Not "Just a Birthmark"

While I am sure I have met the Coleman family at a previous Nevus Outreach Conference, I can't recall an introduction to my mind, however, their story grips my heart in a way few things ever have.  It's not an ache, it's a tight squeeze that will not let go until a tear rolls down my cheek and/or I have prayed long enough for God to release the grip and allow me to breathe again.

 I have learned from this family to never say "it's just a birthmark" again.

This boy has the same skin condition as my daughter. When this boy was the age my daughter will be turning in a few days, his nevus was diagnosed as having Melanoma. His nevus, to the best of my knowledge, was similar in placement, size and color to that of my daughter. They tried removing it. Almost 5 years ago. And each time they did, the results came back: "the margin is not clear". So they would remove more.  As far as I understand anyway. And this boy has been seen by the best cancer research centers in the United States. And this boy has had every kind of cancer treatment, both traditional and experimental that his family and doctors can find. And this boy is now considered incurable by all his doctors. And his family has met with the funeral home planners. As he sits and looks out his window at all the community members helping to complete the garden in his family's backyard so that he will have a peaceful place to sit in his final days and that his family may have a peaceful place to go to remember the best times and be at peace, once he is gone. This boy has amazing insight for a boy of only 13 years.
 His name is Evan.
 And we are praying for him, and for his family.
If you would like to follow Evan's story, read the history or pray along with us, please visit the blog his dad, Paul, writes here.

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She is a Person

Have you met my daughter? I have 3 kids, but today I'd like to tell you about "Bug". She is turning 8, going on 18 =) She is beautiful, intelligent, compassionate, sensitive, strong... and I could go on!  She is going into grade 3 and is a very strong reader who also loves to write. She writes stories and has a few pen-pals -- yes the old fashioned kind, she loves it!  She gets her feelings hurt by friends, like all girls her age but cares for those who need a friend and will always be there when her friends come back to her. She loves her little brother and gets annoyed by her little sister. She likes helping and earning money. She wants to be a teacher or a doctor or a Teacher OF Doctors when she grows up!!! She is smart and determined! She hates running and sports mostly but loves gymnastics and is always willing to help me with almost anything. She wants to learn how to sew because that is what I do. Have I mentioned she is beautiful????

Oh ya, and, she has a Nevus.... It really has no impact on her life AT ALL except for when IT gets hurt or during 1 week every 2 years. We just got home from the Biennial  Nevus Outreach conference in Dallas, Texas!!!! We learned about the progress in RESEARCH which YOU can help FUND if you desire (see website in link) and, and, and....... there are NO WORDS for what these conferences are/do! We met new families and gave them hope, we learned from scientists, doctors, surgeons and more experienced families to give US hope..... We laughed. We cried. We hugged. We learned. We taught. We connected. We hugged. We learned. We cried. We. Will. Go. Back. We must. This was the first year where Bug was very overwhelmed by all the focus on her 'spots' because at home, she is normal. At home there is little talk and no focus on the rare 'disease' our amazing daughter has.... because all the focus is on the amazing person she is becoming. completely unrelated to her spots.  And when she got overwhelmed and started getting angry and crying and saying she would never go back (GASP!), what did we, her parents do? Well, she has heard it all from me before and doesn't want to hear it again.... so I tracked down one of the 105 other nevus owners in our midst! At one point an amazing Adult and later, a very understanding Teen to sit and talk with HER. Not with me. I left the room. Yep. I love and trust these people with one of the most precious things in my world, because she is part of their world and frankly, I'm not. I love her to pieces and I have learned as much as I can from doctors and others in 8 years, but I will NEVER know what it feels like to BE her. I am SO THANKFUL that we found Nevus Outreach and are able to go to these conference and be connected with other people who know what it is like and can help her understand herself.

So next time you see us out and about... ask Bug about her latest story.... or how many chapter books she has read so far this summer break. Afterall, she is a person. A kid, like yours.... with a little extra beauty ;-)