Nine-A

Nine years have come and gone. Oh, my. I can honestly say I did not see myself this far out following the accident. My sisters said, “9 years … At that time, it was hard to see … the next hour … the next day … the next week … And to see further was very hazy.” I learned throughout my time of two weeks in intensive care, transition to a step-down ICU, 2 months of in-hospital rehab, and finally, 4 months of outpatient rehab that my life expectancy with a spinal cord injury (SCI) had shortened. No one had a specific conversation about that, but rather it came out ‘between the lines.’ I never pushed that information nor did I do any research on it. That’s not like me.

In one of my prior lives, I was in a school district that prioritized professional development and a curriculum that was research and data-driven. As a result, we had a unique, expert, creative, well-recognized team leading district curriculum and staff development. We had experts in reading-language arts, mathematics, science, social studies, gifted, technology, cooperative learning, and effective instruction. Very unusual for a district our size. Our assignments were a combination of full and part-time, but we all shared an office suite in which lots of collaboration occurred. We had a new Superintendent hired with that in place who said his best way of leading was to step back and let us proceed. He supported professional growth for everyone in his leadership team (these curriculum people plus principals and district office staff). One memorable training he brought for us, but we soon realized the power and brought it to the all-staff level, was True Colors. It was based on the Myers-Briggs personality inventories but was simplified and very effective and memorable. Four colors summarized the full spectrum of personalities.

• Blue: feelings, interpersonal strengths, self-awareness, team builders, sensitivity to needs and strengths or others. Learned well with others and in groups where they also were strong participators and facilitators.
• Green: big picture thinking, understanding how ideas interrelate, thriving on learning, wanting to research and learn everything possible on a topic, never finished learning because one interest leads to another, asking questions so -and until- they fully understand.
• Gold: organized, sees what needs to be done and makes a plan to do so, loves checklists, always gets the tasks completed and on time-often early, makes a great secretary.
• Orange: fun-loving and seeing the humor in a situation. Enjoy a good party and are the ones to plan them. Bring joy to the situation.

Everyone has some of each color; it is all about the degrees of each. Key learning: a good group has people with all different strengths and the most effective groups/committees/classrooms have a balance of all.

I’m a green – and weighted a strong green. The fact that I didn’t research the impact of SCI on life expectancy was not part of my character. I guess avoidance was stronger than my root personality characteristics.

Finally, after 9 years, I decided a quick review was in order. Projections varied widely. The initial numbers I saw were wretched. The first year or two are crucial for medical care; physical, occupational, and speech therapy; support systems; and attitude. The wisest piece said it depended on the level of the injury on the spine and the age at which the injury occurred – along with whether the SCI was complete. Well, that is logical and reasonable. However, I still wanted numbers. It followed that without strong support in the above list, too many didn’t live the first year. References to mental health, including suicide, were sobering. The best piece I saw that quantified things a little was to say 80%. Those with a spinal cord injury would likely live about 80% of what they would have done without the injury. I could live with that. For years, I said I would live to 100. I quit saying that after my accident. However, 80% of that is an easy calculation. I could live to be 80. Well, that seemed fine. Then, I recalled that I’m already past 70. Oh, my.

I fully admit that I have not done my typical level of research. The above is definitely based on a cursory review of ready research. I guess, honestly, that I don’t really need more on this topic.

There are no promises in life. It comes with no guarantees. It takes more than fingers on both hands to count the number of our friends and family members, who were healthy 9 years ago – including a range of ages, that have tragically passed during those 9 years. I AM ready to go at any time. It is well with my soul. There are days I’d prefer that it come quickly. It’s my family that I want to watch grow and develop and be there FOR them. My blessings of a wonderful husband-partner-caregiver, time, experiences, people, travel, and on-and-on … have been remarkable, and I feel privileged to have them. I am grateful for days that are full and for lists of worthy projects I still want to complete or accomplish.

Watch for your blessings.

