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.