walking through the milestones…

October 2014…Mama and Courtney

One year ago, Jerry and I were walking our Courtney out of Georgetown University Hospital for the last time. Her seizures could no longer be controlled with medication, her liver and kidneys were under serious stress, she was having great difficulty gaining weight and her stomach and intestines were a mess. Her lungs were weak and scarred and she was in an overall physical decline. 


Jerry and I had spent hours talking with her Neuro team, her Pediatric team and other health professionals about how we could help her. We came to the stark realization that we had come to the end of her journey. She was tired. We were tired. Her body had fought for twenty-two years to stay with us and the end was approaching. 


I had prayed every day for twenty-two years, that when that time came, God would grant me the grace to face Courtney’s final moments here on earth. I prayed that I would have the help needed to care for her at home. I prayed that she would not be alone as she took her last breath. I prayed that our family would survive without our Sweet Sunshine here with us. 


Courtney was, without a doubt, the heart of our home. Our world was built around her and what she needed and how she was doing at any given time. She drove the daily schedule. If she was having a good day, everyone had a good day. If not, then she reminded us, through that, to pray for patience and peace, to trust God with the outcome of any given situation. 


One year ago today, I wept in a parking garage, knowing that my greatest fear in my life was going to become a reality. My daughter was going to die and I could not stop it. I knew in my head that God would take care of everything she needed, but my heart was breaking into tiny little pieces, never to be put back together in the same way again. The life I knew would never be the same. 


My little girl was going to leave me and I had no idea when or exactly how it was all going to go down. We always knew the day would come, but now that day was heading toward us like a speeding train and all I wanted was to squeeze every second out of joy that was left of Courtney’s life. 


So I did. 


I held her every day, sometimes all day. I sang to her, I prayed over her. I was determined that there would be no regrets with this very long good-bye. I did not want to look back and say “I wish I had…”. That would have been the greatest regret of my life and I have enough of those to add any more especially a doozy like this. 


God did not disappoint in writing the ending to Courtney’s story here on earth. That grace I begged for showed up in spades and her last moments were miraculous and beautiful and filled with peace. There are no regrets in regards to the care we could provide for Courtney and our time with her before God brought her home to Him. 


None. I praise God for that. It is truly a blessing.  


It has been eight months since I last held Courtney in my arms. They still feel so empty with the precious weight of her gone. I still miss her every moment of every day. I know she is gloriously happy and no longer in any pain or distress. Her resurrected body is full of endless strength and energy flitting about doing the work of her Beloved. 


I am at peace with that, but I still miss her. I will always miss her. 


My sadness and grief ebbs and flows as we walk through each milestone for the first time without her with us. Today, I felt her with me all day. I felt her loving me and encouraging me to embrace the changes that seem be arriving daily for our family. New opportunities to share her story and be a witness to the dignity and beauty of life. New opportunities to write about our experiences as we cared for her and loved her throughout her twenty-two years here. New beginnings for all three of us, as we learn to live without her. 

It’s been one year since we began the last chapter of Courtney’s life. I cried today when I saw the photos pop up on my computer in my Timehop. 


Oh that sweet face. Her smile. Her laughter. 


So much beauty. So much innocence. So much love. 


As summer ends and the seasons begin to change, I know that I will have to face several more milestones in the next few months before we reach the first anniversary of Courtney’s death on December 27. Jerry and I promised each other  that we would take each one as they came, working through the grief of that moment, however the Holy Spirit guides us to. 


Change is inevitable. 


As hard as it is to embrace at times, one day at a time is still the best way for me to comprehend it all. So, that’s what I will strive to do. 


One day at a time, one new challenge at a time, one milestone at a time.