Sunday, April 8, 2012

Your Light Will Forever Shine...

Over the last 24 hours, I have cried, I have prayed, I have gotten angry and I have cried some more.  I have attempted to write a post and have walked away multiple times.  I am just lost, not knowing quite where to begin, not knowing what to say...I do not even know what to feel.  I am just plain struggling. I have searched my heart and tried to come up with something that could adequately express my sorrow, but the only thing that seems to come are tears.  It was not supposed to end this way...

Quinn came into my life late in the fall and I had the honor of meeting her in December, shortly after she received her transplant.  I will never forget the first time I saw her precious face and those stunning eyes.  I was immediately captivated by her and felt an amazing serenity in her presence.  I was overcome with a profound emotion that I really could not explain.  I spent quite a bit of time capturing her beautiful face, the light just emanated from her...she was something incredibly special.  I could look at her pictures over and over and I have.  I left that day once again being touched by a precious little soul and I again was changed.

I am not sure what it was about Quinn that caused me to feel an immediate connection with her, but when I saw her again, it became clear to me that it was something divine and it was meant to be.  What I felt the last time I was with her is something that will last in my mind forever.  Even though she could not speak, her eyes told me so much and I will never forget.  I love her, that is something that will never change.  She has touched me and has become a part of who I am.

I would often dream of Quinn and I playing in a park....enjoying the warmth of the sun and the lushness of the grass.  I believed it would happen and I wanted so badly for that.  Maybe that is why the last day has been such a struggle.  I believed in her miracle, I wanted her miracle, but the miracle that I wanted was not the same miracle that God intended.  That is often times such a difficult thing to accept.  Her purpose was full-filled and it was time to go despite what the rest of us wanted.

No matter how hard I tried to take comfort in the fact that she was no longer in pain and that she was safe in the heavens, I could not shake my sadness.  Last night I went to bed sad, confused and angry.  This morning, I did not want to face the day, I wanted to go back to before that phone call, back to when I was so full of hope.  I needed to know that she was okay, I needed to know she was still with me in some way.  For those of you who know me, you know where my heart is and why I am finding this so difficult

Then this morning at mass as we sang the opening song, I was again overwhelmed with emotion and consumed with sorrow.  I kept looking down trying to compose myself and when I looked up I could not believe what I saw...

A single pink butterfly on the cross of the Risen Lord.  Almost instantly I was overcome with a feeling of peace, I became completely calm.  My tears of sorrow became tears of gladness in a way. I knew right then and there that Quinn was with me...I have absolutely no doubt whatsoever that she was shining her light and bringing me that comfort that I so desperately needed.  She was giving me the sign that I needed to see; that she was okay and she would always be with us....she never really left.  Her beautiful spirit lives on in all of those who were touched my her...that can never die.

To my sweet friends, Marc and are AMAZING parents and you have given Quinn an incredible gift, the gift of sweet and unconditional love.  You brought tremendous joy into her life; she knew no sorrow, only joy.  My heart is aching for you, for I know that life without her will be difficult, but I also know that you have incredible strength and faith.  Quinn's light will continue to shine down upon you and light your way; guide you as you heal.  I love you both more than I can ever say.  I am incredibly grateful and honored to have been a part of her journey,  Thank you so much for sharing her with me and allowing me to love her.  I will never be able to thank you enough for the many ways my soul has been lifted by her...

Quinn, sweet girl, I love you and I always will.
I promise you that I will fight even harder and I will not give up...not now, not ever.

Just a quick not to everyone who has been so understanding and has left such incredibly sweet messages...I am so humbled by your kind words.  I know that Quinn was not my child, but I loved her nonetheless and her loss has been a painful one. It is going to take time to heal and I am so grateful to the entire EB community for understanding that pain and supporting me.  I love you all so very dearly and I do consider you a very special family, thank you for allowing me to be a part of such an incredible community.


  1. God bless you Christie for your wonderful tribute to our dear Quinn. Your passion to find a cure for EB is inspiring...I'm forever continuing to pray for a cure. Rest in peace dear Quinn. Rest in peace.

  2. Christie, your words could not be anymore beautiful :'( The passion, the love, support and the countless other things you do for the EB families is beyond just being compassionate. I believe that this is your gift. God gives us all gifts and he has definitely given you the gift to be able to do all these amazing things you do. You are such a blessing to soo many. Thank you for sharing your wonderful photos that allow other's like me to see babies like Quinn, Chloe and the countless other butterflies that suffer everyday yet fight with the strength of babies born completely healthy! I have four boys and until a little over a month ago when by fate I stumbled upon the butterfly fund I had never heard of EB well immediately I was without words overcome with this desire this pull in my soul to keep reading, researching and praying to God how can I help. I started to read just elephants and butterflies I just loved everything about Chloe,Megan and Travis their faith their love I prayed and I prayed like never before I claimed God was going to heal Chloe completely when I learned of her passing I to was devastated angry confused! It also gave me even more of a desire to help raise awareness anyway I could. Quinn Seymour and her beautiful family was my second EB family to fill my soul with great love and compassion I began to read Marc's posts on caring bridge his writings where always so full of strength, faith, thankfulness and love. I am again left feeling helpless wishing and praying for their comfort in so much suffering and as I read your blog I was again overwhelmed at how you all have such great faith even in the darkest of hours. I had just asked the butterfly fund yesterday morning if Quinn's shirts were still available later to recieve the devastating email from caringbridge:'( I immediately for some reason thought of you being there in Minnesota with baby Jax. I didn't know how close you were to Quinn at that time I only knew how much you do for this EB community and It crushed me to realize your happy moment with Jackson and his family was ended with such great sorrow. I am so sorry for the unimaginable grief you and the Seymour's are having to endure. I'm sorry for rambling on. I just want you to know that you are such a blessing to so many! I pray God will always be with you blessing all the things you continue to do. Rejuvenating your strength and passion with every waking morning. I hope to be a useful tool in the fight against EB. However the Lord sees fit.
    With my deepest sympathy
    Janette Schick ~The butterflies friend

  3. Dear Sweet Christie,
    There are no words to describe the beauty of your words.

  4. I love you, Christie. I love your pure and loving heart...your strong and unwavering soul. I love your dedication and inspiration. I am blessed to know you. Take care of yourself and if you ever need me, Im only a call away!!! God puts special people where they are needed, and although you feel empty and sad, the impact that your love has on the Seymour's in their time of need is supernatural. Peace and Love.... Melissa Curtis

  5. Kristie, you make all of us feel a bit better by your loving words. Take care of yourself. Hugs/Edmay

  6. May God always be with these little angels. They are in the arms of Love and Light. I do pray the cure for this disease is found very soon so that no more babies or families suffer from it.