Sunday, August 23, 2015

Seasons of Hope

There is a time for everything, and a season for every activity under the heavens (Ecclesiastes 3:1)...

The past 15 weeks and 3 days of my newest season has been some of the joyous and hardest times I have ever endured. Baby Hope is the most amazing, precious, unexpected gift I have ever had the privilege to receive. Life with her in our family is sweeter, fuller, and so much more blessed. She is adored by all of us, and loves us right back. Watching her face as she sees her sisters wake up or enter the room is priceless. Hearing her squeals of delight and seeing her eyes light up makes my heart swell so much I feel it could burst. I have the five most amazing children on the planet, and there is nothing I love more.

Baby Hope's medical condition requires her to eat a special formula every 2 hours. Around.the.clock. It will stay like this until transplant which could be days or months away. Her stomach is pushed up by the enormity of her huge liver and spleen. She can't take more than a few ounces at a time, and even with just a few ounces she experiences painful reflux that medications do nothing for. It is chronic sleep deprivation, harder than that required of residents studying medicine who are not expected to go months and months with no longer than a two hour block of sleep EVERY SINGLE NIGHT. I am not complaining at all in saying this, but the grueling nature has to be acknowledged. There are days when it seems I can no longer form a coherent sentence and all I can do is laugh at how I sound. There are so many things I hope to accomplish in a day and I am lucky if I can get to a few of them. It is physically, emotionally, and spiritually exhausting. Yet I would do it for years on end for baby Hope. She is so worth it.

Life as I knew it just 15 weeks and 4 days ago has drastically changed. That season of my life is over and a new one is here. Changes, even changes for good, take adjustment. I have survived the betrayal of false friends and rediscovered the love, sincerity, and loyalty of true friendships. My former routine is gone, and I tend to find comfort in routine and predictability. A new routine is gradually being built and along with it a new sense of myself. The stability and security I had back then is gone, and in it's place is a trust that our future is in His hands. The level of trust I am asked to give goes way beyond the half trust my self-reliant self is accustomed to giving. It is hard, but I will try to do it anyways. Through it all, I continue to be reminded to live in the moment, and cherish what I have.

The reminder to cherish what I have in the present became a little more relevant today as I learned our beloved pastor has plans to retire and move out of state. To say that this will be a huge loss for our church community and my family is an understatement. He and his wife are pillars of faith and true hands and feet of God. They have embraced and loved my non-traditional single parent lifestyle and all of my children. They have taught, listened, prayed, encouraged, guided, supported, laughed, and cried with us. For years, they have helped to navigate the messiness of life. I shudder to think of their presence being distant for purely selfish reasons. Yet, the next well deserved season of their lives will be dawning, and we will tearfully cheer them onto a phase of life where they can rest and enjoy God's goodness. Today's news is another indication to embrace the present and those in it, because life will change. It always does. Even when we wish for a trial to end. Or even when we wish the moments would stop in time.







Tuesday, August 11, 2015

UNOS listed

My little one is now officially on the UNOS list for a new liver. Seventy two days prior to the call for listing, she was laying in a crib waiting to die. Her bilirubin was double of what it is now. Her kidneys were not doing well. She was getting IV albumin to help her kidneys. She had a drain in her abdomen to remove fluid. There are times when I stop and think about it that it is completely unfathomable that she is still alive.

Sweet Hope is still very, very sick. It is easy to forget that as she smiles her adorable smiles or places her tiny hands across her eyes to play peek a boo. Her MRI showed a "massive" spleen which takes up more than 2/3 of her entire little torso. The bottoms of both lungs are collapsed either from spending 11 of the last 13 months laying in a crib or from her enormous organs pushing up against them. Her kidneys looked abnormal. She is anemic. Her liver is cirrhotic. There is still a little fluid in her abdomen. And yet, my sweet baby girl fights and smiles. She is gaining weight, and not just in her abdomen. She is getting stronger. She is learning. She is playful. And now we wait for another miracle for her.

When the NP called to let me know she was officially on the UNOS list, it was a mixture of emotions. I am beyond grateful for the chance she is getting. BEYOND grateful. It gives her a chance at a life. Yet, to get that chance, it means that someone is going to experience pain unimaginable. My baby girl's gain will be someone else's loss, and I wouldn't wish the pain of that loss on anybody.

