Love in Abundance

The year 2015 is certainly going to go down as miraculous. Truly.Miraculous. As I reflect back to all that has happened in the past year, my jaw just drops. Never, in a million gazillion years, would I EVER have predicted that I would be where I am right now.

I now have 5 daughters. FIVE. Five amazing blessings from the place on the planet where my heart stays. Five girls, from age 14 to age 1. With Hope, I knew I was taking a huge leap of faith. Over and over the words "too late" were muttered. She was not expected to survive. We were asked to disembark the plane (three times) before take off for home because she looked that sick and the flight crew panicked her possible death would be on their hands. We did not budge. I would not budge. The PACT team at Dana Farber/Children's Hospital had prepared me for that moment. I had a letter planned. My baby girl would not leave my arms. And with odds stacked against her, she not only survived, she began to thrive. Her saggy skin began to develop some flesh under it. She began to understand that she would never be alone in her suffering again. She started playing. She was listed for transplant and received her hero liver four months later. She is now expected to live a full life. I think back to all of this, and hear the words "too late" spoken by both Chinese and American doctors. I understand those words, because they were logical words. Hope defied all logic and human understanding. Her whole story is so extraordinarily miraculous. That is the only explanation.

As if the miracle of Hope's life and story were not enough, the miracles continue. It has now been eight months since I have been able to work. There has been no income since the first week of May. I cannot collect unemployment and do not receive SSI. And yet, ALL of our bills have been paid. Every.single.month. Somehow, the perfect amount is given to provide. Since May, meals and groceries have come in. Delicious meals, many home cooked. Mountains of food came in throughout the transplant hospital stay. The parking of my car at the hospital during inpatient stays has been paid for. Upon hearing that Hope and I were in the emergency room waiting to be admitted last Saturday, a dear friend quickly dropped everything to surprise us and be present. We had wonderful visitors during hospitalizations, making the time seem to fly by. The words "what do you need" are frequently spoken. Care packages came in. New tires for my car were paid for. Clothing has come in. School supplies for the girls came in. A new chromebook was given for schoolwork. A new phone was given to me by a dear friend so that there would be no unreliability, and a new laptop was given for future work in China. A dear friend donated her time and services to take the most exquisite family photos. My condo was cleaned again and again. A room mother for one of the girls has paid for all of the extras needed in her classroom. She has taken my girl under her wing and took video of my daughter when I could not be at the school for a performance. Rides were provided. Extras at the girls' after school program were provided for, so that they could partake in the gingerbread decorating. Our after school program became elves and delivered box after box of Christmas gifts for the girls, so that I could "relax and just enjoy". Gas cards and grocery store gift cards were donated. Dear friends excitedly shopped for stocking stuffers, apparently thinking we all have mega stockings. Our church family created a DVD recording of the church service to "bring church to us" in this time of isolation due to Hope's immunosuppression. Our pediatrician has supported and personally called to check in with me when we were hospitalized (this, in addition to calling the team to get the most accurate medical update). The pediatrician's office was giddy with excitement to see my baby girl after transplant. Two of my most cherished people continue to drop everything to be present for me and my girls whenever needed, always with smiling eyes and hearts. The rally cry of "choose HOPE" has become a reality as people choose to find the ultimate hope in all circumstances. Our people near and far expressed their love and care for us through prayer, texts, emails, messages, and calls. Those messages of love are *treasured* and helped us to get through some of the hard days. The thoughtfulness and kindness is just astounding. It.IS.Miraculous.

One of the biggest lessons I have been reminded of is the gift of people. The people in our lives and the time we have with them is the best gift in life. The best. I have known that, but now really know. This has been the theme of the past year. My family was given the gift of an incredibly sick baby girl who helped show us just how precious that time with people is. She has helped me to live in the moment rather than to live in the future. We learned who our true community is, and just how loved we are. I could never fully express the sincere gratitude I have in my heart for my community, my village. My village who provides us with love in abundance.

