Tuesday, April 29, 2008

A time to trust...

A Time To Trust...

It appears so far this New Year for all intensive purposes; life has been passing by at record speeds. Seemingly we are an extremely busy family to some; though most people could never relate to why that is – part of our ongoing family lifestyle, and simply the way it must to be in our home due mainly to health issues.

I’ve shared before about the rare and debilitating lung disease my husband is battling called; “Mounier-Kuhns Syndrome”. Because it can be quite restricting we try to keep normalcy levels on an even keel at all times whether within our everyday living or during an emergent requirement. Unexpected glitches often visit our home, as in yours no doubt, often presenting situations requiring quick thinking, or emotional repair after the fact. As in many other years, this has been our new 2008 year thus far...

Daddy with one of his girls

When I pulled out my brand new calendar for this year, it offered much for a visual reminder of how life occasionally requires a clean slate, new beginnings ahead by officially sending out the old and bringing in the new. It was a brand new year after all, filled with promise. And it will continue to be that way, though not exactly as we originally had planned. For instance, we never expected a debilitating round of bronchial pneumonia to keep my husband bedridden and fighting for a gasping breath of air, especially when I was on the opposite coast at the time meeting my new grandbaby and unable to be there with him initially.

We never expected five weeks of chicken pox in the house (here and here), nor other assorted illnesses to afflict family members and with a suppressed immune system, we were aghast and worried it too would afflict my husband, and it did, though he only had a handful of chicken pox (instead of dreaded shingles) on his head.

We never expected intense issues in the west and other things requiring my presence twice, nor did we expect to be having thoughts at all of possibly changing our present residential location in the near future. For the latter, we aren’t yet but perhaps in the near future we may have to consider such a possibility when it’s time for my husband’s looming transplant operation to become front and center in our lives. The two hospitals of choice studying my husband’s rare lung disease have informed us that depending on the complicated nature of his future operation, it may end up being a requirement for us to live within the vicinity for a minimum of three months and up to one year afterwards, depending on many factors during the recovery stages as well of course. This would be after spending time beforehand in the local area as well.

These hospitals are hardly nearby, rather quite a distance from us so additional looming factors on whether or not to relocate to another area may result in intentional actions very suddenly. The problem is we have no idea which city we’ll end up in for certain so it’s hard to be proactive beforehand without wondering if we made a mistake by reacting too soon.

Everyot who’s comparing here anyway. eryone here,were thinking disaster just visited us againay living or an emergent requirement. ne at some point in their lives may experience a moment or a long while when a red light causes them to swerve or literally stops them in their tracks, rebooting them mentally to get back in to fine order, taking them to their knees while accessing the fork in the road stumbled upon before them. This has been our year so far, a lot of curves, and a lot of forks falling in front of us on our roads. As the future is unpredictable, how can we freeze when life seems to be upon occasion, running amuck?

We may always rejoice,
if we will only keep our
head a little raised above
the flood of human things.

~ St. John Chrysostom

Like a small child who falls in the sand, we pick ourselves up and swipe our hands over the dust on our clothes, while lifting up our chin and wiping the tears falling down our cheeks, while continuing to press on. We can press on by offering a slight smile for our wounded owies because we really are okay, even though we were thinking disaster just visited us the moment before when we fell. We distract ourselves from where we just came from. We continue to live our lives vicariously through our dreams and continue to tweak our goals for the future.

In essence, we try and try again if it’s something we gave a poor delivery on or possibly failed at. Life is like that isn’t it? How short life is to be spastic and ridiculously dramatic, offering such ridiculous flair for the traumatic nuances life’s curves offer us. Don’t get me wrong, some require the traumatic drama they offer (believe me!), and others on the grand scale of life simply - do not. When we step back, we may be able to discern how minor some issues really are, so silly and trivial when compared to greater concerns in our family’s lives.

Chest rehabilitation program work
looks easy enough, but for him,
it's incredibly tough to do these days.

Character cannot be developed in ease and quiet.
Only through experience of trial and suffering
can the soul be strengthened, vision cleared,
ambition inspired, and success achieved.

~Helen Keller

Why then do we protest so much when “smooth sailing” is altered by a sudden unexpected change knocking at our doors, attempting instead to pray and hope for a better tomorrow once the gale storm disappears. Perhaps it’s all part of the grander picture, one already ordained for us by God. Let’s reassess by thinking instead, ” One day at a time”, a popular and very wise thought for many organizations; so why not adopt it as a family motto?

With the winter’s ice hockey season over now for all of the children involved in their beloved sport, and other activities ending soon such as my husband’s chest rehabilitation program, he made a decision to meet with his superiors and HR department, consequently formulating a plan for a portfolio revision and a trial back to work attempt to ease his boredom and mental agony. It’s my humble opinion that men wrap their whole beings around what they do in life and what they are good at. My husband was always very good at his job, a senior management position with much responsibility, and his superiors know what he is capable of, willing to bend to accommodate whatever physical limitations would be involved for my husband to return to some sort of regularity during this trial period. They have been extremely supportive, and we appreciate them all so much over this past 16 months with my husband homebound and unable to be present in his office at work, remaining in the loop with work at home when he was able.

