WWMD –What Would Matthew Do?

WWMD

Or, “What would Matthew do?”

Most people are familiar with the slogan WWJD (What would Jesus Do?) and many of my friends use this as a great moral code for their lives. I like it. It’s a good pause before doing or saying something really dumb.

View from the top!

This summer though, I have been thinking on a different line. Matthew and I have been here in the mountains alone during the week and we, meaning I, have been up on ladders painting, cleaning etc.  It may be a little house but there always is plenty of upkeep. Remembering that no one ever called me Grace, sometimes what I do is, well, a little precarious. It takes a whole lot of angels to hold me up on those steep extension ladders.

And so I have been thinking, “What would Matthew do?” What would he do if I fell or was severely injured?

It’s a scary thought for me, often haunting the back of my mind. Those who know Matthew know and regular readers likely have gleaned that he does not talk. Even though he is very caring he shares many of the frightening autistic traits including introspection. He lives in his own little world. If the TV is on, if there is food available and if his computer runs, he is content. No doubt, visitors to our house have seen Matthew come to share news of something exciting on television or to show a great find in his TV Guide. But he only shares things of interest, convincing him to do something else, well, that’s a bigger challenge.

So would he come just to check on someone? I’m not sure. I know if I was conscious I could count on Matthew to seek out the phone but what if he couldn’t find my phone? (Yeah, a common occurrence in this house.) Would he walk down the road to Grandma’s by himself? If he did would he stand outside the gate because emotions are so intense that he can’t stand any extra attention?  (When Matthew sees someone he loves i.e. Grandpa or even Dad his first inclination is to run and hide only coming out after they call his name. Strong emotions are very difficult for him to handle.)

Computer AND TV in one spot. Life is good!

Are we any different from so many of our caregiver friends? Or those who live alone? Am I just whining too much as usual?  There is no doubt we are fortunate in that Matthew’s brain injuries came with birth allowing us to adapt and accept with him over time. We see daily the television commercials with the wounded warrior veterans whose severe injuries caused swift change and upheaval for the families. We can’t imagine their trials. We also know we are lucky that Matthew’s problems do not confine him to a wheelchair and that he can be mobile.  We are blessed to have this son. Our lives and our focus on what is important are so enriched because of him.

Still, as I get ready to put the ladder away having finished painting I have to wonder. WWMD?

PS Now dear friends, do not go into a panic that tomorrow morning I might fall off the ladder and be stuck there for days. Our folks live just down the hill and you can be assured they check up on us regularly. In fact, if we don’t check in by three o’clock the phone rings and I’d better answer it 🙂

Postcards from Home

This is the time of year many of us have kids or grandkids moving out for the first time. It can be an adjustment as it was for Rebecca when she made the move to the college campus. Away from home for the first time can be a little lonely. At first I wrote letters but in today’s digital age where we could talk regularly, Skype and see each other, plus email it soon seemed that there wasn’t enough news to compose an entire page. Eventually it occurred to me that Rebecca, who still wanted to find mail in her box, might enjoy postcards from our past travels.

Postcards.

Why didn’t I think of this sooner?

And so began my Postcards from Home project. I remembered that when Rebecca was in camp we would send her notes and cards but what always received the most comment were the postcards, particularly the ones from her brother with the Ninja Turtles or Pokemon characters. After all, my ‘girly girl’ daughter didn’t seem the type to be a Power Ranger, etc., fan and her fellow campers delighted in seeing this other side of her. With this in mind we began sending postcards more regularly until now, if I remember; we put one in the mail each week.

It’s a simple project especially if you are like me and collect postcards every time you see them. When we were homeschooling we often shared postcards with families from other areas increasing our variety. As I became organized I began adding inspirational quotes related to my daughter’s current situation. (Because I have a short memory, I copied a whole bunch to my word processor and then add the date when I used it in order to not use the one favorite saying over and over…)

Superhero stickers are added to each card to let the recipient know Matthew is thinking of them.

Over time this little project grew when I realized that people still do like to get mail and others could easily be into my week. I admit that I am probably the world’s worst when it comes sending a get well or anniversary card in a timely manner but these postcards were right here in the house and as long as I keep a sheet of the less expensive postcard stamps in stock it takes less than five minutes to put one in the mail. When my postcard selection began to dwindle some of my well-travelled friends were happy to share from their stash giving me an even greater selection.

Postcards—they’re not just for travelers.

