Leukodystrophy: Humble Enough to Ask for Help

Well, things have been going along pretty well.  Botox shots have helped my Grandlove with his spasticity in his legs.  His physical therapists have seen improvements and we are so glad that he didn't have major pain after the injections.  The injections should last at least three to four months and since he did so well, we probably will go that route again.  His body weight was enough that the doctor was able to use two full cylinders of botox (one in each leg) and we think that between the botox and his oral meds, that is why we have seen good results.  We were just so thankful that he didn't have any negative reactions to the meds or procedure, that we felt encouraged.

Since my daughter is taking care of my Grandlove full-time, the household income has really taken a huge hit.  If she would get a job, respite care wouldn't be available during her working hours and who would take care of such an involved little guy?  Not only that, but each day, each hour is so valued because of his condition.  When she was working, her heart was torn each time she went to work in the morning and after her lunch-time spent with him at home.  It's not that she doesn't want to work, it's just that she is limited in her options.  His therapies take up three mornings a week and once school starts (he'll be going for three hours in the morning), his therapies will be spread out throughout the afternoons.  We understand that he will never regain his mobility, but the therapies are to help him maintain the limited amount of function that he is clinging to, now.  Speech therapy is teaching him to use buttons to make choices, so that his expressive language can be unlocked.  How frustrated he gets when we don't understand what he wants/needs! 

When we travel with him, my daughter's little car cannot hold his wheelchair, suction machine, nebulizer, feeding supplies and other ordinary toddler needs.  I realize that the economy is not good right now, but right now is when we need a little help.  There is a fundraiser going on for my Grandlove, so that his mom can get a larger, affordable vehicle.  We have been fortunate enough to be chosen by Wooly Babes for an auction in September, but the site for the fundraiser has already been set up and any publications/donations/support would be so appreciated by us all.  My readers already realize how much my Grandlove means to me.  My readers have traveled on this journey from before the diagnosis, until now and so they understand what stress Leukodystrophy brings to a family.  There is no cure for what is stealing away my sweet, little boy, but there is hope of painless days and restful nights.  We do all we can to make sure that he receives what he needs to enhance his life.  Thank you in advance for considering:  "LOTSA OF LOVE FOR STEPHEN".  (There is a page on facebook with more information about my little Grandlove and how you can help/donate.) 

Wooly Babes - Waldorf Dolls for a Cause posted in September's Auction Doll: Stephen ~ September 14-17, 2012

Wooly Babes - Waldorf Dolls for a Cause 2:45pm Jul 4 Invite EVERYONE! Ask people to share, and spread the word on support groups, Craig's list etc. :) Let's get the BEST turnout possible! - Alana-Hermsen Wooly-Babes Please carry this message to your blog/facebook/address book of wherever you can.  I thank you for your help, because many of you have said whatever you can do to help, just let you know and I am asking for this help.  Sincerely, B. (TruthFerret on here and Soupsandwich Messedup on Facebook.)

SWEET GIRL'S CONFUSING REQUEST: "Sing the bee song, Momma."

Growing up in a home where singing was a everyday occurrence, it followed that I would sing to my sweet little girl.  I learned the usual kiddie nursery rhymes, but some of the old classics that I enjoyed found their way into my repertoire.  When my sweet girl would stretch out her arms for me, she was met with a smile and my version of, "Hold me, hold me, never let me go..."  My mom would sing songs as she pushed our little curly-top on her tire swing, "He flies through the air with the greatest of ease..."  Snippets of songs filled the days and delighted our little one.  We all were happy with the arrangement, until one day when I was stumped by my little girl.  "Sing 'The Bee song', Momma." 

Thinking my mother had an extra song in her bag of tricks that I didn't know, I called her for the answer.  She was puzzled by the request, also, which only added to the frustration of the eager child.  I asked her to hum a bit, tell me more, or any hint that she could give me to find the right tune and she kept reassuring me that I knew it, it was "The Bee Song".  I finally promised that as soon as I remembered the elusive song, I would indeed start the serenade.  Watching my disappointed daughter leave the room, I racked my brain for any song with bees in it.  No "Sesame Street" songs that I could think of focused on the bees, she was way to young to want a song about" the birds and the bees", and so I finally concluded that it must have been one of my original songs that I threw together in a moment of fleeting creativity.

