Pain in many forms

Today, I needed a very painful procedure.  I knew that it would be so painful; in fact I was worried that would scream, yelp or make lots of noise. So, this is what I did. I put rubing alcohol on a cotton ball, inhaled deeply; put my earbuds in and pushed play on "Barcelona" with Freddie Mercury and his operatic equal.  Kept my senses bust, the procedure didn't hurt, in fact, I didn't feel anything. My foot was treated and I will have future treatments, with no fear of pain. You see if I know something will hurt, I can prepare myself to endure anything.  Everything was great....

Until, I pulled into my driveway and sat there crying. My foot was hurting, it was my memories of situations that hurt me more than anyone could imagine. I sat for days with my dying mother, telling her I would be fine.  And then years later I sat, cradling my first born grandchild as he took his last breath; handing his body to his father to carry ro the gurney from the funeral home vehicle; standing holding my daughter's hand and looking as little Stephen's perfect face at the funeral home; and finally standing at the podium to express my love at his service.

So, when I know something is going to hurt, my way of coping is to keep breathing and and know that I will get through whatever pain is thrown at me. Just let me prepare and then after it's over, give me space to cry and then breath again.

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.

 

The Perfect Present

This time of the year is a very busy time for many people.  Stores are crowded, music is playing and cash registers are ringing with the sounds of the season.  There is so much emphasis on finding just the right present for those we love.  Many items are considered until that one special present is selected.  This Christmas Season I have slowed down my hustling and bustling and remember that the most perfect present I have ever received was time with my Grandlove.  This picture was one of many times that I stopped what I was doing to cuddle with Stephen as he ate his meal.  He could cuddle and the world became so focused for me.  He would grab at me and close his beautiful eyes as he napped in my arms.  I knew that each time I held him it was one of the pre-determined times we had left. 

When he was born I listened in the hall and heard what I thought was odd for the early morning hours in the hospital, it sounded like a kitten.  That wasn't a kitten's soft cry, that was my brand new grandson announcing his arrival.  He was a wrinkly mess of love, even then.  Cuddling was our special time together throughout the years.  He slept the most soundly when he was in my arms.  Spoiled?  Naw, just good grandparenting.

Fast forward through many obstacles to a few weeks ago, Thanksgiving week.  He was approaching his angel wings and we all took turns holding, comforting him.  On December 1st, I said that I needed to hold him.  My son-in-law (Stephen's Nathan) gave over the rocking chair and his sweet boy.  Stephen's hospice volunteer and I cleared the living room of all distractions and the house settled down peacefully.  The hours passed with us talking about nonsense, eating cake and drinking tea, until a little after three there was a marked change in Stephen's breathing.  I said, "That's different," as he took a sweet, deep breath.  Susan ran to get Stephen's mom, dad and his Nathan up.  Stephen took two more sweet, deep breaths and then a soft smile was on his lips.  We all kissed him and told him how much we love him, but it was time to run with his friends and fly free of all his pain and suffering. (He had been looking at the angels all week and we knew that he would join them when he was ready.) 

I will never forget that moment that I watched him take his last breath and smile at the glorious angels who had come for him. 

That moment, that is my perfect present.  Can't buy it in the store, can't order it off the internet, can't duplicate it, 'cause it's imprinted on my heart forever.

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. 

No Way Could I Balance Without Help

Since I started this journey with the Grandlove and his Leukodystrophy, I have learned that it's okay to lean on others when the my world gets a little shaky.  My mom raised me to be independent, but let me tell you, without others I would have literally crashed many times.  I don't always need a hand, but when I do, I can reach down and one will be there to steady me and mine.   What is even more incredible is that sometimes I don't even know that I am on shaky territory as soon as those in my life realize that I need a bit of assistance.  No one can take away my fears, sadness or anger, but they can make sure that those feelings do not become the focus of my life.  Keeping me in balance can be a very tiring responsibility. so I am thankful that that duty is shared by many.  My family, friends, hospice workers, and facebook friends all supply me with the stability that Leukodystrophy tries to shake loose.  Thank you for all the care and support I receive.  Without you all, this would be an impossible journey, especially on the unicycle that all Leukodystrophy families ride.

