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.

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.

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.

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.

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.

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.

Hope spinning

My head is spinning. Literally. I have thoughts running about a mile a minute, and feel both the excitement and the enormity of the task ahead.

The orphanages in Guangxi have sent me 21 "questions" or topics they would like to have addressed. Twenty-one. At first glance I thought that it would be literally impossible to address them all within the limitations of time that we have. But as I have thought and reflected on these questions, there is a common theme: "how do we help the hearts of our kids"? I'm not talking hearts in the literal sense, but the heart/soul. This is the first time the orphanages have asked directly for training about the emotional aspects of their children. They asked questions such as "how do we handle emotional problems of different ages"?, "kids long for family life, why? and what can we do"?, "how do we help kids who hate their birth parents"?, "how do we help children emotionally who have cerebral palsy, down syndrome, autism, hyperactivity, deafness, or mental challenges"? The fact that they are asking these questions is a breakthrough in my mind, and brings me hope. Hope that the orphanages are beginning to see the importance of the whole child, and are developing the insight that in order to help a child, any child, they need to be mindful of a child's emotional development.

This means I have a great deal of work ahead of me. Coincidentally (*NOT*), last December I was awarded a grant to study with Dr Bruce Perry, who is a leading expert in treating children with neglect and trauma. His premise is focused on relationship based healing. He emphasizes the importance of having stable, predictable, nurturing people as healers for those who have been neglected, abused, or traumatized. Through repetitive nurturing, and sensory based co-activities, he has seen tremendous emotional progress for some of the most traumatized and vulnerable children. At the time I received the grant, I thought that the information would be invaluable for understanding my own children better as they have been impacted by both neglect and trauma, as well as for my professional skills as a pediatric OT working with a high risk population in early intervention. I now understand that I received this grant as preparation for what was to come for November. It is information which will help address the very questions posed of these thoughtful orphanages. I honestly am in awe with how I have received some unknowing preparation which could bring hope to the children I will see.

The task is huge, but what I am realizing is that there is now a new awareness on the part of these orphanages. They truly understand that the emotional life of a child cannot be separated any longer from the physical life. They get it, and this is a big step forward. This understanding, and the change that could possibly come from it, is what hope looks like.

Loving big

Exactly two months from today we leave for China. It still seems surreal to actually write it, with lots to do before we leave. I trust that it will all get done, and am excited to get on that plane and back to our beloved Guangxi. The two needed passports have been sent for, our airline tickets are purchased, and we have begun the work of trying to plan out teachings for the orphanages.

Today, one of my dearest friends told me that I am someone willing to love big. It's an idea I haven't stopped to consider before, at least in application for myself. After it was said, I thought about what it really means to love big, specifically what it means in the context of this trip. The reality is, my daughters and I are going to a place where buildings are full of children whose parents were unable to take care of them. That alone is a thought that makes me shudder under the weight of it. What does loving big look like to a newborn baby who only feels fear, desperate for the familiar sound of her mother's voice? And what does loving big look like to the toddler whose only contact with the world outside his crib is by looking through the bars? What would loving big look like to a preschool aged child who cannot hear what is spoken to him, and can only cry to communicate? What would loving big look like to a child whose body is deformed from years of abnormal muscle tone? And what would it look like to the young teen who has never had anyone choose her for their family? Or what would loving big look like to the teen who feels there is no point to living anymore? What would loving big look like to the young orphanage caregiver who has never experienced any life beyond the orphanage gates? Ever.

There are times when I think about the task before us and know it will not be easy. I am not perfect, so despite my desire to love big, I will fall short. And, as my friend reminded me, a willingness to love big means the risk of hurting big too. The suffering some children experience is heartbreaking. Seeing, holding, talking to, and loving a suffering child only to let them go back is heart wrenching. Each child and person placed into our path is a gift, possessing a unique presence which the world needs to experience. There is a purpose and a reason for each life. I know this with all of my core. And yet, the gifts could be easily missed in the rush of trying to serve each and every child. I know the words "xia yige" (next one) will come quickly when we are working. They always do, and despite my prayer to have ample time to spend with each child, there is never enough.

The need is so great. It's beyond words to try to explain it. Yet, I know that there is a purpose to go and do a very small part within that need. I am determined to try to experience each and every gift placed into our paths as best I can. And I am determined to try to love big, although this really won't come from me. The ability to love big comes from Him who is the ultimate in loving big, and who has opened the doors to make this trip possible. I know that loving big will look like "compassion, kindness, humility, gentleness, and patience" (Col 3:12), and am incredibly grateful for this chance to play a part in trying to love big.