A few more days passed and we went to the mall, where there was a man who loved to demonstrate the musical instruments he sold.  Our little girl would dance to his music, which caused smiles all around.  She ran up to where he sat at the organ and requested "The Bee Song."  Imagine my extreme surprise when he smiled and began playing.  Who knew that there was such a song?!  Well, it wasn't exactly known nationally as "The Bee Song", but thankfully, the kind man started playing "Que Serra Serra".  That was the elusive song.  You know the line, "What will be, will be"?  That's the bee song and has remained "The Bee Song" in our family every since that curly-headed sweetheart twirled around with her dancing eyes and dazzling smile.

During the whirlwind of life, this jewel of a memory is what I treasure the most.  Sweetness, innocence and love.  I miss those easier days.  I miss my daughter's Nana and Papa.  I am blessed that with my Grandlove the innocence is once again embodied in a curly-headed child who can make people smile with their hearts.

May all of your Holiday wishes come true and the New Year be filled with Blessings for you and yours. 

Stay well and thank you for caring that a lowly Ferret enjoys writing about life.

THANKSGIVING: STUFFED WITH MEMORIES

Being a fortunate child, I had a mom who loved to cook and boy did she ever know how to cook a tummy pleasing meal.  My favorite meal of the whole year was the traditional Thanksgiving dinner.  She would get up before dawn, stuff the turkey with homemade white bread dressing, put it into the huge blue roasting pan and by the time I got up to watch the parade on t.v. the house was filled with the warm, mouthwatering aroma of roasted turkey.  Oven door squeaking alerted me to catch a peek of the lightly browned, crunchy skin on the turkey, as my mom would quickly take the lid off and baste the bird.  Steam bubbled up from the boiling turnip and carrots' kettle.  Deviled eggs were already made and back in the fridge until lunch.  Sweet potatoes were being candied in the cast iron skillet on the back burner (no marshmallows in mom's version.)  Homemade pumpkin pie was resting on the cooling rack, near the stove.  Giblets, neck bone and other "throwaway" turkey parts were being trimmed for the giblet gravy.  No one helped my mom and yet somehow dinner was always perfect.  It was as if she had an inner schedule that she knew exactly when to stir this pot; when to check the turkey to keep it moist; when she needed to add the flour to the gravy stock and when she could take off her apron and serve the most delicious dinner of all year. 

Up until her last few years, she made the deviled eggs and dressing and I made the rest.  Now that she's been gone for too many years, it has fallen on me to pay attention to that instinct that tells me when the potatoes are done and the turkey is ready to come out of the oven.  No matter how much I try, what spices I use, what ingredients that I add, my dinner will never taste as good as the ones that my mom so lovingly created.  She knew how to cook and feed her family with love.

With this remembering, I am reminded of all the blessings that I have been given and I am grateful.

Here's wishing you all a blessed Thanksgiving.  May your plates be full, your waistbands elastic, your loved ones healthy and your friendships ever lasting.

NOT ON THE MENU: DELICIOUS, ANYWAYS

When we went out to lunch at Olive Garden, we discovered that we had brought along one serious, little eater with us.  He didn't want to wait for the bread sticks, salad, or entree.  His little bowl was empty and so was his supply of patience.  Thank goodness we were prepared with a fruit cup that served as his appetizer.  Didn't realize that this fair-haired little guy would so love Italian food, but that really shouldn't surprise anyone in our family, as we are all pasta lovers.  Any form of pasta pleased our little guy; from gnocchi to lasagna he enjoyed it all.  Italian green beans, kidney beans, cheese and a bit more of peaches topped off his lunch.  People stopped and spoke to him and even though he smiled around mouthfuls of lunch, nothing stopped his eating.  Finally, I was instructed by his mom to stop feeding him, because he really had eaten enough for his little tummy.  He didn't fuss when the dishes disappeared, the bib was removed and his spoon was cleaned. 

Our lunch involved wonderful company, delicious food, and pleasant conversation that was seasoned with smiles and laughter. Who could ask for a better lunch?  Not us, and surely not our little guy who enjoyed the experience.

Fruit Cup brought from home:      $    .35

Dinner at Olive Garden:               $35.00

Stress free time with loved ones:  PRICELESS

PUTTING ON THE DOG: BENTLEY'S MAKEOVER

BEFORE AND AFTER PICTURES OF BENTLEY'S MAKEOVER









We decided that our little Bentley needed a good grooming by professionals, so off we went this afternoon. Since Bentley's lineage is questionable, we went with the best guess that Bentley's major breed is Schnauzer. As you can see the before and after pictures above, I think our handsome little guy looks remarkable. The groomer said he was a trooper and stood still for the whole process.

We were tickled pink with the results and kept laughing all the way home whenever we looked at the magnificent transformation.

