Intense Love

Intense love does not measure...
It just continues to give.

~ Mother Teresa

My husband's night table corner now graced with the perfect picture frame of an imperfect sized photo, taken by chance and enjoyed by both of us. I always tease him when he calls saying; "Hello boyfriend", where I would enjoy little girl giggles near me in my background - thus is where the frame idea came from when I saw it displayed at the store.

Resting near the picture frame is a small statue of Our Lady, the one our young grand-daughter paid for with her own money and bought for my husband while he was in hospital last year. So sweet.

Were you married recently or have you been together for a long time?

Here's a challenge for you...

Do you have a photo of your spouse on your night table, one in full view when you rise and when you lay your head down to rest at night, having him in your mind and heart 24/7? If not, why not put that on your priority list of things to do today.

• Find a photo of you as a couple, one that evokes warm memories and order a copy if necessary.

• Find the perfect frame and place it on your night table.

Voila!

Now how about one for you and another for him?

Even in tough times, blessings do unfold

Reconnecting with family and friends after living away for some time is always a deeply gratifying experience, a total memory builder we can hug tightly and keep close when having to return back east again. Who knows when these types of visits will be possible in the future once more, therefore, we seize the day, allow for serendipitous moments which seemingly unfold in ways least expected.

During our recent trip west, for some reason my husband's first two days after his later arrival were spent with sudden and sometimes extreme breathing difficulties. Not sure what was even happening, it took everything he had to maintain composure during any walking or movement action moments, even just perhaps slowly taking a few steps toward the vehicle a short distance away. If he encountered a slope or stairs to climb, we knew in advance to take it slow and steady.

Anxieties began to build when he realized all the muscles on his stomach and around his rib cage were suddenly seizing up and screaming for mercy just at the same time he wasn't able to catch a normal breath of air, feeling dizzy and weakened by uninvited difficulties.

In the midst of the sessions, his hands began to tremble, his eyes showed me his alarm and distress, instantly requiring calm and quiet, suddenly unable to speak, at all, just pulling back into survival mode to avoid the panic sensations quickly creeping up his throat from taking control.

This isn't anything new for us, we both know this moment when it arrives. There is never a telltale it's even about to erupt, always varied in form, yet definitely always alarming in nature. This surprising episode, like others experienced in the past, was completely varied and different than before.

When all seized up and began to take full control so swiftly, very suddenly consuming my husband's total concentration to cope until passing, continuing and often crippling, again a reminder the lung disease is wreaking havoc during its unfailing and expected degenerative strange timing again.


Silently, as a couple, our eyes would meet often, signals passed between the two of us without words. I knew when he required sitting, sleeping, resting or solitude.

Both of us were occasionally plagued with thoughts on how emergent this may all become, but also how it might also soon pass.

The next few days were spent focusing on allowing him plenty of rest, taking it easy, until more controlled breathing abilities eventually began to offer him a reprieve from the nature of the lung disease beast.

A reprieve did come, though it only occurred three days later which was fairly good by past standards. Not all was fantastic, but my husband found himself able to cope and recover a little more each day. Remembering to sit and recover often was the key to keeping his energy levels functioning at optimal levels.

Trying to maintain something akin to "normal", no one knows
how difficult this position was for him, but he made it *appear* effortless.

Most of all, we know such is the way of this lung disease. No one knows what actually triggers emergent moments into action. There are never two incidences that seem to connect with similarities, all are unusual to say the least. He was walking very slowly when this one erupted, barely beginning to walk.

This was so NOT a good way to begin his time visiting out there...and he would venture to admit, he was not really offered a respite from living without one of his puffers or a combination of them all often over the course of the next few days.

Now that we're home, some of the remaining symptoms are still rearing their ugly heads, just something else for my hubby to learn to cope with as the degeneration continues to worsen.

Even in tough times though - blessings do continue to unfold...



One very special highlight of our trip was;


...having the opportunity to meet up just over the border in Bellingham, WA with a couple who traveled to the area from south of Seattle.

Two weeks prior to our travels, we were contacted by the wife after finding my blog (yay!) when she Googled "Mounier Kuhn Syndrome", the lung disease my husband is continuing to suffer from.

Rare as it is, we have yet to find anyone ALIVE with this same disease, save for her husband who was recently diagnosed at age 41 with the same. My husband was 42 when he was first diagnosed. (The disease is most often found predominantly in men during their third or fourth decade of life, so they were both right on target for timing.)