You can do this too. We know the elderly aunts love to hear from us and just a postcard is enough to elicit a newsy letter from them. We have lots of instant communication via the social media with family and friends across the country but they still like to get something to hang on the frig, a little reminder that they are loved. If you have friends going through a trying time or maybe with health issues like chemo a postcard can be a little smile in their day.

My friend Megan liked her card so much she shared it with everyone on Facebook!

Buying the stamps does require a trip to the post office and then you have to find your stash of cards which, if you’re like me, are not sitting neatly at your desk waiting to be used. Even an arthritic hand can usually manage to write one postcard. Oh, and I do have one caveat. If you are sending cards to someone who is so unimpressed as to not even send you a text message then cross them off your list (unless it’s your grandson).

Life is short. Send a postcard.

A Harrowing Experience

Though this story happened years ago I still feel the chills and remember it as though it were yesterday.

To set the stage I must share one key bit of information about myself that I never tell anyone but I’ll disclose to you today. When I was 12 our family relocated to a small town on an island in Southeast Alaska. Sitka was a beautiful area especially when the sun was shining (which did not happen every day since it received over 100 inches of rain a year). Because it was on the edge of the ocean the townspeople decided that all children should know how to swim so they built an Olympic size pool at the junior high which was open for summer swimming and during the school year used for lessons. Fine and dandy, right? Well, except when my family moved there my sister and I thought we were too old for lessons since everyone else knew how to swim. This did not pose a problem to me until the semester before high school graduation. You know, the time period when school officials are reviewing your transcripts to make sure you didn’t miss an important required subject. They looked at my records: Good grades? Check. All required classes? Check. College application turned in? Check. Passed Basic Beginning Swimming? Whoops…where was that? After questioning me, and probably my parents, it was discovered that I had missed that important requirement for graduation and the swim teacher would have to tutor me or I wouldn’t graduate.

Oh the trauma I faced. Like a cat, I did not want to get into the cold pool, hated water up my nose and was scared when my feet couldn’t touch the bottom. But the swim teacher (who deserved a medal) did not let my protests sway him from his work and we practiced and practiced until finally I could jump off the low diving board, swim the length of the pool (without crying) and tread water for what seemed like an eternity.

Whew. I could graduate.

There you have it. I don’t call it a fear, I call it a healthy respect of water…naturally Matthew has the same feeling.

Back to my story.

Years had passed and I was married in Arizona and son Matthew was about five years old. In the mountains of Arizona there are many small manmade lakes. The Mogollon Rim country is idyllic especially in the summer, large puffy clouds skate across the sapphire blue sky. I often romanticized about wafting along leaning back in a small boat with my fingers gently skimming the clear deep water. Yes, I read too many romance stories when I was a teen… but I thought we needed to have a small little boat, big enough that we didn’t have to row but easy to transport to these mountain lakes.

In any case, the more common sense and practical spouse of mine suggested that we first try renting to see whether boating would fit our lifestyle, a smarter choice before running out to buy a craft we might rarely use. And so rent we did. Since Bob, Matthew and I were spending a week’s vacation in the mountains at my parent’s cabin it seemed this would be a great time to hire a boat for a day at one of the closer rim lakes. We picked up a nice 12-footer just a short drive from Blue Ridge Reservoir with plenty of room for the three of us.

The lake is contained in a long, steep and narrow canyon and is extremely deep. Tall Ponderosa Pine trees line it but few are able to grow roots in the bedrock so are only found higher along the ridge. From the boat ramp the reservoir snakes around to the dam. It is spectacularly beautiful. And for reasons that will soon become apparent you will have to be content with this picture from The Payson Roundup.

They changed the name to CC Cragin recently. Don’t ask me why. The shoreline doesn’t look nearly as steep from this aerial view.

Or you can use your imagination and look at this photo I took last week up there when we discovered the lake has been drained for major maintenance on the pump system.

This is at the head of the lake but very green and low because it’s been drained. Note those delicate wispy clouds.

The day was everything I imagined: the puffy clouds, the big blue sky, the cool clear water. For a while we putzed around the dam, throwing our fishing lines in but not caring whether we caught anything. The remote location meant it was not a crowded lake but still we saw several other boats and fishermen angling for one of the native Arizona trout but happy to catch a still delicious stocked trout. It was just as peaceful as in my dream.

Until the sun disappeared behind the clouds.