Tough week for us and we needed this break from reality. Isn't amazing how pets heal us without even trying to be anything but themselves?

Oh, I almost forgot that Bentley smells delicious, too.

WALKING WOUNDED: NO MEMORIALS FOR THEM

On Memorial Day, we remember the people who lost their lives while in the service. There are memorials for the people who were killed during the Viet Nam War. Polished stone reflects the visitors who come to pay respects at this remarkable, moving creation. Many names are there, yet there are many more victims of that war who will never have their names carved in that breath-taking structure.

People who were caring, lovable, compassionate when they began their service in the military, returned as shattered, fractured souls. Counseling, medication and time hasn't been enough to heal many of them. Painful wounds leak acid into their inner beings and these toxins sometimes spill on those around them.

With this understanding, I mourn the loss of my brother. His name isn't carved into the glossy stone and yet I lost my true brother to the naplam-dropping plane in which he rode. His gentleness and loving spirit was replaced by an evilness that is no longer welcome in my world.

So on this Memorial Day I mourn those fratured souls who live with one foot in this world, while still pulled back their living hell, by all they experienced many years ago.

FRIENDSHIP: SO VALUABLE, YET IT'S FREE

Throughout my life I have surrounded myself with good friends. These friends have softened life's blows, celebrated along with me, and encouraged me when I've doubted myself. It is only logical that my daughter also benefited from my valuable friendships and would desire to have this aspect in her life.

Yesterday, when were at the Grandlove's birthday celebration, I witnessed the fact that my daughter has surrounded herself by friends who care for her and her family. These friends come from all walks of life, thus bringing a variety of personalities, abilities and life's experiences. It made me happy to see that friendship is valued and cherished by the next generation.

Friendships are priceless in their contribution to our lives.

BINGO, PEEPS AND SLOTS:LOVE 'EM OR NOT

There were many things that I learned to appreciate from my mom. She was generous with herself; a hard worker; dedicated to her family; adventurous; and loyal to her friends. I not only admired these qualities, but I tried to make them my own. On the other hand there were a few areas of my mom that I never could quite grasp.

My mom was always very conservative when it came to spending money, as most of the people who survived the Great Depression are. With that in mind, or maybe because of that period of never having enough there were quirky things my mom did. She always washed and reused plastic bags, both the Ziploc and grocery kinds. Below her kitchen sink was an assortment of cleaned glass jars that she might "need" someday. She never met a store-package container that she couldn't reuse for some other purpose. Nothing was wasted with her when it came to food, clothing, or containers. This was just the way she was; waste not, want not.

Understanding how frugal she was might lead to a surprise if you saw her around Bingo Halls or Casinos. I went to play Bingo with her one time and found the whole experience confusing, frustrating and too challenging to keep up with all the scattered numbers. Finally, I slide her over my cards to finish the rest of the games and sat back to watch her in her element. It was amazing that at the close of the games she didn't even care that she hadn't won, she'd had a great time. She loved the challenge of keeping up with the caller and the cards in front of her. That woman's face would light up and a new energy enveloped her being.

We were taking a long road trip one time and her energy was waning, until we stopped at a casino to take a break. Before I could exit the car and help my "feeble" mom out of the backseat, she was nearly at the casino door. My husband and I could barely keep up with her. Putting the quarters in and pulling the handle melted the worries and age right off her. This was when I realized the simple joy my mom found in those one-armed bandits.

Right now, I am smiling remembering how I would pull up before dawn to her apartment and she would be waiting dressed in her "lucky" shirt with pockets to hold her playing money, fanny pack, sun hat, and a cooler packed with our traveling food. When you traveled with my mom, you were packed and prepared for anything and everything. Cold sodas, water (in those saved glass bottles), pretzels, sandwiches, homemade cookies, and other travel comfort foods were loaded and dispensed at whatever time we wanted them.

My mom and I took many trips to the casinos, so that she could stay up all night, play the slots, grab a couple hours of sleep, and give it another try on her "lucky machine" the next day.

During our trips home, she would entertain me with details of how close she had come to the big jackpot, how the person next to her had done, or on a rare occasion how she would spend her winnings once we got home. My huge jackpot was being able to spend time with her away from the everyday tedious duties and troubles.

Another thing that my mom loved, but sadly I didn't ever acquire a taste for was a seasonal treat. PEEPS intrigued me and my mom said she loved their texture, taste and colors. Every year I would try them and be disappointed. The gritty texture and overly sweetness were not to my liking. Peeps would remain an area that my mom and I had could never come to agreement. She loved them and could devour an entire pack in one sitting, while I would hand her over the ones in my Easter basket. She didn't seem to mind, at all.

