Five weeks ago we received little Hope. Thirty five days of a tiny baby girl who collects hearts are now forever part of our family. The changes we have seen in her are nothing short of miraculous as she goes about living despite a past that most people could not have endured. There are times when I honestly cannot imagine being in her situation and have so much to learn from this little one.
I have been fortunate to become part of a group of families who are raising children with liver failure. As I read the messages and learn of the symptoms these children have to struggle through, it is so apparent that these children NEED their families. Having families are what enable them to keep going. Having families are what allow them to survive. Having families are what bring them comfort in the face of a horrible illness. These children feel sick, are poked and prodded, and face tests and hospitalizations. They are prone to anxiety and trauma reactions. They have distended abdomens and some have pain or a hard time breathing. They get fevers and are prone to all sorts of infections. They can have life threatening bleeding in their gastrointestinal tract. They can become anemic. They are unable to absorb nutrients and vitamins from their own bodies. Their kidneys can begin to fail. They have horrible internal itching, which one of my dearest friends (who not coincidentally is an adult liver doctor) says has caused some adults patients to end their own lives. This is what happens with liver failure. Liver failure is what my sweet baby Hope lives with each and every day. And she has endured liver failure, up until 35 days ago, as an orphan. And orphan who had no one to consistently hold her as she feels horribly itchy or sick to her stomach. An orphan who has had no one to feed her every few hours due to the enormous pressure that her huge liver and spleen place on her stomach. An orphan who became so malnourished that she had undetectable levels of vitamin A in her bloodstream. An orphan who, despite living the past 11 months of her life alone lying on her back in a crib, hadn't given up that others might be willing to take a chance on her. An orphan, who deserved to have a family just like the other children I have read about who are fighting liver failure. An orphan, who 35 days ago became an orphan no longer.
Hope has had two appointments with Dr Jonas who is the liver doctor (hepatologist) in charge of the liver failure and transplant program. I met with Dr Jonas back in December about Hope when we were trying to bring her here to the US on an emergency medical visa. I liked her right away during that December meeting, when she spoke to me for over 45 minutes along with Dr Lang, our cardiologist. Both of these amazing MD's had chosen to spend their own, unbillable time with me. Together, they explained some basics about liver failure and the technicalities of medical visas. They both suggested that adoption would be baby Hope's hope. At the first of the two appointments Hope has had since arriving home, it was clear that my baby girl's story was already known. Several doctors and nurses from the liver transplant program had come to our room just to say congratulations and meet little Hope. One had shared that she "knew" Hope from her photos that Dr Jonas had shared to their team. It was clear to me at that initial appointment that my daughter would receive the best care from the best providers who truly have her best interests at heart. And the mercies haven't stopped there. Not only has Hope begun receiving the medical and nutritional support at Children's Hospital Boston that she has so desperately needed, my entire family has been receiving physical and emotional support beyond my wildest imagination. Our local pediatrician's office has extended themselves above and beyond to exceptionally manage Hope's care along with the care of my four other daughters. The thoughtfulness and kindness we have received there is above the highest standards imaginable. Many friends have stepped up to check in on us and ask what is needed. A friend has been coming by to help clean my condo each week, like our own Mary Poppins. Another dear sister in Christ has agreed to pay my mortgage and condo fee for the time being, knowing that I would be on unpaid Family Medical Leave Act to take care of baby Hope. Another dear friend has started a GoFundMe page for financial support as we prepare for transplant. Another dear brother from church took it upon himself to establish a contribution account through Lifesong for Orphans to help defray the adoption expenses. Another dear brother and sister from our church family helped defray adoption costs while we spent precious time together in Guangzhou to finalize our adoptions. People have donated time, energy, and food. Very dear friends have been picking up my older daughters to take them to school each morning, and provide rides to places. They have selflessly given of their time when I am beyond exhausted to take the older girls out to play, to get something to eat, or to just come be present as I now manage life with five amazing daughters. We have received precious emails of encouragement and prayer support. The teachers at the after school program my daughters' attend along with the daycare teachers where Hannah Joy attends have given the girls extra attention along with flexibility to our family. My parents have continued to step in to help with daily tasks and provide much appreciated love and care to us. Thinking about the compassion shown to us brings me speechless.
Thirty five days ago I had no idea what God was getting me into as I took a very frail, fragile, sick baby into my arms to be her mother. I was petrified and uncertain of where this would lead us. There are still moments when the thoughts of future possibilities terrify me, and I have to remember the mercies provided thus far and that the moments I have right now are where I am to be living. In five short weeks I have learned so much about living. Really living. All because of a most amazing blessing named baby Hope.
