My Grandlove

This is our journey.  Starts with an earthbound angel and ends on the first day of Advent, when he got his angel wings and entered Heaven to experience the childhood that Leukodystrophy stole from him.

Holding Stephen as he slept was one of my favorite things to do.  He would rest so peacefully and my arms never grew tired of holding him.  He did love his binky.

He loved his Papa Steve and boy did Papa Steve love him right back.  While he could still hold his head up, the shoulder gave him a great view of the world.  Sleeping or checking out the world was always better with Papa Steve.

When he rode his first merry go round, we knew that he loved it.  The music, the motion and the bright lights were fascinating to him.

Amelia had him Christened when he was seventeen months old.  Merisue and her husband Calvin became his God parents.  No one realized that the journey was about to become so different from anyone's expectations.  We couldn't have traveled this journey without these fine people.




Playing was a great past time for this little curly-headed boy.  He loved his toys and his books.  This is when we started noticing that he would fall down a lot. 

Took him to the doctor and it was decided that ear tubes would help him with his balance.  Surgery was successful, but the falling down continued.

Following the advice of Early Childhood Intervention, an MRI was done and the results came back during March 2011.  When we sat and waited for the doctor to explain what the results meant, my heart sank and I knew that our life had just changed in ways that we could never imagine.

 This is how old our little guy was when we heard the news that changed our lives forever.











Along the way, we were helped by some amazing people who heard our story and wanted to celebrate our life.  Belinda Higgins from Higgins Photography, arranged a couple of photo shoots, so that we could have physical memories of our precious boy.  She captured his angelic look and then she invited us back for a shoot with Santa.  By this time, Stephen could no longer hold his head or body up, but the fascination of Santa gave him a boost of energy and he checked out the big guy in red.  This was the last picture we would have with Santa.
 

 

 

 Between the Angel shoot and the Santa shoot, eating was becoming too difficult for Stephen, so he had to have a feeding tube placed.  In this picture, his momma and he tried to catch some rest in between nurses' visits and medication.  Feeding Stephen with the feeding tube saved him calories that were used by drinking and eating by mouth.  We had many times of learning what not to do and a few times of pure panic when his stoma gave us heck.  We became experts after awhile on how to feed, clean equipment and everything we didn't know before this.  In fact, we were amazed that more hospitals weren't ready for feeding tube children.

 Stephen handled the feedings well, but boy did he miss his eating and drinking.  For awhile he could still have ice cream (Red Velvet was his favorite), but then even that was a choking hazard.  We pretended that he was drinking coffee with us in the mornings, because he loved the smell and taste.  (A drop on the lips would bring a smile to his face.  But eventually that drop was even stopped.)

Throughout all this time, we made sure that Stephen's world was as happy and pain free as possible.  Medications and therapy helped him with his spasticity and pain.  He loved going to therapy (when he felt well) and the "ladies" all fell in love with him and his endearing spirit.

 When we met, Jamie from JME Portraits, we fell in love with each other.  She saw our little guy's wonderful spirit and captured it in pictures featuring her own children.  What a wonderful gift this was for us. Then when his little brother arrived, Jamie took priceless pictures of the two beautiful boys.

 Throughout the days, we found things to amuse Stephen and the amusement came from unusual places.  Like who would have thought that hippos would be so intriguing.  Well, Stephen loved his hippo and when we sang, "I want a hippopotamus for Christmas" his face lit up.  That song brought a smile throughout the years.  In fact at his memorial/visitation the song was the last song played after the rosary.  Got half of the people singing and the other half wondering, "What the heck?"

Trips were taken.  Make a Wish provided a dream vacation, including EVERYTHING you could imagine.  Hospice of South Texas's social worker arranged a behind the scenes trip to Sea World and it was unbelievable.  Stephen was held by "his Nathan" and they looked into the great blue yonder.  In September, Project Angel Fares reached out and we all got to go to San Antonio to stay at an unbelievable resort and then enjoy Morgan's Wonderland.  Memories of that time are held close in our hearts and brings smiles to our faces.