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.

Our Angels Here on Earth: Hospice workers

There was a day, a couple of months ago, when a very difficult decision was made concerning my Grandlove.  My Heart had researched what services could be provided for her little boy by our local non-profit Hospice.  Meeting with the pediatric nurse and discussing the monster, Leukodystrophy, brought out many feelings that we put aside during our day-to-day activities.  To keep his days as stress-free as possible, we try to provide a positive environment, thus we don't address "what he used to do" and "what he won't be able to do" very often.  It's not that we don't realize that our time with this sweet, little boy is very limited; it's just that we don't want to focus on the sadness.  Our nurse listened with her heart and gave us her strength to get through that meeting.

 

During that initial intake meeting, his school called that he was sick.  So not only was my Heart starting Hospice for her son, but she decided that school was just too much for his energy level.  We finished the meeting with the wonderful nurse and then picked up our little guy from the school.  Grieving happened in the day; grief for not being able to have the "normal" experience of school and grief for the fact that Hospice was necessary in his little life.  That hit me very hard and I didn't know how I would handle Hospice coming by to provide services to Grandlove and us.

 

Well, my misgivings were very quickly dissolved when the first visit occurred.  In the door two wonderful souls came wrapped in the bodies of two nurses that would provide relief to this tired family.  Medication has always been a major "headache" for us because of the complexity of the prescriptions.  No more would we have to stand in the lines, wait for the compounding, keep track of the interactions or any other unlimited stressors we have endured.  Hospice nurses call in the prescriptions and the pharmacy delivers the medicine to the front door.  Sounds like a minor thing, but anything that could take a burden away from us was a welcomed relief. 

 

Relief from the craziness of local pharmacies that don't "get" what is needed for our little guy, is a very appreciated gift from Hospice.

 

We discussed all of our medical decisions with the Hospice workers (nurses, doctor and social workers) to make sure that the preventative procedures we wanted, could be done.  What a relief to know that things like flu shots, physical therapy, speech therapy, occupational therapy and botox injections could be administered, because we are all in the fight for quality life for our little one.  Amazingly, when the Grandlove gets hit hard by respiratory situations, the nurse comes out, no matter what time they are called.  No more ER visits; no more exposure to everything in hospital waiting rooms; no more having to "teach" medical personnel about Leukodystrophy; and no more questioning the care that was given at the ER. 

 

Freedom from worry, is a wonderful gift that we have received from Hospice.

 

During the visits from the nurses, volunteers, social worker, and doctor we find that these people are focused on the whole family's needs.  We laugh much more than we cry, because of Hospice.  They are here for us for anything that we need to make the Grandlove's life richer, more comfortable and as pain-free as possible.  I don't know about all Hospice situations, but I tell you Hospice of South Texas workers have taken so much stress from our lives.  No they can't cure our sweet boy, but they can do so many wonderful things in our lives.  If they could take our heartache away, I know they would, but since that is impossible, then they have joined us on our journey. 

 

Hospice has joined with us and we will never be alone, no matter how scary this whole process can get.  Our Angels, our Hospice workers wrap up our breaking hearts with their wings and let us know that they are with us. 

Mark of Christ

This was a pic from Grandlove's time to receive the mark of Christ.  He was still walking and babbling, in fact I had to run after him through the halls.  I came across this pic and realized that what we knew about the future for us would fit on the head of the pin.  This was before words such as:  genetic testing, Leukodystrophy, swallow studies, feeding tube surgery, botox injections, physical therapy, funeral plans and quality of life were part of our daily conversations/concerns.  Oh, to turn back the clock and be free of the information that wraps around our hearts and makes it difficult to breathe some days.

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.)

TOMORROW:A NEW LEG OF OUR JOURNEY

Tomorrow, we leave to start a new leg of our journey.  A fun part of this journey will be to spend some quality time at a wonderful hotel (Springhill Suites).  Through the generosity of a fine gentlemen, he has donated our room the night before the early appointment for the procedure.  As I have realized, there are many kind people in this world, who cannot take away our pain, but ease the daily strife a bit with their acts.  Thank you, Ben.  You are awesome to spare us an added anxiety.