Hope is listed for a whole liver or a part of a liver. That means that she could receive a baby or child sized liver, or part of an adult liver. Thinking about it, well, it's hard. I don't know how to pray for it. And I certainly will not ever be able to properly thank those who chose to give my baby girl a miracle in the midst of their own pain.

Our team at Boston Children's Hospital has told me the wait is very unpredictable. I could get a call tonight, or it could be a few months from now. We will have labs drawn regularly to see if her place on the list moves up to a higher priority. Right now, we are moderate priority with a PELD (pediatric end stage liver disease) score of 18. Her doctors all feel that if she has a few more months of relative stability to get stronger, it will be better for the 10 hour surgery and recovery. I trust that He who has gotten her this far, will provide the perfect timing. And in the meantime, we try to live life to the fullest.


Wednesday, July 1, 2015

Grasping for Hope

Sweet baby Hope and I met for the second day of the liver transplant evaluation and she was going to be listed for transplant next Monday. However, her ultrasound of last week showed enough concerns that the nurse practitioner from Children's has just called to let me know that they will not list her as planned. They need to wait for results from an MRI to determine if she is still a candidate. To say that I am heartbroken would be an understatement. There are words like "urgent" "masses" and "foci" now in her record. I thought I would be able to handle this news better than I am. I know she is sick. Very sick. Maybe I deceived myself into thinking that it would all be ok. That she just needed to be listed for a transplant, and she would get a new liver and a new chance at life. I slipped into getting too far ahead of Him, and got my hopes up. I am now crushed by the possible reality that she does not have biliary atresia, treatable with transplant. I don't know what the team is thinking, but it's enough for them to stop the liver transplant process and that scares me. It scares me beyond words.

Before this adoption I had told God that even if His plan was for me to be with her as she flies into His arms, I could do it. That thought now terrifies me and I am pleading with Him not to take her. I do not think I can do it. Selfishly I want her with me. I want her to live. I want her to have as normal a life as possible, as was told to me on Monday by the liver transplant team. The team told me their goal was to see her get married one day. Now it seems that the likelihood of that happening is slipping away. I am trying to hold on. I am trying to have Hope in Him that His plan is good. I am trying to stay with Him in the present. This is just so, so hard. Harder than anything He has ever asked me to do before.

I need prayer support. I do not know how I can handle this otherwise. I am not sure what to tell you to pray for. Please just pray for my sweet baby. I am grasping for Hope.

Saturday, June 27, 2015

Walking with Hope

Recently, someone I have known for over 10 years walked right be me and baby Hope as we were walking down a hallway. She muttered a "hi" and kept walking. No stopping. No "congratulations". No "how are you doing". She knew I was headed to China to bring this sweet baby here, so it isn't like she was just thrown for a loop. This was a deliberate shun. To say I was shocked would be an understatement. And angry. But mostly hurt.

As I have been thinking about this and praying about it I already had the expectation that not everyone would approve of my choice to bring home baby Hope. And that is ok. This is my own life, and I will live it according to what I believe I am being asked to do and what I believe is the right thing to do. We live in a world where some people feel strongly about having the right to weigh in on the ways others live, even when those others live in a way which brings no harm to anyone. I know this and get this, although it doesn't make it right (in my opinion). I guess I did not expect such a public, hurtful reaction to my decision from someone who clearly disagrees with how I am living my life. Baby Hope is a person. Her life matters. Just like all orphans matter, and all people who walk on this earth matter. Just like the person who chose to walk right by us matters. I just could not allow sweet baby Hope to suffer and die an agonizing death alone when I was given the gift of being able to do something about it. It is not the type of person I am. And all of the doors were opened for me to go get her. Doors unexpectedly open. So I chose to make that decision knowing that I would be inviting all of the joys and challenges of adding another child to my family. It just happens that my child is slowly dying of end stage liver failure and will need a miracle which comes with exceptional medical care available here in the United States. If she does not get that miracle, I will still have no regrets. She is surrounded by the love and care of my family and friends, and at the end of my days that matters more than anything else I can think of which exists in this world.

The world is a harsh place. It is a place where orphans suffer and die daily, in each and every country. It is a place where medical care can be a luxury for those who can afford it. It is a place where people can choose to shun others based on decisions they make or how they live lives which bring no harm to anyone. And yet, it is also a beautiful place. It is a place where the sickest orphans are lovingly welcomed into homes. It is a place where orphans with syndromes and illnesses are chosen. It is a place where those with medical backgrounds choose to give up personal vacations or lucrative careers in order to provide help to those in need. It is a place where people go out of their way to support and encourage others.

