WEARY TRAVELER: PASSPORT TO UNKNOWN

When I acquired my passport, I looked forward the exotic places and extraordinary experiences it would grant me.  I have cruised to faraway ports and flown to remote lands, where my experiences were exciting, refreshing and scrapbook worthy.  New experiences were so fun.  Not knowing what I would find around the next, added to the enjoyment.  My passport served me well, as I enjoyed new people, places and challenges.    This last year, my official passport has been gathering dust and basically been replaced with the demands of my journey trying to find answers for The Grandlove.  Instead of souvenirs from exotic places, I have gathered receipts from hospital parking garages.  Instead of tour maps of tropical islands, I have learned the quickest way from lab to the doctor's office.  Instead of deciding on which seating would be best for on a cruise, I have learned that the adjoining hospital has a much better selection in their food court. 

 Learning to create creative towel animals on the bed, has been replaced by learning to help the little one overcome his fear of laying on his back during diaper change.  Figuring out the current exchange rate, has been replaced by figuring out the correct dosage of "Barbie Plastic" (Miralax) to compensate for muscles that no longer work correctly.  Trying to stay awake late enough for the Midnight Chocolate Buffet, has been replaced by appreciating any amount of sleep that the little one can get, on the bed and not in some one's arms.  Attending art auctions, has been changed to participating in the therapies scheduled to help with the body that is failing. 

My new passport has granted me access to places, people and situations that I didn't even know existed.  Our journey hasn't been all horrible, I must say, though.  My friends and family members have really stepped in to help anyway that they can.  Listening, encouraging and caring are priceless treasures we are granted on a daily basis by those who love us.  We have also been fortunate to be given the gift of new people in our lives.  Higgins Photography has taken our family into their heart and given us so much love that we are blown away.  Other people have shown us that they know they can't take away the pain, but if they can lessen the intensity they will.  We are strengthened by our blessings of people who prop us up on a daily basis. 

There will be no stamps in my passport for this journey that I am on, no postcards from faraway places and no souvenirs for my curio cabinet.  Each day, each smile, each laugh from the Grandlove is priceless and never to be forgotten.

The Best Present

Here's a photo from Higgins Photography (thank you, Belinda Higgins).  She captured our little guy as he was getting all of Santa's secrets.  My Grandlove is our present.  He reminds us that there are no tomorrows and yesterdays are gone, so we only have this moment to treasure.

If I keep busy enough, reality can't be so real.

With all the "stuff" we have to do for the Grandlove-doctors appointment; lab work; equipment ordering; therapists who come to the house for him and everything else, it's not until I finally put my light out and try to sleep that the overwhelming sadness of the reality washes over me.  I am a well-educated, caring woman and yet this reality is one thing that I cannot change.  Our little guy is so tiny, that he's now back in size three diapers.  The only thing that is large about him is the love that he radiates with his smile and giggles when we play games or he listens to his musical toys. 

When he used to love riding in the car, he now screams in terror.  Changing his diaper, brings the same results.  Fortunately, we have a physical medicine doctor who listens and started a new medicine that should help his brain quit sending signals that he will fall into the universe when he's on his back.  Keeping our fingers crossed that his world will not be so terrifying. 

At Christmas it's the season of miracles, and boy would we love to have a really big one about now.  Our little precious boy, who is a blessing to all, needs to be blessed with good health.  In the meantime, we do anything  that we can to make his world a happy place.

SMALL JOYS: HELP SMOOTH OUT LIFE'S BUMPS

For some unexplained reason, one of the Grandlove's favorite toys is this silly Hippo.  We have researched and found the Hippo for Christmas song and we now sing it to get that smile that melts our hearts.  Who would have thunk that a dollar store toy would become so special to our little guy?  I take pictures of the Hippo, since he is quite sneaky.  Sometimes the Hippo takes a bite out of the little ear and sometimes the Hippo finds himself sacrificing a foot to a young, exploring mouth.  Such is life in HippoLand.

CARBOARD PEOPLE: ALSO KNOWN AS LIARS

I am actually quite tolerant of different people, but there is one type of person who really makes my jaw clench, my stomach ache and my blood pressure spike.  If a person lies, then I have no use for them, since I don't have the time or energy to try to figure out what part of their words are covered in lies.  When their mouths open, I automatically know that there will be a lie in there, so with a disgusted click of tongue and eye roll, I dismiss them from my universe.  Essentially, liars are no more important to me than the cardboard that is found inside the roll of toilet paper near my commode.  Insignificant and a bother to contend with at the end of the roll of paper. 

There still is a cardboard person who I have to deal with quite frequently because of circumstances.  I find that just the anticipation of having him around is enough to make my teeth hurt.  If his lies didn't affect people who are kind and loved by me, then maybe I wouldn't be so bothered with this shallow, ignorant, liar.  Unfortunately, the blow back from his lies has impacted my loved ones and when that happens, I find it very difficult to hold my temper.  Since I can't take care of family members if I am locked away,  my hands stay at my side, my tongue is kept civil and my temper is dampened. 

There better be a place where this person's lies, evil intentions and anger is put squarely in front of him and he is held accountable for his actions.  Let's just hope that the day of accountability happens before he injures any more innocent loved ones.

ALWAYS ON THE CLOCK: DEFINITION OF NANA

Spent the last couple of days with my Heart and Grandlove running errands, having lunch, keeping appointments and just hanging out.  Since our little guy is totally "hands on" now, one of us is always carrying his hot, little body.  He can't help with the task, so our shoulders become tired, arms go numb and the combined body heat threatens to bring on "the vapors."  As we were doing the little guy "switch-a-roo" I turned to my Heart and asked, "So, am I on the clock for this or off the clock?"  (I am his full-time care taker when she's at work, thus 'On the clock'.) 

My Heart tenderly smiled as she repositioned his stiff, little body and said, "Nanas are never 'off the clock'.  Didn't you know that?" 

Truer words were never spoken and I wouldn't have it any other way. 

With great pain, comes wonderful Blessings

Last week we received a wonderful blessing, indeed.  A beautiful photographer opened up her marvelous studio, immense heart and tender arms to us.  She invited us to bring the Grandlove for a photo shoot, knowing he had many physical limitations.   She treated us as if we were long-waited for loved ones, returning from a tiring journey.  Between the pillows for propping, the outfits for effects and the silly behavior for sweet smiles,  Belinda made sure that she got the best shots possible.

Her studio was remarkable in its elegance, technical advancements, while at the same time maintaining its welcoming atmosphere.  There were more backgrounds, props and costumes than we could imagine.  She had everything so organized that even the enormous amount of material was quickly retrieved and used for the perfect set-up.  Part of the way her studio runs so efficiently is that she has the best front office person possible.  Tender-hearted and yet professional, Tracy made sure that we were treated as if we were the most important customers around.

All the preparations, the photo shoot, the costumes were provided at no charge to us, because Higgins Photography wanted to contribute happy memories to our lives.  In this fast-paced world, how refreshing that people still have hearts and try to ease the pain of childhood "Monsters" like Leukodystrophy.  Belinda and Tracy are truly Earth-bound Angels.  They held our hands and hugged us to take some pain away and replace it with beautiful memories. 

Thank you for our day in the spotlight, you've warmed our hearts!