Let us run the race

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles.  And let us run with perseverance the race marked out for us. – Hebrews 12:1

I am sitting here in awe of the day…of the year, really.  It is not always easy to run the race set before us, but now more than ever, I appreciate the metaphor.  Our Thanksgiving Day fun run to benefit The Foundation for Prader-Willi Research is drawing closer, and the article that landed on my front porch today from our local paper made it feel more real than ever.  I am so proud to be a part of it…to see the hopes and dreams of two mamas who connected over a common struggle materialize and gain momentum.  But as we were being interviewed for the article, I realized that we share something much bigger, much broader than PWS.  It goes beyond that community and into every home, every heart.

Not many people live with PWS, but all of us are running our own races and fighting our own battles.  In my heart of hearts, I don’t even think mine is harder than others.  It’s just different.  I have friends fighting cancer, unemployment, moves, losses…life can be hard.  But it is in those very challenges that we see most clearly the cloud of witnesses.  We rally for each other in our vulnerability and lean into the endless supply of love that pours over us.

But more than anything, the beauty of this passage to me is that it invites us to run unhindered…reminding us that the race is already marked out for us and littered with blessings and help.  When we become entangled in fear or exhaustion, we draw strength from hope and prayer, but also from friends, family, neighbors, and kind strangers.  It is remarkable and exciting and contagious!

While I want so much for this race to raise awareness and funds to help us find treatment for PWS (because, oh my goodness, it feels so close!!), what I really want most is for us to join forces in celebration…to bear witness to each other’s struggles and joys, and to run with perseverance together.  Not just on Thanksgiving, but everyday.


Happy birthday, Mom

I am so glad you are here…It helps me to realize how beautiful my world is. – Rilke

Today is my mom’s 60th birthday, and to say I am thankful for her is an understatement. I am amazed by her…by her kindness, her courage, her creativity, her patience. She just exudes love. I was recently going through my old journals from after Eliza’s birth and came across this one. It brought me back to those early days and brought me to tears in the process. Tears for the grieving mama writing it just over a year ago…but mostly tears of gratitude for the mama I get the privilege to call my own. I am so glad she is here, reminding me always how beautiful my world is and making it more beautiful all the time for her presence in it.


Sunday, August 10, 2014

 I don’t know where to begin exactly…so much has happened since I last wrote, and I’m kicking myself for not capturing the moments as they were happening – finding out we would be discharged last Thursday, the last day and night spent there in the NICU knowing everything was about to change in a big way, the rollercoaster of emotions that first night home, and now this latest rupture: the departure of my mom.  My mom who has been by my side every day of this journey since before it even began.  My mom, who encouraged me through contractions and held my leg through every push.  My mom, who stood beside me as we saw Derrick and a nurse walk ominously down the recovery hall without that baby.  My mom, who became a single parent all over again raising my other baby girl, cuddling the new one, and comforting her own daughter as I got the diagnosis. She was there in the room. She was there for all of it.  Every important moment was tinted by the soft light of her enduring presence, hope, and love.  She changed everything for me.  For all of us, I think.  I know she created a bond with both girls that is special…one that will last forever.  I don’t know how she stayed so calm, so positive and patient.  I only know I am fairly certain that I couldn’t if I was her, and I know I couldn’t without her.  She allowed me to grieve without pitying or downplaying, and for the life of me, I don’t know how.  I only know I am grateful.  Grateful beyond words.  It is an utterance only the heart can make and the Spirit can understand.