Wednesday, February 1, 2012


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. 


  1. Truth, did you ever connect with Gina Cousineau on facebook or real life? Her son had adrenoleukodystrophy (I think that's the right name), and she is now a hard-working advocate in the field of blood donation/bone-marrow transplant. If you want to speak to someone who understands more than most, she would be a great resource. Sending prayers for you to receive all that you, Grandlove and your Heart need, each moment.

  2. I just saw your comment on my blog and want to thank you for all of your support It really means a lot to me.
    I don't know Heart except on FB and she really is remarkable she is always posting uplifting statuses and checking on me and others to see how we are doing. She could be feeling sorry for herself and not care about how others are doing and nobody would blame her for that. But she is a much better person then that. She is really someone special just like her mom
    Loves you and your little Grandlove ♥