My Personal, Pint-Sized Angel

harper-1

A much-appreciated feature of our church is the many doors equipped with buttons for handicapped access – well beyond ADA requirements. (Don’t you just love when people do the right thing – not just the legal requirements?) On Sundays, part of the effort to make all feel welcomed is to have leaders in the church stand at the door to greet those coming in. A person typically stands by the access button and pushes it for everyone, offering an open door, but especially before an ‘otherwise abled’ person needs to push it.

A few weeks ago, the welcome person had her 3-year-old granddaughter standing with her. Mimi would remind the munchkin to push the button when helpful. I typically make a point to notice the welcoming person, catch their eye, smile, and thank them so they understand how much appreciated this small gesture is. I noticed the young girl and smiled, thanking her. Now, often when adults see my wheelchair, they quickly look away as if embarrassed, shutting down any need for further communication. This serious, little one looked directly at me after taking a hard look at my wheels. “Why do you do that?” she asked genuinely. I rolled up closer, looked her back directly in the eye, and explained in 3-year-old terms how I had been hit by another car just down the road from church. I went on to tell this attentive youngster that this happened when she was a very little girl. I used to walk just like she does, but now I can’t move below here (gesturing midway between my waist and shoulders.) I lifted my one leg to show that it was useless. She asked a couple more questions, I asked her name, and then we both went back to our own tasks.

After the service, I went to the gathering space where coffee is served. It just happens to be near the area where adults meet their youngsters after their church-school. I was delighted to notice this cute munchkin come back to see me. I gave her a big smile and said, “Hi, Harper! Glad to see you again.” This precious one reached out and gave me an unexpected hug. We chatted a bit about what she had done in church school, and we said good-bye. The following week, Harper came up to me where my husband and I sit – back of church where the cutout pews provide space for wheelchairs. She again gave me a welcomed hug, and we talked briefly about her week. Nearly each week she is at the door with Mimi or comes to find me in the back of church before the service starts. We briefly chat about her week, friends, her day, or how she looks.

During Advent, the children were gathered in front of the sanctuary as usual for the Word for Children. The leader was explaining that they would be lighting the pink candle on the Advent wreath. It stood for joy. Harper spontaneously raised both arms, turned a bit sideways, and struck what looked similar to a ballet pose. This was greeted by an immediate chuckle from the congregation. Harper’s pose underscored the meaning of joy in a much more meaningful way than any words could.

The last two weeks Harper has entered the back doorway that separates the sanctuary from the foyer, spotted me, and literally run to me to give me a big hug. What a wonderful way to begin the service and week for both Harper and myself. It didn’t take long for me to realize that Harper is my pint-sized angel. Her greetings are truly a gift of God.

Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. (Hebrew 13:2, NIV)

Watch for your little angels. Shalom, Collene

A Story of Grace

I was asked to speak at our FL church for a stewardship moment. It is at the very beginning of the service immediately after the announcements. If it doesn’t come up, it was Nov. 27 ~ click the “watch” button.

http://www.moorings-presby.org/archive-services.html#

For a second time, my testimonial was called “A Story of Grace” by others. It is.

We all receive blessing. Shalom, Collene

Wheels on a Cruise

Wheels on a Cruise

Many readers might wonder what it’s like to experience a cruise in a wheelchair. After two cruises on two different cruise lines, I will share my experience. I am not an expert but these are my insights after more than a half dozen cruises, two in a wheelchair.

Getting on and off:

  • Handicap guests complete a form noting specific needs prior to sailing. Ship staff provided everything I noted on that form with the staff on the second cruise even including the bed top at chair level. That was huge! [High bed tops typically found in handicap hotel rooms remove independence from those in wheelchairs.]
  • Parking was convenient & nearby – no need to use a bus to get from the parking to the ship.
  • Staff was visible to help and expedited lines to ease weaving through the intense congestion.
  • Staff was helpful getting me up and down gangplanks when they were not ADA compliant (narrow and steep).

