)  Sometimes sleep is the most spiritual thing one can do.  It's not always the answer, but too often I think I overlook it as the answer.  In this particular situation I didn't need to pray more, read more, exercise more, or eat better (though all good things to incorporate more of in my life!).  I needed to let my body rest, heal and be refreshed!  And from the encouragement of our chiropractor - I will try to continue to let my body tell me how much sleep it needs and not fight it with my to do lists.

2)  I am finite.  My superwoman cape is NOT at the cleaners - I do not have one, nor do I want one! It's ok to admit I can't do it all, and it's even better to stop trying to act like I can.  More often than not I need to remind myself that it's ok to stop.  God made my body to need rest.

3)  I may need you to help me remember from time to time that it's ok to say no and to take some down time.

Good Words to Rest On!

Caregiver, Caretaker of just plain Suitable?!

If you follow Jerry or me on Facebook. or in real life (what a concept!) you likely know we are in southern CA this week at the Joni and Friends Home Office.  We are here because as a ministry overall we are changing the software we use for our donor relations management.  I could wax eloquent about how excited we are (seriously!) for this change; but that's not my purpose tonight.

From our office only Jerry and Glenna (our Admin Asst) are required to be part of the training.  I came along to assist Jerry with his personal care needs.  For the most part I spend the hours they are in training in the lunch area of the Home Office and set up my own little office space and work on projects that have been waylaid. 

From my "corner office" vantage point I see many of the Home Office staff pass by throughout the day.  A large number of these coworkers are new faces and names to me.  I have tried to introduce myself to as many as possible.  Usually that introduction involves mentioning that I am here to assist Jerry.  

Today one of the new ladies I met sat down next to me and said, "so you said you are Peter's caregiver?"  I replied, "Well, I am here with Jerry, not Peter and I am his wife, his coworker in the ministry and also his personal care attendant."  

Her question got me to thinking about something I've pondered for years . . . am I a caregiver or a caretaker?  And what is the difference?  

According to Webster.com  a Caregiver is a person who provides direct care (as for children, elderly people, or the chronically ill) and a Caretaker is a person who takes care of buildings or land while the owner is not there OR a person who gives physical or emotional care to someone (such as a child, an old person, or someone who is sick).

So while the words are interchangeable to some degree as they reference my role with Jerry, here's how I see it (not that you asked, but you seem to still be reading along with me).

I am a caregiver to Jerry when I assist him with his personal needs, getting in and out of bed or his wheelchair, etc.  Most of the time I just see that as part of what it means to be the wife of Jerry. Sometimes when I've done something ornery (who, me??) we laugh and I remind Jerry that I am "suitable" for him, or just what God deemed he needed!  That's what the Bible says in Genesis 2:18-20  - that God made for man a companion suitable for him.  

So yes, I am a Caregiver,  But I am also a Care Taker, though not in the Webster.com definition noted above.  Sometimes I feel irked that people think it's all about what I do for Jerry.  Oh make no mistake, I TAKE a lot of CARE from him as well; usually more than I give.  

But that's the give and take of life . . . and it's not just disability related.  So which are you - a Caregiver or a Caretaker?