Company cell phone presence back again

At first my husband requested a three month trial; however with deep and sincere compassion towards him, his superiors instead offered one day at a time (our motto!), in case his recurrent issues with fatigue or breathing difficulties take over and he requires recovery at home again. With an oxygen therapy program in the near future, they offered to bring in whatever he requires to assist him during his return. They gave him an office away from the hubbub of possible germ pools, provided a case of surgical masks to keep him protected, and gave him a key to the private elevator straight up to the boss’ office so he never has to dread using a staircase. Knowing too about his looming transplant operation, they assured him they will always have a portfolio awaiting him should he feel well enough to resume his work career in the future.

Together, my husband and I have attempted to absorb everything; recovering from being so severely astounded by the sincere offering of support. It’s been a very emotional week; big wet tears keep visiting the edges of my eyelids, threatening to spill and send me into a spin for rest of the day. I must remain strong for the children and keep our home free from worry and anxiety. I find it hard to concentrate, my mind wondering in a hundred different directions all at once. Attempting to remain on task has been almost a surreal endeavor and daily occurrence. It all feels like a dream....

Am I happy about this decision? Yes & No, not especially but then I can’t allow fear to grip my throat and shut out positive ideas to enter into my heart. I am willing to think only good thoughts during this trial back to work period; however I can’t help but worry when recalling he’s already beat the odds of his double lung transplant by four years. We both feel the clock ticking. One lung infection and it becomes something critical. One lung infection and he could become too weak to handle such an operation.

Am I supportive of this decision? A mixed bag of emotions is working their way round my head. I have to offer a good outlook and I’ve been one of those wives who has stood by her man and supported him throughout a career often requiring out of town work, hundred hour weeks, round the clock on duty monitoring, and supervising many others in a large geographical territory, so yes, I think I can handle a lighter duty, a new change of portfolio and a drastic change of a work lifestyle. For his sake, I welcome it, and I’m a resilient person.

Is my husband juggling both excitement and fear? Of course! Wouldn’t you?

Are our children and both sets of our parents battling huge concerns? Yes, very much so. Fear is gripping everyone’s heartstrings, utter involuntary fear keeps everyone reaching out to one another, supportive and yet so frightened.

Are the doctors supportive of such a decision? For the trial period only for now, and then a revisit to further possibilities depending on how it affects my husband’s health, if at all. This is also how the physiotherapist, family doctor, and others in the loop feel. One baby step at a time...

Pulmonary function tests are regular occurrences

It’s complicated of course, with many various doctor appointments still on the calendar; respiralogists, nepherology, chest rehabilitation, physiotherapy, massage percussion therapy. There are also monthly blood tests, blood pressure monitoring from the lungs affecting the way the heart works, breathing exercises, other exercises, medications and continuous multiple refills, double die ct scans, chest x-rays, pulmonary function tests, and so much more. The calendar remains busy, which in turn makes our family one busy bunch keeping up with everything. Yes, compared to many, we are a busy family.

Stairs are dreaded by lung patients,
so here he has to learn to climb
them in a whole new way.

We understand there are many folks who want to just hold him tight, protect him by giving the illusion of becoming a human bandaid, never letting him go again, rebuking that no more suffering is welcomed here! Every day suffering is a commonplace for my husband, offering the sudden inability to take a simple breath at times, feeling the suffocating tendencies that can and do set off sheer panic in a split second, restricting his breathing abilities even more until he calms down again. Unless you have a lung disease, live or know someone who does, you could never know the struggles of such a dreaded thing my husband and our family endure from day to day.

They are hanging near the door now,
don't come over if you're unwell

In all honesty, I would trade places with him in a heartbeat if only I could, for as long as I could, if only to offer him a reprieve for even a day, an hour or even a few seconds, that is, if I could, if I knew I could just offer him a reprieve from the hardships of having a lung disease eating away inside of him, and taking away his lung capacity abilities. But I can’t, so I must offer him all I can in other helpful ways.

As my husband says; “I’m as good as I’m going to get, and because I know I’m going to get a lot worse yet, and have a double lung transplant to survive in the near future, I want to do something to assist me in retaining something of normalcy along the way, just like the rest of the family.”

Go ahead!


In the spiritual life he who does not
go forward goes backward. It is the
same with a boat which must always
go forward. If it stands still,
the wind will blow it back.

~ Servant of God, Padre Pio

We know there is much at stake. But, we have a choice to either live in limbo land and dread each new day, hardly able to get our feet on the floor each morning, hearts heavy and keeping us from enjoying anything pleasurable in life, or offer thanksgiving for the gift of a new day, remain normal as best we can and trust God for his bigger plan in the future for our family. We choose the latter. And here today, I am ecstatic to report that it’s now officially been one week since his return to work, and so far, so good. After sixteen months of recovering medically at home, he’s a happy man returning to work for his second week.

We humbly ask you to keep him/us in your prayers.