Ship:

  • Longer cruises attract older cruisers.
  • The staff was more than accommodating and always gracious.
  • There were definitely others on both cruises with mobility handicaps.
  • Needs of those in wheelchairs fell in two categories:
    • Necessary: Birth defects such as cerebral palsy (CP), disease such as multiple sclerosis (MS), amputee, spinal cord injury (SCI), etc.
    • Convenient: People who can stand and walk but it has become problematic due to heart, brain, breathing, ambulatory issues, etc.
  • Cruising was convenient because once settled in our room, there was no need to cart around suitcases which are impossible to carry, hold, or wheel.
  • Both cruise ships were around 2,500 passengers. I would consider these to be medium size ships. Both seemed optimal for size. I believe a larger ship would be more difficult to move around. Rolling from bow to stern or stern to bow can be a long trip, especially if necessary multiple times per day.
  • Anyone who likes to gamble can rest assured that casinos can quickly be located due to the smell of stale smoke and a blue haze in the air as one gets close.
  • Most ship floors were carpeted which was never easy. Some of the hallways had hidden dips which threw the chair to one side then the other so I sometimes looked like a drunken sailor. Both ships had a floor that had an outdoor walkway from bow to stern. This was a hard surface and much easier to navigate.

Stateroom:

  • Rooms were larger to accommodate a wheelchair plus provide the ability to wheel around room and bathroom. Note: anyone who needs a scooter or wheelchair for convenience must keep it in ones room. None can be left in hallways.
  • Bathrooms were uniquely designed with a roll under sink, no curb to the shower, a fold down bench, and flexible (reachable) showerheads.
  • The first cruise line had a special stateroom entry door. When pushed, it continued to open and stayed open for about 30 seconds when it slowly closed on its own or it would close with a gentle nudge. The other cruise had a heavy door which was difficult to open unassisted.
  • Even handicapped rooms were carpeted which surprised me.
  • Most passengers in common walkways were accommodating of the chair and moved to the side. Not all, however.
  • Rooms near an elevator were more efficient. Our room on one ship was about midway between two elevators. Since hallways were carpeted, that repeated trip was difficult.

Shows:

  • Shows were accessible only on the main level, not from the balcony level. Our most recent ship had two accessible areas, one near each entry door. The one had an area free of fixed seats where one could bring a wheelchair. The problem was that the fixed chairs in front of us were high, thus blocking the view of the stage. The other was an area that accommodated about 3 wheelchairs, scooters, or companions on available folding chairs. The view from there was unobstructed and nearby fixed chairs were available and marked for companions.
  • The MC announced prior to each show that the seats marked for handicapped were to be respected. Not surprisingly, there were typically some who loved the convenience of the area and sat there anyway. I was often reminded of a posting I saw once from another SCI acquaintance, “Stupidity does not qualify as a handicap for reserved parking” (or seating).

Dining:

  • Dining was accessible. One cruise had assigned tables and staff removed a chair. The other cruise had flexible seating hours and locations. Staff was excellent about helping push me across the carpet which tended to be the thickest on the ship and also removed a chair to provide space.
  • We preferred to eat in a dining hall and enjoy the service. Cafeteria style eating was more difficult. I would need to rest a plate precariously on my lap. On one cruise, staff would notice and offer to help me. On the other cruise, either my husband or I needed to ask for assistance. The thing I learned quickly was that staff wants to be very generous with helping sizes. Even requests to scoop a very small amount resulted in medium to large scoops which culminateded in an over-heaping plate for me and an awful lot of waste. It’s possible that the language was a barrier.

Excursions:

  • We did not find one accessible excursion on either cruise. Some excursion descriptions noted that customers needed to get into the bus or van independently or with assistance. One trip was advertised as completely handicap accessible for those in wheelchairs. Both cruise lines had a designated phone line serviced by staff trained in handicap needs and facilities. I called the special line twice, speaking with two different people who both assured me that this particular excursion was, indeed, a good solution for me, a paraplegic. It was not. The on-board cruise staff had all my information regarding handicap needs. Even though they knew it was not accessible, they made no effort to notify us ahead of time. We only learned by chance the night prior to the excursion. When we asked, they promised to refund our money by mail but there was no effort on their part to make up for it.
  • Some but not all ports have a place for those in wheelchairs to get off and explore at least a bit. Some allow direct access into town and others have a small area with shops in which to browse. By observation, these occur either in very large cities or in more remote docking areas where local vendors or cruise lines build small shops and a simulated taste of the island or country.
  • Any port that requires tending off the ship (using smaller boats to get to land from an anchored ship) is not wheelchair accessible.
  • There remains a lot to do on a cruise ship even if one cannot get off. Be sure to bring books to read.

All things considered, cruising provided wonderful experiences.

