It's a merciful life

It's a merciful life

Tuesday, January 6, 2015

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

Thursday, December 25, 2014

Gold, Frankincense, and Myrrh

My baby girl is the first child ever with thalassemia to live from her orphanage. First.Child.Ever. All of the others with thalassemia did not survive. Not one survivor. Some of the children who did not survive I met personally. I held them in my arms. Knowing this, and how easily she could have been one to not survive is something I am mindful of each time I witness her radiant smile; each time I hear what a beautiful child she is; and each time she snuggles close to me and tells me "mama I love you so, so much". She is my miracle adoption, in so many ways. She is a living miracle.





Hannah Joy is the first, and a child named Ayla is the second. Ayla and Hannah Joy were at the orphanage at the same time. They were "orphanage sisters", who would go to transfusion days together. Ayla was very, very sick when the orphanage let me know about her. Her first photos were truly heartbreaking. Yet God, being in the business of miracles, transformed this precious child by giving her the love of a family whose mother has one of the biggest hearts of anyone I know. Her mother is a warrior mom who shows such grace as she works tirelessly to ensure that her beautiful child receives all that she needs. My hope and prayer is that someday our families can meet and these orphanage sisters can be reunited.

Today, the third child ever with thalassemia from this orphanage arrives home with her parents with her two sisters. Another miracle. When I first saw her photos, there was something that reminded me of Hannah Joy. Perhaps it was the twinkle in her eye, or her closed mouth smile. When her family learned about her, they raced at warp speed to try to bring her home. She would be a "pre-identified" adoption, something that is not for the faint of heart. Again, God, being in miracles, would ensure that her file was quickly transferred by one of the most ethical adoption agencies I know. This agency understands that the situation for children with thalassemia in Guangxi is dire, and would forego profit in order to ensure this child made it home alive.

Now there are three survivors. Three. Each a gift to each family. I am reminded of the three gifts given by the wise men who visited baby Jesus. Gifts of gold, frankincense, and myrrh. Gifts so treasured at the time, just like these three beloved baby girls. Girls who are actually treasured more than any object could ever be.

There are three more baby girls with thalassemia waiting from this orphanage. Waiting in the midst of a very critical blood shortage. Sweet girls we were able to meet and play with. One of them has been waiting a while, and appears very, very pale. My prayer is that she can survive the wait. That they all can survive the wait. Three more gifts, just waiting to join their families. I hope and pray that next year, just like this year, the world will know of three more sweet girls with thalassemia who are orphans no more. Three more survivors. Three more who beat the odds. Three more precious gifts.




Saturday, December 6, 2014

Loving Meimei



Those who have known me for a long time have known that growing up I always wanted a sister. As a child I would ask my mom to have another baby, and she would lovingly answer that maybe I would receive another brother. I continued to pray that someday I would have a sister. In 2002, with the adoption of Katelyn, God answered my prayers. I would become a big sister to a young girl who tenderly took care of many children to prepare them for adoption. I would receive the gift of having a sister in my life. God not only gave me a daughter in 2002, He gave me a sister. He gave me Meimei.










Over the years we shared our lives the best as two sisters could, by writing letters and by spending time through visits to China. We shared of our major life experiences, and of the little details as we navigated everyday life. We relied on good friends to translate, although many experiences we shared were beyond words. We came to know and understand each other's life story. We treasured the gift of getting together, and we both would cry when we needed to say goodbye. I got the privilege of watching her fall in love and marry. She got the privilege of watching me become a mother to each of my daughters, and of hearing of my dating woes.

In 2008, Meimei found out she would become a mother. She shared with me the details of her pregnancy. We celebrated from afar when in May 2009 she gave birth to her child, a beautiful baby boy. His name was Hanhan. She and her husband were so happy. It was incredibly special to meet my new nephew for the first time, and see his parents faces glowing with pride and joy in fall of 2009.




Over the past 4+ years I watched him grow and change. There are not words to explain the precious times we all spent together. My meimei was a natural mother, and her little boy was thriving and becoming such a wise, kind, and gentle soul. Just like his mother.




On May 9th, a few days after his 5th birthday, the unspeakable happened. Little Hanhan was playing with his cousin around a pond. Both children fell in and drowned. Word arrived from my friends and I could not believe it. I had to talk to Meimei. Somehow this news must be wrong. Someone must be mistaken. Meimei told me about what happened. She was numb. We talked for several hours about him, what her plans were for him. We talked about where he still wanted to go, and what he still wanted to do. Meimei never cried once during the conversation. I grew increasingly worried about my younger sister, and prayed for the chance to get back to China to see her.