We had lived in Arizona long enough to understand the threat of Monsoon storms but hidden down in this canyon we could see no sign of a significant weather change until the clouds were nearly overhead. Still, we weren’t concerned and just decided it was time pack up our stuff and head back. As we putted along with the little five horsepower motor it soon became apparent that the wind had shifted and now was blowing directly down upon us making forward progress difficult. The idyllic day was rapidly deteriorating, my bright blue sky dotted with cottony clouds of a happy Bob Ross painting was hidden now by dark angry strokes from a tortured Van Gogh scene turning into a full-fledged summer deluge with thunder and lightning bringing with it wind and rain. It happened that I was handling the motor at the time and we decided we needed a more experienced driver so that we could get off the lake as quickly as possible therefore we would need to trade seats.

Matthew was up in the bow of the boat enjoying the bouncy ride. But we knew changing seats in a small boat requires coordination so Bob and I talked about moving as we had done before. Everything went well, I moved to the middle seat and Bob to the rear…

And just as he sat on the bench a ferocious gust of wind pushed the bow of the boat up in to the air with such force that everything changed! In an instant Matthew was thrown out of the boat, our belongings dumped into the lake and the back of the boat rapidly filled with water. A half second later Bob realizing the crisis jumped out of the boat to take the weight out of the back end. He snagged Matthew, who was screaming his head off, but quite safe wearing his life jacket and at the same time with Herculean effort pushed the back end of the boat up out of the water. Where was I? Well, it turns out I was going to take that Basic Beginning Swimmers Certificate down with me to Davey Jones’ locker. Yes, I was hanging on for dear life in a sinking boat.

There we were, a screaming mess, a half sunk boat on the far edge of the lake. Not another boat in sight. Fortunately, our hero Bob still holding onto Matthew and holding the boat from completely submerging somehow managed to swim and pull us to shore. As Matthew and I scrambled onto the steep ledge soaked, covered in mud and crying our hearts out we watched Bob bail water out of the boat. In typical monsoon fashion, nature’s fury was pelting huge rain drops down upon us but the rocky shore was so steep we could not climb to any shelter. There we sat huddled in the cold rain.

And when I say ‘we’ I mean me because Bob did not stop to cry, instead he bailed out the boat and somehow managed to get the motor running. It took him a good amount of time to convince Matthew and me to climb back into the boat if there had been any other way to walk we would have taken it. The rest of the ride was uneventful; by then the storm had died and there was only the chattering of our teeth to be heard above the motor. It didn’t take us long to unload the boat when we got it back on its trailer because everything was left at the bottom of the lake; the camera, our fishing poles, everything. Bob’s company ring, long a source of pride like a fraternity, was gone slipping his finger off as he pushed the boat out of the water.

Even though this happened years and years ago none of us has had a desire to do anything but fish from shore since. So there it is: my most harrowing experience. A day I never ever will repeat because I never ever will get in a small boat again.

Ever.

A Bit of This and A Bit of That

Lots of little things to share this week starting with:

Cats

Do you ever take your cats for a drive? We did. This week we traveled back to the mountains. And this time we brought the cats! Our cats don’t leave the house, in fact nine year old Socks hasn’t been outside since the time he got lost for a month when he was still a kitten, finally finding his way home scared and scraggly. The Black Cat, sometimes known as Spooky thinks she would like to be outside but scares herself so much that she won’t go three feet beyond the door. The cats are content in their home but they are my cats and they are so particular about even being seen by others I feel guilty being gone too long, hence the plan to take them on an adventure.

Sophie checking on her friends.

 

First goal accomplished when we managed to catch both and stuff them into the kennel.

The guard dog.

The ride was not as noisy as I expected, little meowing or crying and fortunately, nobody threw up. But two days later they are still hiding underneath the bed. Of course, it doesn’t help that the little dog thinks she needs to greet them any time one starts tiptoeing out of the room or that she feels the need to show them compassion by crawling under the bed and lying next to them, thumping tail and all.

In no rush to venture out from under the bed.

Puzzleman

Matthew has been recovering this month from major dental surgery complete with bone grafts in his jaw. He finds this is a great excuse to not do anything too strenuous (any excuse in a pinch…) So when we are inside he has been working his old puzzles. Some are pretty simple and he gets them together in fifteen minutes, some he hasn’t quite got memorized and they take a little more time. This picture is from his marathon afternoon working three puzzles simultaneously.

Puzzleman!