Mounier Kuhn Syndrome is indeed so rare, when my husband was listed as number 83 since 1946 around the world with this medical diagnosis, we knew there couldn't be many still alive. We do know there have been more since he was diagnosed, just how to find them has always been the problem!

When I first Googled the name back in 1999, only one single page appeared with a few links to check out. Now when Googled, there are hundreds of pages offering similar standard information from one to the other, almost carbon copies to exact specifics.

When this couple Googled the disease a few weeks back, my blog showed due to one of my tags used on this blog being the name of this exact disease. We are so thrilled they were brave enough to contact us, and after many emails flew back and forth, there we all were feeling very fortunate not only for them making contact with us, but also realizing very suddenly, perhaps there could be an attempt at meeting during one of our days out west. Awesome!

Our luncheon solidified a bond and connection, most inspiring to say the least. It was a pivotal moment for us, my husband and I, so very grateful all came together according to our plans even though my husband was still not feeling his best.

Many topics and specifics came to the forefront, (even for me this day) during our conversations. I found myself gulping down every word, every thought, every emotion displayed at the table.

When the men described not feeling well, they were able to discern symptomatic differences, bouncing ideas back and forth. We found ourselves immersed in medical jargon, medical plans, medical research, internet disappointment for researching or finding others, and many doctor specifics.

Please understand, for ten long years there has not been another we've met or become aligned with to offer specifics on this same disease, enduring all sorts of medical personnel not knowing what to do and finally just lumping my husband into other lung disease categories (COPD, Pulmonary Fibrosis, Cystic Fibrosis,etc) for possible treatment that are not the same, or even similar for that matter - at all.

With secure medical privacy issues in both countries, contact would never have been made possible, although, in the US the privacy guidelines vary from ours here in Canada.

True to our initial purpose with the goal of finding others by writing about this disease upon occasion (as per my husband's request) on this blog, this entire lunch was made possible by plugging along here using this MKS as subject topic over the years. Bingo!

Naturally resources were shared, and instant bonds were formed. We were told we were an encouragement for this couple, likewise for us, its obviously in the same capacity, all trying to assimilate what is happening in our lives. It is our fondest hope to keep in contact in the future as both mens' medical journeys unfold, offering support and continued dialogue over the years.



Rewind back a bit to weeks before contact by this couple....


Two months beforehand, I enjoyed a successful Google research moment when I first discovered the "Just Breathe Foundation" while in session, perusing once more through the hundreds of pages coming up for the disease. At that very moment of success, it was difficult to contain my enthusiasm. I could hardly believe my eyes! Initial contact was made and we awaited for something in return, anything actually.



Sadly the purpose of the foundation which began almost two years ago was in tribute to a young man living in Florida who was also diagnosed with the disease, dying unexpectedly after a lung infection became out of control. He was only 38 years old. His wife was expecting, seven months pregnant with their second child, the older child was merely 22 months. The Foundation and linking website is indeed a loving and beautiful tribute to him.

Since it took so long to hear back from the foundation, I thought maybe it was now inactive until several weeks later an email arrived. It was a personal note from the wife of the man whom this foundation has honored.

I felt an instant (and almost protective) connection to her, and emails were sent back and forth faster than express mail. And then all was suddenly quiet again...for a while until the night before we met the other couple in Bellingham, WA.

The night before, her email appeared seemingly out of the blue. She mentioned the reason for the longer gap than anticipated, also passing along that another had contacted the foundation and would we like her to match us up together if the other couple also agreed. Right away I knew who she was writing about, our very same couple from WA. How amazing is all of this I thought and what timing too!

So, after ten long years, there we were, face to face chatting nonstop through the entire lunch, and now we are *three* are all united on behalf of this disease, rallied together because the woman from the foundation is also on board with all of us, willing to share her husband's medical file with both of the mens' doctors in the hope of finding a common bond, a common link, if that is possible. What a huge bonus and fantastic blessing for both men!

As if finding others hasn't been enough, we've been asked to assist with the foundation's work, finding doctors who are willing and able to assist with "Mounier Kuhn Syndrome" research.

Having shared all of our medical particulars together, we are absolutely on board (in a heartbeat), and we happily await any future requests or directives. The goal is to continue finding others out there in the big wide world and assisting in any way we can. Amen!

My only regret was not pulling out my camera (oh, how I did think of it often though) to have a photo snapped of the four of us over our lunch, but then, as emotions were quite high, it didn't seem like the right time or visit to pull it off. Next time. Well we are all agreeing on a next time anyway. :)

Future possibilities await, rendering happy smiles for all involved.

