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.