A few months ago, in September, I received word from a mutual friend of myself and meimei. She would be traveling back to China to see meimei and wondered if I could go. It was then that I looked at airfare, finding prices that were lower than I had seen in months. I knew God was giving me the chance to go back to see my younger sister. Gone were my fears of traveling to China with four young children.I just knew I had to get there. Meimei was the primary purpose of this trip, and I had to get back to see her. I had to grieve with her. The orphanage work and trainings were secondary. This trip never would have happened if it were not for meimei.

Once I arrived in China, I learned that meimei would be sent to the trainings. My heart broke thinking about how she would be able to handle the topics we spoke of; nurturing and caring for children, warmth and affection for children; play for children. I also knew that the topic of managing emotions and finding support would be important for her to hear. Somehow she was meant to be at those trainings. I just prayed that her tender heart would not be further traumatized, but could begin healing.

Teaching days were long, and I often found myself watching her sitting in the third row wondering what she was feeling. I wished that I could stop and talk to her. I needed patience. A few days later we would have our chance.

The day we were finally able to be alone together I could see the sadness in her eyes up close. I touched her arm and she began to cry. She cried softly much of our train ride as we sat side by side. Finally, 6 months after her young son was taken too soon, she could cry.

Watching anyone mourn is not something that is fun to do. It would be easier to pretend that such a pain does not exist. How I wish that this pain did not exist. My little sister has endured more tragedy in her young life than I can ever imagine, and now her life is forever changed by a senseless accident. I have heard from others who have lost a child that it is the most painful experience one can endure. I completely believe it, without any doubt. I cannot even fathom trying to bear this pain alone, as Meimei has done for the past 6 months. She is unable to express grief with family and friends as I was told that culturally this just is not done. She has been unable to share her pain with anyone, she told me, until I came. As difficult as it is to watch my sweet younger sister's pain, I know that God placed us together 12 years ago knowing that this day would come.

During our trip, we were able to spend 11 days with meimei. We spent one day at the beach. Meimei told me that her son had asked her to take him there one day, so I knew we needed to go. As I watched her looking out unto the vast ocean, I wondered what she was thinking. I offered a prayer that somehow she could put to rest the haunting that her son's spirit was somehow lost and scared or reincarnated. I prayed that she could know her son was in a better place, waiting for her to get there someday. I prayed that somehow she could be comforted and that someday she might feel peace.



When we left China, leaving meimei behind was difficult and I wished that it didn't need to happen. She has agreed to apply for a passport, and to try to come stay with us for a while here in the US. It is a long shot as visas leaving China, even for a short visit, are hard to come by. But I have to believe that there is a good chance God will make it possible for her to come. And thanks to modern technology, we are now able to stay in touch through text every day. I can type in english, she can type in characters, and the program will give us each a rough translation of what the other is saying. It brings me some comfort knowing that I can still communicate with her and be present to her as her big sister despite being so far away.

When I became a big sister to meimei 12 years ago, I never imagined that our lives would lead here. To this moment. I don't think I completely understood that loving her would mean her joy would bring me joy and her pain would bring me pain. Yet, that is the way it is with family. That is the way it is with sisters. I am so lucky that God gave me meimei. I am so grateful for all that she has given to us, and how she has enriched our lives. And I am forever humbled by the gift to stand by her and love her.























Tuesday, December 2, 2014

Knowing Hope

I was going to begin to share about our latest adventures by starting with the trainings we did for directors, deputy directors, and orphanage caregivers. In two provinces. These trainings were huge, really, in terms of both the number of people who attended and also with the information shared through content. My head still spins thinking about it. But, what has been on my heart for the past 48 hours since arriving home has been the babies and children we met. And that is where I need to start.

There is something sacred about walking into a place where orphans live and sometimes die. Orphans. The word is thrown around so casually everyday that perhaps it is easy to forget to fully comprehend the meaning. Walking into those places however, it is impossible not to understand. Sweet little faces, each with a story. Sweet little faces, all without families. Sweet little faces, some very sick. Sweet little faces, some with significant disabilities. Sweet little faces, each one a person, a living, breathing little life.

It is an honor to be able to walk into an orphanage and love the children who live there. It is a gift I will not take for granted. Ever. Others have wanted to visit, and have been told "no" or "it's not possible". Others have tried to get through the doors to make a difference, only to be turned away. I honestly am humbled that I am trusted and will remain true to my promise to offer help and hope. This is a very conservative province, where year after year little lives go unwitnessed. It is a privilege to speak the stories of the children who touched our lives there.

Several days ago, at one of the orphanages, we met a baby. Her little body was so weak. Her abdomen was swollen. She was jaundiced. Repeatedly, we were told "it's too late". - As I picked her up, her body molded into mine. If I put her down, she would begin to softly cry. Her eyes held a curiosity, a sadness, a desperation, a sweetness. I held her as much as I could, and when we returned a few days later, I held her again. As my daughters, friends and I marveled at her, and loved her, we needed to give her a name. We had just met a little one whose Chinese name meant Joy. It was perfect for that baby. For this little one, who carried the label of "too late" we quickly came up with Hope. Hope is perfect for this baby. She embodies true hope that somehow her life is meaningful. She embodies true hope that somehow the future will be better. She embodies true hope that the world will know of her life, despite how long or short it is, and that her life matters.