• 

Seven

Seven. Such a simple number and often forgotten. It’s not an even number. It’s not easily multiplied. 2s are clean and easy; 5s are easy. 10s are really easy once you can count. But, 7s! Not so much. In fact, I recall being required to memorize multiplication tables in fourth grade. Before we could go out to recess, a good way into the school year, we had to prove we had all the multiplication tables memorized. It was the 7s and 9s that really got me. I had to force myself, through using rhythm and repetition, to learn them cold. It is a prime number, but for me, that means it’s even less user-friendly and, therefore, less memorable. Biblically, it symbolizes completeness – but not for me.

Well, last spring seven years came and went with only one person, an associate from several years and locations back, who mentioned the anniversary to me. Understandably, it was a time of turmoil for my family due to disappointments, illness, death, and moves. That was perfectly fine but certainly a change from earlier years.

March 19, the day a woman, holding her cell phone and talking, hit my car rather than focusing on her driving. It changed my life and that of my family.

At first, I thought I would die soon based on that accident and the spinal cord damage it had caused. Nothing below my center-back now works. Anything that is normally controlled or done by those nerves, muscles, tendons, and even bones, can only be done by what I call work-arounds. Staff, both in the intensive care and next in the rehab hospitals, were wonderful! They first kept me alive and then taught me the work-arounds and coping mechanisms. Even those work-arounds don’t sometimes work. Those and upcropping “health issues” cause angst, concern, and loss of patience. I am fully prepared to die. In fact, there was a time I prayed for that. Assuredly, it would be more glorious and less challenging than life here. I’ve grown past praying for that, after all what would my granddaughter do without me?! But I am more than prepared for it.

A pattern I’ve noticed over my lifetime is that I tend to get involved and take on responsibility repeatedly until I am overcommitted. That begins to take its toll so I finally begin to scale back as those commitments allow. Over the last couple years, that has happened again. I guess it’s a good sign. However, there are three large, important writing projects I have not been able to even touch for more than a year. I have responsibilities and a calling to finish or address those. Those three don’t even count this blog that I’ve committed to write for and about those with Spinal Cord Injuries (SCI). This doesn’t excuse but does explain the lack of entries on my FastHugs blog.

My word for the year is ponder. As I look back over seven plus years, I realize that with time it’s as if the sharp images of the past have begun to blur and soften around the edges enabling other aspects of life to come into clearer focus. I am grateful for this evidence of the same with those I love as well. Maybe this last year and more will allow me to ponder life’s experiences and better prepare me for writing. Time has helped me conclude that I will not die of this SCI but will die with it. Thanks to all those of you who still hold us in prayers.

Watch for your blessings.

Who’s Out There?

 I started this blog a year after my devastating accident at the urging of a friend. I began it with the purpose of sharing my thoughts and daily journey with others who either face or are wondering about how I’m doing on my Road to Recovery. Writing is therapeutic for me as well. I have been astounded by the number of people from literally across the world who have read the blog and taken a peek into our world. I say our because spinal cord injuries impact the lives of family and also close friends. They are the ones who step in to help when I cannot step. They help for the many crucial work-arounds as I call the methods to help with functions from my T-6 injury point on down that no longer operate.

Maybe you, like me, also wonder, “Who’s out there?” Well, there have been readers from all the continents except Antartica! There have been readers from 45 different countries. Those are humbling statistics. One thing that my husband and I had looked forward to in our retirement, that has been severely curtailed, was travel, especially international travel. How amazing it would be to visit each of the countries where others have read my blog. You’ve looked into my world; I’d love to visit your world.

Photo by Jimmy Chan on Pexels.com

Photo by Jimmy Chan on Pexels.com

Recently, there have been a great many view from Hong Kong. My husband and I thoroughly enjoyed a visit to Hong Kong less than ten years ago. I am intrigued by the person or people who have been reading at this time. If you have questions, want to ‘talk’ in more depth, have specific questions about other work-arounds, or need information, please contact me. If you submit a comment, I can keep it private. No one else needs to see it. I will certainly respond, again privately.

As I said many times, I have been given grace through this accident and experience. It is NOT easy; nothing about it is easy. But, I’ve been helped and supported. I’d like to help and support others.

