Still Driving Mr Jerry

In the fall of 2017 I put up a post entitled Driving Mr Jerry. Almost two years to the day, we just our van back after a week in the shop, and Jerry is now in week two using his old chair, while wait for repair on his typical chair. I needed to be reminded of the truths in the original post. Since I did, I thought you may too. May you be blessed and encouraged by this throwback Marriage Monday.

This is week three of Jerry using his back up wheelchair while waiting on a new right motor for his regular chair. That means he is unable to drive his van.

If you live with disability in your family you know that this is not all that unusual, these things happen. Paperwork drags on and on, calls don’t get returned, repairs can take weeks, if not months. Most of us would win a Gold Medal if waiting or insurance hassles were Olympic sports.

Yesterday Jerry had scheduled service for the lift on his van. There was no sense in him going along for the ride. I rearranged my schedule and took the van to the appointed service, about 45 minutes away from home. The shop is fantastic and provides a nice waiting area. I packed enough work to keep me busy for three years.

322615_3126101352345_993835468_oPrior to the van appointment I met with someone who has a child with a disability. My friend commented about how weary she is. She went on to say one way she keeps going is to realize what a privilege it is to serve Jesus by serving her child. She asked if that was the same among spouses?  As I thought about it she went on to describe how my trip to take the van for service was serving Jesus.

My life goal has been to love and serve God by loving and serving others. Given that, my friend’s comment should have been no surprise to me, but it was. I love Jerry, which means that (most days) it is a pleasure and joy to assist him. But I had somehow forgotten that by serving him I am also serving my Lord.

That reminder put a new spin on my day. When I got home that evening after running other errands,  the unexpected visitors we had, the unplanned need Jerry asked me to help with were no big deal. Getting to love and serve others while remembering that by doing so I am loving and serving God changed my perspective.

Instead of fretting about not getting a Marriage Monday post up until Tuesday, I chose to invest in and love my spouse and the others God brought to me that day. I hope you’ll forgive my delay.

Knowing that sometimes people who have a disability feel they become burdensome to their family or close friends I made a commitment to God and myself early in our marriage. I would choose to show joy when asked to assist (even being woken from a sound sleep in the middle of the night), and to always complete the task by saying “I love you” and sharing a kiss. I have missed that mark a few times, but it is still the goal for which I aim.

push for helpWhat about you?  What is it that helps you readjust your focus when you are worn and weary?  Do you have a strategy you use to keep your relationships healthy in the unpredictable dailyness of disability?

Recliner Ninja

I’ll admit it. I am a recliner sitting American Ninja Warrior (ANW). I am captivated by that television show. Captivated, that is, to watch, not to participate.

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Photo by Jaco Pretorius on Unsplash

True Ninja’s and Ninja wanna-bes run across floating disks, climb salmon ladders, cross wingnut alley, open doors underwater and take on the warped wall. If forced to try I would plop, fall, crawl and likely give up. There is no way I would even try to run up a wall that curves at a ridiculous angle.

The ultimate goal  is to conquer each obstacle course and get to the top of “Mt Midoriyama” (a structure set up on the Vegas strip). Some seasons no one accomplishes this feat. In the most reason season two made it to stage four, with one winning the coveted title “American Ninja Warrior,” and a large sum of money.

What do I get out of watching?

Some of the back stories about these athlete-performers make me feel like I am listening to a symphony orchestra the way they tug at my heart strings. There was the young dad who competed to earn money for his infant daughter to receive a kidney transport. A viewer responded to that story and donated her kidney! Another athlete trains on his ranch in the Midwest by completing chores and activities while carrying his wife with disability on his back so they can spend time together. Others train and race to show their own kids, or the community around them what it means to overcome.

Not all the competitors have such altruistic purposes. Some are athletes who want to prove they can do more, better, faster. Others are just quirky and young enough that their bodies allow them to compete covered in gold paint, hair dyed green or wearing a super hero cape, or shrimping boots. It is simply fascinating to watch what the human body is capable of, and the unique ways God created each one of us.

What strikes me most on every episode is the level of comradery between competitors. This is an individual game. While some say they are just competing against themselves, the reality is that everyone is competing against each other. But I rarely see that.

Because there are a limited number of Ninja gyms around the country. Many of the Ninjas move to areas close to a gym, or create their own. Several of the Ninjas train together. They don’t do this just to scope out the competition. They do it to sharpen one another. Hmmm, seems like I read something about that before.