 

 
 
 
 
 
 

 

 The days turned into months and then the week of Thanksgiving arrived.  Early Monday morning, Stephen started to show signs that his little body was tired and he needed to rest.  The Hospice of South Texas nurse came out during the night and helped him get comfortable.  During the day, his nurse, Tammi and his doctor, Dr. Meyer came to see him.  We had discussed that one of these times, he wouldn't be able to recover from his "setback."

 By the afternoon, he had more energy and was more awake.  What we loved about our Hospice friends is that they were honest, when we asked them questions.  I asked Tammi, "Is this a rally or a comeback?"  Her reply was, "I am going to stay positively optimistic, but I am afraid it's a rally."

 I was at home that evening and packed a bag to go back to stay with the family.  Stephen wasn't doing well, and as each hour passed, we realized that he was holding on, because we loved him so much.  As the days passed, I don't remember what we ate, when we bathed, who was with us or what we talked about.  I do know that Hospice of South Texas people put their families on the back burner and took care of us that entire week.  We held a vigil and we made sure that Stephen was held, comforted and loved on during this time, just like he was for his previous four and half years.  Medication, oxygen and comforting touch kept pain as far away as possible, but there were times that his pain was stronger than any human concoctions.  His nurse, Tammi and his Dr. Meyer worked tirelessly to make sure that whatever he needed they would provide.  The pharmacist came back from a family gathering, so that Stephen's pain could be managed.  Hours ticked by, people came and went and days became night and then daylight would come.  On Thanksgiving, Stephen was stable enough that the nurses and doctor went home for awhile and Amelia laid on the couch with her precious boy for a comforting time. 

















The vigil continued with our presumed "deadlines" unmet.  We tried to figure out why Stephen was fighting so hard and then we realized that we had always taught him to never give up.  Sleep for us was grabbed as we could and on Saturday night, I got up after a couple of hours and went into the kitchen and said, "I need to hold him.  I need to hold him."  Sweet Nathan was in the rocking chair and he very graciously handed my sweet boy to me.  After the house was quieted down, Stephen's volunteer, Susan, sat next to me and we visited.  Coffee and cake was shared as we talked about nonsense.  At a little after three, I said, "That's different," indicating Stephen's breathing.  He took a sweet breath, Susan went and woke everyone up and after two more breaths, Stephen had a soft smile on his face.  We all hugged, kissed him and told him how proud we were of him and how much we love him.  Hospice was called and the nurse came to pronounce his passing.  By then his God parents had come back, along with his Papa Steve and all his hospice angels.  We sat around and talked about our favorite times with Stephen and celebrated the sweet, little guy.  Finally, the funeral home lady came and we walked our boy out to his stretcher.  He had a pillow and blanket and she was kind enough not to cover his face before she rolled the stretcher into the vehicle. 

Later that day we went to the funeral home and made his final arrangements.  The funeral home people were outstanding.  Our little boy was treated with the dignity and respect that he deserved.  We held a visitation and rosary with over two hundred people in attendance.  He touched so many people in his short life, that it takes my breath away, sometimes.  He was the joy of our life and he resides in our hearts to this day.

 

Hospice: Not what you think it means!

 

 
 

HOSPICE:  Not what you think it means!

For over two years now, we have been living with the reality that our sweet, precious little boy will not live long enough to get his second set of teeth; double digit birthday cakes; or even kindergarten pictures.  In late Spring we will celebrate his fourth birthday and everyday the realization that he is declining is slapping us in the face.  You see, when the diagnosis of Leukodystrophy is given to the family, since all the family is affected, you reset your priorities. Comfort, smiles, laughter and downright silliness are the things that we pack in the day.  We know more about medications and comfort measures, than first year med students.  There is an unspoken routine that is followed by everyone involved in his care.  The complexity of Stephen's care is not unique for other Leukodystrophy families, but we are one of the exclusive club that watches milestones slip away and in their place come feeding tubes, communication systems, constant monitoring of respiratory and digestive systems, as well as the normal daily care of a toddler who depends on someone for everything.  Anyone can wonder how we manage and that is the purpose of this article.  I would like to point out that NO ONE could be on this journey alone.  Without intelligent, compassionate support, Stephen would have already earned his Angel wings.  That intelligent, compassionate support for our family is Hospice of South Texas. 

