Sweet Chloe...

The last few days have been particularly difficult as we say goodbye to precious Chloe Lee Jones.  This precious little angel spent all of her days fighting to survive, her entire 3 1/2 months were spent in a hospital with her mommy and daddy by her side.  I am having a difficult time trying to understand why her life and the lives of so many is one of intense suffering, it just does not seem right, it does not seem fair.  Why on earth would a child be brought into this world with no hope?

For a living, I am first and foremost a mom, a mom who happens to take pictures.  I capture all of the wiggles and giggles...the pure joy of what childhood is supposed to be.  There is no greater joy for me than to see the innocence and the purity in their smiles.  I truly love what I do and I love children.

Maybe that is why I am struggling so.  Maybe this is why I am finding myself so angry.

I really wanted to post something sweet and special for Chloe, but the reality is I just really cannot find the words.  What can I possibly say that will make this better?  Nothing.  A baby is gone and her mommy and daddy are left with only memories.

What I will say is this...it is not over...

I hope that we can all continue to fight and finally put an end to EB and to all of the pain and suffering that it brings.  Please in honor of Chloe, all of the EB angels and those who still face this disorder every day, tell at least one person about EB, post something on your wall, do whatever it takes to spread awareness and be their voice.  Do not give up, they need us to fight!  We can be the change!

Rare Disease Day USA

Today, February 29th is Rare Disease Day.  Please let your voice be heard and be a voice for all of those who cannot speak.  Visit this link to support Rare Disease day and send President Obama, Members of Congress and other elected officials an important message.

http://rarediseaseday.us/take-action-now/handprints-on-the-hill/

Alone we are rare, together we are strong.

 

Hope and Heartbreak...

It is late tonight and I have been thinking about writing this post ever since I heard the news...

It was a story of hope for a precious little boy living in a group home in Washington state, a little boy name Seth.  Seth had never known a mother's love for he had spent his entire life in a group home. He was forced to face his EB alone, never having a mommy to comfort him and hold him.  Seth suffered from a severe form of  EB and unfortunately he did not receive the consistent care that someone with EB needs.  This lack of care left him confined to a wheelchair in excruciating pain alone and scared.  No one to tell him it would be okay, no one to wipe his tears.

This was all to change for Seth, for there was a loving family waiting for him.  The Knuth's already knew the challenges that EB presented for they had already adopted an amazing little boy Charlie who has EB.  They knew of all of the fears and anxiety that Seth faced daily and they knew the care and love that he so desperately needed.  Without ever meeting him, they fell in love and knew that they had to "Bring Seth Home".   It did not take long after Trish's announcement of the pending adoption that a group of amazing volunteers began working endless hours to come together and help the Knuth's; to help Seth.  People came together to help save this precious little angel, so that he may know an incredible love. 

Trisha was finally able to fly out to meet her son in February.  She spent countless hours playing, reading, just talking to Seth and loving him like only a mommy could.  I can only imagine how powerful this was for both of them.  For the first time Seth felt safe; he felt loved. And he was, the thought of leaving him was unbearable to Trish, he needed her.  She reassured him that she would be back, giving him her EB butterfly necklace to keep safe until she returned.

Unfortunately Seth became very ill after she left and as soon as she returned home, she found herself back on a plane to Washington.  When she arrived, Seth was incredibly sick and weak.  Trish stayed by his side and told him of all of the wonderful people building his bedroom and how all of these people who had never met him loved him so dearly; all of the lives he had already touched including the family whom he had not met.  His poor little body had fought so hard for his entire six years and it was just too tired.  Sadly, with his mommy by his side, her head on his, he faded away.

Even though Seth had spent years suffering alone, he was given an amazing gift in his last days.  The gift of a mother's love; the joy of a family he had not yet met and the comfort of knowing that he would never have to be alone again.

We will never know why Seth's journey had to end when it did, but his story, his legacy is far from over.  Seth will live on in the many hearts that he touched.  He will live on in what has become known as "Seth's Village" for somewhere there is a child whose life will be saved because of it; because of Seth.

Seth, although we did not get to meet, you will always be a very special Little Light.

Another Milestone...Happy 6 Months Quinn!

I have always said that blogging is not my forte, I am just not a writer...I take pictures...capture moments.  However there are those moments when I am touched in a way that compels me to want to share it some how.  Today was one of those days...

Some of you have been introduced to Quinn and you have been following her BMT journey via her Caring Bridge Page.  Well, I was fortunate enough to be able to visit her again today.  Seeing her sweet face is always a treat, but there is something else, when I am with Quinn, there is a calm about me, a peace that fills me.  It is an amazing feeling, one that I have only experienced with one other person, Tripp. I am not sure what it is or why it happens, I can only say it must be divine and there is nothing like it.

Yesterday was particularly special as I was able to be in the room when Quinn received "Healing Touch", an energy therapy in which practitioners use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health. (Find out more).  I had no idea how powerful that would be, as Quinn received this, I could feel it through my entire body.  Tears came to my eyes as I experienced an amazing release and felt incredibly uplifted.  It was truly an amazing experience.  I did not think that there was any possible way that anything could top that feeling until I was preparing to leave.  I approached her beautiful sleeping face bent over to whisper "I love you" and what happened totally moved me.  Quinn opened her eyes and gave me what appeared to be an intentional blink and a then a look that seemed to say "I love you too."  There is no doubt in my mind that is exactly what she was doing and I most certainly felt it!

Many have asked me how I can possibly bring myself  to do this, and I am always perplexed by that.  How can I not?  I am drawn to these children and it is something that my heart will not allow me to ignore.   Not only am I inspired and in awe of their courage and perseverance,  I am captivated by their shear being and I love them.  


Besides, take one look into these beautiful eyes and tell me you would not fight for her..

So with that, I want to say Happy SIX month birthday little lady!!  You continue to inspire those who know your story with your will and your courage. We continue to pray that you beat the odds!  You are a precious miracle and we see that every single day!!  I love you sweet girl!!

Marc and Mandy are amazing parents and their love for their daughter is truly beautiful.  They are so thankful for all of the prayers and support that they are getting from all over, that is all that they have ever really asked for.  However, they have some amazing ladies who are passionate about helping Quinn and they would love for you to join them and become part of Quinn's Butterfly Army,  They have had some beautiful shirts made up that are available for purchase with the proceeds going to the Quinn Seymour Benefit Account

If you have questions or would like to order a shirt, you can contact .  

QuinnsButterflyArmy@yahoo.com

Please continue to pray for Quinn as she fights the good fight!

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