Two Toddlers and the Toe

Having two toddlers in a room can create some sweet moments. Having two toddlers in a room can lead to some challenging moments. Having two toddlers in a room will certainly provide some humorous moments.

Little Miss sat on the sofa watching all that was going on around her. Little Mister was at that age when he was practicing his walking, and the sofa was just the right height to cruise along it. When Little Mister approached the end of the sofa, Little Miss was sitting with her legs stretched out. Little Mister happened upon Little Miss’s feet. And we know what babies/toddlers like most to do with objects; so anyone watching might have anticipated it, but most of the adults in the room were engaged in conversation.

Little Mister leaned forward until his mouth met with Little Miss’s biggest toe, and that toddler toe fit perfectly in Little Mister’s mouth. Little Miss’s knee-jerk reaction was to jerk her knee, bending it inward. But then, pausing for a moment, she noticed that something about her toe had changed….it was wet! And it deserved to be examined. So she lifted it up, saw it was glistening, then looked down at proud Little Mister who was responsible for the change in sensation. Her facial expression was priceless.

This grandma, who watched the scene unfold, was quite entertained. The camera had been poised for such a moment as this and the pictures allowed it to be relived many times, and shared with you.

No toes were harmed in the capturing of this toddler moment. 

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In December of 2020 and in April of 2021, we stayed at the Staybridge Inn on the east side of Madison. The suite had a separate living area, bedroom and bathroom.

The living area was similar to the picture shown below from the hotel’s website. It was a comfortable and practical space we especially appreciated when family came to visit us there. It had a very homey feel.

Hotel website photo

The kitchen area had a stove, oven, dishwasher, and a full-sized refrigerator, plus plates, bowls, silverware and pots and pans – everything you might need. A burner on the stove wasn’t working.

Hotel website photo

The bedroom looked similar to this website picture:

Hotel website photo

The heavy chair on the side of the bed had to be moved by Mr Legs so my wheelchair could fit next to the bed. The nightstands and lampshades posed a challenge for getting my chair back far enough to transfer in and out of the bed. The space from the foot of the bed to the bathroom was a tight fit for my wheelchair to maneuver through; but I managed it. The big windows in the rooms were appreciated.

The pocket door (instead of a traditional door that gets in the way) was a great feature that gets a thumbs up from us. This one happened to be off it’s track when we arrived, but Mr. Legs fixed it.

This is the picture of the bathroom that I took.

The sink was pretty but not practical. Surprisingly, it didn’t provide much more access to the sink than a traditional inset sink on a vanity. The base made it difficult to roll up to it. The little shelf next to the sink was not sufficient for both of our toiletry bags. The mirror above the sink was placed too high for me to easily use. There was a full-length mirror in the bedroom, but it’s placement in the room meant it was blocked if the door to the living area was open.

I’ve seen many of these hotel showers where the shower seat is too far away from shower controls to allow for independent showering. However, the sliding bar and long hose did reach the seat, making showering with help possible. The box for towels was trendy, but my wheelchair hit it more than once when I backed away from the sink.

Hotel website picture

See that nice soap dispenser below (added later)? It prevents the shower seat from being lifted up. When the seats are down, water splashes off of them which can be unpleasant for those who shower in a standing position.

The two long grab bars at the toilet were more than sufficient and there was plenty of room on the side of the toilet to maneuver a wheelchair. The toilet seat itself is one that slopes inward, which makes balancing on it difficult for someone without full body control.

At one point during our stay, the hotel elevator was stuck and inoperable, so my wheelchair and I weren’t able to get to our room on the second floor before going out. When we notified the front desk, staff called for maintenance right away. The desk clerk said there was a ramp at the end of the building, but our time was limited. By the time we returned, the elevator had been repaired.

Hotel website photo
Hotel website photo
Hotel website photo

The hotel’s variety of breakfast options was impressive and the design of the area allowed free flowing traffic. The comfortable breakfast/gathering area and the exceptional large outdoor courtyard were features we enjoyed a great deal. The décor at this hotel was very pleasing. There were some minor inconveniences, but we had a great stay at this wonderful place. We did return, and will stay there again whenever we are in the area.

