October 5 Update

We can tell it's time to update this site because of text messages asking "how's it going" (phishing for an update, which is fine :-)  Yesterday Madison's childhood friend Erin (who now lives in Colorado) visited, and they went out and had pedicures. Today Erin and Madison went to Zuma beach. So how is Madison anyway? Determined while respectful, Madison asked "would it be okay if Erin and I go to the beach?" I think both of us knew she wouldn't -not- go, which is fine... that is Madison. 

Madison's dad Chris received an email that was forwarded from his aunt Sara from a distant relative, King K. Jones. King is a retired minister who lives in Seattle, and Madison's 1st cousin three times removed. King has been following this site and offered his observation... perhaps a revelation. So I say to King K. Jones, my 1st cousin twice removed... thank you for this gift in italics below (and wow).

Love from all of the Jones family. 

“As I have tried to follow Madison’s experiences from a distance through her journal, it has seemed to me there have been times of encouragement from a visit to the beach, snuggles with her dog, attendance at church, some relative control of her pain, to the grand gathering of family and friends, and a weekend at the beach with her church family.  Of course, all these encouragements are set within the larger reality she has so bravely embraced.  I am sure, however, she and others within the family are grateful for every small victory.
 
Returning to the grand gathering, I would add a comment.  Madison, as she reflected on the experience, had several words which came to her to describe it.  One thought (or word) which came to me as an outside observer was “revelation.”
 
Such a very large group of family and friends coming together in one place at one moment of time was a “revelation” – a revelation of the impact she has made on others.  Most people, regardless of the length of their lives, have not made such an impact on others.  What a legacy to leave for all whose lives have been touched by her!  Selfishly we wish her life might have better prospects for the future, but it is gratifying that she has been such a wonderful influence on so many in such a short period of time.  And I join with her, her family, and her friends in expressing gratitude for each day of that future which becomes a reality.”