Home with Hope

Twenty three days ago my sweet baby Hope received her miracle gift of a hero liver from a deceased donor. I do not know anything about the donor or family, other than Hope received a part of the liver. To say that we have been receiving the most exceptional care would be an understatement. Two days after surgery, her surgeon took her back to the operating room to open a vein in the liver with a clot in it. Praise God this was found early so it could be corrected and she could move on to healing. She spent 5 days in the ICU unit where we had the best nurses ever. EVER. Then, we were moved to the transplant floor where other children recovering from liver or kidney transplants stay. Again, the nursing care was superb. God has clearly put incredible people into our path to help us through this time. What is truly amazing is the fact that Boston Children's Hospital's liver transplant program is top in the country and it is right in our backyard. There were families on the floor who have traveled from around the world to come here. A family recently moved up from Florida. Another is from Mexico. Another is from Dubai. It has confirmed that despite 6 of us living in a 2 bedroom condo, this is where we need to be and stay so we can continue to receive wonderful medical care. Someone in my liver families group has said that post-transplant care is so critical, maybe even more so than the initial surgery. Her son is 15 years out from his liver transplant, and I believe she is right. Hope has already had three appointments at Children's in the past week since we were discharged. Two of these were to measure labs. The other appointment included labs and to meet with the team for our weekly 9:00am clinic visit. Our team is on top of things and is in constant communication. Every time she has labs, someone calls me later that day to explain what they show. While we were in the hospital, our surgeon came to the ICU to watch the ultrasound being done. He did not rely on the report, but rather wanted to see it with his own eyes. Another time, our liver doctor told us she was awake in the middle of the night, logging on to monitor Hope's vitals since her temperature was slightly elevated. That is the quality of care we are receiving. So exceptional.

Hope has already shown amazing responsiveness to her new liver. On the day of surgery, her bilirubin/jaundice was at 15.8. Literally overnight, she went down to 3.6. She is now at .3. This means her liver is working perfectly. She now will sleep all night, with just occasional crying for quick reassurance. The days of feeding her at night every 30 min-2 hours are behind us. Her body can now absorb and use the nutrition that she gets. She has begun to eat solid foods and taking sips from a cup. She is gaining weight and is up to 17 lbs.

Hope has come home with a feeding tube, abdominal drain and with 9 different medications. Right now, two of these medications are to fight rejection of her new liver. She is on an antiviral. A blood pressure medication. A blood thinner. A stomach protector. An anti fungal. An antibiotic to prevent pneumonia. And a 1/4 teaspoon of baking soda (ewww, for her electrolytes). Over the course of the next year she will be weaned from many of these medications. She will be on the anti rejection medication for the rest of her life. She takes them all by mouth, despite the fact that some of them make her gag. The nurses all said they are amazed at how well she does taking medications at her age. The feeding tube is necessary since she isn't interested in drinking enough right now. The abdominal drain is helping to get rid of the fluid which collects sometimes after liver transplant surgery. Hopefully this will be removed in the next few weeks. Hope's incision is healing nicely and the stitches will dissolve.

The outpouring of love and support during this time I something for which I am so deeply grateful. People around the world have been holding us in prayer. Dear friends moved into my condo to take care of the 4 older girls. Never once have these friends complained or even seemed tired. Home cooked meals were made every single night for my older girls and friends staying with them every single night. People gave rides and playdates. Food, baby supplies, and groceries have been delivered. I have received visits, messages, texts, and emails to express love and care while Hope was hospitalized. Christmas gifts and stockings for the girls have been covered. The thoughtfulness is just such a gift to us. I will never be able to properly express my gratitude.

The doctors have said for the next 6-8 weeks it will be important to remain isolated. After surgery, Hope was started on anti rejection medications to help her body fully accept her new liver. However, this means she is extremely susceptible to even the most minor illness. Any fever over 100.4 brings automatic hospitalization. Over time, the effects of these medications will decrease and her immune system will become stronger. Until then, we will be following the recommendations of avoiding all public places and limiting all visitors.

God knew what He was doing, leading us to baby Hope. Her team of doctors and nurses are meticulous in their care. They explain everything to me, answer my questions, and truly love Hope. Even the ultrasound tech here knew she had been listed for transplant and was hoping for the miracle. It is humbling that I was chosen to be the mother of such a precious baby. We have crossed the huge hurdle of waiting for transplant. She has defied all of the odds and lived. Her hero liver came in time. We now are creating our post transplant normal, cherishing each moment. I am soaking it up and am grateful for all of it.

Thanksgiving

Sovereign God
A risk to take
All things made new
Beauty from the ashes
Beauty in brokenness
A life that matters
No longer an orphan
A baby now known
A daughter dearly loved
The samaritan offer
A selfless donor and family
A hero liver
Always, always hope
It was not "too late"
Toxins gone
Whites of eyes
Pruritus a distant memory
Healing
Miracles in the midst
Company on the crazy coaster
A community who rallies
Exceptional care
Meticulous in every detail
Liver families
Tender touch
Outpouring of love
Offers of help
Friendly smiles
Understanding of pain
Whispers of prayer
A new day dawning
Precious moments in time
Feelings of peace
The ability to choose
A source of Hope
Rejoicing in life
Eucharisteo

Hope in the risk

"Love is always worth the risk".