Resistance

Just last week I shared with wise counsel that I didn't think I would be returning to China anytime soon. Just.Last.Week. As in four days ago. I reasoned that airfare was so ridiculously high. That it would be a feat to take four children, two of whom are transfused regularly, back as a single parent to do orphanage work. With my counsel, I struggled to process why this was happening, as returning to give back through orphanage trainings has always been so right. It is a small part of what I can do to help orphans. The orphanages are desperate for trainings. They are overfull with children with a variety of special needs. My wise counsel explained that perhaps that my season of orphanage work was to get me to where I am today. A building block, of some sort, to get me to a "tentmaker position" (her words), where I am doing His work for the four little girls who were given to me. She said, perhaps, the work of that season is finished.

God has a huge sense of humor.

A few months ago, my meimei, a young woman God gifted to me as a younger sister living in China, lost her only child to a drowning accident. I wrestled with the senselessness of a life lost at age four. I wrestled with the helplessness of being so far away. I desperately wanted to comfort meimei. I wanted to be there to mourn with her. The best I could do was to mourn with her by phone, with the help of a friend who could translate for us. I begged her to consider coming to stay with us in the United States, as crazy as that would be. Since I couldn't get to Guangxi, I thought, she could come here. It is something I have continued to pray for.

Saturday night we spent time with some dear friends who spoke about their journey in life. How they thought they would be in one place, only to find themselves in a different spot. My friend spoke of the "resistance" we encounter when something is our will, but not God's will. I thought of the resistance I have been encountering as I looked at those flight prices to get back to China. Flight prices for next summer. For December. For February. Each time I looked, those prices were beyond high. Resistance.

And then, yesterday morning, I got an email from a friend living in Taiwan. She is one of meimei's closest friends. She said she would go back to the Mainland in November, and asked if I would consider going. I chuckled to myself thinking about those high flight prices. But I decided to look anyways. I quickly found the prices are half of what they have been. HALF. I shrieked. What was going on? Where was the resistance? I then quickly emailed my partner in Guangxi since together we do the orphanage trainings. I asked her if she thought we could work together in November. Her words "please come. The orphanages have been asking when you will come back". The resistance is gone, and it is clear where I need to be in November.

This is not what I was expecting at all. I have one child without a US passport, after being adopted only a year ago. Another child has an expired passport. We will need to get those passports, and all of our visas. We will need to arrange with the schools to bring work. There are supplies that the children in the orphanages and foster homes could benefit from. There is a transfusion schedule to plan around. There is my prayer that others from the US will be able to come to help. There is a powerpoint presentation to develop, which must be translated into Chinese. However, I am confident it will all fall into place. We are clearly meant to be back in Guangxi come November.

I know this all sounds crazy, that a single mother of four daughters would take them all back for a short term mission trip. The logical thoughts of "is it right to take them out of school, especially for the one who struggles so much with learning" and "wouldn't it be better to just travel yourself". But I know, in every fiber of my soul, that God is doing something in the lives of my daughters as they work alongside me in *their* orphanages. There is healing. There is compassion. There is the understanding that there is more to life than just themselves. And there are benefits for them beyond that which I can ever even see.

God is good. And funny. And merciful. He has opened that door without resistance. And now we plan to walk through.

That black box warning

I have written before about how hard it is to give my sweet Hannah Joy a medication with a black box warning. Any child receiving chronic transfusions has to receive some type of medication to remove the consequences of those transfusions. Otherwise, the consequences will eventually kill. We essentially have two medications to choose from. One is a pump, worn for 10 hours (while sleeping, in Mia's case) infusing the medication by needle. The other is the medication which is crushed and put into food, which carries the black box warning. There is one other medication recently approved by the FDA, but our hematologist does not recommend it. This is because it requires weekly blood counts due to a side effect which can make the person prone to serious infection and death.

