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!

NATURE'S SOOTHING WAYS

We went to the coast this week and we were able to enjoy nature.  A beautiful dolphin flirted with us, as we crossed the bridge over to the bay.  (No, it wasn't this one, but it looked pretty much like this.)  Then we went to the beach and chilled in the shade, while three brave souls went into the water.  I couldn't believe they would, when Soul Surfer was still so fresh in their minds.  No drama though, just a nice time and we enjoyed entertaining our little Grandlove in the shade by the picnic table.  A fresh, constant breeze cooled us, the noisy sea gulls begged from us and laughter bubbled to the surface.  


Wonderful day, simple pleasures, which we all needed, since this week will be tiring and terrifying.  So, when we sit listening to the doctor discussing the necessary, scary operation, we can bring forth the soothing beach memories of this week.

QUESTIONS WITHOUT ANSWERS

I used to write blogs all the time, but that all stopped on March 10, 2011 when My Heart turned to me in the doctor's examination room and said, "Don't blog about this."  I assured her that I wouldn't, because everything was so fresh, painful and raw at that moment.  It's been almost five months and this will be the first blog I've written since that day.

As readers are aware, I absolutely adore my Grandlove and his mom, My Heart.  That has only increased since my last writing.  We received news from the doctor that day, which has strengthened our bond.  I always felt that My Heart was a good mom, but since that time I have witnessed a remarkable young woman who has shown courage, strength and tenderness in a truly heart-breaking situation.  When the doctor said, "Your son has Leukodystrophy," I knew what the prognosis was, but my daughter had the courage to ask, "What is the life expectancy for this?"  She was able to ask this most difficult question, without panic showing and tears spilling.  The young doctor (aren't they all young?), sighed and hesitated before she said, "I'm so sorry.  There are no treatments and he will not live long." 

My husband, My Heart and our Grandlove numbly left the office  and went down to the lab for the first of many blood draws.  Our Grandlove also had to produce a urine sample, so we had to wait awhile.  To pass some time we sought solace at the food court.  All around us were people talking, eating, laughing, caring for their little ones and yet our world consisted of our small table and the overwhelming barrage of feelings we were trying to handle. 

When my hubby mentioned that we were at a wonderful hospital, My Heart expressed her fear and frustration, "What good is a hospital, if there's no cure for what will kill my son?"  We had no answer to that question.  Five months down the road and we still have more questions than there are answers.

I can't tell you how much blood has been drawn for tests.  All the tests to determine the type of Leukodystrophy have come back negative (when the lab actually ran the correct test.)  We have met with specialists to address the difficulties that have impacted our sweet, little one's life.  Pain has been a huge issue and we are still working with the physical medicine doctor to find the proper dosage of oral meds to help with spasticity and pain. 

Feeding has dramatically changed from the normal abilities of a toddler.  He has no head control and swallowing is difficult.  One fear is that he will aspirate and fall victim to pneumonia.  He has always loved food, and so we make sure that the variety of textures and tastes keep him interested.  Pedisure has been a blessing, although insurance refuses to pay for that as well as Simply Thick for his water/juice.   Having this diagnosis has loosened up our priorities for feeding, though.  If he will eat a Pop-tart and drink his Pedisure, that's a great breakfast.  It takes about an hour for him to drink one sippy cup full of Pedisure and about thirty minutes to eat the Pop-tart by tiny "birdie" bites.  We were told by the nutrientist to mash his potatoes (he does love his 'tators) with real butter and whole milk.  Sweet potatoes with butter and brown sugar do go down real well, too.    Don't think all we feed is junk food.  It's just hard to find protein that doesn't choke him.  Smooth peanut butter in teeny-tiny portions is one source that we have used.  It is an "easy choke" food, so we make sure we have him position just right and his mouth is cleared before he gets another bite. 

He receives therapies in the home a few times a week, which helps with the spasticity and interaction with his surroundings.  He responds well when in the swimming pool and we exercise his legs for him.  We've even gotten him to kick in response to pleasure in the water.  "Water Therapy" soothes both him and us.

In a couple of weeks we go back to another specialist to discuss a feeding tube.  Our little guy has trouble getting enough down, that he doesn't have as much strength as he needs.  From what we have gathered from other families, the feeding tube will help him so much by both making sure he has enough fluids/food and he won't have to spend so much energy trying to eat.  He will still be able to "pleasure eat", which is great 'cause he is a social eater.

The list of the types of Leukodystrophy that he doesn't have has increased with each testing round, but we aren't any closer to finding out what type is affecting him.  In the long run, we realize that over 50% of the cases are never classified to what type. 

All the Leukodystrophies have this in common:  They are inherited; they take away "normal" childhood milestones; and they fracture the hearts of the people who love the child.  We love our little guy and any of us would trade places with him if we could, but since that is impossible we keep loving him, entertaining him, providing him with a stimulating environment and continue fighting to keep the PAIN away.

So, that is what has kept me away from this site.  I couldn't sit and write about this without sobbing.  I still weep and wail at the injustice of this all, but then I sniff, blow my nose and find something else that will make my sweet guy laugh.