The outpouring of love, care, encouragement, and support I have received through the adoption of baby Hope FAR outweighs the shun I receive. I realized, in going through this, that I have a choice to decide where to plant my focus and perspective. I could become bitter at the harshness of this world or I could become joyful in the beauty of it. Given that choice, I choose joy. I choose love. And I choose hope.







Sunday, June 21, 2015

Loving Hope

Big things are happening for this little one.



Tomorrow we head to Boston Children's Hospital to have the first of two very important all day appointments which will impact this sweet one's future.




We have hope that the team has good plans in store. The head doctor is already saying not "if" but "when".



The days with her are precious. She is getting stronger every day and developing the sweetest personality. She is worth the round the clock feedings and care. What she gives in return is greater. So much greater.



Having her snuggle in during feedings in the stillness of night. Watching her squeal in delight at the antics of her sisters. Having her delicate hand reach for mine. Seeing her radiant smile.



I want more. I want to see her walk and run. I want to hear her call me mama. I want to follow the school bus as it brings her to Kindergarten on that first day. I want to see her be baptized in front of our church family. And I want to see her walk down the aisle to be married someday. I want a future for her. Yet these current moments are where I am to remain.



I cherish these moments. I don't want the moments to ever end. Tomorrow will unfold according to His plans. And I trust that her future is in the hands of the ultimate Healer.


Thursday, June 11, 2015

Amazing Hope

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.

Friday, May 29, 2015

Living in Hope

HOPE

Hope is the knowledge that we are being changed for the better as we trust in God's promises (Romans 8:28). It is the conviction that no matter the circumstances, God's plans for our lives are "for good and not for disaster, to give you a future and a hope" (Jeremiah 29:11b NLT). These things are truth, not just something that *may* happen. It is these things I trust in.

Sweet little Hope has been with us for 22 days now. Days where all of us are being changed for the better. She is, perhaps, the sweetest baby ever born. She steals hearts, this little one. And everyone who meets her instantly falls for her.

Our time in China was miraculous, just as her life thus far has been. She smiled when we met her at the airport. Yes, smiled. People have asked if she somehow recognized me and that I was back for her. I don't know the answer to this, but believe her little heart was prepared for our reunification. She was and is tiny, being the size of a 3-4 month old. The reality of how sick she is is visibly apparent in her eyes and body, and yet, she continues to smile and defy the odds. Her features are so beautifully delicate and I spent hours just staring at her in amazement that she is alive and in my arms again. That she is my baby daughter.

The miraculous nature of her story is truly unfathomable, and I am just beginning to try to process it all. I still am in awe that her story involves me and know that it is only because of God's plan for her that she is still here. There is no explanation to how she endured and survived the past 11 months when she was given a 1 month at life timeframe from a number of doctors. Even a doctor from here in the US took a look at her labs and gave her a month or so to live. This, back in January. Sweet Hope is a fighter and has one of the strongest wills to live that I have ever seen. Another miracle is her ability to have a family at all. See, she was considered "unadoptable" due to her prognosis. I would ask her orphanage about her adoption papers and was met with no answer. No answer is the way of saying no. It wasn't until my oldest daughter begged me to ask the orphanage if they would prepare her papers for us. For adoption into our family specifically. I explained to her that I would, but that she would need to be prepared because the orphanage would likely say no. Yet, the orphanage said yes. Unadoptable became adoptable, and she would not suffer or be alone in her pain ever again. Another hurdle was finding agency support. There are very few single parents who have been able to adopt 5 children from China. Upon approach to my agency, I received this response "I am not a religious person but I do hear a calling from the heaven. Yes, we will help you". Miracles. There are no other explanations.

There is something both profound and inspiring when opening one's heart to a child who is so sick. I am somewhat of a planner by nature. Plans were made for both the near and distant future. I am learning to let go of the plans, or perhaps hold onto them very loosely now. Life can change in an instant, and what I really have is the here and now. There are so many gifts in the here and now, and how foolish I have been for missing them as I planned away the lives of myself and my daughters. Having little Hope in my life is teaching me to slow down and to remain in the present. To find the beauty and mercies in each and every moment. To cherish the times of each day along with the people given to me. And to try to remember that His hope and trust have brought us this far and will carry us through.