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Facebook Flames

Social media can be a minefield. That’s exactly what it was when I saw the entry of a friend there. We’ll call her Diana.

Diana could be very kind, but she also clearly had anger issues that were made apparent through her coarse words about others. On that day, Diana wrote this:

“Not that I want praise…but I swear I get so tired of rude people. Our society thinks it’s perfectly acceptable behavior. Helped an older gentleman in a wheelchair who was really struggling to get up a ramp and into a restaurant this evening. He looked at me like I was dirt. Hey Buddy, don’t mention it. Glad I could help.”

Then someone responded with this:

“Did you ask first? People should be able to choose if they have help or not. If you didn’t ask, you may have seen your desire to help as more important than his desire for independence. If that’s the case, then you may well be mistaken who the rude person is.”

Although the responding comment may seem a bit harsh, a point was made. When a person is confined to a wheelchair, the chair can and should be considered as an extension of the person. The chair, when being used, deserves the same respect as the physical body of the person in it. It’s not acceptable to go up to a stranger and touch them, so why would it be okay to take the handles of someone’s wheelchair without permission? While the man appeared to Diana to be struggling, independence and a sense of accomplishment can be valuable things for someone who has suffered loss of mobility. I understand the desire to help, but it’s important to show courtesy, and it is respectful to ask if your help is needed or wanted before taking action.

What do you think about Diana’s comment and the response?

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Last July, we traveled to the Wichita area in Kansas and needed a hotel for two nights. We chose the Holiday Inn Wichita East I-35. The hotel is beautiful with it’s warm colors and sleek designs.

It was the first time we had travelled since COVID-19 started, and we discovered that some things about hotels had changed. I was surprised there were so many sitting areas in the lobby until we realized that what used to be the breakfast area was now another area to sit. We had heard from a friend that hotels were not serving breakfast anymore. Social distancing and masks don’t quite fit in with hotel breakfasts as we used to know them. Our friend was given a paper bag breakfast upon checkout from his hotel stay somewhere.  We received no breakfast at this hotel.  Housekeeping did not clean our room until we checked out, which ended up being the standard during the pandemic.  I began to think the room rate should have lowered somewhat without breakfast included and automatic housekeeping, until I began considering all of the new measures hotels are likely obligated to provide for customers and for employees; and I realize that with sanitizing measures and lack of business due to people not traveling, hotels would be fortunate to stay afloat at that point in time.

The basic layout of the hotel’s handicapped bathroom was pleasing to the eye, but not  practical for everyone. At first glance, the shower was welcoming; but it would not be possible for me to adequately manage getting in and out of it. The shower’s doorway was wide enough, but half of the shower space was to the left of the doorway and not open. Specifically, there was not room to transfer from a wheelchair to a shower chair because there was a wall blocking entry. 

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The toilet had one long grab bar on the side of it.  It needed another bar in back of it.  There was a towel rack on the wall, but I had concern it wasn’t sufficiently anchored for me to use it as a grab bar. We carefully tested it, and it likely could have been used; but we would not have wanted to find out the hard way that it was not strong enough.

The sink was set up to allow a wheelchair to slide under it, but the thickness of the counter with the wood piece below it coupled with the longer distance to the sink than usual (because of its shape) prevented me from getting close enough to use it.  Framed mirrors are pretty, but the frame made the mirror itself too high for me to use.  There was a full-length mirror across from the bathroom, but the lighting there was poor.

The way the large bathroom door opened into this room was better than most, but it went past the wall of the bedroom and was awkward to open and close.  There was no low hook on the inside of the bathroom door.

There was ample room on the sides of the bed for my large wheelchair.   I did not check the height of the bed in this room.  Sometimes the height of beds make it difficult for wheelchair users to transfer onto and off of it. My wheelchair has height adjustment so it was not an issue for me.

 The hotel, with its lovely entrance, roomy and welcoming lobby, considerate employees, and nice room with pleasing décor made it a comfortable place to be; but its accessible room/bathroom leaves room for improvements for practicality. Our experience there reminds me that meeting ADA requirements is often not the same thing as easy to use.

