Open letter to Misty VanderWeele

There are no words that will make sense on a day like today. No matter the context, they will fall empty. Words are unable to grasp the enormity of losing Luke and none big enough to tell the story of his life or of your lives together. From the moment you held him in your arms 21 years ago, full of hopes and dreams for the life he would have, to the day of his diagnosis, that day, when Duchenne, the most unwelcome of all words, would break down the door of your home, and your family. The well developed plans for the life you had planned would forever change.

Our children become our teachers, they show us the way. They smile and embrace the life they have and encourage us to become our very best selves. They teach us that dreams are not lost, just retrofitted. They teach us to aim high and that life will indeed be wonderful.

What a joy it was to see Luke sign his lease in August and move into his very own space, his smile said it all, and the upside down snowman at Thanksgiving and that beautiful photo of you, Jenna, and Luke at Thunderbird Falls on December 26. What an amazing life to celebrate and to remember.

Chris and Patrick have been gone for 18 years. I still stumble when I talk about them, the memories so precious and the sorrow still visible, especially to those who know me well. People would tell me 'grieving is a process' with specific stages, suggesting there is a beginning and an end. I have not found this to be the case, rather I think grief is a state that we learn to live with, that enables us to see the world in a different way and that helps us to recognize how blessed we are to have our sons and our daughters, how they have enriched our lives and taught us the definition of unconditional love.

We are all with you in your grief. We are thankful for all you do for all of us and we are blessed to have you. Wrap your arms around Jenna and feel the warmth of the Duchenne community.

The world breaks everyone and afterward many are strong in the broken places.

—Ernest Hemingway, A Farewell to Arms, 1929

Take good care, my strong friend. Luke is loved and sorely missed.

Pat Furlong, Founding President, CEO
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Comment by kimmy watters on January 25, 2013 at 11:19pm: dear misty i can not tell how sorry i am you been such inspiration to us all you are in my prayers this week. kimmy

Comment by danielle on January 21, 2013 at 9:25pm: i am so sorry misty. You are in my thoughts and my heart this week.

Comment by Lori Safford on January 21, 2013 at 8:28pm: Thank you Pat, for expressing what many of us are feeling today...I have gone through this day, hugging Ben and Sam just a little bit tighter, enjoying their laughter and watching their smiles just a little bit closer. Through you, Misty, we feel like we all knew Luke and our hearts are heavy today, wishing we could just wrap our arms around you. We may be many thousands of miles away, but our thoughts and prayers are right there with you. May God give you the comfort that only He can provide.

Comment by Moria McMillen on January 21, 2013 at 5:57pm: I feel so uncertain and halting.. Living out a normal Monday.. trying to imagine what is unfolding for you today.. But I know how very strong you are.. With everything I am I am trying to send you comfort and love.

Comment by Anna (Ankie) Groenewoud on January 21, 2013 at 5:41pm: Our biggest fear is losing our son,grandson to Duchenne Muscular Dystrophy.
As a grandmother with a 9 year old grandson with DMD we send your our warmest thoughts and prayers throughout this extremely sad time.Also I have been watching your videos and found them very helpful in trying to understand what life is like caring for a child with DMD.I hope that with Luke's spiritual guidance you will find the strength eventually to carry on the amazing support you provide to us parents,grandparents in this very challenging journey of DMD.God bless you and your family!!!!!! Anna

Comment by Allison & Whalen Kuller on January 21, 2013 at 5:11pm: Love to you, Misty. I don't have the words, but Pat said it perfectly. I will keep you all in my thoughts and prayers.

Allison