Hospice of South Texas has been taking care of our whole family since last fall.  The day that my daughter concluded that school was too energy draining for Stephen, was the day that she enrolled him in the Hospice of South Texas program.  We had believed that a person had to have only a short time to live, in order to receive services, but we were wrong.  The law has changed to include pediatric patients without any time constraints.  (Even though I had been trained as a volunteer years ago, this fact was something I wasn't familiar with, because after all, who wants to think of pediatric hospice services? )

Admittedly, in the beginning we cried a lot, because the mortality of the disease is quite breath-taking.  We were also a bit overwhelmed with all the "new" people in our lives.  It was difficult to keep everyone's names straight, and jokes were made about certain people, like, "Oh, yeah, that's the nurse we like," when in fact, we absolutely adored all the nurses.  All the nurses are unique in their own ways, with a very important factor that ran through each caregiver; each one kept our family's best interest in the forefront of their hearts.  We have always wanted Stephen to have as much comfort and laughter that is possible. 

Some situations have called for house calls from the doctor and medication was adjusted.  These were very scary times, because the little guy seemed to be so miserable and slipping away in leaps and bounds.  No heroic measures were done, just a tweak of medication, more respiratory activity (nebulizer and chest repercussions) brought back happy days for Stephen.

Since Hospice of South Texas has been in our lives, other life events have added stressors to our already complex situation and our support staff have stepped up to the new challenges laid before us.  My Heart (daughter) and her husband wanted to have a baby in their marriage, and everything was wonderful during the pregnancy.  We found out that there would be another little boy in the household and we breathed a sigh of relief, since "we know how to handle boys."  Everything went along as planned until the actual day of delivery.  When my precious, brave daughter was in labor upstairs in the hospital, I was downstairs getting a biopsy of a tumor in my breast.  Before our new little guy was home from the hospital, I received the diagnosis of breast cancer. 

Breast cancer, which has been attacked through surgery, chemo and medication, will not define me, but let me tell you, it has surely knocked the wind out of my ole sails.  In this part of the journey our Hospice support staff have gathered even tighter around us to make sure that we get what we need to have quality of life.  Food has been brought, rides to the doctors have been given, hugs have been shared, shoulders to cry on have been offered, jokes have been exchanged and the many burdens have been shouldered by our friends at Hospice of South Texas.  Rocking new babies, holding Stephen, picking him up and entertaining him are "chores" that I have learned to share with these marvelous people, because when I am not able, these boys deserve to have their needs attended to with the love and devotion, that is the hallmark of Hospice of South Texas. 

A Special GPS is Needed for this Journey



As the weeks of this pregnancy pass, I try to wrap my head around the fact that this child is healthy and will NOT suffer as my Grandlove has.  He will meet and KEEP all of his milestones.  He will run circles around me, while babbling toddler words and capturing my heart and soul.  When he has the regular childhood bumps and spills, my heart won't stop and my breathing will continue its regular pace.  Doctors' appointments will be few and far in between and only for the "regular" little people stuff.  Clothes will be outgrown; shoes' soles will be worn out; toes will poke out of ends of socks from running around barefoot outside; food will be thrown from the highchair or painted on chubby cheeks with curious fingers; t-shirts will become so soiled from the multitude of staining items, that even using them as dust rags isn't an option; toys will find tender feet, because they are left out after a play date; crust less peanut butter sandwiches will be eaten on a daily basis; T-ball games will be attended, in spite of the hot weather; report cards will be displayed proudly on the fridge, along with drawings; and stinky boy smells will become daily perfume that will bring a smile to my reluctant soul.  When I think of how different this little person will be, I honestly can't even begin to grasp the reality that will be mine in just a few months.  Hang on with me and we will see what lessons this new journey teaches me.