Matthew and the Soldiers

Speaking of Matthew, we have started a new web page featuring Matthew. Over the years we have taken a fair number of pictures of Matthew and his heroes including soldiers, veterans, and first responders and now we are sharing them with everyone. If you want to follow along it’s easy to sign up and receive a notice of a new posting. If you know of a hero who wouldn’t mind posing with Matthew please let me know. MatthewAndTheSoldiers

The New Cheerios

Here’s my nutrition pointer this month… With a strong family history of diabetes and one person hovering at the borderline of diabetes (I’ll not mention who but it is not me and it is not Matthew) we have been paying attention to our carbohydrates. You know how it works, eat more vegetables, especially green ones and less grains, especially processed and you’ll be healthier. The other day we saw an ad for Cheerios. Cereal is often a source of high carbohydrates so when I saw the ‘Protein Cheerios’ I was hopeful that it would be a better alternative food. But I had my suspicions because I have looked at cereal labels and remember how Bran Flakes and the like often use extra sugar to cover up the cardboard flavor. Anyway, we bought a box of the new Cheerios to check them out. The flavor is good but…Yikes! One serving has DOUBLE the carbohydrates of the already sweetened Honey Nut version. A major disappointment…and a good reminder why it helps to read the labels.

Our Med Student Update

And finally, you have been asking about Rebecca. She is already into her third year of medical school. Time sure flies. The break between second and third year was officially only seven days because they had to take a major test before continuing and as you can imagine the students studied up until the very last minute. I am pleased to report that Rebecca and all of her friends passed this challenging test and now they are into rotations. She is absolutely enjoying the actual hands-on portion of school now. She also thanks you all for your prayers and support. If you are planning to come for graduation you better start making plans since it will be here before you know it.

Just checking in…

Next Week…a tale of harrowing fright, when my life flashed before my eyes… Don’t miss it!

Life Lived Differently

A Lesson to be Remembered

Today was one of those days when I remember life with Matthew is always different. Not necessarily more challenging than raising one of your kids…just different.

We’re up in the Arizona mountains this week and have been working on yard projects so I told Matthew that we would do something fun today and go hiking. He was all for it and gathered his things as requested ready in short order to head out. This was a surprise to me as Matthew is like many people who believe walking is just a reason to get from point A to point B and that it’s only necessary to get to point B if they have something really worthwhile, like say, French fries.

No matter, I took Matthew’s enthusiasm as a sign of, what, maturity(?) and we jumped in the car. It was only a few miles to the trail head and I was talking about what we might see along the way when we came to the turn off sign. Suddenly reality hit Matthew and he let me know in no uncertain terms that turning off the road was not what he had in mind.

Most of you who know Matthew have not seen some of strong negative autistic traits like hand flapping because they are infrequent but he does do them when stressed or particularly frustrated. And there it was, as we drove into the parking lot he started telling me, “No, no, no…” with both hands flapping.

Still, undaunted and because the little beagle was excited to be on such an adventure, I convinced him to get out of the car…and then out to the trail. The hike I chose was a trail I had been on years ago just before being diagnosed with cancer. That trip we hadn’t made it very far before I pooped out and in hindsight I blamed it on my health, not the trail. So I told Matthew he could make it; that it wasn’t all straight up the mountain; and that we might see some elk or deer.

The sign said it was a short two miles to the springs and hey, we’ve been walking on the treadmill so it should have been pretty easy. Well, maybe it was easy for the dog but for Matthew, it was not so good. Much of the trail was eroded from rains and so narrow that we had to walk single file. Matthew is not brave when it comes to walking downhill when one side has a steep drop off especially if he could not hold on to my hand. But I was determined we would complete the task and my running commentary as we trudged along was filled with positive affirmations and prompts to hang on to the dog’s leash (in Matthew’s case, it is helpful as well as distracting to be responsible for something besides himself) as well as reminders to quit protesting.

Here we are. Oh, I know it doesn’t look too bad but you can see the trail is worn down about a foot from the surrounding hillside even on this nice stretch.

I hoped once we reached the ridge line the hike would become more level and easier walking but it didn’t and gradually I began to realize that with every uphill step how much of a challenge the return going down would be. But the fates intervened and just as we neared the end of the trail we ran into some high dollar mansions built on the top of the mountain. A spectacular view of course, but I knew that those rich people probably weren’t driving a dirt road with their Maserati’s and that we might be able to walk back down the mountain on paved road. Sure enough, with a small amount of trespassing we managed to find a road for this gated and very secluded neighborhood.

