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.)

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. 

PLATE SPINNER: NOT FOR THE FAINT OF HEART

This is a perfect illustration of my life, right now.  Each delicate plate represents an area of my life that is time consuming, energy sapping and anxiety producing. 

This week, we are going to meet with another set of doctors.  Hopefully, they will have answers to the questions we all don't even want to think of: What does our Grandlove have?  What is the treatment?  What is the impact on our Grandlove's future? 

My precious Grandlove's medical condition is the most important issue in my life.  The yet to be determined name of his condition and the frightening possibilities cause us to spend most of our attention in that direction.  While that is going on, however, we also have a few other issues that drain our resources.


Through no fault of his own, my spouse has lost his employment.  His kind heart and loyalty has been rewarded by the Board of Directors with a swift kick to the curb.  He was deeply hurt because he had brought the business from a rather insignificant non-profit to four times as many clients per week.  I honestly don't know how these supposedly "Christians" justify their actions.  There will be an answering time for them and I know that God is watching the classless, unappreciative people who used up my husband and then shoved him out the door.  They have all benefited from my husband's kindness and yet they don't care that our family now is scrambling to keep the roof over our heads.

Using the Internet has made the job search a bit easier, but one thing remains the same.  Unemployed people have a much shorter "wait time" than the possible employer.  Employers don't hurry and yet each day that goes by is another day that drains our meager bank account.  Our moods have stayed hopeful and we encourage each other in the quest for patience.  Sometimes, I keep the plate spinning and sometimes Hubby does.  When we both become a bit tired, our Heart has an encouraging word and the plate becomes steadily spinning, once again.

When a job is acquired, we are moving to be closer to our Heart and her precious son.  She needs us closer and we need to be closer to help as much as possible.  Whenever we talk of moving, I think of all the junk that has to be done.  Another plate on a wobbly pole.

My dear friends have been very supportive throughout this and I do appreciate them more than my meager words could ever convey.

1/11/11: TODAY WE START OUR JOURNEY

Today is the day of our new journey. Our sweet Grandlove will be visited by some people who will ask questions; answer questions; provide information and help us to begin the next phase of our journey.  I am a bit overwhelmed by the endless possibilities as the clock slows down.  Too many Internet searches have left me breathless in my anxiety.  Too many scary possible answers to all the questions we don't even know how to phrase.  All we know is that our precious baby is a wonder to us; his mere presence makes our hearts sing; his laughter stops our fears and his soft, tender touch reminds us of how fragile life truly is.  We are a team who is ready to be the loving support for this little guy.  His world will be challenging, but our team effort will be up for the task.  Keep us in your prayers as we go forward.

ONE DAY AT A TIME: MAKE IT A MASTERPIECE

A very dear lady told me the other day the way she gets through the uncertainities of life is by this simple motto:
"One day at a time and make it a masterpiece". 

So, I try to remember these words as life keeps challenging me.  I don't know what tomorrow will bring, but with the reassurance that I am not in this alone, helps to fortify me.