How great is that anyway! An answer to prayer for sure! Yes, for sure - even in tough times, blessings do unfold...

(And for those we had to cancel on, and weren't able to spend time with, next time we can only try again. Hugs. )

Seasonal Changes From my Window

Looking out my window this week, I see signs of a new season which is about to explode with an upcoming plethora of multicolored scented blossoms plus at least a zillion new leaves on all those trees in the distance and on our own property.

A friend reassures me each year that when she lived in Ontario, she could SMELL spring coming.

Now that I've lived here for a few years, I have come to know what she meant by that. When the smelly pew odor from all the local farmers turning over their fields drifts away, the well desired scent of spring will definitely fill the air with its most splendid perfume smells.

Happy day everyone! What are the seasonal changes in view from your window today?

Here are the archives from the same window above if you'd like to view the seasonal changes represented there, here is the LINK to click onto them.

Ten Things I'm Thankful For

Time for another installment of my "Ten Things" to be thankful for, always varied, always random bits in positively NO particular order.

Ting, ting...

Today, may I present you with a few photos from a few week's worth of photo fun, (none from our recent trip in the ten posted here). It feels like some of them took place about a million years ago, how time does fly!

Pssst.... I found the perfect gift for my husband while visiting the Vancouver area recently, one that I could hardly wait to get home and surprise him with. I'll be taking a photo and posting it real soon. (grin, grin)

First though, in the spirit of continued (simple to complex) thoughts on thankfulness, here are today's "Ten Things I'm Thankful for". Ta da!

Please know for certain that my own personal thoughts on true thankfulness can obviously never be offered, nor delivered in true completeness within one simple post. And in case you just might find it interesting and want even more today, you can always skip along to view other "thankful" posts by clicking onto the archives located - right HERE.



Here we go......


1 - I'm thankful for another new crafty project on the horizon from magazine (dejunking) clipping I've been collecting over the past while. I can hardly wait to start this (secret) project and will load up more photos once the gifting has taken place. Stay tuned...


2 - I'm thankful for being able to homeschool all of our eight children for the bulk of their educational and youthful years. Oh, the sweetness these types of morning sessions provide for peaceful and tranquil starts to our days.

We've invested in new stainless steel water bottles to keep hydration levels optimal which can be found near whomever is working nearby, a remedy for dehydration at best for all of us who forget to drink enough water everyday.

(Thank you to Kimberley's daughter who provided the Lenten countdown page shown here. Can you believe how fast Lent flew by this year?)


3 - I'm thankful for our finer spring-like-weather where one can easily mosey on down and actually get close to the water's edge again without having to plow snow along the route any longer. It's one of my own very favorite places to go and sit a spell while pondering all things in my world.

Soon, very soon, these winter snow fences will be removed and the icy thaw just out yonder from the shore will be complete. As seasons change, I am thrilled to be able, very shortly, to begin again, getting spellbound that is, by the sound of the waves lapping up on the shores.

My note to self this week is to grab a few beach chairs and place them into the family vehicle for upcoming stolen moments to sit near this amazing location and just "be".


4 - I'm thankful for Barbara for the blessing of my handmade car rosary made by her loving hands, complete with a swell and clever magnetic closure. I can grab it in a jiffy when needed but most of all, it's not as distracting for me as a full rosary swinging about while I'm driving. With a gentle tick-tock of the crucifix, it does fast become a wonderful reminder to pray for those personal intentions so dear to my mother's heart, and for those promised prayers I can continue to be thoughtful of during my driving sessions while inside of my vehicle. You know (I know YOU know) - ALL THAT TIME a mother tends to spend driving children to and from THEN becomes a big blessing and thoughtful spiritual consideration rather than feeling like the ole - Mrs. Taxi Mama.


5 - I'm thankful for the wild and wonderful imagination of a child and how simple one's joy in life becomes during those delightful childhood play sessions we can only aspire as parents who hope to sneak a peak and be able to observe our younger children around the corner or in our midst, even if they might get a bit embarrassed about being noticed when they think they're too big for such fascinating imaginative play.

• They are show horses, thoroughbreds, furry wild beasts who require continued training, who have the desire and physical need to jump over things, race about, trot, canter and lap up their massage and shower moments during their rider's set grooming hours.

• THEY are in fact not just plastic you know either, for they are (momentarily) lovingly adopted and even individually named.