PLATE SPINNER: NOT FOR THE FAINT OF HEART

This is a perfect illustration of my life, right now.  Each delicate plate represents an area of my life that is time consuming, energy sapping and anxiety producing. 

This week, we are going to meet with another set of doctors.  Hopefully, they will have answers to the questions we all don't even want to think of: What does our Grandlove have?  What is the treatment?  What is the impact on our Grandlove's future? 

My precious Grandlove's medical condition is the most important issue in my life.  The yet to be determined name of his condition and the frightening possibilities cause us to spend most of our attention in that direction.  While that is going on, however, we also have a few other issues that drain our resources.


Through no fault of his own, my spouse has lost his employment.  His kind heart and loyalty has been rewarded by the Board of Directors with a swift kick to the curb.  He was deeply hurt because he had brought the business from a rather insignificant non-profit to four times as many clients per week.  I honestly don't know how these supposedly "Christians" justify their actions.  There will be an answering time for them and I know that God is watching the classless, unappreciative people who used up my husband and then shoved him out the door.  They have all benefited from my husband's kindness and yet they don't care that our family now is scrambling to keep the roof over our heads.

Using the Internet has made the job search a bit easier, but one thing remains the same.  Unemployed people have a much shorter "wait time" than the possible employer.  Employers don't hurry and yet each day that goes by is another day that drains our meager bank account.  Our moods have stayed hopeful and we encourage each other in the quest for patience.  Sometimes, I keep the plate spinning and sometimes Hubby does.  When we both become a bit tired, our Heart has an encouraging word and the plate becomes steadily spinning, once again.

When a job is acquired, we are moving to be closer to our Heart and her precious son.  She needs us closer and we need to be closer to help as much as possible.  Whenever we talk of moving, I think of all the junk that has to be done.  Another plate on a wobbly pole.

My dear friends have been very supportive throughout this and I do appreciate them more than my meager words could ever convey.

BLACK FLASH: COLD NOSE, WARM HEART

After my Heart and Grandlove leave, this little, sweet guy gets up in my lap for some one-on-one cuddling.  He faces me and I can read that expression, so well, "Hey, you guys, I love you!" 

We've left his winter coat grow out and once Spring is here, he'll get his fancy grooming and this rag-mop look will be gone.  I trim around his black-button eyes and a few other "personal" places, but daily brushing keeps the tangles at bay.

WHAT COULD BE SWEETER THAN CUPCAKES? MY GRANDLOVE!

Our little guy had polished off a great dinner of homemade, whole grain pasta and so a little dessert was in order.  He had never had a cupcake, so his mom introduced him to the delight of French Vanilla cupcakes created by Nana.  A little bite was all it took to motivate him to continue exploring one of life's delicious delights.

You can tell by the look on his face that he now understood his Nana's love of cupcakes.  He was given the whole cupcake, because a bite just wasn't enough.  Notice that we didn't even waste time washing off the pasta sauce before he got dessert.  Who can be bothered with clean faces when eating dessert is involved?

This is the face of one happy, well-fed little guy.  His sparkling eyes tell the whole story, don't they?  A house of love, whole grain pasta with tomato sauce and dessert of cupcakes are the simple gifts that we give our Grandlove.  He gives us so much more.



YOU CAN RUN, BUT YOU CAN'T HIDE FROM THE TRUTH

Last year around this time, Mz. Understood (pictured here) was banned from posting on the local newspaper's website.  I had forgotten about the demise of this stylish, intelligent poster, until Chris Cobler reminded me of this today. 

He must have had a slow day in the newsroom, because he stumbled upon this blog and it made him uncomfortable.  Nothing in this blog was untrue, sources were quoted, and nothing was taken out of context. 

Chris Cobler
February 5, 2011 at 1:14pm



Subject: request

Hello,
I would like to request that you remove your blog post attacking me in relation to Aprill Brandon's column. Perhaps I'm too sensitive to such attacks, but I'm trying to focus on what's happening here in my new home rather than in the past. I appreciate your consideration and hope you're having a good weekend.

Chris

This is the same Chris that wields a mean zapper when comments are not to his liking and posters are banned so quickly that it could make one dizzy.  So, let me be clear, I have corrected mistakes when I have written blogs and I have found I was reporting rumors and not facts, but when I have researched and written the facts, such as the February blog about Mz. Understood, then my words stay. 

Blogspot has been my writing home for over a year and this is the first request that I remove any blogs.  Interesting?!


I have a dear friend who is fond of an expression concerning kicking a dog on a porch and being bitten. Be careful, this ole dog has been kicked one too many times by the people who work at the local newspaper and yes, my words do bite.

GRANDLOVE: LOVE BEYOND MEASURE

We took this Sweetness to meet the doctor who has begun our journey in earnest.  All of us were impressed with the honesty of the doctor when he said that what is affecting our little guy is a mystery.  A huge battery of tests began Friday afternoon and more are already scheduled. 

Bright eyes followed all the doctor's movements and quick, little, chubby hands grabbed the shiny instrument used to test reflexes.  When asked if our little guy was always so happy, we could answer truthfully that his mood has been the one thing not affected by whatever he's battling.