On Thursday, our little guy will receive his botox injections in his legs.  Botox will be a new experience for us and we are hoping that the injections will help with the spasticity that cramps our little guy's legs and hands.  Hopefully, the pain involved will be outweighed by the positive impact of the medicine.  We do know that where we go for this, we love the doctor, the hospital and the care we receive from everyone.  So with hope in our hearts, we will go and try this treatment for our precious, little guy.

ESPERANZA: HOPE

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

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

Two Brave Souls Joined Forever

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

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

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

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

WHAT A SPRING BREAK!

OLD SOUL: YOUNG HEART

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

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

WEARY TRAVELER: PASSPORT TO UNKNOWN

When I acquired my passport, I looked forward the exotic places and extraordinary experiences it would grant me.  I have cruised to faraway ports and flown to remote lands, where my experiences were exciting, refreshing and scrapbook worthy.  New experiences were so fun.  Not knowing what I would find around the next, added to the enjoyment.  My passport served me well, as I enjoyed new people, places and challenges.    This last year, my official passport has been gathering dust and basically been replaced with the demands of my journey trying to find answers for The Grandlove.  Instead of souvenirs from exotic places, I have gathered receipts from hospital parking garages.  Instead of tour maps of tropical islands, I have learned the quickest way from lab to the doctor's office.  Instead of deciding on which seating would be best for on a cruise, I have learned that the adjoining hospital has a much better selection in their food court. 

 Learning to create creative towel animals on the bed, has been replaced by learning to help the little one overcome his fear of laying on his back during diaper change.  Figuring out the current exchange rate, has been replaced by figuring out the correct dosage of "Barbie Plastic" (Miralax) to compensate for muscles that no longer work correctly.  Trying to stay awake late enough for the Midnight Chocolate Buffet, has been replaced by appreciating any amount of sleep that the little one can get, on the bed and not in some one's arms.  Attending art auctions, has been changed to participating in the therapies scheduled to help with the body that is failing. 

My new passport has granted me access to places, people and situations that I didn't even know existed.  Our journey hasn't been all horrible, I must say, though.  My friends and family members have really stepped in to help anyway that they can.  Listening, encouraging and caring are priceless treasures we are granted on a daily basis by those who love us.  We have also been fortunate to be given the gift of new people in our lives.  Higgins Photography has taken our family into their heart and given us so much love that we are blown away.  Other people have shown us that they know they can't take away the pain, but if they can lessen the intensity they will.  We are strengthened by our blessings of people who prop us up on a daily basis. 

There will be no stamps in my passport for this journey that I am on, no postcards from faraway places and no souvenirs for my curio cabinet.  Each day, each smile, each laugh from the Grandlove is priceless and never to be forgotten.

The Best Present

Here's a photo from Higgins Photography (thank you, Belinda Higgins).  She captured our little guy as he was getting all of Santa's secrets.  My Grandlove is our present.  He reminds us that there are no tomorrows and yesterdays are gone, so we only have this moment to treasure.

If I keep busy enough, reality can't be so real.

With all the "stuff" we have to do for the Grandlove-doctors appointment; lab work; equipment ordering; therapists who come to the house for him and everything else, it's not until I finally put my light out and try to sleep that the overwhelming sadness of the reality washes over me.  I am a well-educated, caring woman and yet this reality is one thing that I cannot change.  Our little guy is so tiny, that he's now back in size three diapers.  The only thing that is large about him is the love that he radiates with his smile and giggles when we play games or he listens to his musical toys. 

When he used to love riding in the car, he now screams in terror.  Changing his diaper, brings the same results.  Fortunately, we have a physical medicine doctor who listens and started a new medicine that should help his brain quit sending signals that he will fall into the universe when he's on his back.  Keeping our fingers crossed that his world will not be so terrifying. 

At Christmas it's the season of miracles, and boy would we love to have a really big one about now.  Our little precious boy, who is a blessing to all, needs to be blessed with good health.  In the meantime, we do anything  that we can to make his world a happy place.

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.