• They are well loved and treasured beauties added to other barnyard toys in our Imagination station. :)

6 - I'm thankful for my mommy crafting moments when I'm afforded time to run off and play for hours at a time. I've already mentioned previously about heading off to a conference in a past post, yet I haven't been able to post all my fun stuff still to this day (coming). However, it's still an ongoing and necessary (read - love it!) hobby of mine to keep my hands busy and my creative side amused.

In the busyness of life and raising a family, often mommy and her hobbies gets left in the dust. I don't take time on purpose often enough to run away and play, but truly, when I'm able, I just love the pursuit of time well spent with others in my midst who also share the passion of crafty times and womanly visits, usually and most often - filled with enormous amounts of laughter. Have you had your mommy time today?


7 - I'm thankful for our birding study, still in session because no one wants to stop.

I'm thankful for how-to-draw books and daddy art sketching sessions because they can only assist in making notebooks more intriguing to any child for keepsakes they're sure to enjoy later in life. The children have been having continued practice sketching leaves after this (um) first attempt, and collecting those real feathers from collections about our home, mostly to preserve them by including all onto the pages of their notebooks.

The birds continue to drop by for visits on our property. So many varieties are now residing here or nearby, building nesting and waking us before 6am with their songbird symphonies. Just waking and hearing them fills my heart with thoughts of spring and summer and what a better way to rise than to a whole chorus of birdie music anyway? We'll be out in force this week to explore and investigate all our new friends who dropped by while we were away to make our property their new home.

Oh, and I am thrilled (out of my mind - yes, my husband thinks my enthusiasm is kind of NUTS!) to find a local Naturalists hiking group who all specialize in trips to local nature habitats with a marvelous weekly or biweekly calendar agenda which includes many of the remaining topics of study we already have in our learning syllabus this year. Hooray! Children are very welcome to join in and what a superb opportunity to learn from others who know the geographical habitat more than we do. I can't wait to participate in some of the upcoming daytime events!


8 - I'm thankful for SUSHI!

Oh...oh...oh....when we find a new place to dine, I am thrilled to take a big (low sodium) soy-filled bite of another rendition of a sushi chef's spicy tuna roll.

Bliss! Delight! A palette pleaser to be sure! Wow!

So, I suppose you've figured out by now we did in fact find a new sushi house, huh? Oh yes, we sure did. And I'm going to indulge all I can for now because as my husband will one day soon be banned and halted from eating any of this fine dining food fare. Oh YUM!


9 - I'm thankful for stacks of books that keep me hopping, reading, absorbing and fascinated with new angles of assorted topics I have yet to fill my brain with. Or maybe I just need a refresher on them, like a boost for re-organizing my home.

When we returned from our trip with all our suitcases in tow, that is exactly what I was able to do in one large closet. To reorder our things upon occasion seems to create a whole new and fresh approach to what we desire to keep or get rid of. I have another bag from that same closet for the Goodwill from this small endeavor.

Closet revamp

Here's another book stack, ready for me to peruse with an warm cuppa something, that is when I have time now that I've returned from our recent trip.

The reading glasses are a dead giveaway on my multiple reading sessions where I just can't put my book down until it's done. Are you like that too? I could read all day long if time permits, so rather than get all blurry eyed, I am now trying to discipline myself to use my reading lenses, if only for a gentle reprieve on my eyeballs. Perhaps a round of bilberry is necessary for me to improve these eyes? And then, reading blitzes will continue in earnest.


10 - I'm thankful for after dinner warm cuppa moments when our children beg to return to a little bit of what they consider their adopted outing, like mine. Good thing for gift cards because the visits just seem to keep coming. :)

Rather than merely wanting to sit and drink and eat, they actually bring along books to work in. I on the other hand bring my computer along to upload all window updates, java updates, itunes updates and anything else our poky slow computer can't handle on our satellite internet system.

I wasn't ever able to do anything like this with our six older children (Imagine the chaos with babies and trying to school in some type of semblance within a public like this? Uh, no.) when they lived at home, so with only the younger two learning at home this year, once in a while this is a nice little outing for us to venture out together for a change of scenery.

Here concludes one more "Ten Things I'm Thankful For", always updating, always thankful for every itty-bitty thing in my life. Are you looking out for thankful things in your home like me?

Monday Musings

about living life in the country at this time of year...

After last Saturday's front yard roadway cleanup, with the big pickup of broken branch pieces and a bit of leaf raking, here are some thoughts this new season brings for us when living in the country.



Chipmunks with their black striped backs are bouncing about the property, sharing their food finds with several very large black squirrels. We hear them chit-chattering together, and can they ever be noisy, like bickering neighbors sharing in the land of plenty.