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When GPS technology was first available in our vehicles, and a change in direction was necessary to reach a destination, the device would alert the driver with the word “recalculating”.  In a similar way, when MS affects the body, changes in the way tasks are done are necessary and we must recalculate. As a driver of a vehicle must find a new route, a person with MS must find a new way of achieving a task.

Changing the way we move and perform tasks is a way of life for those with a progressive illness.  It becomes a constant theme of “consistently changing”.  Movements can become a complex orchestration of using what body parts still work well, coaxing the ones that partly work, ignoring those that don’t work at all and avoiding those that work against you. Getting it all synchronized to achieve a goal can be a tiring task.  Just as hearing the computerized voice repeat the word “recalculating” became frustrating, having to recalculate tasks becomes frustrating as well.

Like navigating a car in an unfamiliar area, recalculating tasks can involve modifications to direction, sometimes multiple revisions, navigating around construction, breaking familiar patterns, shifting management, negotiating, realizing, executing.  Tasks, previously done independently, might require assistance from another person, or might require that the task be given over completely.

Adjustments must also be made to thinking.  Independence can turn to dependence, pride yields to humility, sometimes hope has to take a backseat to resignation, and contentment may temporarily give the right of way to grief until that also is recalculated.  It’s all part of the journey.

When physical changes mangle my method of achieving a task, when my sense of direction is sabotaged, the memory of that repeated word from the GPS can cause me to chuckle or roll my eyes. In spite of detours, when a task is successfully recalculated and the destination is reached, there’s a sigh of relief and a sense of accomplishment.

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In February of 2020, we stayed at the Embassy Suites in Overland Park. That was more than a year ago, so the layout and features could have changed between then and now, but I will post the pictures and opinions I have as a comparison to other hotels.

Our corner accessible room at this Embassy Suites had a very large living area, nice sized bedroom and generous bathroom. The wide and layered draperies lent themselves to an elegant feel there, and I must say that my favorite part of the space was the huge drapery pulls that made the window coverings easy for me to open and close from a wheelchair, a luxury I don’t often have.

The bed/bedroom was wheelchair friendly because there was ample room on both sides of the bed to roll up to it and transfer onto it.

The bathroom size was generous, but the layout presented challenges. The sink was relatively easy to roll up to and the mirror was low enough to use. A single lever faucet is easier to use than separate hot and cold controls, but that was a minor inconvenience.

The toilet had one bar behind it, but no bar on either side, which makes transfers onto and off the toilet difficult for someone in a wheelchair. With no wall to attach a bar to, a pull-down grab bar between the toilet and shower would be helpful (if there is room for one).

The shower in this bathroom had good grab bars. It had a height adjustable spray nozzle with a long hose but the shower seat is too far away from the water source for someone sitting there to use the controls and shower without assistance; and it may be difficult for someone to help because the toilet is placed close to the tub. A low soap dish would be an added convenience.

It’s a beautiful place and we enjoyed our stay there. There are many things about the hotel we liked. The breakfast and complementary evening reception at Embassy Suites hotels is beyond compare. The cardboard cover over the television remote signifying it was sanitized was a nice touch, and the room overall was lovely. I do hope that when it comes time to remodel, changes are made to the bathroom to make the space even better for their patrons who have need for accessibility.

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What is it About Raspberries?

Is it their unique, sweet taste? Is it the familiar crunching of their seeds between your teeth? Is it the way their grid sections form together into a fascinating dome shape? Is it the hole inside of them that is just the right size for a toddler’s index finger to carry them from a bowl to their mouth?

It’s all that and more for this Wisconsin grown girl with childhood memories of them growing in a huge patch of bushes in our family’s backyard.

Every year when the calendar turns to July, I think back to my time spent in that patch of wilderness in the yard of my family’s home. It was the best use of space and time to let the bushes grow in one big clump. It wasn’t, however, the ideal way to pick the berries. Raspberry bushes are a great example of how nature protects itself. The thorns were a periodic reminder that the berries belonged to the plants and the plants didn’t give them up easily. Many of the berries were hidden under the leaves so it was a concentrated hunt to make the most of your time there. The bushes were a favored home for hearty Wisconsin mosquitos who loved the dense leafy bramble foliage, so time was devoted to futilely trying to fight them off with flailing arms. There were also birds and bugs of different shapes and colors who liked the raspberries as much as we did.