Since meeting Hope, we consulted with MD's in Shanghai. We were told that they will be unable to help her. Her only chance is perhaps to come here to the US for treatment, possibly a liver transplant. Her orphanage has agreed to take her for follow up tests tomorrow and give us the results to share with doctors here. They have sent us her original liver ultrasound from back in June, when she was only given a month to live. We will now have a comparison and can get a sense of how quickly her liver is becoming damaged. The orphanage staff are giving her the high calorie formula we brought with us from here due to the generosity of so many people who helped to support this trip. People who helped support baby Hope.


As we prepared to say goodbye, I whispered one last time that she was known and loved. I whispered gratitude for her fighting spirit and the time to hold her tight. I whispered sorrow for enduring all that she has endured in her short little life. I whispered determination that we would leave no stone unturned in trying to help her. And I whispered hope that we would one day meet again.



She deserves a chance. She deserves to have people willing to fight for her life. She deserves to be known and I will not let her down. Regardless of the outcome, little Hope, just like all of the little ones we met, has a legacy.


Her life has been witnessed and I will never been the same.



Thursday, October 30, 2014

Life giving

The idea of people and situations being life giving was brought to my attention earlier this week by one of my closest friends. I have been thinking about life giving, and what that means, for most of the week now. A week that has been far from easy. A week where challenges and the frailty of the human condition have been ever present.

For something or someone to be life giving, it must be revitalizing and energizing. The Merriam-Webster dictionary defines life giving as giving or having the power to create or support life. Yet, I think it is more than that. Or, maybe the way I interpret life to be is more than that. I think life giving is something or someone who gives my life true purpose and meaning. It can be life giving to try to love others unconditionally, and watch the guard around a heart come down. It is life giving as I experience the gift of other people, young and old, whose presence I would not want to live without. To be life giving is a joy to the spirit which is felt when doing something meaningful, or being with meaningful people.

I have been grappling with applying the idea of life giving in the midst of hardship. The last school year, after only three months of being at the new school, Mia's first grade teacher requested further testing to be done. She had concerns about Mia's ability to work independently, follow instructions given in the classroom, and make academic progress. It was redemption, really, since up to that point, only three months earlier, I had been told by the former school that Mia was perfectly fine and showing "no disability". A fact that brought such turmoil to my mother instinct. And so, last month, Mia began a rigorous battery of tests performed by the school psychologist and speech therapist. It was a battery so thorough that there was no other conclusion except that these professionals clearly care about my daughter. Yet, as I read through those reports, my heart broke. There was proof, in black and white letters, that my daughter was unable to make progress in the typical second grade classroom. She needed more. Much more. This was not just an ESL issue, or even a communication delay. It was more.

And so, yesterday, a day which was already tough with other things going on in my life, I entered the school building hopeful. Perhaps this IEP meeting would be different. It no longer seemed that I was the only one who saw the issues my daughter struggles with. As I entered the room I thanked the professionals for their care of Mia. They have genuine concern for my girl, and during the meeting it became apparent that they agreed with my mama instinct. Mia is challenged to learn in the typical classroom environment. She was not making "effective progress" offered even by having a classroom assistant in the room to help her. She needs much, much more. And so, Mia will begin daily learning in a small group resource classroom with a special education teacher. She will go back to her big classroom for fun things, such as recess, lunch, arts and music, and physical education. She can have science with the rest of the class. But her reading, writing, and math will no longer be with her typically developing peers. Because she is not able to learn like they do.

I was crushed, again, by the weight of all of this. It is so hard to have professionals say *my* child is not making effective progress. That she is unable to learn like her peers. That she will not, simply, catch up. I started to despair. Until, I was reminded of the words life giving. These people, the therapists and teachers will be, for Mia, life giving. They bring her joy. The school psychologist told me of how when Mia sees her, she runs to greet this psychologist with a huge hug. The nurse told me how Mia happily nibbles on her lunch while laughing in the cafeteria. Her speech therapist told me how Mia is so motivated to try her best with any task given to her. And the new special education teacher, told me how she is so thrilled to have Mia with her for a good part of her day. Life giving.

In the drudgery of life there are people who are life giving. I felt it through the outpouring of prayers, positive thoughts, and encouragement as I endured this week. Those who surrounded me can only be described as life giving. They simply sustain us and bring us hope or joy, just by offering themselves. This is so true for the people in Mia's life. She doesn't care that the road ahead of her is going to be different than the road for her peers. She likely doesn't understand that it will be. Mia just sees the beauty and joy that comes with her own road and the people who are on it with her. She embraces the situation and finds meaning. Life giving.