I wrote those words. Two years ago. Two years ago to the very day that we would get the call that there was a liver donor for sweet baby Hope. I wrote them to the mother of a little girl whose story I had been following. A little girl who was living with half a heart. A little girl who, like Hope, was not expected to make it. A little girl who was adopted from China as an answer to her mother's prayers. A little girl who embodied hope as she defied all odds and human understanding. A little girl who hung onto life and received the miraculous gift of a hero heart transplant. A little girl who stole the hearts of all those around her, including mine. A little girl, who would be known as Lily Strong. A little girl, whose very life was such a huge testimony to the love of our great God.

At the time, I had no idea what would unfold in my life just two years later. At the time, I did not know that it was no coincidence that I was carefully following and praying for sweet Lily and her family. At the time, I had no idea that as I spoke about Lily to my family and friends that God was weaving together stories and lives for His glory. At the time, I did not know that I was being prepared to walk a similar yet unique path. At the time, I did not know that I would ever actually have a hint of what was going through the mama heart of Lily's mom. At the time, I did not know that I would be asked to love dangerously, just as Lily's mom does.

I wrote those words to Lily's mama on November 24, 2013. And now, November 24, 2015 we would receive a call from Hope's transplant team that there was a hero liver for her. My friend found these words and shared them with me, as Hope lay sleeping on my chest awaiting her surgery. I immediately thought of the past year and all that Hope has been through. Six months of the past year were spent in an orphanage and hospice home as an orphan where she was not expected to survive. I thought of how impossible it was that she made it out of China and that she made it home. I thought of how unfathomable that it is that she was still alive and breathing on me. I thought of how miraculous that she has actually made it to the point where this gift is an option. I thought of how fierce my love is for her. And I thought of how I would do it all over again for her. Because she is so, so worth it.

I am still not sure why I was the one chosen to be Hope's mother. But I am beyond grateful that I was chosen. Loving her has taught me so so much, and I am still learning. I have learned to try to live in the moment and find the beauty. I have learned that there is ALWAYS hope. I have learned to choose hope in even the most desperate of situations or when things seem out of control. And I have learned that to love, even to love in the face of enormous uncertainty, is always worth it.

I live now to choose hope. And I live now to choose love. Because love is always worth the risk.

Six months of Hope

“Orphans are easier to ignore before you know their names.

They are easier to ignore before you see their faces.

It is easier to pretend they’re not real before you hold them in your arms.

But once you do, everything changes…” – David Platt, “Radical”

#nationaladoptionmonth
#sixmonthsinmyarms

Ramblings of Hope

Yesterday, we got the call. As in THE CALL. The "possible liver" transplant call. It happened while we were already at Boston Children's Hospital with Hope's sisters who were getting transfused. There is not a way to describe the feeling of receiving that call. There are so many mixed emotions. Excitement for the possibility. Relief that my baby's suffering might be ending through the gift of transplant. Sadness for the family whose great loss is gain for another. Gratitude for the donor family for choosing life. Panic at the prospect of a 10 hour transplant surgery. Awe of God's goodness and provision. All entwined together in one moment. Layered upon that was the knowledge that my baby is sick with a cold and ear infection, and the disappointment that it likely is not meant to be. And the hope that maybe, just maybe, the doctors who would come to examine Hope would say she is well enough to undergo the surgery. Hope that maybe it was, meant to be.

As I explained to our transplant coordinator what has happened since Hope became sick Saturday night, I could hear the concern in her voice. She explained that she would call the surgeon. She would call back. I quickly told the nurses who were caring for my other two daughters what was happening. Oh those nurses. These amazing women who love on our family every three weeks on transfusion day. They knew the magnitude of what was happening. I didn't even need to say. They surrounded me and my children. They distracted and played. In their eyes I saw the emotions. The hope. The fear. The concern. The care. The support. They got it. They knew. One of our dear nurses looked at me when the room was a bit emptier. She tenderly said, "her lungs are so important for this surgery. So, so important." She had heard my baby daughter cough. She had heard her wheeze. And she reminded me of truth. She prepared me.

Soon two doctors came into the room. Hope beamed her huge smile as if to say "maybe I am ok for this?". They asked me what had been happening. They listened to her lungs. I could see the concern on their faces. I knew. Dr Elisofon looked at me. He explained how the risk is just too great with her in this condition. Risk of anesthesia. Risk of necessary immunosuppression. As much as we all wanted her to receive the gift, it wasn't meant to be.

They wanted to run a virus panel (RSV had already been ruled out by our beloved pedi, impressing the team) and get a chest X-ray. And then they were gone. But those nurses, oh the nurses of the CATCR where my girls are transfused, they knew. They understood. They were so sad for us. I told them I was on the roller coaster and wanted off. One said we are not just on any roller coaster. We are on the upside down terror coaster. Flying fast and in all directions.