I’ve been blessed through this experience. Watch for your blessings. Shalom, Collene

One Who Makes Slow Progress

Sensitive questions are sometimes asked in masked ways. Only a crass person would ask, “So, you making any progress at all on your ability to recover?” Of course not, but friends and family who DO care are hoping and praying that recovery continues and they understandably want to know. Any positive movement would be a cause for celebration. A question that I do get, especially when I haven’t seen someone in a while, is, “Are you in physical therapy?” That sounds to me like a question I wrestled with myself early on. I mean, really, if I (you) work at it just a little harder, I (your) legs, feet, or even torso should begin to work, right? Wrong.

It isn’t about working harder. It’s about a spinal cord that was damaged badly enough from being hit by a fast-moving vehicle and being dragged out of my own vehicle and dropped on my head by a well-meaning, but uninformed passerby, to now block messages from my brain to my body below mid-chest. Therefore, my lower body doesn’t obey those commands that are given by my brain. Yes, I do exercise my upper body religiously and stretch as directed to maintain flexibility. But, more exercise won’t fix what’s wrong. Only a miracle or new medical research will fix it. That’s exactly why my family and I search for related, promising research and share it through this blog. (See Pages: SCI Research& SCI Of Interest in menu bar next to Home.)

Does that mean I’ve given up? Of course not! What I do is measure progress: progress that is made in minuscule steps forward. How do I know I’m improving? Lots of little ways:

• Being able to reach buttons on the microwave touchpad that I used to need a stylus-on-a-metal-pole to activate.
• Being able to bend and reach far enough over the sink to be able to spit after brushing my teeth without needing a small receptacle.
• Being able to bend to retrieve items from the floor – without fear of tipping out. [I reach higher & further and am better balanced.]
• Being able to slide into Van Gogh’s driver’s seat without planning 15 minutes to do so.
• Going outside to drive Van Gogh without forgetting my transfer board.
• Realizing that I am comfortable driving without tensing up and worrying that I would forget how to stop or accelerate at a reasonable pace around corners.
• Realizing that a car started to enter the intersection and I automatically depressed the left lever, which is the way to brake. [Practice pays off.]
• Learning that some bodily functions aren’t on the strict timeline I had when I left Mary Free Bed Rehab Hospital – and others are still on a strict clock. [Fine-tuning workarounds.]
• Baking more quickly. The first time I made blueberry muffins, it took 30 minutes just to get out all the ingredients. Just recently I made them and I had them ready for the oven in a half hour. I still need help getting things out of the oven, unless quite light with an easy way to grasp the tray, but I can usually move the item onto the oven rack. It’s progress.
• Realizing that my husband and I could together prepare a whole meal good enough to invite someone (elderly man at church) or two special people (parents) over without them having to bring any food – let alone bring in the whole meal like during the first years. [Progress with cooking and baking.]
• Being able to maneuver my wheelchair to fit in a space or get out of one without hitting any furniture, cupboard, appliance, or wall as frequently. Note, I didn’t say never, but there are fewer dings, gouges, and smudges. Fine-tuning furniture placement has been imperative. [More mobile.]
• Moving from the first summer of not being able to close the very-tight-fitting door, to being able to close it only if positioned just right with wheels locked, to being in an absolutely correct position but no lock to the wheels, to closing it with a good oomph.
• Having success with one-handed-rolling. Progressing from simply rolling in circles, to very slow progress rolling one hand 1-2 pushes before switching hands for whatever I was carrying and pushing 1-2 times; to that process increasing to faster than a snails pace, to utilizing doors/ counters / handy stable items with one hand and the opposite wheel with the free hand. [More independence.]
• Moving from discussions with spouse from guarded and ignoring the elephant in the room by closing the other out from daily discussions, to occasional ‘used to be’ types of conversation, to honest discussions of losses and what ‘died,’ to laughing and more normal conversations more often. [Real quality of life.]

These small measures of progress are within the context of my 60-something body that is physically succumbing to the ravages of age more quickly than it should. There are some things I cannot control but I’m doing my best to control what I can – my attitude.