As we prepare for China I am reminded that this trip will have plenty of opportunity to be life giving. We will certainly receive the gift of others, in both orphans and caregivers, and we will find meaning in what we are setting out to do. Life giving. As I witness unspeakable greed of an adoption agency involved with placing a precious baby girl with thalassemia who waits in Hannah Joy's orphanage, I choose to find a way to be life giving. I choose to be a voice for her, and speak out against the system of making money over saving a life for critically ill children. Life giving. And as I parent my daughter who will be on a different path than most, I will choose to see the beauty in the difference. Through parenting Mia, I will have opportunity to meet others, and undoubtedly, these others will be life giving. For both of us.



Friday, October 10, 2014

Raw Faith

Almost 12 hours ago, I received an email from Hannah Joy's hematologist. He said her liver function tests have been abnormal and he needed me to page him so we could talk. My heart started beating rapidly. This was not what I was expecting.

As we talked, he explained how these tests had been concerning him for about 5 months now. He asked about her dose of Exjade (aka, the black box warning medication), telling me how what he was seeing could be related to it. He told me she is on a pretty high dose of it for her age, so he would think about it. I then asked if her kidney function labs, which have quadrupled since she started this medication, could also be related. He pulled it up to take a look, and said, oh this is definitely Exjade, We will likely do a "holiday" and then start back very slowly. Because, Hannah Joy is otherwise responding well to the medication. Her iron overload is improving. Yet, there seems to be a big cost to my sweet girl's little body.

Since that conversation, my mind has been reeling. The medication I am giving my daughter is affecting her liver and kidneys. It's not a nuisance side effect of fatigue, nausea or diarrhea. It's liver and kidneys we are talking about. This.Is.Hard.

Earlier this week I was told I show a raw faith. Not just the kind of faith that is easier to have when all is going well. But the kind of faith that persists when life is very uncertain. The kind of faith when life is very uncomfortable. She explained that adopting four little girls, two with a chronic, life threatening condition is not comfortable or easy. It requires raw faith. She explained that saying yes to a family mission trip which will likely cost 1/5 of my annual salary requires raw faith. She said that raising Mia, who has a life complicated not only by beta thalassemia major but also Russell Silver Syndrome and learning disabilities requires raw faith. And I think now, given that Hannah Joy is showing serious complications to a medication I am giving her, requires raw faith.

As I have been considering this concept of raw faith, I wonder if it requires acknowledging that sometimes things come up that are completely out of control, and there is nothing I can do but put trust in the fact that this is where I am *supposed* to be. There are no easy answers. Life is filled with uncertainty and hardship. No one is immune to struggle. Yet, somehow, there are mercies along the way. A mercy here is that Exjade is not the only medication to treat iron overload. Hannah Joy could get an infusion pump. I have a good hematologist who understands the liver function test abnormality, and I have the ability to speak up which connected the kidney function tests.

Last night, I did not give little Hannah Joy her dose of Exjade. It is the first time she has missed it in the last seven months, other than one other time when she had a fever. I am diligent about both girls' medications. But last night, I could not do it. My little sweetness asked why she wasn't having her ketchup and medicine. As she placed her little hand in mine I asked God for clarity. I asked for help making this decision about which medication will be the best and safest to give to her. I have raw faith that He will answer.

Thursday, October 9, 2014

Wish list

Next month we will be heading back to China. We are going to be going to Henan as well as to Guangxi this time. I have been told that Henan is asking for help, and is showing needs greater than Guangxi. I cannot even fathom that thought given what I have seen in Guangxi. It is exciting to think that our adventure this time will include a few days in a new place for us.

Many have reached out to ask what we might need or be helpful for us to have on this trip. We are incredibly grateful for the thoughtfulness and provision, and have been trying to prioritize what would be the most helpful. This trip, we can take 14 checked bags, as 7 of us are traveling (our dear friends Ellen and Nate are joining!!). Fourteen! I have become quite the master of packing, and plan to use every inch of space we have while packing the little we need for ourselves in carry on bags. Lord help us as we shlep it through airports, trains, and buses!

Here is what I am thinking we could use:

Similac premature infant nipples (found on Amazon)

Neosure premature infant formula powder

Vitamins, including infant and children's daily multivitamin (some children vitamins with iron and some without iron), and adult daily multivitamin for the caregivers

Sesame Street DVD's (English, and used in good condition is fine)

Infant carriers (used and in good condition is fine)

Any craft type of activity supplies. My girls like to engage with some of the older orphans by making things with them. Some ideas are: rainbow loom bands. Embroidery thread. Beads. Markers. Colored pencils.

Aveeno Eczema Therapy moisturizing cream

Bumbo seats with straps and trays

Any special need equipment (posterior walkers or bath seats)

M&M's. Lollypops.