The medication with the black box warning has that warning because it causes very serious side effects, sometimes leading to death. Side effects like kidney damage, including kidney failure; liver failure; GI hemorrhage. Over the past few years, I have come into contact with parents whose children were hospitalized due to side effects from the black box warning medication. One mother told me how her daughter almost died from multi organ failure. I heard this before Mia even came home and I would need to make that decision about which medication to try. In Mia's case, it was easy. We tried the black box warning medication, which did nothing to help her. Our hematologist said that this is the case in 1/3 of patients, so Mia is just one of them. She had to switch to the pump. There was no choice. Mia handled the switch to the pump beautifully. She tells anyone who asks she prefers the pump. She hated the nasty tasting black box medication, and would prefer having a needle inserted into her thigh for 10 hours each night. Other parents' children have not had multi organ failure, but have had hospitalizations. Some for vomiting blood after the medication had eaten away at the child's GI tract. Others for severe abdominal pain. Some for kidney issues. All of these parents had to stop the black box medication and change their children to the pump.

Hannah Joy's hematologist told me that they carefully monitor for any signs of side effects, which brings a tiny degree of comfort. I have also learned that there have been children, and adults, who have taken the black box medication for 8-9 years (it was only approved by the FDA 9 years ago) and have had NO side effects at all. None. There is some comfort in that too.

Hannah Joy hates needles. She has been traumatized by insertion of her IV's, and now expects multiple pokes even when the IV is inserted on the first try for a transfusion. She tries so hard not to cry. But it hurts her. The thought of needing to poke her myself, every night, to wear the infusion pump is a thought that no mother should have to entertain. I am supposed to comfort her when she is hurt. Not cause the hurt. And yet, could I be causing harm when I crush up that medication and feed it to her in her ranch dressing or ketchup?

There is no clear cut answer for this one. No easy answer. Without a doubt we need more medications to choose from. Medications which are both safe and effective. Medications, which don't carry that black box warning or require parents to traumatize their very young children. Even better would be a cure for thalassemia, and other conditions requiring regular blood transfusions.

Hope

It's funny how long ago our vacation seems, when in reality it was just 2 weeks ago when we relaxed and rested in Florida. I think back, and it is like a distant memory. A very special reprieve after a brutally hard year. Maybe our lives are meant to be the unique combination of trials and reprieves, with just enough reprieves to keep us going. Florida was a wonderful reprieve, without a doubt. And now, perhaps, that reprieve was to give me some amount of emotional energy and stamina to deal with the latest trial. An unpredicted trial. And one that has been requiring every ounce of trust I have in God to believe that somehow, this trial is for good. That it is according to His purpose. And it is necessary as part of my growth. Because right now I am not seeing it. At all. All I can see is the harshness of what I am in the middle of. The unfairness of it. And when I step outside of myself to look at it from a different perspective, I see no differently. It is an unfair struggle. And nothing that I have done or didn't do seems to give any explanation to why this is happening.

Instead, I have found myself looking for much needed mercies. And they are there, but I need to look a little harder to find them this time around. Maybe this time, God is teaching me that His mercies might not look the way I had hoped, or the way I want them or expect them to look like. But, they are there nonetheless. Mercies like the best four girls ever. Mercies like the words "I'm so sorry this is happening to you", spoken by a dear friend. The mercies of being prayed for and prayed over. The sweet mercy of having coworkers telling hysterically funny stories of experiences out in the field. The mercy of being home after work and having four girls play without ANY fighting. The mercy of my littlest one's sweet breath and tiny hand being the last thing I remember before falling asleep.

I am not sure why things need to be difficult sometimes, especially when all we are trying for is something good. But I do know that learning comes with each experience, and we are forever changed by our experiences of the day before. Hopefully, someday, I can look back and see the reason and purpose for all of this. I have to believe that. I have to hope. Right? There's another mercy, right there.

Grace and love

I have exceptional children. Exceptional friends. Exceptional family. Exceptional church family. An exceptional life. Never, would I have ever imagined a life like this. I know I have said it before, but it is truth. A life so full. Full of love, joy, laughter, and goodness.

This past week has been a blur. A much needed break after a very long year. It was a time I had prayed for, for months now, and God kindly answered. Me, in my weak human state, worried about this precious time somehow being thwarted, either by illness or by some other type of negative influence. I worried, rather than trusted. I had expectations of perfection rather than expectations of a joyous time which also included merciful provisions, given the imperfections of living life.

One of my dearest friends was willing to help plan this vacation, and accompany me along with my 4 children. Not exactly a rest filled vacation for someone who works very hard professionally and dedicates her own life to helping others. My friend's generosity and thoughtfulness enabled this trip to happen. She carefully researched and found a quieter family friendly place for us, along the gulf coast which is where I had hoped to be. This place allowed memories to be made and reminded me of the fullness of our life. Precious memories of four girls laughing along the seashore and enjoying the calm surf, of six of us enjoying meals together (even in a "fancier" restaurant in our beach cover ups), of talking the evenings away, of watching my oldest daughter help my youngest to swim, of searching for shells and sand dollars, of catsup being hurled through the air, of watching the sunset, and of spending ordinary time together made extraordinary because of a Christ centered friendship. The trip allowed me to forget the struggle of the past year along and focus and live in the present moment. Soaking in all the gift of each minute, hour, and day.

