Saturday, August 27, 2011


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.

Friday, August 26, 2011


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. 

Saturday, August 20, 2011

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!

Saturday, August 13, 2011


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.

Saturday, August 6, 2011


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.