I run across acquaintances, friends, or distant relatives who say, “I’ve been thinking about you a lot and I pray for you.” I pray for those who pray for me. I don’t know all their names so I pray in broad terms; God knows their names.

Blessings! Shalom, Collene (aka One Who Makes Slow Process)

 

I Only Wish It Were Fiction

Sometimes people doubt that what they read in fiction could be true. Who would really do that? I only wish the following were not true. Unfortunately, they are.

My husband and I decided to go to the Coast Guard Festival but went the opening morning even though the real action and fun occurs weekends. Experience taught us the scarcity of parking spots for a handicapped [H] vehicle, especially one designed for vans which provide space to lower the wheelchair ramp. Obviously, any town with a Coast Guard Festival is on the water and already very popular.

We arrived and immediately went to the parking area set aside for [H] vehicles near the channel. Nope, that section was closed and instead held enough proverbial junk food trailers to keep several dentists in business. Everyone needs an “elephant ear” sugar-laden pastry at a festival, right? The alternate [H] parking area was not indicated in any way we noticed. However, we knew of out-of-the way, overflow parking tucked between the state park camping and the channel. We were delighted to find a [H] spot and it even had the slashed line section for vans. Our lucky day!

After enjoying a taste of the festival (not literally), we headed back to our van. Here is where it got interesting. A car with a [H] hangtag was parked next to our car but it was parked half in their spot and half on the slashed space. (Infraction) Luckily we were in angled parking so we hoped our lowered ramp, at this angle, could avoid their front bumper. My husband and I came around the back of our car, him holding out his fob about to push it and lower the ramp and me rolling up. Oops, in the slashed space that remained, the car occupants had set out their lawn chairs and were watching the boats going through the channel. They could have set their chairs on the sidewalk in front of their car but chose not to do that. (Rudeness) As they saw us, the woman asked if she should move. (Duh) We thanked her. Her husband stayed planted on his chair. The ramp was lowered, barely missing Mr. Rude, and I maneuvered my way back and forth so I could manage to position my chair to get up the ramp while avoiding damaging their vehicle. “You know,” I bravely and cautiously commented, “you really shouldn’t be parked on the slashed lines. That’s for ramps.” “Oh,” quipped Ms Rude, “it’s hard for my husband to park.” I bit my tongue and refrained from saying, “Well, it’s hard for us to lower the ramp without hitting your vehicle, leaving a crease in the metal, or rolling around the end of the ramp without gouging your car.” Sometimes it’s better to take the high road.

If only that were the only incident.

It takes arriving early and often driving around to find a [H] spot designed for a van. We appropriately park next to the slashed lines either straight in or backed in, dependent on which side the extra, slashed space is. Imagine our surprise and consternation to return to our van, not once but twice (!!), to find another car sandwiched between the two legally parked cars, right on top of the boldly, slashed lines! The first time we saw this we were stunned! My husband backed the car out into the drive area blocking traffic where we could, as quickly as possible, lower the ramp and get in. The second time, we were fed up and prepared. I now have the local police number programmed in my phone. I called the dispatcher to report the situation. She said a squad car would be there within 20 minutes. As promised, the car arrived in about 18 minutes; blocked traffic in the busy parking lot; prepared to write the ticket for the offending car; and said we could safely pull out, load up, and leave. Thankfully, my husband could drive. If it had been only me, even with the offending car ticketed, I would have had to wait for the offensive driver to return. On both cases, the car was so tightly parked that I can’t imagine how the driver or passenger could squeeze out. Having it towed would have been the other option. (More expensive) If the rude people had just arrived and were doing some shopping and dining over a lovely meal in this quaint mall, I would have been at their mercy. This was a repurposed, fishing cannery. It had obviously been grandfathered and had not upgraded their restrooms to ADA requirements. The stall in the mall bathroom marked ‘handicapped’ would not even allow my wheelchair to enter, let alone have the door close. Yes, I reported that to the manager of one of their restaurants. Yes, he had heard the complaint before and would pass it along -again- to the establishment management.