This might sound terrible but even when one loves observing rodent action on their property; we have been warned by the locals on the damage capability chipmunks can create when their tunnels follow against the concrete home foundations. They can actually chew through it weaken its structure rendering it unsafe.


As for squirrels, their counterparts, they tend to get into attics in these parts, living in attics year round, nesting included.

In order to be proactive for protection prevention to our home, and also due to the fact they are constantly eating all of my bird seed and taunting our dogs in ridiculous ways (urging them to run away in the hope of catching them, or worse yet, EAT them, I found this squirrel food and I bought it with one intention in mind.

Since we never had so many black critters hanging about last year about this time of year, I'm going to walk up to the top of the (country) block in the forest and hang it up in a tree to attract all the local squirrels, keeping them all away from the main residential homes in our acreage area, and yet keep them near enough so they can continue to dwell in the natural forest habitat they are accustomed to nearby, obviously keeping them well fed at the same time.




I was super excited to watch two very large deer sauntering across the road about 400 feet in front of our vehicle. What a good warning to slow down and become more vigilant after dawn for the deer venturing about for their nocturnal evening set before them.

Funniest thing last year was to find out our parish priest hit a deer on his way up to say mass when a nearby farmer rushed to the scene on the roadway. His biggest question of the day was to find out about what would happen to the deer, never mind the vehicle damage or the shaken driver before him. He asked; "Well sir, you have first dibs on the deer and if you don't want it, I will take it!". Imagine! His freezer was full all winter.


Last week we had rain and I swear we did NOT bring it home with us, but perhaps our jumbo jet carried those clouds here for all in our local area.

It rained hard and then after the neighbors had boasted about enjoying 80 degree temperatures in our absence, following the rain, we had icy white grounds and snow for 36 hours.

Crazy weather, this must be spring here in the east.


And then, just when we wondered what happened to this supposed spring season before us, the sun did begin to shine this weekend and all of our local farmers were busy on their tractors, out in force, turning over their fields.

A rather unpleasant odor continues to fill the air, a scent like rotting grounds or some such thing. Good thing we've already experienced this type of stench before in our former home while living in the country. I think we can handle it.

Ahhhh - the smell of country air!


Our girls are hanging out at the barn tonight. There are two more new horses to ride named; "Chippy and Chestnut", plus the owner wants to try out an Appaloosa named "Solomon".

I had to snicker as she usually changes all new horse names soon after purchasing them to something biblical, but this one is a first that came with a very biblical name and responds well when called. I think he's a keeper myself.

These young gals of ours are in their glory with improved weather and more opportunities to be near their beloved horse friends because the spring season of public horse trail riding has just begun again, and they are being hired once more as trail ride helpers. Even our young eleven year old has been offered a spring/summer job, (permission granted by mother here) for her to be hired as a barn/horse helper when able to work off all of her lesson fees and upcoming summer horse camp opportunities.

Life skills and learning the value of the dollar are intertwined in all of their actions up there. Love it!


Up ahead, ground clean up followed by carving and digging out new flower beds with my oldest son at the helm of that labor intensive project.

We also have three "shade master trees", one "blue spruce" and one "small pine tree" in the front flower beds against the house that must be moved this year, so this is another looming gardening project with a deadline to complete soon.

Oh, and this son is working a short evening shift tonight. Requests have been made to render him even more hours each week towards a fatter paycheck. He isn't into horses like the girls so no more local job opportunities are coming his way (smile) any time soon.

In just a few short weeks he will turn nineteen and the goal is for enough savings by summer to purchase his own car. Until then, we drive him to work, back and forth for for every shift. If this weather keeps up, perhaps he can pump up his bicycle tires and get some spring physical conditioning happening. (wink) Before that longer term goal is realized, he'll just continue to be content with accumulated deposit amounts into his savings account, with a bit of pocket money aside from it dedicated to his habit of hitting up the lunch truck with his pals and paying his monthly commitment for his cell phone bill. And so will I. :)


The lawn tractor and mower were serviced before winter kicked in, both ready for a lawn shaving cut this weekend.

Yes, only a run to the gas station is necessary for completing the start of this new season's task.

Imagine the thrill of a GREEN lawn after a WHITE winter! But, better yet, imagine a GREEN lawn compared to a BROWN icky apres snow winter. So nice.


Hello Spring! .....

I'm so looking forward to escaping our den to linger for longer hours outdoors.

Oh yes, I am so ready for spring. Aren't you?