But here’s the thing; when one Ninja is competing, groups of other Ninjas are on the sidelines, shouting encouragement or tips, and wearing the colors, or t shirts of the Ninja racing. There are tears and hugs when a fellow competitor makes it to the buzzer. Likewise there is a sorrow among everyone when a Ninja falls. It could be that the Ninja they are cheering on will beat them to the final buzzer.

I watch because I want to live in a world like that. Or more specifically I  want to live among a Church community like that. I want to live, work, recreate and worship with people who have my back. People who cheer IMG_5819for me, who train with me, who encourage me to go farther and faster than I ever thought possible. Who are sad with me when I get caught by an obstacle, and encourage me not to give up.

Even more I want us all to look and dress like the one who is in the lead -Jesus Christ. I don’t want to wear the colors of “church A” only to promote it over “church B.” I want to remember that Christians in other churches are not my competition. We aim for the same goal, our eternal home with Jesus, filled with as many people we can bring.

Who’s with me?

Dangers in Making it Look Easy

There is an interesting phenomenon I’ve observed in families who have a member with a disability. While others may look at us and think we have a hard life, when we compare our family to others with disability, we think we have it easy. Whether it is a Mom who has an adult child who needs complete physical care, or a young parent with a child with autism, or a husband whose wife became injured and disabled into their marriage the response is similar. Likely this is because we’ve become accustomed to our situation, and for the most part have developed coping mechanisms.

I fell victim to this many years ago. I was in a group of ladies who all had husbands with people-35681_1280disabilities. I perceived, both from my observations, and their talking, that Jerry and I had it easy in our relationship compared to them. I felt that if I shared any challenge we were having it would seem insignificant. So I stayed relatively quiet.

After many months I felt we had bonded as a group and I could now open up a bit and become vulnerable. I shared a story about a fight Jerry and I had that week. Usually we  resolve them quickly, but not this time. I told my friends how I didn’t even want to help him get in bed that night, but God told me I had to. I also shared about our resolution the following day. The ladies welcomed my sharing and commented that they thought we never had any problems. Oh dear – danger #1 in making life with disability look easy. If we are perceived to have it all together we become a superhuman to whom others cannot relate.

Danger #2 surfaced the next week. The husband of one of the ladies called me. He asked how we were doing. When I told him of a minor illness we had he said that was not what he was referring to. He wanted to know how Jerry and I were doing in our relationship. He went on to tell me that he was so sorry to hear from his wife (uh, I thought our group pillar-3126027_1280sharing was confidential?!) that we were having such a hard time and were considering divorce. WHAT?

It took a lot of time and talking to convince him he was mistaken, and that our marriage was solid. That’s when I realized by not being real with these ladies I had set us on a pedestal. When I became vulnerable, our pedestal was knocked to pieces and our image was shattered. Ultimately that’s a good thing – I want to be real. But part of real is experiencing and coping with trials.

The third and last (at least for today) danger in making life look easy is that we rob people of the blessing and  opportunity to serve and engage in life with us. I can’t even count the number of times I have been in a buffet line at church, camp or a restaurant carrying two plates and someone offers to help with one. I usually decline, assuring them I’ve got it. Or outside of a hotel when I am loading or unloading the van full of equipment and suitcases and someone offers to help. Again I say no, thank you.

I know I make my life harder by saying no. If I took the help at each juncture along the way perhaps I would not arrive at my breaking point so quickly. Hmmm, receiving small blessings and breaks may make a big difference.

I wonder if I also make it harder for someone on the outside to offer help the next time they see someone like us. Will they hold back because they’ve been told essentially their help is not needed. We have a friend who has learned to just jump in and help anyone, and often says, “Hey, don’t cheat me out of a blessing!”

So maybe making life with disability look easy actually makes it harder  . . .

What’s been your experience?

Take It Easy

Take it easy
Take it easy
Don’t let the sound of your own wheels drive you crazy
Lighten up while you still can . . .

These words, written by Jackson Browne and Glen Frey and recorded by the Eagles,  resonated in my head on a road trip we took this week. Our destination was a military post where our nephew and his family live. Our base access pass from our last visit had expired. Our goal, or more properly stated, MY goal, was to get on post between 3pm – 4 pm to get a new pass. If we arrived after 4 pm we would have to be escorted on base and listen to the stern counsel of the guard on duty to get our pass first thing in the morning.