In the midst of all of this, one of my dearest friend reminded me to seek the mercies. The mercies that are so clearly there. Our team. Our nurses. Our family. Our friends. Our living donor who is willing to come out for transplant surgery where she will donate the tip of her liver on November 18th. All mercies.

Because Hope's liver is so sick at this point, making it hard to breathe, sit, move, eat, and sleep, her team has said we will take the first perfect liver available. I do not know what this means. I do not know how this story will unfold. Will she receive her living donor's liver? Or will it be something sooner? Only God knows. And I need to trust that He knows best.

Driving home I complained to God. It is so hard watching my baby be so sick. I wanted her gift to happen, and it was hard going through what had happened that afternoon. Really HARD. As we got settled back at home, there was a message waiting for me. Another true mercy to remind me that God knew and understood. One of the sweetest young souls I know in this world said that she was reminded of me just that morning as she read Psalm 27:14 "Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD." This came minutes after a text from my wise counsel who said she thought I was so, so brave. Even though I don't feel brave, I knew. I am to continue to be patient and trust. And I can celebrate that another mother got the call. Someone else's very sick baby received a miracle gift last night. Thank you God.

Riding with hope

Those who know me well will know that I am not a roller coaster kind of girl. I much prefer the merry go round. It's a gentler ride and on horses which is bonus. The merry go round is much more predictable, with some ups and downs, and always moving in a forward direction. Yet, life is not always like the merry go round. More often, it seems, it is like a roller coaster, with some exhilarating ups and terrifying downs and always a bit unpredictable.

The past few weeks have been very much like a roller coaster. There has been the exhilaration of finding a living donor, and then the stall at the top of the hill with no progress towards a potential surgery date. And the quick crash down of having my fears confirmed that Hope is becoming sicker.

We had our 3 month recertification for the UNOS liver waiting list last Wednesday. Children must be re-certified every three months to determine their status on the list. Our doctor does labs every month, so I had an updated score last month. The score is a called a PELD score number, with PELD standing for Pediatric End Stage Liver Disease. The higher the number, the sicker the child, and the more urgent the need for an organ transplant. Hope was listed with a "moderate" score of 18 back in July. It was the same number in August. In September, she moved to 19. And now, she took a jump to 24. Her jump in score is because she is not able to clot her blood as well (a function of livers) and her kidneys are weaker (which happens in liver disease). Despite the fact that she looks SO much better on the outside and continues to flash that award winning smile, she is sicker. Our amazing liver doctor, recognizing that she is sicker, told me that she would be applying for "exception points" for my girl. Exception points are written for by a child's doctor, which allows the child a higher spot on the list. In Hope's case, she has been written for a PELD score of 40. Her doctor explained that because of Hope's huge abdominal size (we had to have 3 different doctors examine it and have another ultrasound done on Wednesday because it is THAT big), her negligible vitamin levels, her portal hypertension, and her poor growth may allow UNOS to agree to place her higher on the list. Sometime this week we will have an answer to know if the points have been accepted.

It was very clear at our appointment on Wednesday that our team prefers cadaveric organ donation. I asked our doctor why. Her answer was simple. That there is no risk to another patient. Surgery is surgery, and even minimal risk surgeries (which our donor's team has said hers would be) carry risk. Other than that, there is no difference in how Hope receives her liver.

I left the appointment exhausted. And deflated. In the past three weeks, we had pneumonia hit our home for two girls, and lice hit for two girls (eek!). Hope is only sleeping 30 minutes to an hour at a time most nights now. Long gone are our two hours of uninterrupted sleep chunks. One fellow liver mom told me that as liver disease progresses, the baby's body becomes desperate for nutrition so wakes up to feed in an attempt to get what it needs. But it can never get what it needs, because the liver is too sick to absorb nutrients. My poor sweet baby girl. The roller coaster has been spiraling down so fast and I wanted my family off. I wanted the merry go round. I wanted to sit on the horse and have just little ups and downs, not this terrifying fast ride. Then I realized, I am not alone on the crazy coaster. God has provided me an army of friends to ride along with me. People praying for us during the ride. People who have been delivering food and meals. A friend who always thinks to offer to pay for the extras at my daughters' school. Friends who are not afraid to come into a home with lice or pneumonia and just hang out with us. Family and friends willing to stay with a child with pneumonia so another could get to a long anticipated appointment. Friends who message, call, and text just to check in and see if anything is needed. Friends who show grace when I cannot return a phone call or am late sending a thank you. A friend willing to take the time to email a vice president and explore financial resources so my children do not have any interruption in their child care routine. A donor who is willing to say YES. A friend who continually puts out our story in order for needed financial support since we have no income or unemployment benefits. A friend who donates her time to take family photos, and another friend who opens her home for a spur of the moment dinner. Fellow liver mamas who tell me that they understand, one who shares data on the kids waiting and takes the time to explain it to me, and others who remind me to live for today. A spiritual director who reminds me that God has the best plan for my sweet baby which is unfolding as it should be, and that I need to be patient and trust that He knows best. My list could go on an on. All mercies. From Him who sits next to me on the crazy coaster.