GRANDLOVES aren't for Wimps

This picture of my sweet, precious, Grandlove and his future brother (with his mom, of course) was provided by a very wonderful person.  Jamie took many hours and many photos during this sunny day to capture the best of all of us.  She does this for families with children who are fighting for every day of their lives.  That few hours was filled with laughter, no medication, no tears and for that we are forever grateful.  Thank you, JME Portraits of Cypress, Texas.  You and your family are part of ours, now.

 

 

I wanted to use this picture for my blog, because this blog is about our future, one with a little boy who will be unlike his big brother, my Grandlove.  The past few years I have adjusted how I "grandmother" to the point that thinking about a grandson, who is different from the Grandlove, scares the beejeeus out of me. 

 

I know how to do feeding tubes; around the clock medication; pediatric hospital stays; botox injections for spasticity; physical therapy, occupational therapy; speech therapy, wheelchairs; specialized car seats; AFOs; wrist splints; communication switches; IEPs; ARDs; and Hospice of South Texas.  Each item listed has become ingrained in my everyday "brain" and has become second nature to me.  It's nothing to deal with a runaway feeding tube (unaware that it's unhooked) or juggling the appointments that fill my calendar.  The trade off is that our daily routine has given me a false sense that I can handle a three year old.  Only when we are out and about and I see other little guys running about causing normal little boy chaos that I realize that I don't know how to grandmother that type of boy.  How do I answer all the "Why?" questions that little boys gleefully throw back at adults?  How do I keep a little boy safe, while he explores all the places in his world that aren't meant for little boys, but little fingers always find?  How do I keep up with the energy of a little boy who only has two speeds, fast and asleep? 

 

 Don't misunderstand, I pray everyday that our new addition will be able to do all the things that little boys are suppose to do, and right on schedule and keep on doing everything "perfect" throughout his whole life.  His big brother is the sweetest, most precious little guy in our life, so we are hoping that the sweetness will be a brotherly trait.  If by a slim chance I ever need them, I've already been practicing my lines to this little rascal, once he finds his own voice and spirit.  IF he ever decides to try to talk "smart" to me, I will simply remind him, "Your big brother NEVER talked back to me."  In fact that line can work for many situations of being naughty. 

 

 

Just in case all that doesn't work out, I have already called dibs on my Grandlove.  He fits just fine in my heart and on my shoulder.

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.)

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. 

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. 

PRICELESS GIFT: TIME WITH LOVED ONES

Way back when the daughter was a toddler, this little reindeer delighted her, with its whimsically lit nose, the Christmas tunes it played and the movement of its legs.  Her Nana had bought it for her and its entertainment value diminished as our daughter grew older.  New batteries, a good dusting of its antlers and he is now entertaining another curly-headed sweetie.  His joints make a little more noise than they used to, but then again whose don't?  Twenty-five years old and he can still bring a smile to my daughter, "I remember him" when I set him down in front of the Grandlove's curious fingers.

My quest for the Fisher-Price record player was rewarded with a hands-on approval from the Grandlove.  He used his farm people to help him investigate the turntable.  The songs were familiar and he smiled his approval.  Made the hunt for the record player so worth it.

After enjoying a delicious meal, the two guys put their feet up and enjoyed a special movie.  Who doesn't like Mary Poppins?  It was a nice, quiet day.  In this hustle-bustle world we live in, it is nice to relax, share a good meal and appreciate the people in our world.

GIFT THAT KEEPS ON GIVING

Spent a few hours with my Grandlove and that's all it took to give me peace, hope and the overwhelming feeling of well-being.  He is better than any prescription in helping me to know that good will prevail and the negative aspects of life will not be enough to squash me and mine.  Such a gift from God, my Grandlove. 

ROADTRIP TO APPRECIATION

With all the stuff that has been happening in our little Hicktoria, lately, I almost forgot what really is important.  It took a trip to an enormous children's hospital to jar me back to my place of appreciation for all the gifts I have been given. 

