Goodbye Little Light...

A butterfly lights beside us like a sunbeam
And for a brief moment its glory
and beauty belong to our world
But then it flies again
And though we wish it could have stayed...
We feel lucky to have seen it.

(Graphic Courtesy of Kristina Wyatt http://www.ebawareness.com/)

It is amazing how so few words can speak what is in one's heart.  This weekend I spent a great deal of time reflecting and trying to understand the waves of emotions I was experiencing. I was sad, confused, angry, you name it.  Despite knowing that it was coming, I was really unprepared for how this would affect me.  I just never realized how it would hit me when Tripp would have to go.  I have to admit, I feel a bit selfish.  Even though I know he is at peace, a peace I prayed for, I cannot help but wish he could have stayed.  I know that I will always feel his presence, for he has touched my heart in countless ways.  However, that really does not make goodbye any easier.

I wish I could have told him the many ways he made my life better, how his light came into my life and lit the path for me.  I wish I would have been able to share with him the ways that his courage and strength inspired me and so many others; to share with him all of the ways that he has changed this world, how amazing he and his impact truly were. I kept thinking of the last time I got to say goodbye and how I promised him that I would never give up.  I pray so hard that he heard me, that he understood and that he knew I would keep that promise.  I remember kissing his forehead knowing deep down inside it would probably be the last time.

Still I was not prepared for this...how can you be? I know however that eventually, time will heal and people will continue on with their lives, candle vigils will cease and posts will start to dwindle.  Things will go back to "normal" for the rest of the world and yet Courtney's world will remain upside down as she tries to navigate life without Tripp.  I cannot begin to imagine what that must feel like and it makes my heart hurt for her in so many ways. So often we focus on the dying and forget about the living.  Tripp's suffering has ended and he is finally has much deserved peace, Courtney's pain is just begininng and she needs our support as much now as she did before.  She has been so generous in allowing us to be a part of Tripp's journey, I hope that we can continue to be generous in our prayers and support helping her as she finds her way to a new normal.  This period of transition will not be easy no matter how strong she is...she has dedicated her entire life to Tripp.  She devoted every moment to his care and now that is gone and she is left feeling lost not knowing what to do.  Tripp is safe now; it is his mommy who needs us. So please pray for her as you have prayed for Tripp.  Help her to see Tripp's spirit each day so that her path can be lit with his light.

Tripp, once again, I thank you for shining your light for all of us and for making the world a better place.  Courtney I am blessed with your friendship and I love you dearly.  Thank you for courageously sharing Tripp with all of us and allowing us to love him and be graced with his spirit.

Donations may be made in Tripp's name to debra.org, or puckfund.org

 

For this Tripp, I thank you...

I have spent the better half of the day in tears...I did my best to distract myself, but eventually my thoughts kept coming back to a little boy wrapped in bandages lying in the arms of his mommy...enduring a pain that none of us can imagine.   The pain of EB destroying the little he has left physically and mentally.  I have come to the realization that what I have been dreading since falling in love with this sweet boy was becoming a reality.  And although I do not understand the reason behind his suffering, I do know this, it has all been for us. For we have benefited so greatly from his being.
Tripp Roth has touched the lives of so many and he has brought tremendous change to the world.  He has captured the hearts of thousands with his amazing courage, beautiful personality and his glorious spirit.  Through him we have opened our hearts and learned to be more compassionate and kind.  He has taught us about unconditional love and faith...some of the greatest lessons I have ever learned.  Tripp has given me a purpose, he has inspired me to be a part of something bigger than myself and to try and make a difference. He touched me in such a way that I knew I was forever changed, and there was no going back.  There is something else...aside from teaching me these important lessons, he has also given me one of the greatest gifts that I have ever known, courage.  That may sound odd to some of you, but it is so very true.  Before Tripp, I lacked the confidence. As hard as it is for me to admit, I was afraid...always worried about what others would think, afraid I would fail.  I never took chances.  But, some how Tripp has given me the courage to fight for something that I beleive in without worrying about being judged or ridiculed.  He has given the me courage to speak up and be a voice for all of those who cannot speak.  The courage to make try to make a difference and touch the lives of others.
So, now here I sit trying to come up with something poignant and eloquent to say, but my emotions get the best of me and I have nothing...except, thank you.  Thank you Tripp for shining your light and blessing me with your beautiful spirit.  You have been such an amazing gift and I am so incredibly grateful.  I will never forget how you have touched my life and brought such a beautiful change.  I will forever remember your smile and your spirit.  I love you,  I am honored to know you and to have been a small part of this journey. 

Sweet boy, I am praying for your comfort and peace....as much as I hate to see you go, I know that you deserve to finally be free from your pain and agony.  I love you so very much and I promise you that I will never forget what you have taught me and I will continue to spread your light where ever I go.  I will not allow your suffering to be in vain, I will not stop fighting for you until EB is no more. 

I think this excerpt says it best:

...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.

The heartbreak of EB

This week I found out that despite her tremendous will and fight, Quinn had to be intubated.  I cannot begin to imagine the feelings of desperation and defeat that must be felt when you put everything you have into saving your daughter and protecting her only to have to watch her continue to struggle.  I have learned that as EB ravages the bodies of these precious children, it also does a number on the minds and hearts of the parents.  Whenever there may be a glimmer of hope, it is often shattered, leaving the parents feeling broken and lost.  The emotional toll it takes is incredible...I have seen it first hand.  The amount of strength and courage required to face the daily challenges and the pain not only of the child, but of their parents is something that I cannot even put into words.  Please continue to pray for Quinn and all of the EB babies.

Butterflies are a breath of beauty fluttering by, they are mystery chronicled upon wing, they bring forth the grace and wonder of this world to our eyes everyday
~K. D’Angelo

Quinn is one among many who must endure the ugliness of EB.  You can find out more at EB Part of the Cure  Please help to help all the children like Quinn, give them hope, be their voice.  Let 2012 be the year for the cure!

Please follow Quinn's story at Quinn's Caring Bridge page