I am not sure how much longer we will be on the roller coaster as we wait for transplant. I do know that I would not trade this ride, as scary as it is, as it is MY ride. I do not know what corner, hill, or slope we are heading to tomorrow or next week, but I do know there will be more mercies. And I plan to hang on Him for the ride.

Hope on the red eye

Right now, on the red eye from Washington state to Boston, is our samaritan donor. In the world of liver transplants, there are two ways Hope could receive her gift. One is through cadaver donation, where a deceased donor's liver would be given to Hope. Hope is currently on the UNOS waiting list for a cadaver donor. There are WAY too many people waiting for livers than there are livers available. Since becoming a part of the "liver world" I have witnessed baby after baby die waiting for his or her gift. It is heartbreaking. Hope has been on the cadaver list for three months now. The sicker the baby, the higher they are on the list. Of course being sicker also means a much more critical surgery and recovery. I have seen babies die during the recovery process too. From what we can tell, Hope is 3rd or 4th on the cadaver list in this New England region, and there has been no movement in the time she has been waiting.
The other way Hope could receive her gift is through living donation. This means a person chooses to donate a piece of his or her liver. Hope only requires part of a liver to survive, and every person's liver is comprised of two lobes. If a living donor was found, she would receive the smaller part of a liver and the donor would keep the remaining larger part. The donor's liver would grow back to original size. It is the only organ in the body which can regenerate itself. When I first came home, I was very anxious to see what blood type Hope has. It is the first method of determining whether someone could be a living donor. Unfortunately, I am type A and she is type O. I cannot be a living donor.
Back at the end of August, our regional newspaper published a front page article on Hope's miraculous story in the Sunday paper. It was then syndicated around the US and abroad. Friends shared the article on social media, and the outpouring of prayers and support was nothing short of astounding. Shortly after, dear friends of our family sent a message introducing me to a childhood friend of theirs. This person asked if she could be tested as a living donor for Hope. She said she felt a strong calling or prompting from God to do so. And she was serious. Despite never having met us, she wanted to pursue being a donor.
Our first hurdle was to ask the transplant team at Boston Children's Hospital if it would be possible to consider this person as a living donor. Unbeknownst to me, there is a black market for organs which still exists in this country. Donors can receive payment for donating organs. The team takes this very seriously, and decided they would meet as a team to discuss it. At the time I had no idea what they had to discuss (again, I was clueless about unethical practices), and said to our transplant coordinator that I could not see the difference if Hope received an unknown cadaver donor or an unknown (to us) or known living donor. Perhaps it was that statement that contributed to the teams' agreement to allow us to pursue living donation. They gave us the go ahead to begin testing. Our donor quickly began completing questionnaires and bloodwork. All of the donor doctors and Hope's doctors are completely separate. This way, there is no conflict of interest. The donor is seen at a completely different hospital, and if donation surgery happens, Hope's surgeons will travel to this hospital on the day of transplant with cooler in hand to bring the liver back to Hope at Boston Children's Hospital. All of the donor's tests have been passed, and she is now on the red eye coming for the final round of testing to see if surgery could happen. We could even have a date set THIS WEEK for Hope's surgery. To say that it is all so miraculous and surreal would be an understatement.
Boston Children's Hospital has NEVER had what they call a samaritan living liver donor (samaritan being non family member or close known friend). Ever. There has only been ONE samaritan kidney donor at Children's. Ever. Even the name "samaritan donor" gives me chills. We saw one of Hope's doctors on Friday, and he asked how the liver transplant wait process had been going. I explained to him that our samaritan donor was flying in this week for final testing. He looked at Hope, then looked at me, and was at a loss for words. He then said "that would be astounding. I will keep my fingers crossed". I know it's not the crossing of fingers which is guiding Hope's story. But I thanked him, smiled, and basked in the story that is unfolding for my sweet baby girl under God's care.
Even if this does not work out, the fact that someone is willing to step forward to say YES to God's prompting in order to save my baby girl's life is breathtaking. Never, in a million years, would I have dreamed of this. Only God could orchestrate such a miracle. And I am the luckiest mother to be a part of it. Samaritan. Believe. HOPE!!