I have come to the realization that I could adore my mom forever, while at the same time not adore all that made her smile. As long as I live, I won't be able to see a bingo card, slot machine or a simple PEEPS treat without thinking of my mom. Nice, sweet memories of a great lady.

ZOO: What is old is new again.

There are two additions to our local zoo and some people are up in arms, because lions aren't native to Texas and they thought our zoo was only suppose to have native animals.

Many years ago, the zoo in the park had animals that weren't native to Texas and the zoo thrived. I remember one afternoon that my mom and I were there and the lion was being walked around. Getting permission, I got to pet the lion and I thought it was wonderful. Yeah, I know what a danger it was to be so close to a wild animal, but I found it quite thrilling to be able to be so close to such a powerful creature.

We also had other wild animals at the zoo, a train that carried joyful children through the shade of enormous trees, snow cone vendors and many people who relaxed with their families around homemade picnics. Young people learned to drive the meandering roads dodging the occasional wayward golf ball; children tore bits of bread to toss to hungry ducks; wooden bats cracked in hot summer air; and if we were lucky a traveling entertainment company would set up large flying swings to propel us around in dizzying circles.

So, our zoo has come full circle, with the purchase of lion cubs. Soon a new restaurant will be opening down in the park, children have cleaned up the duck pond and people are wanting the park to become active once again. I can only hope that more people will go down and put the family back into such a beautiful place.

NO CALENDAR NEEDED: I REMEMBER

As a nation we all have certain dates that bring back memories, some kind and some painful. We have December 7, 1941; July 20, 1969; September 11, 2001; and others that have remained in our hearts.

Besides these and other group dates, I have acquired some dates which have etched into my heart. I know that this isn't unique to me, as we all have our own milestones, but I wanted to share just a few of mine. Feel free to add any more that have caused you to become the person you are today.

May 1969: Graduated from the best high school that no longer exists.

May 1976: Received my Master's from the University.

March 1979: Met Mr. Right (and not just Mr. Right Now.)

July 1979: Married Mr. Right for me.

September 1981: Gave birth to our beautiful girl.

May 1982: Handed over our precious girl to the surgeon for major surgery.

May 2000: Our fantastic girl graduated from high school.

May 2004: Our stupendous girl graduated from the university.

March 2005: My incredible mom was released from her life of pain and suffering.

February 2007: Our remarkable daughter married her sweetheart.

September 2008: Our family suffered the effects of Hurricane Ike.

May 2009: Best souvenir from any cruise arrives--our grandlove.


Sure more happened before May 1969 and since May 2009, but I am not writing a book, just a memory jogging blog.

Thanks for joining me on this short jog.

GOD SAYS "NO!": My Life rejoices in his decision

Back in my early college years, I fell deeply in love with Bill. In order to understand this young man, one must picture his fresh face, brown eyes that sparkled when he laughed, slight-built body, and an inquisitive mind. We were introduced by our mutual love, the written word. He fancied himself as the next big-town reporter and I loved the work we did on the college newspaper.

Our time together had its own soundtrack, as the music we enjoyed still resonates with me. Many musicians passed through our town and concerts were affordable. Neil Diamond was one of the romantic performers; my daughter still teases me about seeing him. Outdoor venues, smoky auditoriums and college campuses provided plenty of opportunities to experience the "surround sound" of live performances.

Nitty Gritty Dirt Band's concert was recorded and I still have the LP of that special time, where we sat upstairs with our legs dangling through the railing. My embroidered bell bottom jeans, love beads, gauzy shirt and brown leather clogs made me look so individual that I succeeded in looking like every other long, brown haired girl there.

My concert experience are remembered fondly and I know that I have related them one too many times to my daughter when she turns to me, upon hearing the beginning a familiar song, "Yeah, Mom, I know. You and Bill were sitting in the balcony when The Fifth Dimension sang Won't you marry me, Bill? "

What I don't repeatedly tell her is how completely devastated I was when Bill broke up with me. Prayers to God were answered with a loud, definite "No." I beg, pleaded and bargained with God to make it right and give me back the lost relationship. Again, a resounding, definite, "NO."

Now, I am so grateful, because without losing Bill I wouldn't have gained the most incredible life I have. My husband would have been lost to me, my daughter wouldn't exist and to think of not having my Grand Love breaks my heart.

So, thank you, God for being patient with me and giving me the most fantastic gift of all, my precious family.