How the beautiful berries grow is a common but fascinating process. The plants are first adorned with small white flowers , then hard yellow nuggets replace them, soon turning pink and then bursting to vibrant red overnight.

In peak season, Mom used her biggest bowls and buckets to harvest the plump bright berries. Ice cream buckets, with their tall sides, were best to protect from possible spillage if swatting pesky mosquitos  The bigger the berries you picked, the faster your bucket was filled, although many never made it to the bowl depending on how much of an appetite you started with, or worked up to while there.

Sometimes I was in the patch alone, sometimes I was joined by my sister, or my mom or dad. It was best to be there with my Dad as the mosquitos favored him.

Picking the delicate berries is tedious, and prices for them in stores reflect that. Not counting our time, or loss of blood donated to scratches from the bushes and to the mosquitos, the raspberries in our backyard were free. Although the season seemed short, it did last for up to a month; and the berries came in abundance while it lasted. The buckets and bowls went out empty and were returned brimming. I can still see the bowls of berries sitting and soaking in the sink until most of the bugs floated to the top where they could be skimmed off. The bugs that were unseen, one could reason, were protein thrown in. Those raspberries were an explosion of taste whether eaten alone one by one, on top of a fruit salad, or in jam, but nothing could top them mashed with a touch of sugar added to create the perfect topping for ice cream.

Our backyard forest of fruited foliage provided more berries than our family could eat. Mom shared with grateful neighbors, and steam wafted from the stove as raspberry preserves preserved that sweet raspberry taste for many months to come. My mouth still waters when I remember eating butter and Mom’s raspberry jam on Mom’s warm homemade bread.

The bushes were first shared by a friendly neighbor. Then, when our family moved, bushes were transplanted to the new yard where they multiplied and provided as much of a bounty as the patch they came from. And when Mom moved two more times, a sample of the beloved bushes followed and thrived; so that when I came to visit with my own family, my children learned the jeopardy and joy of harvesting, washing and eating the berries.

For many years, grocery shopping as an adult on a budget meant passing raspberries by at the store. But these days, they are a common item on our shopping list, a sweet treasure of taste that takes me down memory lane and right into my family’s backyard.

Some memories grow sweeter with time as they ripen with age. And as we watch our granddaughter put raspberries on her index finger and carry them into her mouth, I hope she and other descendants will care enough to one day read what it is about raspberries that stirs fond memories for this Wisconsin grown girl.

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In November of 2019, we spent a night at the Hampton Inn in Derby, Kansas.

The bathroom was small compared to other hotels we’ve stayed in. There wasn’t a lot of room around the toilet to maneuver.

The sink was interesting. It had a pedestal sink look to it, but also had some counter space.

The tub/shower had three levels of grab bars at the back, but none on the sides. No shower chair, although perhaps one was available upon request. The controls, spray nozzle and hose were nicely positioned.

I was intrigued by the wallpaper.

The hotel was convenient to our destination and met our needs. When we returned to the area at a later date, we chose a hotel that offered a more spacious bathroom offering more convenience for my large wheelchair.

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In November of 2019, we stayed at the Quality Inn in Parsons, Kansas. Although this review is being posted long after our stay, I am glad to include it here with positive comments. The accessible room with roll-in shower was very spacious and the layout was extremely functional.

Also spacious was the bathroom. I hadn’t seen a setup like this before.

I could roll under the sink well; and although it felt a bit tight, there was adequate room to use it. The mirror could have been hung a few inches lower but there was a nice full-length mirror in the room.

The shower had a very practical setup. The controls and nozzle were well within reach of the pull down seat, giving options for both physically able and challenged.

The grab bars for the toilet were more than adequate and well placed. Nice to have the towels within reach from a seated position.

We had a comfortable stay in a well planned accessible room in a great place.