Tears

Here we were on this lovely cruise. We were well fed, well taken care of, in an accessible room, relaxed, sunning, entertained, reading, … But, yet, as I read my book, I was tearing up for the second day. The book was historic fiction set near the end of the Civil War and slavery, written from the viewpoint of the slaves. I have read plenty of books about slavery, slave trade, Nazi suppression of Jews, Dutch suffering when caught for hiding the Jews, Japanese Internment camps, Native American suffering based on the US government’s broken promises and white western expansion, … lots of books about some of the worst examples of humanity. Why were the tears continuing to stream down my cheeks while reading this book, I wondered?

The slaves in this book kept supporting each other with promises from God. Promises like “his eye is on the sparrow” sustained those who were suffering. They had faith that, in the end, God would provide Glory. Eventually it dawned on me. Now that I am living in a wheelchair, I feel imprisoned in a body that no longer works. I have a small sense of what it must have felt like for slaves. In a way, I was like them with no way out of my paralysis, here through no personal choice, benefiting from the love of family who also had no ability to change my situation, … I thought I had always felt empathy for others. What I felt in the past wasn’t as real as it was now to feel the pain of others in similar groups.

Maybe the worst hurt came when I realized that a then-Presidential candidate was mocking others with handicaps like me. Not only did he think it was funny and ok to mock us (or anyone), but he did it while trying to impress and earn the support from voters who also thought it was ok. And, it wasn’t only those of us with handicaps but other groups were purposely targeted and disenfranchised.

Another realization was “in my face.” There was not one excursion off the ship in any of the six countries included on the ship itinerary that was wheelchair accessible. I was told by ship staff that one particular city we visited, of over a million people, did not have one bus in the city that was accessible. How challenging it must be for those with handicaps in such countries. It made me grateful for the many people before me who fought long and hard for the Americans with Disabilities Act (ADA) and Housing and Urban Development’s (HUD) Fair Housing Act (FHA). I also wondered what America some people wanted us to go back to when America was greater than it is now. Prior to ADA or prior to more fair civil rights?

I am reminded of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” I pray for America, Americans, and our leaders. Jesus ate with Samaritans and tax collectors. Our command is to love others as ourselves. Isn’t that how we work to help His will be done on earth as it is in Heaven?

Give thanks for your many blessings.

Shalom, Collene

Van Go(gh): Yesterday’s Anniversary

Yesterday marked the first year anniversary of our amazing Van Go. Because of the gifts of NMEDA and the adaptation of BraunAbility and Clock Mobility to our Toyota Sienna, we have been blessed with a year of closer to normal abilities to get in the VAN and GOgh.

In the second half of that year, I have written the manuscript of an information text (children’s book) which is written from the voice of a child in the preschool years thought HS graduation facing mobility challenges. The various children (male/female; many physical causes; all races) are tackling and accomplishing many day-to-day as well as atypical task with the attitude of “Sure, I Can.” My challenge for this summer has been to find a publisher who will take a look at this manuscript and, hopefully, decide that it is worthy of publication. I know this is a concern of parents of children who are impacted and holds a powerful message for all educators and all people who come into contact with persons with mobility challenges. (Read: everyone!!) I need an illustrator and a publisher. I know they are out there. We just need to get connected.

Just this week I learned about a young grandchild of precious friends who has one of the diseases addressed in “Sure, I Can” and will be facing mobility challenges. This is a message his parents, siblings, and those who love him need to read.

Appreciate your blessing of health. Shalom, Collene

Joy Through the Eyes of a Child: Who Just Happens to Have a Mobility Disability

 

Recently my husband and I were privileged to attend Stroll n’ Roll, a fundraiser and fun activity for Spina Bifida. Stroll n’ Roll, as I understand, was originated by two young moms who learned up close and personal what Spinal Bifida was all about. In a bit over a half dozen years, this event grew to what we witnessed and participated with. The event was moving, and I’ll share it through my impressions and recurring memories.