While my daughters and I were relaxing in Florida, other friends decided to become "elves" and place a new flooring in my condo. Actually, as another dear friend said, they became missionaries. They worked selflessly, after long days at their own workplaces, to place a floor that professionals would be envious of. Gone is the ragged carpeting which had accompanied our condo for the past 10 years. Gone is the buckling. A new beautiful laminate flooring was installed, with such careful detail attended to including caulking and baseboards. All done in a stifling hot condo without working air conditioning. Conditions they would likely never admit to, instead telling stories about how fun it was for three engineers to figure out at what angle to cut a corner or how our kitten curiously helped them with the saw.

As we started for home this morning, I was overwhelmed at how loved my girls and I are by those around us. I am incredibly lucky to have the people here who are in my life. People willing to make sacrifices for us without letting on that they are doing so. Author Paul Wadell writes about spiritual friendships, and says "there are some debts we can never repay" to our friends. I know this is true. This past week has proved it. And I am grateful to experience the love of God working through the love, care, and goodness of some very special friends.

Thirty six hours

In 36 hours we are supposed to be going on vacation. As my eldest cleverly remarked "it will be our first time ever on a plane when we aren't going to adopt or volunteer in China". We have planned to go to Florida. For a rest vacation. Because, after the past year and all of the unexpected medical and school encounters, well, I am tired. The beach is a place where I have always been able to recharge and forget the tougher things of life to just experience joy. We all love being there. I want this summer to have a memory for my girls, as sisters, spending 4 days at the gulf coast. I have been counting the days for months, until our departure. I have been imagining the beautiful clear water, with baby powder sand, and watching four girls laugh and play. I have dreamed of watching a sunset on the gulf coast. It is a bucket list trip, of sorts.

Last week, Hannah Joy vomited in the middle of the night. She hadn't eaten much dinner, and seemed tired. I immediately began praying against the domino effect. With 5 of us living in pretty close quarters, dominoes could easily happen. Especially with the dreaded type of bug. By Friday, I was feeling hopeful we had dodged the bullet. Maybe, just maybe, this was a one kid thing. My hopes were dashed when Mia came into my room last night, in the middle of the night, saying she too had vomited. This, within 48 hours of flight departure.

Today, I have wondered if it is selfish of me to want this get away. Of all the weeks for my children to get sick, why now? I have been trying to make sense of it most of the day. Traveling with a cold can be tough to take. Traveling with a vomit illness is my version of torture. In 2008, on one of our orphanage volunteer trips, one of my children vomited the entire time in the airport, on our flight, and in the car. I would rather take a needle through my toe than go through that again. I am sure the child who was sick during that time would agree.

And so, I am looking for mercy here. I'm trying to hope I will find some. Single parenting during acute illness has always been the hardest for me to do. Hands down, it is always the time when I wish I had an extra set of hands. I had hoped that this vacation would be without incident. Without the need to search for mercies. I am trying to trust that it is going to work out, and will cling to any mercy I can get.

My village

Birthdays always seem like a natural time to look back and reflect on one's life, and look ahead to where one is going. When I was 18, I went away to college and met my first "real" long term boyfriend. I assumed we would marry, start a family, and live out our lives together happily ever after. When that didn't happen, I remember times where I questioned and wrestled with God. Why wasn't my experience like my friends who were all marrying their college sweethearts? What was my life going to look like? Would I look back someday and have regrets?

As life moved on and I got my graduate degree, the desire to become a mother grew stronger. I seriously considered adoption. The rest is history. A good history. MY history. A history which is filled with no regrets. I honestly can say that I now thank God that `I did not marry my then boyfriend. My life would have been so different. So, so different. I would never know the joy that now encompasses my life through my four daughters. I would not be the person I have become without them. I literally shudder at the thought of not having them in my life.

Being single isn't always an easy way to go through life. They say it takes a village to raise children. I actually think that the phrase should be expanded to say it takes a village to get through life. For all of us, whether single or married. A village of different roles people, important people, play in our lives. People in the roles of best friends, friends, coworkers, acquaintances, church community. I know in my life, I would be lost without the people who stand beside me. The people who are my friends. Not just "friends" in name, but real true friends.