Protests and all, it was still beautiful.

As we walked back Matthew decided he no longer needed to cry and the city boy was much more comfortable…until his leg started cramping and I was reminded that those legs have to work so much harder because of how he has to walk.

A challenge in deed. I tried to get Matthew to stop and rest but once we hit pavement his only thought was to find the car, which we finally did.

At the end Matthew was very happy with himself for making the whole trip but when I mentioned that we could take Dad along next time I was met with more very loud protests.

On the plus side, the little dog was a great walking companion but curled up like a pill bug once she reached the back seat of the car. Whew.

So, what’s it like for you? Have you ever said, “Hey, let’s go for a hike!” and everybody piled in the car because they weren’t really listening and thought you said, “Let’s go get an ice cream.” only to realize the truth after you passed Dairy Queen???

Matthew do you want to go on another hike???

By the way, I haven’t yet figured out what Matthew thought we would be doing that was fun, though maybe it was going to the new Teenage Mutant Ninja Turtle movie, that he would think is fun and he would willingly jump into the car for.

A Family Tradition Resurrected

When I was young the family owned a commercial fishing boat in Southeastern Alaska. Fishing is seasonal and when the salmon are running you’d best be out working if you expect to catch any. With a livelihood so dependent on the fish schools and weather we didn’t take many days off in the summer. But each year on the Fourth of July we would knock off early to celebrate Independence Day.

Where we were and who we were with always varied but one constant was that we would make homemade ice cream. We stored caught fish in a hold covered with ice so the key ingredient of crushed ice was always plentiful. The ice cream maker was hand crank and took long enough to freeze that everyone got a turn, starting with the smallest person and finishing with the strong men as the ice cream got to its final stages. This personal involvement made it taste oh so much better than anything store bought. It was the best.

Fast forward to today. We still celebrate Independence Day with family and friends but over the years we had gotten away from making ice cream. Two kids with lactose intolerance put a damper on the effort needed especially since they couldn’t enjoy the fruits of their labor. Still I’ve continued to have a yearning for the homemade treat. So when I ran across a recipe for coconut pineapple ice cream, made without regular milk I mentioned it to Mom. To my surprise they still had the old ice cream maker and a tradition resurrected.

This ice cream maker is well over 40 years old.

The recipe we used came from Pineapple Coconut Ice Cream but we adapted it for our family. It can work for your vegetarian/vegan friends too. Mom had told me that her old recipe called for sweetened condensed milk and we were curious about how this would be replaced until a little research showed us that the Cream of Coconut was not ‘coconut cream’ but a mix used often for Pina Coladas and was a thick syrupy sweet delight with a lot of potential for dairy free holiday treats. I found the Cream of coconut in with mixers in the alcohol aisle. If you buy coconut cream in the ethnic aisle it may be a completely different product more like butter or just fat and without sugar.

1 can Cream of Coconut or use just under 2 cups¾ cup canned Crushed Pineapple drained plus 2 Tablespoons Pineapple Juice

1 1/2 cup Coconut Milk (I use coconut/almond milk) 1 cup Coconut Flakes

This recipe was just right in our 2.5 quart maker. We tried it first with a half recipe and it was fine I think you could easily double it for a larger maker.

You will also need crushed ice and rock salt. Table salt will not work. Bigger cubes of ice will work but are not as easy to handle.  If you are using an ice cream maker, either electric or hand crank I recommend doing it outside because there is bound to be salt water spilled.

 

As far as the recipe goes, mix the ingredients together, best if you can do it ahead of time and then store in the refrigerator until ready to make. According to my folks, a chilled mix is best. We made ours early in the afternoon and then once it was as stiff as we could turn it we transferred the deliciousness to containers and put the freezer until we were ready. Back in the old days we would mix as much as we could then cover with additional ice and a blanket and just let it freeze harder in the mixer.

Just like in years gone by everyone was enlisted to help including the kids and grandparents. Matthew had to be convinced that he should crank longer than 30 seconds but with Grandma’s help he got in his fair share of turns.

This ice cream was so easy and so delicious that we will be making it again for our Labor Day festivities. We are excited to add this fun tradition back to our summer holidays. It is guaranteed to add good memories.  If you want to give it a try let me know what you think. And if you use a hand crank mixer be sure to send me a picture!

Are You Accommodating?

Recently we traveled to Southern California. No matter when you visit the San Diego area it’s beautiful but especially in summer and especially for us “Zonies.” It’s a welcome respite when the temperatures climb over three digits as evidenced by the high number of Arizona license plates seen on their freeways.