What can be done?

• I believe we all need to advocate for what is right.
• Don’t park in a marked handicap spot unless you have documented and current accessibility needs.
• Even if you do have a tag to hang on rear-view mirror or permanent [H] license plate, use van-marked spots ONLY if you need one or it is the only spot left.
• Call police if you see offenders. The police need to see the car incorrectly parked. A photo of the car, its license plate, and the sign are not enough.
• Never use a tag unless it was given to you by a doctor and then for only as long as it is needed. Never share it with others. It is abuse; it is illegal.
• It is illegal to misuse handicapped spots. Penalties range by state but are up to $1,250, 6 months in jail, and 50 hours of community service.

Hats off to Texas where Park Houston trains volunteers to monitor and write tickets for those who abuse handicap parking spots.http://www.houstontx.gov/parking/volunteer.htm

Count your blessings. Shalom, may all be well with you. Collene

Just out from Reeves Foundation

https://mail.google.com/mail/u/0/#inbox/16045e48cd3cf919

Please check “SCI Research” page (above) for the full release. The FDA has just approved fundraising for The Big Idea based on the Susan Harkema, U of Louisville, and others’ research on four men with significant SCI damage. All four men can stand, move their toes/feet, and have improved ‘quality of life’ functions. (read: bladder, bowel, sexual). This is due to spinal cord stimulators. The stimulators in this study are used in unique ways but, based on our son, we know that spinal cord stimulators are used in a widespread way by pain management physicians. The hope continues. If Reeves can raise enough funding and Harkema’s research can progress, many, many doctors could be already equipped to make a huge difference for those with SCI.

B ~ So There, Death: Freedom

(Continued) Do you ever have those moments from a song or talk or sermon that come back to prey on your mind? Moments that seem to be seared in your memory for what they meant to you? I had two this summer that seemed related. Here is B. A preceded this.

I am well aware of the miracles recorded that Jesus performed and also that there were a lot more miracles that were never recorded. Despite knowing them well, here, again, I learned in a startling way what I did not know. One day near Capernaum, on the banks of the Sea of Galilee in Israel, two blind men came to Jesus. It was the first time blind were given sight and there is no record of the disciples ever healing blindness. Ok, I knew that. I also know that lepers were considered unclean, lived apart from others, and were considered to be extremely contagious – untouchable. I learned now that the blind and also others with handicaps (ok, now you get why this caught my attention anew) were all considered unclean, a scourge on humanity, rejects of culture, and certainly not to be touched. Here, these two blind men – who were likely close to death since there were no hard-fought ADA (Americans with Disability Act) laws and they could not see to work, get about, or do much of anything living as rejects of society – declared that Jesus was the Son of David and asked that he heal them. Jesus could have simply announced that they could see, but rather, he chose to touch their eyes and pronounce them healed. He touched them! Through this simple interaction, they declared him the Messiah – Savior of all – and he declared them clean, fit to be touched, and included with society.

Side bar: Here is another eureka for me that I have yet to wrap my mind around.    Perhaps others have the answer I’m trying to come to grips with. In both the tabernacle and the temple, there were levels of access culminating in the Holy of Holies providing only the High Priest access. But, remember the outer levels? The unclean and handicapped could not enter. Pause. Ok, so for 63 years of my life I could have entered the temple. All of a sudden, at 64 I would no longer be allowed access? Maybe I’m too American but I do not understand that – in either Old or New Testament days. Note: the tabernacle and temple were not accessible. Period.

Jesus opened the eyes of the blind men but also gave them liberty, freedom, and inclusion. They were no longer marginalized but had full access to the temple, which was the only space for worship in those days. How accessible are our churches? How welcomed and included are those with a wide array of handicaps to our churches?

