I am the one who stifles her tears
I am the one who accepts the burdens she bears
I am the one who faces the night
I am the one who quiets her fright
I am the one who keeps plodding on
I am the one who believes in the dawn
I am the one because I must be the one
Other than I there is absolutely none,
Who can walk my walk and fight my fight
Who can overcome and further my plight
But in the midst of this darkness I am not alone
And the strength that I find, it comes from the throne
What is at the end of this road cannot be known
So I’ll just pray not my will, but Thine be done.
I wrote this poem nearly one year ago. Little did I know it would become my mantra as the road I walked grew longer and darker as the days and months went on. I was sitting in the Pediatric ICU at Denver Childrens hospital. My 11 year old daughter, who has a rare neurological disorder, was being treated for status epilepticus- a state of constant seizures. She was in status for around 36 hours and heavily sedated for the following 3 days. We had no idea what this would mean for her future. But nothing could have prepared us for what we discovered in the following months.
Allow me to tell you a little about our Lily. She is an absolute miracle. No one expected her to live. No one gave us any hope for her future. She remains a total mystery to her many doctors. She never follows any standard protocol for treatment and leaves everyone who cares for her hopelessly aware of their inability to figure her out. She is a rare beauty. She is a bright light in a dismal world. She loves purely and completely. She is stronger than any person I’ve ever encountered. She is my saving grace. Without her I would have been doomed to a life of self reliance and would be utterly and completely lost. She is a precious soul. And I count myself blessed to be her mother.
For reasons that are not fully understood, Lily now faces a terminal condition. There is no treatment to reverse what has occurred in her body. We have only our hope in our Heavenly Father. For the past 12 months Lily has required intensive care in the hospital every other month. With each hospitalization her condition has gotten progressively worse. The knowledge that the next illness she is afflicted by could take her life looms over us like a dark cloud. And yet our hope remains.
Our hope is not in a fairytale ending. Our hope is not in the light at the end of the tunnel. Our hope is in our God who is more than able to do above and beyond all that we can comprehend. Our hope is in the knowledge that He is a good and loving Father. Our hope is in His tender mercy. Our hope is in knowing that our child is fully healed whether we see it manifest on this side of eternity or the next.
Hope cannot be conditional on what we see and feel. There comes a day for every believer that is shrouded in darkness and filled with pain and confusion. When that day comes we each have a choice to make. To crumble or to believe that our God is who He says He is. Frank Titoni of Fast Forgiveness writes…..
One year later I am still walking the long dark road. But praise God that I do not walk alone. Without Him my legs would have given out a long time ago.
All my love,