So there we were with a free afternoon and we decided to visit the Cabrillo National Monument. Regular readers may remember the excitement Matthew gets when he can stamp his National Park Passport (I know, I should have realized this years ago and he could have filled his book by now.)

Juan Rodriguez Cabrillo was the first European to step onto the West Coast of the United States back in 1542.

Anyway, off we went to see the monument, watch the navy ships entering the bay and to enjoy the beautiful weather. Oh yes, and Matthew had his passport book.

When we arrived the headquarters to the park was being renovated, retrofitted, to be more earthquake strong. The main visitor’s center was closed but signs directed us to its temporary housing. Right in front of the entrance, was a display case that caught Matthew’s eye. There was a prominent arrangement featuring a junior ranger badge and its accompanying paperwork.

I was somewhat familiar with the Junior Ranger program. It’s for kids who are given an informational paper with questions to be answered as they visit the park. The last time we looked at it was when Rebecca was young and Matthew could sponge his answers off sister to earn a badge.

But it caught his eye so I walked in ahead of the boys and explained my predicament, asking if I might buy a badge for Matthew. There were two people working at the desk. The younger girl just looked at me as if I had a second head while the older man stated quickly that the badges must be earned and no one could simply buy one. So I explained that Matthew does not talk and cannot write but that he really, really liked badges and rangers. The man paused a moment and then said, “Well, why don’t you do the project with your son? It would be a good learning experience for you both AND when you complete the questionnaire you can both pledge to be good rangers.”

Thank you Mr. Ranger!

Thank you for understanding Matthew’s desire and not being stuck in a regulations rut that wouldn’t allow for accommodations.

Off we went; to see the monument, the lighthouse, and to learn about Point Loma.

Raise your right hand and swear…

The questions were harder than I expected…and at one point we had to send Bob back to find an answer but we persevered and we succeeded.

Admiring his new badge.

The result: as you can see, Matthew took the swearing in ceremony very seriously.

Junior Ranger Matthew with his Cabrillo National Monument certificate and badge.

After you visit the monument be sure to drive down to the shore and spend a few minutes looking through the tide pools while you watch the ever changing ocean waves and then through the beautiful and humbling Ft Rosecrans National Cemetery which reminds us how many brave warriors died that we might enjoy living in this great country.

 

But back to my point… I know that for everyone reading today’s story it’s like preaching to the choir. You already know Matthew and people like him who might need a little extra effort to accomplish their goals. You already understand how important it is to be accommodating. And for all your understanding and willingness to spend those additional minutes we thank you.

 

The Treadmill

It occurred to me the other day when posting the story about my pea soup years that I hadn’t written since the end of January. So, for the three of you who have been wondering about the hiatus here’s the scoop.

Last year Matthew and I started walking on a treadmill. Then summer and vacation took over followed by fall and excuses, etc. so the treadmill stood there collecting dust. After the holidays we (and that’s the empirical ‘we’) decided to start again and get back in shape. We found that 30 minutes a day could work neatly into our schedule and we were set.

Set, that is until the day I talked to my friend Georgann. Georgann has been my inspiration, she is one of these walkers who goes out rain or shine and gets her exercise. We were sitting there talking about walking, I smiling smugly to myself when she pulled out her FitBit which show she had logged in six miles that day.

SIX MILES?

The one and a half mile stretch that Matthew and I were so proud of suddenly seemed pretty miniscule, no wonder we were barely breaking a sweat. So, I decided to step it up a notch. Well, yeah. That didn’t work. In fact, this is what I looked like:

I even thought the treadmill was broken because it kept speeding up but the repairman assured me that the problem was all me. I was not keeping up and dragging the track down and every so often it self-corrected. Through extreme perseverance we ever so slowly improved.  Today some people see us walking on the treadmill now and wistfully mention  they would like to keep up our pace… I remind them we didn’t start on high speed.

But this was the point where our exercise began to interfere with, well, everything else. It took time to find the time in each day. Something had to give…and it was me. Instead of sitting in bed leisurely drinking coffee I had to get up and get going so that I could be done in order for Matthew to hop on for his turn at precisely 8 o’clock. It has to be a 8 o’clock because that’s when Daniel Boone is on and that’s a requisite. Initially, we were so tired that getting our exercise in was the highlight of our day…sheesh, we were worn out.

