Twenty years of grafting

Twenty years ago, I was a new grad OT and began my career working at an outpatient rehabilitation center. I had done one of my internships there, and loved working with both adult and pediatric patients who had neurological or oncology diagnoses. It wasn't too long into my work when I was assigned to see a 9 year old who had been diagnosed with a brain tumor. She had sustained treatment, and it had taken its toll on her little body. Since we had a therapeutic pool, her doctors thought maybe this would give her some relief from the pain she constantly felt. I couldn't wait to get started with her, and at the time had no idea how she would impact my life so profoundly. I looked at her therapy holistically. We would make it fun at all times. I would help her to live life to the fullest, while treating not only her physical needs, but her emotional needs as well. I had no idea that what I was doing for sweet Sarah, was a form of palliative care. It is the type of care I believe all children with life threatening conditions deserve.

Going to China in November opened my eyes to the reality that the sickest of orphans are often left to suffer and die alone. There is very little helping them to live life to the fullest as they live out their final days. I came home especially touched by baby Hope, and what I realized was that my ultimate prayer for her was that she could live life to the fullest, and not die alone. I literally said those words to Dr Jonas, the head of the liver transplant team at Children's Hospital Boston. I explained to her that even if she were too sick for transplant, I didn't want her to suffer and die alone. I so wanted to be the one to be with her in her final days, and became haunted by the thought of her suffering and being alone. But God. God knew this and had a plan. Little Hope would travel to Henan to be with Scarlet and be comforted. She would be played with. She would be held for hours on end. She would be adored and loved. Her pain and symptoms would be managed, just as I had prayed. She's not alone, and is living life to the fullest, just like Sarah did.

I am in awe of how God has been working on His plan all this time. Starting with Sarah and including other babies and young children with terminal illnesses who I have had the privilege of working with over the past 20 years. All directing me to this moment. I know what is needed, and what should be done. I have been prepared by an awesome God who has gently guided me, given me the connections in China who trust me, and enabled knowledge with experience to continue my work there.

As I consider the magnitude of this unfolding, I cannot help but think of the children who are waiting. Who are, at this very minute, suffering and alone. There has to be a better way. I know there is a better way. It's time to make a difference. Children like baby Hope deserve it.