Focusing on this target, we left home allowing a two-hour window for rest stops, fueling and changing of drivers, which is not as quick as it may sound as it involves physically changing the setup of the van. In previous posts I have disclosed that driving was our greatest challenge in marriage. Twenty-three years later, it is still true!

With each stop our two-hour window shortened. I became antsy, which sounds better than saying my need to control kicked in. On the one hand I was telling Jerry to stop asstress-2883648_1280 often as he needed when he was driving so he could change position and keep his body healthy. At the same time I was telling him our arrival window was down to only 30 minutes and we needed to be more mindful of the time.

While saying that, I felt guilty.

When Jerry pulled over so we could change drivers, he asked why I was so bound and determined to get there before 4 pm. He reminded me that we had not done that on any of our previous visits and survived. It was then that I confessed my motivation.

I wanted to make life easier for my nephew and his wife. I did not want them to have to pile the six kids into their van (three still in car seats) to drive the four miles out to the gate and escort us in. Concern for their comfort and ease made me compromise my husband’s comfort. My concern wasn’t even valid as our family reassured us it would be no big deal for them to come escort us.

The clincher to that conversation came when Jerry said, “When you try to make it easy for others, you sometimes make it harder for me.”

Ouch!

This is not the first time I’ve become aware of that tendency.

Next Monday I’ll share a little more about the dangers of making life with disability look or seem easy. Can you relate?  For now I am going to take it easy and enjoy these precious days with our family. Have a great week friends.

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Marriage Dreams Part 2

A new friend and I recently chatted about the difference in our marriages because I married a man with a disability, and she did not. Yet more than 20 years later, her groom became disabled. We commented how the death of dreams is tougher in her situation because she didn’t expect disability.

The more I thought about that I came to a new understanding of my own self. If asked, I would reply that I did not encounter the death of dreams because  I knew disability was a part of our marriage. Until these last few weeks. I now see that while the situation and expectations were different, the outcome is similar.

Jerry and I spent hours on our dates and through our engagement dreaming about how we would minister together, serve together and continue to travel for ministry, as we both did when we were single. We talked about how his life would be easier. By me helping him with his care needs he would gain an hour or two every day. I could assist him to do physical therapy exercises, again extending his functional abilities. We dreamed of me camping with friends and traveling on international mission trips. The pictures we created in our heads were beautiful, fully accessible and without any bumps in the road. Not to mention completely achievable.

Honestly, our marriage is beautiful. But my definition of beauty has changed. 1240269_10201749692684916_1017749866_nAcknowledging and dealing with bumps, and sometimes downright huge obstacles, contributes to my new view of beauty. It is a rugged rather than pristine beauty today.

 

Working and ministering together? Yes, we have done that about half of the nearly 24 years we have been married. It has been exciting, memorable, fulfilling, an area of struggle at times as we uncovered some sense of competition. The reality has not looked much like those dreams we shared during our engagement. As Jerry is fond of saying, “The best part of working together is we’re together all the time. The hardest part of working together is we’re together all the time.”

Assisting with personal care and therapy routines? Little did we know that it wouldn’t be too many years into our marriage before I too would have therapy exercises to keep my body functional to help him! If we both did all the therapies recommended for our various body parts it would take the full day! We had to pick and choose. Helping him with his routine impacted my previously free and flexible schedule. Not to mention the toll it took on my own body.

Traveling? We have been able to do a significant amount of travel around the United States, and brief ventures to some islands accessible by cruising. Such a source of joy. As for international missions trips for me, I am grateful for the experiences I had when I was single. In recent years I believe God is telling me this is not my time for international travel. I have pushed back and fought against that (with God, not Jerry). But God has held pretty firm. My place, my job, my primary ministry is to/with my husband.

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Conversations about the pace we can continue to travel have been frequent in recent weeks. We are still talking through what we gain from that versus what it takes out of both of us now that we are nearing the next big decade of life.

I hope you hear my heart in this. I am not looking for sympathy. It has been healthy for me to acknowledge that I too have experienced the death of some dreams. But perhaps some of those dreams, were simply that – dreams. What God has granted us in place of those is a stronger appreciation and love for one another, a deeper understanding of what is important in life, and a gratitude for the time and opportunities we have.

chalkboard-620316_1920What about you? How has God taken what may have been the death of one or more of your dreams and traded it for a new kind of beauty? I really want to hear your stories. For those who post a reply by Friday September 6 I will choose one random commenter to receive a free copy of Chicken Soup for the Soul: Think Positive, Live Happy. You’ll read a story from me in there. So start typing  . . . .