Finally, after almost six months we’re finally getting there. We have significantly increased our speed, distance and endurance.

Matthew is doing very well with his walking. I was worried because he has a particular gait reflective of his cerebral palsy diagnosis and tight, tight calf muscles. But as my mom pointed out to me, Matthew looks really good on the treadmill. In fact, now that we are paying attention we realize he is walking better on the treadmill even through the up and down hill routine. I’m hopeful this will translate into more balanced muscle tone in his legs and better walking in general. I also finally realized that instead of blaming Matthew’s droopy, sloppy, ill fitting shorts on worn out elastic or his super heavy wallet (the one stuffed with picture gift cards), the truth is that he was becoming very fit and has lost much of his belly. When we went shopping for new shorts we discovered he went down TWO sizes! TWO! No wonder his pants wouldn’t stay at his waist.

Matthew looking trim!

On the other hand, my progress is a little slower and my pants still don’t fall off. Hey, I’ll still blame the chemo. So what if it’s been over four years? Okay, okay, maybe it’s harder to lose weight when you become a woman of a certain age… But the important thing is we are becoming healthier and in better shape.

I knew you’d want to see my progress so Matthew took this pic for you!

So that’s it in a nutshell. This is where we’ve been, the whole spring we’ve been putting on the miles and never leaving the living room.

Is a treadmill the best form of exercise for you? I surely don’t know, but it works for us. It took time for me to be comfortable with Matthew enough so that I didn’t have to stand right next to him. I knew that if he ever fell he would not want to get back on.

After all these miles and we also can share what we like and don’t like about the treadmill, about our shoes, and about how important it is that the treadmill is stationed smack dab in front of the television.  In fact, this treadmill was tucked away in the bedroom where it served as a clothes drape for Bob until we moved it. There’s no two ways about it, mindless TV viewing helps the time go by. We’ve decided this exercise is important enough that we even picked up a reconditioned model for our time in the mountains. You are welcome ask questions or even to come by and try out our treadmill, just don’t come when Daniel Boone is on.

It’s a Conundrum

Sorry I haven’t written in a few weeks. Had you stopped by you would have found me sitting her wallowing in my own self-pity. No, nothing is wrong with me. It’s just sometimes the reality of Matthew’s limits come to the surface and I sit around feeling sorry for myself.

Matthew and his pal Smokey with the beautiful red rocks of Sedona in the reflection.

For those who haven’t met Matthew I’ll share just some of his challenges. He is non-verbal which doesn’t mean he is quiet, instead it means he talks a bit, most with prompting, and makes sounds (some which are obvious—like right now as he sees the Lone Ranger come into view and he cackles with excitement). He can say NO to most anything and left to his druthers would probably never go anywhere because this is his stock answer. Matthew also needs help with everyday things; some he can do independently though not to a ‘mom approved’ standard, like brushing his teeth. Even though he does not talk he wants to be part of all conversations using tools like his TV guide to pull you into saying something for him.

Superhero map reader.

That said we aren’t complaining. We live a good life. He and I are together each day with our schedule of events and activities. Matthew’s knows what time it is and plans for his lunch and later waits outside for Dad to show up. Our routine is not all that exciting but we manage to keep the house in order, care for the pets, visit friends, shop, etc. Contrary to popular opinion, and Matthew’s personal preference, we don’t spend all day sitting around watching TV eating bonbons.

Weed eliminator.

The Department of Developmental Disabilities offers assistance for disabled adults.  Matthew qualifies for specific programs because he was a disabled child who became an adult; adults who become disabled are covered differently.

We parents, as guardians, can choose to live without government aid. My own personal preference would be to keep the government completely out of our lives but, in our case, especially after my cancer and mortality reality check, we accepted some of their programs including health insurance and some respite care. Because we receive these services the government wants to make sure we are keeping Matthew’s best interests at heart. So they come by to check on him.

Apple picker.

And that’s where we were last week. It’s a quarterly meeting and to me seems silly but I know that sometimes those who are disabled are taken advantage of and not well cared for. It’s sad to think about but I know it happens. Anyway, the case manager assigned to Matthew has to visually lay eyes on him, speak with him and generally assess that Matthew is in good condition.

Salad eater.

I know what you’re thinking. You’re thinking it’s all good and well that someone, especially an outside source, regularly checks on the well being of the weakest among us, those who are most vulnerable. And you would be right.

But.