WHAT'S IMPORTANT: Life can change your mind

This week my family has had to deal with some serious information concerning some friends who are closer in our hearts than our birth relatives. These friends are in a fierce battle against a vicious killer. Chemo and radiation have tried their hardest to eliminate the out of control mutant cells. Our friend has been in this battle for over four years and throughout this time there have been encouraging news and just as many set-backs. Now, the latest reports have come in and the medical treatment is so difficult and painful with no guarantee of positive outcomes. We stand ready to aid in whatever small way that could be needed by either of our friends. They promise to let us know if there comes anything that could we could do to ease their difficult time. Prayers are said and we hug each other while we wait out this storm.

You might wonder why I posted this picture of my sweet little joy, on a blog about a friend's struggle for her life. The answer is simple. Our friends' journey has made us appreciate all of life's joys and diminish life's daily struggles.

Not enough money and too many bills? Oh, well, it'll work out.
Not enough support at work and more conflicts daily? Oh, well, it'll work out.
Roof leaks and needs to be replaced and not enough available funds? Oh, well, it'll work out.

We kiss the baby's sweet feet and realize that this day, this moment is a most precious gift and monetary concerns are not as important as this day with the people we love so very much. I truly am not Pollyanna and I am not playing "The Glad Game" here. I have just been given the gift of clarity of what is important to me and mine. Our family is well and therefore every hurdle we encounter can be managed, some how, some way.

Scars: Life's Memories Markers

Recently, I was at a new doctor's office and he touched my left hand and questioned me about a rather large scar that I have worn for almost all of my life. When I explained how I got that scar and what it represented to me, I gained more appreciation for the love and care I have received all of my life. My hand's scar wasn't the first one I received and it sure wouldn't be the last in my long active life. Funny thing is that each scar helps me remember my adventures and keeps those memories fresh for me.

I will start with the first scar that I was born with and before it healed, it caused many people immense amount of pain. My stomach was covered with an angry, blistered, birth mark that required radiation treatment and boric acid poured on for the first three weeks of my life. Even though I was a newborn, it took my mom and my Godmother to hold me down for those excruciating treatments. Being a mom now, I can only imagine the heartbreak that those two women endured for my benefit.

My left hand scar occurred when I was a toddler. Back in the days there were only glass milk jugs and during the confusion of unloading the car of the bottles, I got hold of one. The burden proved to be more than I could carry and I hit the bottom of the bottle on the outside step. I actually remember watching the blood spurt up onto the pink siding of the house. I don't remember the pain, just a lot of people rushing around and taking me to the doctor's office for help. Later, I learned that the doctor tried to talk my mom in letting him amputate my hand, because he said that I would never have control over it again. You see, back then, if you severed arteries and ligaments, the chances of complete recovery were slim to none. My mom wanted as full of a life for me as possible, so she refused the amputation and hospitalization. She watched the doctor retrieve the ligaments with a long hook and stitch up the arteries and everything else under local anesthesia. We went home that night and she laid next to me to make sure that my hand was kept on the ice bag and perfectly still all night long. Bless my mom's heart, I know that she carried guilt for years that I slipped out of her sight and found the glass danger that caused so much damage. My scar healed and my hand is completely useful. Thanks, Mom for believing you knew what I needed and going against the doctor's advice. Quite amazing for the early fifties, because most people were intimidated by professional men.

I will not go into such great details about all of my scars, but they each carry part of what makes me who I am.

There is a c-section scar which was made to save a premature baby girl, who has now given me the most precious grandson.

Knee surgery scars help me walk better.

Of all the most recently acquired scars that I treasure are the ones I got this year from back surgery. Because of the surgery I can walk longer and with less pain, but what I take away from those scars are the memories of the care that I received from my husband. You see, my husband passes out at the site of bodily injuries to the ones he loves...I mean literally passes out. When I came home from the hospital and my stomach and back had surgery wounds that needed daily dressings, we knew that he was the one who had to take care of them. We laid everything out and then he knelt down behind me. I questioned him why he was on his knees by the bed and he explained, "If I should faint, while I am doing this, I don't want to fall so far down and get hurt." At first I thought he was joking and then I realized that he was serious. So each day, he would help me shower and we would lay the new salve, gauze, tape, etc. out and he would pat me dry and minister to my needs.

All of my scars mean more about love than any card Hallmark could ever print for love never ending. People have helped me heal from physical pain and all the pain that only they could see. I will be eternally grateful for all the care and love my healing process has received from my friends and family.