Sisters of Hope

When I was a little girl, I always dreamed of having a sister. Growing up, my next door neighbor was quite a bit older than me and I loved heading to my her house to hear her stories and to try to imitate her gymnastics. Over the years, I have been lucky to have great friends who became like sisters. Friends who I can share life with, dream with, and tell my deepest secrets to. Sister friends who are not just "fair weather" friends, but those who still love me and stick by me when I am cranky, make mistakes, or when I am not very lovable.

One of my hopes in raising my girls is that they will develop the type of relationships that I have had with some of my closest friends. Watching them grow together and share experiences has been precious. My hope is that some day when they are adults they will look back on their childhood and be grateful that they had each other to grow up with. I don't expect perfection...there is a fair share of normal squabbles and dysfunction...but I hope that they are creating bonds which will never be broken.

My first daughter, the one who made me a mother, is approaching 14 years old. Adopting her changed my life forever on so many levels. It began my calling to do more for orphans. While in Guangxi, I fell in love with the people there and cried when it was time to leave. Her adoption grew my resolve to go back as soon as possible to give back. Adopting her was the start of my family as it would become today. Adopting her brought me to our beloved church community and enabled some of the most powerful relationships for all of us. My first born is bright, athletic, and artistic. She has a huge heart for orphans. She loves music, basketball, and being with her friends. She taught me that parenting is joyous, hard, and one of the most growing experiences of my lifetime.

My second daughter is now 11 years old. I met her when she was just a year old on our first short term mission trip to work in Guangxi orphanages in 2005. Her adoption as a two year old with a congenital heart condition opened my eyes to adoption of special needs children. Her adoption gave my first born a sibling, and all of the joys and challenges that go along with that role. My second daughter is passionate, bright, highly verbal, loves all animals and is quickly becoming vegetarian. She has a special place in her heart for children with Down Syndrome. She loves school, gymnastics, and violin. She also dreams of finding her birth family and traveling back to China more frequently to see them.

My third daughter, my true middle child, is now 9 years old. She has beta thalassemia major requiring life saving blood transfusions every 21 days. She also has other needs consistent with Russell Silver Syndrome. She has been home for 4 years and has challenged my thoughts of what truly matters when considering my children as someday grown adults. The idea of loving God, being kind to others, and being a productive member of society is now my goal for ALL my girls. Being a productive member of society doesn't just mean going to university. Doing a trade skill or even doing volunteer work are also productive for society. This child is a friend to everyone and shows kindness to all. She loves learning about science, helping others, dancing, and singing.

My fourth daughter was the first of my surprise adoptions. Prior to her adoption, I had no intention of adopting again, and when I felt God prompting me I was really very nervous. Scared stiff. I honestly had no idea what was in store as I set back to China again for my fourth Guangxi girl. But God. Oh, how this little one waltzed into our lives and brought such joy! She is a great blend of energy, sassiness, and sweetness. She also has a form of thalassemia so shares treatments with her older sister. The bond they have is without words. She is now five and loves all things pony. She also loves China with all her heart and asks daily when we are heading back.

My littlest daughter, the fifth miracle girl, is only one year old. She has endured so much pain and struggle all alone as an orphan. It is still extraordinary that she is actually here as part of my family. Many days it still feels like a dream. Once considered "unadoptable", many miracles happened and she has outlived her initial prognosis. She is the bravest baby I know and has a smile which is contagious. She currently is awaiting liver transplant for treatment of her liver failure. She loves playing ball, snuggling, sweet potatoes, and making her sisters laugh.

My house is full. My heart is full. My girls have sisters and will always have each other for the ups and downs of life. It is amazingly fun watching them grow, and catching them in the moments where their love for each other is palpable. Life is precious. And often unexpected. And full of hope.

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.

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.

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.

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.

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.

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.

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.

