I can't even begin to tell you what the past few weeks have been like…there truly are no words to describe it.
At times we have a peace about Lucy dying that surpasses all understanding.
Other times, I can honestly tell you that this experience equates to the worst human torture.
Waiting for and watching your sick child die…it's indescribable heartbreak!
How are we doing? That's a loaded question!
We are trying our best to live in the moment. We are loving our girl with ALL of our hearts. Thinking about the future is painful, living in the past is too, but being present is something that we can do. We have been and continue to be surrounded with love from family, friends, doctors and nurses - whom we affectionately refer to as or "medical family", and by people we have never met but whose lives have been changed just from hearing about our special family, our special girl. We could never do this alone, and are so very very grateful that we don't have to.
Despite all of the medical complexities, increase in pain, and overall physical decline, we have had some amazing moments during the past two weeks in which we have seen our girl sparkle and shine in ways we haven't seen in months. Our medical team described these moments to us as being spurred by a euphoria due to an altered state of body chemistry. They refer to them as "golden moments" or gifts that a dying person gives to those they love before the die. Whatever the cause, we will be forever grateful for these moments.
The decisions that we have made throughout Lucy's life have helped to determine how long or short her time here on this earth would be, but ultimately it has always been in God's hands. He's known from the moment she was created just how her life would end here on earth and when her eternal life would begin. "All the days ordained for me were written in your book before one of them came to be." (Psalm 139:16)
The past few weeks and the days or weeks ahead are the definition of waiting on God's timing...we are waiting on Him.