Something seems to happen when the government gets its finger in the pie.  Sometimes the workers, well-meaning though they may be, start to think they know best. Maybe you’ve run into this. When Matthew was in school we would meet with the ‘staff’ who more often than not appeared to be on a power play as they all sat on one side of the table opposite me, the mom, telling me what was best for my child and too often making light of or in some cases even laughing at my suggestions.

Grrrr…what a terrible flashback, I felt my claws coming out just remembering…

So back to today. These social workers who come to visit are well meaning but this year I have been getting the feeling again that they would go back to their little government cubicle and write up a plan for Matthew that their superiors would approve of.

Log loader.

The agent this week did just that. Each visit he asks whether Matthew should be in a day program or a group home to which I respond that Matthew is quite content right where he is. But this time he wanted a specific list of what activities Matthew participated in each day. What does he do with his time? And how could he, the agent, justify to his superiors that Matthew could stay home rather than going to a day work program?

Log unloader.

What? Wait a second, what kind of communistic questions are these? Since when did this person, who has met Matthew only twice, know what is best over the desire of his parents of his daily schedule?

And therein lies the rub. I grew frustrated with the agent and asked if I needed to even meet with him. But of course, I knew the answer. If I want Matthew to remain eligible for services I must accept their intrusion into our lives.

Brother.

It’s a conundrum.

And So???

I know. I know. Dear gentle readers, who followed us all the way up to the North Country and back, you are right to ask this very question. What happened to us? Did we just disappear? Did we melt in the heat? Well, honestly, time escaped me and until my air card required its monthly renewal I didn’t realize how much had passed.

After our return to the very HOT Valley of the Sun we had only a few days before Rebecca headed back to school. We are learning that medical school programs do not have to follow the same schedule as the regular university. Without Rebecca’s company we decided to let Bob fend for himself and Matthew and I headed up to Strawberry to work on a few projects. . . and that’s where we’ve been since.

My helper.

You may remember we have a little place right on the side of the Mogollon Rim. It’s wonderful Ponderosa Pine country and at 6,000 feet it is always much cooler and peaceful than the metropolitan area of Phoenix. Once the monsoon season arrives it brings cooling rains most every afternoon and provides an amazing respite from the valley heat a short two hour drive away.

The monsoon brings welcome rain which is especially fun to watch from the front porch.

Anyway, there have been a number of items on my priority list begging for attention at the place. Since Matthew and I had no other commitments we thought we’d use this time to start tackling them. As we were working I remembered when last I had attempted to work on some of them. For example, I wanted to take the many sandstone rocks from the lot and build them into a stairway on part of the hill. I remember well heading out with my shovel in hand and trying to dig the dirt so that I could move the rocks around. I remember how quickly I became discouraged when I tired after chipping out what seemed like only a half shovel of dirt.

I blamed the high elevation. . . It takes time to become acclimated and be able to work at such altitudes.

I blamed the rocky soil. . .Who can shovel this hard rock filled caliche?

I blamed my age. . .After all, I was nearing that scary mid-life number.

I blamed everything but I didn’t realize the culprit. Longtime readers and my family know what it was. They know the answer. I discovered it in September four years ago. It was an insidious cancer that was so slow growing in my body that all its symptoms were able to be explained away.

Today I lecture people. I know the caregiver’s life is never her own. But there are times when we must make ourselves the priority. (And even though I had gone to the doctor I had put off getting that screening mammogram because. . . well. . . there were other things needing my attention. . .)

So there. After going through the hell of chemo and radiation therapy I came out on the other end, slightly worse for wear. I still have chemo brain and just hate when I can’t remember the _____.

Before

and After.

But. Here I am and it is four years later. Matthew and I headed back to the mountains to see what we could accomplish. And this time, I’m pleased to report that I could shovel the dirt. And I could move the rocks. And we were able to trim the trees and use the weed eater—we hauled off three truck and trailer loads of brush. And we even worked on the inside of the house painting.

My rock staircase. A work in progress.

You may be asking when or if we will return to the valley. But I know if you are fighting the urge to turn down the air conditioner and sweating instead of sleeping at night you will understand that I am keeping the windows open and sometimes, well sometimes, the fan is just a little too cool. Ha. We’ll come back when the high temp drops under triple digits. Or. . .

. . . if Matthew’s satellite reception goes out.

And so. . . that is my report. I am happy to say we have been busy. But, never fear, I have been thinking of lots of other things to share, including a couple of product reviews and I promise to post them soon.