Usually in church, it’s the music that moves me to tears. This time, it was the sermon. Perhaps it wasn’t just for me but because of a summer in which we faced difficult loss. There was a lot of sadness including a miscarriage. We tried to support a brother-in-law, a cousin, and a dear friend with cancer. It was also a summer in which we watched a friend die a devastating death just a year after his wife lost her battle with cancer. This left their children and grandchildren without that anchor of support. I was fighting tears throughout the service and trying to get it together with bowed heard during the final prayer. A friend who typically sits in front of our reserved for families and those with handicaps back pews because she needs to leave early, touched me on my shoulder on her way out, leaned down, and whispered, This one’s for you, Collene.

Later this reminded me of finding out, literally by mistake, that the one and only accessible excursion on our cruise, based on their literature as well as assurances on two calls to the cruise line’s dedicated handicap phone number, was only available for those who could stand and climb steps. What? This was in the largest city and capital of the country. Ma’am, the excursion desk staff woman told me, there is not one accessible bus in xx(capital city)xx. Our emotions went from anger to frustration to disappointment and finally to, Wow, thankfully we’re only visiting and not living in this country.

Even greater, I’m thankful that I live in a world where Christ saves us regardless of abilities and gives us life abundantly.

A ~ So There, Death: … You

(First of 2 parts) Do you ever have those moments from a song or talk or sermon that come back to prey on your mind? Moments that seem to be seared into your memory for what they mean to you? I had two this summer that seemed related. Here is A. B will follow.

My husband and I need to arrive almost everywhere we go early because, not only do we need a handicap spot, we need a handicap spot with the blue slash marked area. Apparently many, even with handicap hang tags, do not understand these spaces are designed specifically so those with ramps have space to lower that ramp plus space to actually roll down and off. (But, that’s an entry yet to be written.) One advantage of getting to our church early is that we get to hear our 70-100-voice choir rehearse their songs. I noticed it was Abide with Me one morning and thought, “Oh, good, this is one song that won’t move me to tears.” I had grown up with this song and it seemed a bit slow and ho-hum. Well, I hadn’t heard the rendition by GM, Minister of Music and Director. Our brass ensemble, rather than the full orchestra, was playing this day. The Brass were seated at our directors left with the choir in front of him. As the service progressed and it drew to the choir’s contribution, the words caught me. (Italics added)

Abide with me: fast falls the eventide

The darkness deepens, Lord with me abide.

When other helpers flee and comforts fade,

Help of the helpless, O abide with me.

…

I need your presence with each passing hour.

What but your grace can foil the tempter’s power?

Who like yourself my guide and strength can be?

Through cloud and sunshine, O abide with me.

 

I fear no foe with you at hand to bless,

Ills have no weight, and tears their bitterness.

Where is death’s sting? Where, grave, your victory?

I triumph still, if you abide with me.

I’m not a swearing person or taken to crude language but at this point I am moved and am thinking, so there death! xxx you death! You had your chance but I’m still alive. I’m living to do more – (of what)?

Hold now your Word before my closing eyes.

Shine through the gloom and point me to the skies.

At this point the director has been building the brass and voices but he’s demanding even more. He stamped his left foot and dug down-and-out with his fisted left hand to inspire the brass.

Heaven’s morning breaks, and earth’s vain shadows flee;

And, now, instead of the soft pianissimo I am used to hearing with this song, the director digs down-and-out with his right hand to inspire the choir to give all they have for:

In life, in death, O Lord, abide with me.

(Henry Francis Lyte)

Whew! Death, you did have your chance with me. I was at death’s doorstep, unconscious, and on life support for days leaving my family feeling helpless and praying as much as they dared and as boldly as they dared. Little by little I’ve gotten to this point. Not easy for my family or me. But, here I am and I’m still working to be as independent as possible. I’m asking God to abide with me and bless the work I’m trying to do. It’s certainly not what I expected to do or much of anything that involves moving about. Thankfully, we live in a world of being able to communicate with the keyboard and Internet. Is that what I’m to do? Am I to be here longer for our children and families? Is my manuscript going to be accepted and published? It seems the message I have to share is crucial for mobility challenged children, their parents, and health personnel. What message am I to share through my blog? I will trust and watch how he abides with me, not quietly but working to the fullest I can. So, there death! Take that!

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

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 2^nd to 4^th 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