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The Spoils of War

At 5 feet 11 inches for most of my life, I was accustomed to being tall and enjoyed all of the benefits it afforded. I have now spent years of my daytime hours in a wheelchair. After so many prior years of standing tall, not being able to reach things and not being eye level with people has led to some frustrating moments. I’m glad for the help Mr. Legs gives me and I had mostly settled in to my shift to short stature. However, MS wasn’t satisfied with the territory it had gained and I had no way of knowing that I would face more height challenges.

As I have explained in a previous post titled “Swiss Cheese”, (click here to view), I used to perceive MS as an adversary that would attack in a logical and relatively straight path. The tingling and numbness in my feet and the weakness in my legs that I felt many years ago led me to believe that MS was starting there and would move upward. That has been mostly the case, but MS has also been at work in other places at the same time.

MS, at least my MS, does not follow any given pattern, direction or sensible sequence. Rather, it strikes at random times, in random places, and in random severity, with no warning. So essentially, MS has polka dotted itself across my body in its own happenstance way (leaving holes of usefulness, like Swiss cheese). Between its attacks, I wait to see what’s next….how it will affect me, and where it attacked – in that order; for it’s much easier to determine what I can no longer do, than to figure out what MS has done.

Earlier in life, Mr. Legs was a combat arms army officer, and I have likened MS to an enemy force gaining ground inch by inch in one direction as it wins battles of war against my body. But the progression of an enemy in a land war doesn’t necessarily mean it has gained ground in a straight path either. Just like MS, a formidable opponent in a war for land uses the element of surprise as a useful strategy, and the path of progression can be spotty and crooked. In both MS and land wars, territory can be gained from battles in multiple places at multiple times and in multiple ways. My enemy’s name, Multiple Sclerosis, is fitting.

In the war that MS is fighting against my body, it had been secretly infiltrating areas of my back. MS and gravity had joined forces for a surprise attack. With no warning, the weakened spots of my back gave way and my spine accommodated them by changing its relatively straight line to a 40 percent curve. It seemed like I woke up one morning to discover my torso was significantly shorter. I couldn’t make sense of it. It wasn’t logical, but what part of war is logical? A battle had been won without me knowing it was being fought. Territory was gained and I was left to alter the map of what parts of my body were now occupied by the enemy.

Recent x-rays of my curved spine

In my pre-war body, my long torso was in proportion to my long arms and legs. Even when affected by MS, the length of my arms and my legs remains the same; but my torso, with its change in length, is shorter now, so I can no longer reach some of the things I used to reach from a seated position. The physical changes that happened required immediate shifts in daily tasks and more independence was lost. A few inches can make a big difference. This kind of physical change affects a body internally as well. Those unpleasant changes and their challenges were met before realizing their cause (my spine curving).

My long torso is now condensed. My altered body, with its long arms and legs attached to a shorter torso, is a striking visual change for me. I look in the mirror at this newer, strange physical version of myself and my mental acceptance of a different body image lags behind. Loss in any war is more than physical casualties. Adapting to the loss emotionally is difficult to gauge.

When I transitioned to spending full time in a wheelchair, I believed my height change to permanently sitting was the end of that challenge, but here I sit years later even shorter. Whether losing over a foot or a few inches, adjustments are required. Once standing at 5′ 11″, I now sit at about 4′ 2″. At doctor appointments, when asked for my overall height, I’m stumped. I just give them my best guess.

There’s no way to foresee the battle plan of MS. Even experts in both land wars and MS fields have no way of predicting what will happen next because every war is unique and MS affects each person differently. There is very little I can do to fight back, but my strategy, my battle plan so to speak, is to use medications that are available and use adaptation and resourcefulness in dealing with the spoils of war. I will use my battle scars to remind me of the strength built through the battles. And I will remember that the long and short of this tale seems to be that, whether a war is waging outside of your body or within it, it is wise to expect the unexpected…and then accept and absorb the spoils of war.

Praise be to the Lord my Rock,
    who trains my hands for war,
    my fingers for battle.
He is my loving God and my fortress,
    my stronghold and my deliverer,
my shield, in whom I take refuge Ps 144:1-2

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