Choosing Hope

There are some things in life which just defy all human understanding or logic. Things which are truly unexplainable and impossible. Miracles, really. Right now, as I sit in Logan airport ready to depart for China, I realize that I have become part of something that is beyond my understanding. It is likely beyond many others' understanding.
This was not expected. At all. And to say that I am terrified would be an understatement. If I think about this too long, right now, the panic can become consuming. Because it is scary. Saying yes to a dying child who needs a mother is very scary.
I literally had to stop writing, because I was freaking myself out thinking of just how enormous this all is. Because it is huge and unfathomable to myself and likely most other people. But it isn’t huge to God. So now I am settled on the plane and realizing I have had it all wrong. Again. My perspective of fear and panic derived from thinking about the big picture and the impossibility of what is happening. Instead, I realized while sitting here next to my second and forth daughter, that I am to seize this moment and recognize it as a gift. And oh what a gift it is. I am heading back to the place where part of my heart always is. I am heading to the place where my daughters were born, and where my littlest dying daughter is waiting for me. This time not as an orphanage volunteer, but as her mother. I am heading back to the place where very special friends live, and where my Meimei lives. I am getting another chance to be back there, and to breathe in all of the amazing opportunities that I will be given. I will be able to soak in the beauty of holding a tiny baby again. I will be able to study her sweet face, and smell her baby breath. I will be able to be present on the first anniversary of Meimei’s son’ s death so that she does not need to go thought this day alone. I will be able to be in fellowship with my dear friends and share life with them. These things are not scary at all. They are life giving and energizing. I need to remember that each day, each moment, is a gift. Remembering that is still hard for me but I will try.
The fact that I am on this plane, in this place right now, is completely against all human rationale. It makes no sense that a baby who was given only 1 month to live is still alive 11 months later. It is incomprehensible that I have been granted permission to be her mother. The orphanage would not complete her paperwork for anyone else. Why me? I still do not know. But that really doesn’t matter. What matters is that I have a choice to respond. I can decide to look at this and think “no way it’s too hard”, “how could I possibly do it”, and/or “ I am too terrified to take the leap, fearing the what ifs”. Or I can choose hope. I can choose to say yes and try to live presently in each moment. I can choose to be assured that there is still beauty and mercy in this broken world. I can choose hope that only comes from knowing Him. I can choose to remind myself that this story has greater purposes than I can ever begin to understand. I choose hope.

Hope in brokenness

I received photos this morning.

And my mother's heart is shattered.

She is in the PICU at a local Chinese hospital.

She is alone.

She is very sick.

She is scared.

She is an orphan.

It is all so very wrong.

Her life matters.

Her suffering matters.

Babies are not meant to suffer alone.

People. People are not meant to suffer alone.

I am looking for the mercy.

I know it's there.

Somewhere it's there.

I trust it's there.

The Extraordinary

Yesterday, our amazing beloved pastor continued our sermon series on the old testament. Now, I have to admit, the old testament is not something that is easy for me to understand or apply to my life. Sure I learned bible stories as a kid, and remember bits and pieces of them now, but my overall understanding of the old testament has been, well, pretty poor. But God. God has given us the wisdom of brilliant people, like our pastor, who does have understanding of the old testament and who can discern what the text may be saying to us. What that text may be saying to me. And so yesterday, we looked at Ruth. And I waited with anticipation to see how this could possibly have anything to do with me. Because, it's about me, right? Ha. God has a sense of humor, and used yesterday to remind me that it isn't about me. Well, definitely not really about me in a direct way. It is about Him. And about how He uses people like me for His purposes. It would have been difficult to not focus on what our pastor was saying, as he went on to explain how God is willing to use people, even like me as He weaves His way to be a blessing to all the nations. I kept thinking that this was God speaking directly to me through our pastor. I know it was.

I am really a simple, ordinary person. In the big scheme of life, I am a little person. I am not a lawyer or judge who can fight for justice. I am not a brilliant doctor offering healing. I am not a skilled computer expert who can devise technological advances to change lives. I am in the mainstream. Just someone who gets up every day, goes to work, and takes care of children. I don't desire glamor or wealth. I don't desire to be noticed. Those who know me know that to be true. I like to feel like I am living life to the fullest, and that somehow I make a difference in the lives of others. In some small way. So yesterday, when our pastor spoke of how God used a "random, peasant woman" named Ruth as the person who would enable the lineage of king David, which would lead to Christ, I got chills. God chose the ordinary person to accomplish something extraordinary. He chose someone who is the average person. Our pastor explained, our lives matter. Our lives have purpose. ALL lives have purpose. Not only the big, important people. Even those of us who are the little people. Our lives can make a difference, even if we never see the final outcome. Ruth never knew the final outcome, which is ok because it's not about her. I know that I am being called to do more. Why me? I have no clue. I suppose it's because I am ordinary and unexpected and God is God. I suppose it's because God has an extraordinary purpose to fulfill in part through a random girl like me.

As I thought about these words, I thought of the orphans we met last November, and over the past 10 years that I have been lucky enough to do work with orphanages. Their lives matter. I thought of my four daughters. Their lives matter. I thought of sweet Hope. Her life matters. Maybe she will never see the outcome of her story either. Maybe she will never know how people have come together to pray for her miracle. How miracles already happened in the unfolding of her story. How desperately she is wanted and loved by so many around the world. The fact that Hope has lived this long with end stage liver disease is extraordinary. The fact that it is her life which opened my eyes to the needs of the sickest of orphans is extraordinary. The fact that God would choose an ordinary single mother to be a part of His extraordinary plan is just beyond words. Like Ruth, neither Hope nor I may ever see the final outcome of the purposes of our lives, which is ok. I know for certain, because it is about Him and not about me, that whatever happens in this next phase of my life is somehow related to His greater purpose and good. And I am grateful to our pastor for that reminder.