Monetary gifts in my world are just a wild dream, so those aren't the gifts that I appreciate.  Aging has taken its health tolls with me, so a springy, vibrant body have long lost its possibility for me.  Fancy cars have never been a priority to me, which is great, since those would never be possible in my world.  What blessing do I value and need to be gently reminded of, you might wonder?  Well, when I found myself in an environment with critically ill children; children with heart conditions that impact longevity; children who are non-verbal because of autism; children who spend their days in darkness because they were born blind; children who are well known due to numerous hospitalizations; and of course the parents who must rely on medical advances to ensure just one more day with their loved one, then I know that I am truly blessed to have a Grandlove with manageable health concerns.  He underwent another painless test, yesterday and we were told by the Tech that it seemed to be within normal range. 

What did I take away from the long day?  I am grateful for all the gifts that I promise not to take for granted.  Family, friends, and Bentley have been given to me by a most merciful God and I truly am grateful for His Love, which is constant, even when my appreciation wanes and a wake up call is necessary.

READING, WRITING AND BATHING: PERFECT COMBO

We introduced writing in the bathtub and boy did the Grandlove take to it; sort of like a duck to water.  He loved the water and the markers that even worked on the bottom of the tub.  We are big believers that learning can take place in almost any locale, and this proved to be a success.  I just had to share his first encounter with bathtub markers.

HE'S NOT HEAVY: HE'S MY GRANDLOVE

Our little guy was plumb tuckered out, after a great seafood lunch.  He fell asleep in the car and let his Papa carry him from his carseat into the store.  As soon as we hit the store's entrance, those bright eyes popped open and the smile appeared.  We are teaching this little guy to have fun shopping.  The next generation of ladies can thank us later.

BLESSINGS: SEALING THE DEAL

Our sweet Grandlove was marked with the sign of Christ,  recently.   We've known all along that God has a special purpose designed for him, even before this moving event.  Our little guy speaks volumes with his smile, chubby fingers and determined facial expressions. 

Although his speech is a bit delayed due to a temporary hearing loss, he is able to communicate.  No, he doesn't use American Sign Language for his communication needs; it's more of unique sounds, facial expressions and hand motions.  He was fascinated with the minister's "headset" and before the religious aspect of the ceremony could even begin, the equipment was grabbed by the quick, little hands of our guy.  This innocent exploration caused the congregation to laugh at how fast he was; if they only knew all the "quick saves" his sweet momma has anticipated on a daily basis.  His curiosity in the world will benefit him, once he's able to hear language clearly.  By this time next year, we'll probably be saying, "If only he would not talk so much."  Until that time, we will make sure that he is exposed to a rich environment and keep dangers out of his reach. 

SWEETNESS: TIMES TWO

When we went to brunch Saturday morning, the sweetest things in Cracker Barrel weren't on the menu.  My Grandlove and Heart passed the waiting time by coloring and checking out the activities nearby.  Once the food arrived, our little guy loved the meatloaf, mashed potatoes, green beans, baked apples and biscuits.  As I looked across the table, I imagined that I was my mom and was transported back in time.  She would love our little guy, since his disposition is very similar to his mom's and in her Nana's opinion our little girl was perfect. 

HAPPY BIRTHDAY TO MY HEART

This is a picture of my external hearts....my daughter and her precious little son.  If she looks scared, that would be pretty true, since she had only been a mom for a little over three months.  Her mothering skills have become stronger and more sure with each passing day.  I admire the fact that she has taken all that she has learned and tweaked it into her own way of parenting.  It's difficult to remember that it's been twenty-nine years that I first looked at her tiny face and fell in love.  So many things have happened in our lives and yet the one constant is that my love for my daughter has grown each moment.  She does know where all my buttons are and she has engaged them more than once.  Even during our tense times, our learning times, I have never doubted that I have been blessed those so many years ago when I first saw that tiny, rosebud mouth and held her.  Colic, teenage woes, hospitalizations, surgeries, illnesses temper trials, college adventures, relationship difficulties, life plans dashed across the rocks of disappointment and all the times I was told, "You don't know" have only added to my appreciation of the strength of our bond.  I love her more than life itself and that was even before she blessed us when our little Grandlove.  He's the icing on the cake. 

Happy Birthday, my sweet girl.  You have brought so much joy, love and support to our family.  May your blessings always outweigh life's struggles.