We have no answers, but at least we have a doctor who listened, examined, and took our concerns as his own.  I feel hopeful, because once we receive a diagnosis, then we will know the monster that is attempting to steal our precious little boy.

NO ANSWERS: JUST MORE ANGER AND FRUSTRATION

This week my Heart took her son to his pediatrician and that "doctor" should be horse-whipped.  She made the little guy scream in pain and still didn't take his condition seriously.  No blood work, no x-rays, no Cat Scan, no MRI; nothing. 

Everything on our little Grandlove is physically regressing, except for his magical smile, his sharp little brain and his ability to make our hearts sing.

This coming week we go to a pediatric neurologist in a nearby large city, so maybe that will be the beginning of answers.  Can't get a direction for our journey until there's a diagnosis.  Nerves, sleep and emotions are all frayed. 

I keep praying for God's Will to be done and acceptance on our part. 

TOO MUCH KNOWLEDGE: TOO MUCH SCARY STUFF

As we wait for further tests/evaluations on the Grandlove, I find myself researching the possibilities.  Let me just tell you that sometimes "ignorance is bliss."  My Heart and I know of someone who doesn't have a clue about the many serious causes that might be impacting our little guy and this person isn't nearly as worried/concerned as we are.  Not knowing an answer leaves a huge vacuum in my world and we all know that nature will not tolerate a void.  So, as I research the possibilities I am faced with very devastating possibilities.  Faith, friends and family keep us hopeful.

1/11/11: TODAY WE START OUR JOURNEY

Today is the day of our new journey. Our sweet Grandlove will be visited by some people who will ask questions; answer questions; provide information and help us to begin the next phase of our journey.  I am a bit overwhelmed by the endless possibilities as the clock slows down.  Too many Internet searches have left me breathless in my anxiety.  Too many scary possible answers to all the questions we don't even know how to phrase.  All we know is that our precious baby is a wonder to us; his mere presence makes our hearts sing; his laughter stops our fears and his soft, tender touch reminds us of how fragile life truly is.  We are a team who is ready to be the loving support for this little guy.  His world will be challenging, but our team effort will be up for the task.  Keep us in your prayers as we go forward.

ONE DAY AT A TIME: MAKE IT A MASTERPIECE

A very dear lady told me the other day the way she gets through the uncertainities of life is by this simple motto:
"One day at a time and make it a masterpiece". 

So, I try to remember these words as life keeps challenging me.  I don't know what tomorrow will bring, but with the reassurance that I am not in this alone, helps to fortify me.

DNA CAN EXPLAIN A LOT ABOUT ME, I GUESS

I am related to some famous people, or I guess I should state "infamous" since their reputations are a bit shady.  My great-great-grandma Bonney had firey-red hair, a temper to match, an aversion to bright lights and a relative with the same last name Bonney.  Well, I guess Billy the Kid was the usual moniker for him, but we all grew up with stories of our famous outlaw relative.  Now, even after all the years, he still hasn't been pardoned. 

Well, if being related to an outlaw wasn't strange enough, then we have another notable relative, Edgar Allan Poe.  So, I have outlaw and creative blood coursing through my veins.  Okay, so Mr. Poe also had a bit of mental disabilities, along with a tendency to self-medicate.  Well, who said being a genius didn't come at a high price?

So, for those who know me, here's the dirty truth:  My DNA requires me to be creative, a bit crazy at times and ready to accept any challenge, with guns blazing.

BE PATIENT: DAILY MOTTO

MY GRANDLOVE

This is the face of love.
This is the face of innocence. 
This is the face of all things possible.
This is the face of more questions than answers.
This is the face of acceptance.
This is the face of hope.

THE REAL EL CAMINO: FUELED BY FRIENDSHIPS

A short while ago, I traveled with some funny, bright friends in this snazzy vehicle.  We entertained ourselves by sharing memories of life in The Crossroads.  One story dovetailed into another.  Laughter was brought on by the realization that we hadn't realized how innocent of a time in which we lived.  Keys to houses were rare, drive-in movies were entertainment, newspapers were created by intelligent people, cars were made out of metal and people played as hard as they worked in those days. 

Spicing up the journey was great food and a few drawings for door prizes.  No one was lucky enough to win the El Camino Real; we will leave that to the local historian to "own."  However, there were other prizes that tied into the hot topics of The Crossroads. 

No one could think of Victoria without thinking of BOOTS, so naturally, a lucky winner walked away with a pair of Victoria themed boots.  It was noted that the official seal on the boots has the incorrect French flag, but what can you do?  That would mean that someone who designs seals for the city would actually know their history of the different flags of the countries. 

Another "hot topic" for The Crossroads is the future of a very large industry moving here to help boost our economy.  Well, let's just hope that the Cat factory does get built; tax money is put into the local pot; and jobs are plentiful.  In the meantime, some lucky guy was able to win a representation of the promise to our community.

We all had a great time and I would like to take this time to thank our generous host and hostesses for our journey.  Couldn't have asked for anything more.  Good conversations with intelligent people; yummy refreshments; beautifully decorated home; and enough humor sprinkled in to make the hours fly by all made this the highlight of the Holidays.  Thank you all for such a great time.