Reflections on Blizzard or Hurricane Prep

Blizzard. Hurricane. No, I am not thinking about the ice cream treat or drink by those names. Either would be more fun, than the weather events.

We are in the middle of living through our first hurricane season (June – November) in central Florida. Prior to this we endured more blizzards than we would like to count. Though they are very different weather events, there is a great deal of similarity in the preparation.

Hype. I understand by using that word I am indicating that there is some sensationalism to the reports we hear. Forecasting for both blizzards and hurricanes has improved, but still to a large degree a guessing game. Very rarely did the blizzards hit the areas, or with the intensity that the forecasters thought. Already we are seeing that the “cone of error” for Hurricane Dorian covers a 600-700 mile area. Still we don’t want to be caught off guard in either scenario, so that leads us to the next similarity . . .

Shopping frenzy. For blizzards the time period seemed to be 24 hours or less in advance to load up on milk, bread and eggs. For hurricanes the prep begins months ahead to have shopping-3225130_1280as much on hand as possible when the storm approaches. The lines for gas and last-minute groceries seems to start about 4 days in advance. For hurricanes people are not concerned with eggs and milk – we may not have power. But the bread and shelf stable food along with bottles of water and batteries are a must.

Uncertainty. I remember often with blizzards wondering if we should cancel a meeting or appointment a day or two out. One does not want to appear foolish or uncaring if we did get dumped on with snow and ice. But how many times does one change their schedule only to find it was not needed? In hurricanes the uncertainty revolves around do we go, or do we stay? Today it may look like we can stay, the next report may say the eye is coming to our specific address (or so it seems).

From where I sit today, here is what I know:

1) People are people. Every area, every event, is going to have people who don’t believe anything will happen, and others who believe we are facing Armageddon. Their response depends on many factors. My response depends only on one factor – Grace. When anxieties and uncertainty flare around us, a response of grace is always in season and fits the forecast.

2) Technology and forecasting have improved significantly over the years. Even the best acknowledges there is a large margin of error. I need to listen and wisely process the updates. My trust, however, cannot be in those forecasts, or my preparation. There is only One in whom I can trust. The One whom the winds and waves obey (Matthew 8:27).

3) As I prepare my home, family and self to the best extent possible I cling (pun intended as I think of a hurricane) to the truth of Romans 8: 38-39. Nothing – not height, depth, wind, rain, snow, ice, or flying debris can separate me from the love of God (my adapted paraphrase of the verses).

So thquestion-mark-160071_1280ere’s my reflections on preparations. What are yours? No matter where you live you likely have some type of environmental event to deal with. How do you prepare?

Marriage Dreams

Dreams of marriage . . . candlelight and romance . . . tackling projects together. . . kids that look like you, and act like him (or vice versa) . . . retirement days to travel and enjoy one another and the family. What was your dream for marriage?

Happy 284 +1Many of us don’t think about disability when we dream about marriage. But here we are, with wheelchairs, memory loss, seizures, spasms, paralysis or some other constant partner in our family because we either married into disability or one of you acquired it after marriage.

Often we talk about how disability results in the death of our dreams. I know that can be true. I also know that while we said “better or worse, richer or poorer, sickness and in health” most of us don’t really understand what that might involve.

Let’s be honest. Are there any marriages – even those that do not involve disability – which do not deal with reality clashing with our dreams?

Early in our marriage we were taught that life would not be so hard if we did not expect it to be so easy. There is so much truth in that statement.

If you are in one of those periods today of feeling the loss related to disability, know that you are not alone. No marriage is easy. We all encounter loss.

Sometimes in marriage we see the disability as something to be grieved or overcome. There is nothing wrong with grieving or working to alleviate disability and it’s effects. But the final chapter has not been written. God is working good through our circumstances. How might disability be a tool God is using in your marriage?

share-2482016_1920We can all benefit from hearing from one another. Would you share how God is using disability in your marriage and relationships?

Stay tuned next week for some lessons I am learning in how God is using disability in our family.

PS – Kudos (or maybe since we are talking about marriage I should say hugs and kisses) to my  husband Jerry who helped me find the right words when I was working on this post today.