  • Hmmm, interesting:
    • We walked into a large, banquet room filled with hundreds of people of all ages, knowing, but not visually noticing, that it involved families living with spina bifida.
    • We were in the outstanding Frederick Meijer Gardens venue and were able to enjoy the gardens, sculptures, and thousands of fall mums. The most striking sculpture was the enormous Da Vinci Horse Statue.
    • A table of red t-shirts noting “ADJUST BELIEVE OVERCOME REDEFINING SPINA BIFIDA” with the JUST BE ME lined up vertically in the center of the wearer’s chest.
    • Vendors proudly participating in the event with samples of their products but also with their families present.
    • A nurse telling me she has participated for years with her personal children because at work, she sees the children at their lowest. Here, she sees them healthy and having fun.
  • So fun:
    • Boys about 2nd to 4th grade clad in new, red t-shirts greeting each other with huge smiles as only children can when they see another child who they may have just met or may have seen over the years.
    • Knowing one of the boys who is walking has spina bifida and an obvious friend his age in a wheelchair also with spina bifida.
    • One of the boys doing wheelies and balancing joyfully and proudly on his large, rear wheels.
    • Moments later 4 red, t-shirted boys gathered, chatting, smiling.
    • Young children with lights flashing on their wheels like one sees on some children’s shoe soles.
    • Wheelchair Michigan, proudly wearing her sash and ornate dress, rolling around the room, introducing herself for the award she had won and explaining her ambassador role. She told me she happens to have spina bifida as well but goes around the state greeting people and letting them know that life goes on for people in wheelchairs. (Example of her cutting the ribbon for a new beach access sidewalk: https://www.youtube.com/watch?v=lO_iTiaVTI0)
    • A buzz in the room of lots of chatter, laughter, kiddos moving about the room comfortably, obviously well used to moving themselves around with their wheelchair, leg braces, or other methods.
  • Most tender sight:
    • A young child of about 2 years pushing the back of his (apparently) older sister’s wheelchair down the hall.
  • Signs of brighter times:
    • Sunshine breaking through the drizzle as we headed out, with my husband and I purposely holding back to watch the excited youngsters and their support groups heading out.
    • Lining up with about a hundred others to roll or stroll about the gardens with the other families and friends, unable to keep from smiling as I watched the kiddos with their flashing wheels and chairs touched with individualizing color and sensing their excitement.
    • Rolling as quickly as I could with my power assist wheels just to keep up with the scores of people who were in the line that began to stretch and thin out a bit. I recall feeling determined NOT to fall behind.
    • A group of probably 20-30 people of all ages, dressed in t-shirts proudly noting the name of the child they were there to support all gathered around and dwarfed by Da Vinci’s Horse.
  • Funniest memory:
    • Hearing a voice behind me say, “keep going, we’re falling behind that old lady.” It didn’t take much checking in my peripheral vision to note my grandmother wasn’t walking with me and they just might be talking about me.

Watch for your blessing in the eyes and smiles of our little ones.

Shalom, Collene

9/11/01 ~ 15 Years and Counting

Where were you when you first heard, then watched a plane crash into one of the twin towers of the NY World Trade Center? Each of you reading this will be able to quickly bring back the place, people, surroundings, feelings, conversations, uncertainties, immediate thoughts of the safety of personal loved ones, horrific images, … and, the rest of the day as well. This is a time for each to remember personal experiences and implications – not those of mine. … … … … Vivid and poignant, aren’t they?

It is hard to think such vivid memories are from15 years ago. Aren’t there things you wish our country had done differently since then? Aren’t there things you wish our world had done differently since then? Aren’t there things you wish you had done differently since then? I do! None of that can change. We can only impact the future. The Iroquois Nation said, “In every deliberation we must consider the impact on the seventh generation…even if it requires having skin as thick as the bark of a pine.” I believe that is wise advice. In order to do that, we must study, think on, and then teach our family and share with our friends the “true north” in our lives, what we believe, what we trust, and what we value. May it be for Good and not for harm.

This morning I received a message from Cheri Lovre, the well-known and respected expert from The Crisis Management Institute, who helped me and many school leader friends deal with school crisis situations like suicide and the Amish school shooting personally, to the Columbine school shooting on a more national scale. Cheri closed her note with the following:

“I would hope for all of you that you find time for reflection on the preciousness of every moment, the treasure it is that we have for those who love us and those to love, and the opportunity for each of us to continue to strive to make a difference by bringing more than tolerance…by inspiring love in all corners of our world…or in the words of my favorite prayer, ‘to rise above the differences and distinctions which divide us…’

 “May we all bring the light of hope to those around us, most especially to the children and youth in the hallways of our schools. Never underestimate the encouragement you bring to students’ lives by your loving presence. Live is fragile. Fill it with goodness!”

Watch for your blessings – and be sure you are a blessing to those around you.

Shalom, Collene

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