ESPERANZA: HOPE

The other day, hubby and I were on a search for plumbing parts and as we circled the crowded parking lot, I spied this beautiful plant on display.  Recognizing it as the same type as one I had admired earlier at the Grandlove's therapy location, I grew excited.  I didn't know the name of the type of plant, just that I loved the delicate, little trumpet-like flowers.  When I spotted the name tag, I almost wept with joy, for the name is the Spanish word for "HOPE."  Now in my front yard, I have a remarkable reminder to never give up, because hope is always nearby. 

Last week was a really difficult week for me.  I felt as if a tidal wave of depression had overtaken me and I was drowning in doubt, hopeless and depression.  It took a couple of days and I brushed myself off and put another foot in front of another to continue on my journey with the Grandlove.  By the time Saturday got here, I had shook off the negative feelings and replaced my tears with smiles.  So, I wanted to share my newest gift for myself, Esperanza, my plant of HOPE.

Two Brave Souls Joined Forever

This picture of my friend as she makes sure that her sweet boy captures every last bit of love he can before he receives his Angel wings. 

No mother has more love for her child than one who will comfort her child as he slips away from constant, excruciating pain caused by the monster known as Leukodystrophy.  Leukodystrophy crushed his milestones and replaced them with pain.  Throughout his short life, he didn't question why he could no longer run and play like other boys; he only brought thousands of people together to fight this insidious monster.  There is no cure and because this is considered a rare disorder, the research goes on better known diseases. 

His mom is my hero, because in spite of her pain of watching her sweet boy die, she has reached back to help my family on our journey.  You see, this will be our fate in a short time.  The Grandlove will be the little boy in the bed receiving the last bit of love we can give him before his time on Earth is gone. 

Thank you, Tadan and Carisa for seeing beyond your pain and helping so many others.

WHAT A SPRING BREAK!

OLD SOUL: YOUNG HEART

This picture is from the beginning of our journey.  Our little guy was still walking, babbling and meeting all his milestones.  We thought that having tubes put in his ears would correct his falling down when he walked.  We didn't have any idea that we would be facing such challenges from then on. 

As I look at this picture, I think back to a conference I had with my Heart's elementary teacher.  I told this teacher, " I don't know what is in the future for my daughter, but I know that she has an old soul and she will do greatness."  At the time, I didn't know that the greatness would be the journey we are on now.  I only knew that she was destined for a remarkable life.  Thank goodness she is a strong, tenacious person.  No weak person would be able to smile, while putting one foot in front of another during the daily challenges brought on by Leukodystrophy .  I applaud all that My Heart is, for she has taken all the loving lessons taught her and fortified herself for the obstacles in her path. 

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.