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.

Angels

The words I read before I went to sleep last night, sent by one of my best friends by text, said "pray that God would send an angel to comfort her". These words were meant for baby Hope. A sweet 9 month old with end stage liver disease who has touched hearts around the world. A baby whose condition has worsened significantly over the past 4 weeks. A baby whose tiny hand would grasp my hair as I held her, whose little grin emerged as I tickled her gently, and whose beautiful eyes shed tears as I put her back in her crib when it was time to say goodbye. A baby who I hoped could desperately get her chance.



A team of people began working together on Hope's chance as soon as we got home. Her labs and ultrasound were reviewed. The orphanage agreed to get another set of updated labs and another ultrasound. Her orphanage was giving her US formula and a supplement recommended to help her gain weight through fats which her liver could handle. Several physicians at hospitals in the Boston area put their heads together. We approached the liver transplant team at Boston Children's Hospital, at Johns Hopkins, and at Riley. The people here graciously offered time, thoughts, prognosis, and explanations. Physicians contacted other physicians they knew, including doctors from around the world. Mothers who have children with biliary atresia from China (Hope's suspected diagnosis) gave direction, words of wisdom and offered prayer support. The number of people this special baby has touched grew exponentially.

When our friends in China first told me that we were asked to go to Henan, I have to admit I was a bit unexcited. Guangxi is where my heart is. It is where I am always calculating to get back to. My girls are from there, and it is the place I long to work and help. I wanted to be there the whole time. My friend described how much help was needed in Henan, and I could not refuse. Somehow I trusted God's leading there. Now, as I see the bigger picture, I know one of the reasons He wanted us there. The first day we arrived, several Christians would come meet us in our hotel that afternoon. We would learn that they were running programs in Henan, and were getting very little practical, financial, or emotional support even from their own local church. One of these programs was for children over the age of 6, whose local families were unable to take care of them. The other program was a palliative care/hospice home for children birth to three, run by several people. It is called House of Love (not Maria's Big House of Love), staffed by Christians including one named Scarlet who is a nurse. I did not have the chance to visit these programs, but my travel mates and children did on one of my teaching days. They remarked at what an amazing job these brothers and sisters were doing, with some of the most forgotten children.

This week, I got word that sweet baby Hope was declining quickly. She lost weight and showed little appetite. Her little spirit was poor. Her abdomen was much more swollen than before. Seeing the photos of her tense, huge abdomen and sad look in her eyes was utterly heartbreaking. One of the MD's here said they did not expect her to live more than two months, based on her last labs taken in December. The ideas of trying to get her stronger and to the US for surgery, or anywhere else for that matter, were fading away. Little Hope was suffering and living alone in an orphanage. Despite the orphanages' attempts to provide care for her, it was the thought of being so sick with no one to comfort her that began haunting me. My two youngest children, who have had a simple viral cold over the past few days, needed so much extra care and comfort. Feeling sick makes them so much more needy. Little Hope has had no one to even hold her as she feels nauseated and ill. It was this that my dear friend heard from me, and responded back with "pray that God would send an angel to comfort her".

This morning, I woke up to several text messages from my friend in China who said she had some news. We had been asking the orphanage director if Hope could be sent to an NGO for more care. If there was any chance for Hope to get some special attention, it would be through something like this. My friend wanted to let me know that the orphanage has agreed to let baby Hope go with Scarlet, the nurse who helps run the palliative care/hospice home, in Henan. And, she went on to tell me, that Scarlet's nursing training is in pediatric liver disease. She can fly down to Guangxi on Thursday, and fly back with baby Hope. She can get Hope started on a diuretic to help make her more comfortable, and see if she can help Hope gain weight. At the very most, she can hold this precious baby and comfort her in here final days this horrible illness.

The prayer of my dear friend was heard, and answered very quickly. Scarlet is our living, breathing angel. She is Hope's angel. When we went to Henan, I had no idea that Hope's life would be one of the purposes of our time there. No clue. I am embarrassed over my reluctance to go, and am in complete awe of God's goodness even in the midst of horrible suffering. Suffering of an innocent baby girl born in a country lacking the resources to effectively help her medical condition. I am in awe of how Hope's story is unfolding, and find comfort in knowing that after tomorrow, she will not ever be alone again. I am in awe of this provision for baby Hope. And I am in awe over the angel who will care for her, a sister I had the privilege of meeting, in a connection which can only be explained by God.


our team with House of Love staff