SO MUCH LOVE IN SUCH A LITTLE GUY: MESSY, BUT ADORABLE

This was his first ice cream cone and boy did it top off the great lunch he ate!  Nothing much left at the end, just a bit of a cone, a messy face, smiles all around and a satified tummy.

At the end of supper, at home, we laughed at all the "leftovers" stuck to his fair skin.  If you check out the satified look on his face, you can tell that this little guy loved his Nana's Chicken Spaghetti, carrots, fruit, and vanilla wafers for dessert.

At the end of a long day, who doesn't need a shampoo "mohawk" and a few toys in a bubble bath?

We ran errands, went to an appointment, ate well, played hard, bathed with good toys and finally passed out next to a very tired Nana who was reading in bed.  Life is good.

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

BUBBLE WRAP: PRECIOUS PROTECTION

Stressful couple of days, so I appreciated the relief I found in small moments like this. Carefully packing yesteryear, drying tears and dividing broken dreams among two households was difficult.

Even though my Grandlove is so little, he was able to lighten the tasks, turn tears into smiles and turn regret into hope.

For those over-the-top safety minded readers: We were VERY careful that he didn't eat the "Bubbles". Actually, he was more fascinated with the swooshing sound the plastic made as he waved it around, then when we demonstrated the pleasure of popping the wrap. Each to their own as far as bubblewrap is concerned, I suppose.

I am just grateful that this precious distraction helped my mounting blood pressure ease down a bit.

Next weekend, THE MOVE. And the next chapter of life for two people who have been through the wringer and deserve a happy, stable life.

FLUID PLANS: GOING WITH THE FLOW

Over twenty-six years ago, this sign represented hope for our young family. My husband had decided that his addictions to drugs and alcohol had taken too much away from us, so he came to this place to find sobriety and sanity. Through many days of struggle, soul searching and commitment, the bumpy road to recovery was traveled by my husband. Relationships affected by addiction are fragile and must be reinforced by therapy for both of us. Throughout the years following addiction treatment, Alcoholics Anonymous meetings provided guidelines for healthy living.

During this weekend, we drove the same wavy, twisty journey to Starlite, so that we could attend an alumni weekend. We were surrounded by hundreds of sober-living people who had a great time eating, visiting, playing games, admiring each other's families and listening to speeches from invited guests.

Orginally, Hubby was to speak at one and then the time was changed to two and finally three o'clock was the assigned time. Doesn't sound like a big deal, does it? Each time the schedule changed, my hubby greeted the new time with, "Okay, that works for me, no problem." He didn't let the changes bother him, which helped him adjust his attitude quite quickly. Others might let postponments irritate, but not someone who appreciated all that a sober life had given him. You have to admire someone who knows that another life could have been his, if he hadn't choosen sobriety. Acceptance of changes kept my husband cool, while others around him fretted and itched with impatience.

While waiting for the speakers, music was played and Papa held his Grandlove so that they could dance. They danced like no one was watching. They danced under the hot, summer sky. They danced in joy and appreciation for all that is right in the world. They celebrated sobriety and sweetness. Capturing this moment and holding it in our hearts is what matters to us the most.

All the activities were conducted outside and for those not in our area, it is SUMMER here, already. Large, well placed, ice tubs held bottled water and sno-cones did their best to cool our insides; while the sheltering oak trees cast cool, lacy shadows. Each soft, brave breeze was greeted with a sigh of relief from us.

Our Grandlove was precious as usual. He entertained himself by exploring the blades of grass that tickled his bare legs; attempting to eat elusive ice chips from his great-grandmother's hand; and flirting with all the pretty ladies in the audience. He actually was more patient than others in our family who seemed to think that continually announcing, "I'm Hot!" would make the day cooler. Finally, late in the afternoon, I strapped the little guy in his stroller, found the shadiest spot and rocked him to sleep. What a precious little guy.

Driving home (boy was that a long drive) gave us time to appreciate how far we have come. During my husband's treatment, I would drive up on Friday nights and on Sundays I would drive home with our little girl passed out in the backseat. Now, we had our curly-headed Grandlove in the backseat and his mom next to him, love just keeps growing with us.

We are a sober family, who appreciates the past in order to value the present.