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Today a little butterfly flew by me.
I thought to myself where have you been little butterfly.
You come into this world as a cocoon all by yourself and blossom into
this beautiful butterfly and fly off to see the world.
What you don’t realize little butterfly as you flutter through your days
is how you touch those around you in your soft gentle way.
You don’t even realize the wonder and awe you create around you.
He fluttered his wings toward me as if he was waving good-by as he
headed towards the horizon.
He looked very happy and content as he went on her way, as if to say
to me “Don’t worry I’ll be okay”.
I was sad to see him go for he had touched my heart in such a way that
I knew my life would never be the same.
He had left an imprint of all the beauty life has to offer.
I knew each time I looked at another butterfly or horizon I would
remember our moment in time when it was only him and I.
I knew I would be a better person all because this little butterfly flew by
me one bright sunny day.

© Barbara Ann Rogers

Tripp 2Interesting how we get what we need just when we need it, little signs that come just at the right time.  I had been thinking long and hard about writing a post to honor Tripp Roth today.  The words were not coming to me as easily as I had hoped and I was totally unprepared how emotional I would be trying to write about him today.  I thought I would search for a quote to help me get started and so I did a quick Google search, hit enter and went to get my coffee.  This is what was waiting for me when I got back to my desk.  As I read, the tears came to my eyes, for I knew that he was speaking to me and guiding me as he did so many times during his life.  It was exactly what I needed and exactly the right time.

Many of us search our whole lives, seeking our purpose, and I was blessed to haveOct 21 2011_0262BW found it in the incredible life of a little boy.  It was again what I needed right at the right moment, a simple mouse click on a link and I was forever changed.  It was a gift that humbles me each and everyday.  I know that I am a better person today because of him and everything I do is because he came into my life and changed it.  He gave me the purpose I had so long been seeking.

I am only one of many who has been impacted in some way by Tripp’s life.  Through his suffering, he taught many about courage and faith.  Despite the challenges of life with Epidermolysis Bullosa, he taught all about love and gave people hope.  He has left a tremendous imprint on the hearts of many, and even in his absence, he is changing lives through his story.

Tripp Roth 12-2 thru 12-3-2011 (36)A year ago today, the news of Tripp’s passing shattered many of us.  The loss of this beautiful spirit rocked the EB community and the entire group of supporters who had been following his journey and praying for him.  I am one of many who never wanted him to leave and now he was gone…or is he?

I don’t think so, I think that he lives on in all of the work that we do each and every day fighting for those with EB.  I think that he continuously graces us with his spirit, inspiring us to continue to advocate and fight…to be a voice to all of those who suffer.

Today more people know about Epidermolysis Bullosa than ever before. There are advocates across the country who are raising awareness, people who are dedicated to finding a cure and end the needless suffering.  This is not a coincidence, it is the spirit of one very special butterfly guiding us on a path of compassion and love; helping us to be better people.

Today my heart is with Courtney.  So many of us have been inspired by her unconditional love, her unwavering strength and commitment to her son.  Courtney,  thank you for sharing Tripp with the world, for trusting us to love him too.  Thank you for facing criticism and negativity so that we could experience the many blessings and the joy he brought.  Opening yourself up to us all so that we could share this journey with you.  I love you today and always my sweet friend.  Please know that Tripp is our hearts always; his spirit still shines.

Tripp Roth 10-21-2011 (49)In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.  – an excerpt from The Brave Little Soul by John Alessi