As humans, we are formed to be in relationships with others. Since the day we are born, we are learning how to be in relationships. First with our family, and then with the outside world. We are not meant to go through life alone. In society, there is a huge emphasis on marriage, with marriage being the quintessential relationship. Understandably so, and I do not dismiss it. But, as I think on my life as one where I cherish the friendships I have made as an unmarried person, I believe there is no less value on the people who have become my deepest friends. Nor is there less value to those relationships I hold with my dearest friends. Those friends who know the joys and sorrows of my life. Those who have seen my faults and continue to stand by me. Those who know my deepest fears, and my greatest accomplishments. The people who I know I can count on whether things are great or in crisis. The people I can vent to, pray with, and laugh with. The people who can stop by and see my house in disarray without judgement. The people who can see my children misbehave and offer encouragement, not criticism. The people I can be most vulnerable with, and know that they will understand and help me grow.

Looking back at my life, I can see how God gifted me through the people He placed in my life. How He prepared me to be in the place where I am at now. This unexpected, yet beautiful place that is my life. Over the years, I have had such authentic friends who have helped me grow into who I am and who challenge me to keep on growing. Friends who have reflected the face of God. Friends who have come alongside with me to China, to experience something I love so deeply that it is hard to put into words. Friends who drop everything to bring food or drink when I am sick. Friends who would willingly choose the chaos of a vacation with me and four young girls. Friends who will pick up the phone to listen to me despite their own hectic life responsibilities. Friends who see me as I am, with four amazing little girls, and love me as well as them. Friends whose thoughtfulness and care go beyond what is deserved.

I am blessed, really incredibly blessed beyond measure, by the people in my life. Truly, they are my gifts. And today, as I reflect back on my life and consider where I might be going, I feel content at where I am. I celebrate these special people who are my friends and the roles they play in my life. I am so grateful for the chance to be in relationship with them, and for the privilege of being a friend to them too. And I am looking forward to another year with some amazing people to share life with.

A new year

We made it. Today marks the new fiscal year for my employer, which means that all of our benefits begin again. I ended last week with zero sick time left. Zero. Talk about panic when it comes to having 4 children where only one illness can bring a game of dominoes. I start today with 80 hours of sick time to be used in the upcoming year. Thank.You.God. The new year is here and it's a fresh start.

Those who know me know how much I love light. And warmth. Summer is, for me, the perfect time of year. It's the time to play together and rest together. The academic year is done, which brings a sense of relief. Huge relief. Especially after this past year. I think back and shudder at all that has happened. But more than that, I rejoice in all the mercies that happened along the way. We were provided for, by God and by friends and family. We were carried through. Mia's school year ended by her new first grade teacher reporting "she's not making benchmarks" and the school special education department asking to do further evaluations for her in September to give her more services that she needs. Talk about a contrast from only four months ago when her previous teacher said she sees "no disability". Lianna also was identified as needing continued help for her dyslexia, and in no way should services decrease, but increase. If we had not gone through the struggle of this past year, none of this would have come to light for either of my precious girls. Huge, huge, mercy. Mia and Hannah Joy's transfusion were able to happen as scheduled. Every single one of them. Despite coxsackie, influenza A, and random fever illnesses, not one needed to be rescheduled. My fellow thal mamas, especially those who are treated at CHB will know the significance of this. Huge mercy. I still have a long road with Mia. I have yet to set up the endocrine testing and appointments needed to start growth hormone. She will need a full body MRI, bloodwork, a hormone challenge, consults with several specialists. Given the enormity of this, and the fact that I am at the point where I need to recharge, I will begin scheduling these things in August. Part of me feels guilty about this, and part of me feels that I need to allow myself a break by just focusing on the thalassemia care for the summer rather than the Russell Silver syndrome and thalassemia. I choose to give myself that mercy. We have been welcomed into the Russell Silver community, where fellow parents can share the joys and struggles of parenting children with this condition. Another huge mercy. Despite all that was happening in our family, Katelyn did incredibly well managing the transition to middle school. She made wise choices with friends. She had perfect attendance. She played on teams for soccer and basketball. She loves youth group. She ended the year with a 4.0 GPA. Mercy. And Hannah Joy, oh my sweet baby girl, is thriving. This year began with something no child should ever need to experience. She was taken from all that was familiar to her. Familiar people, sights, smells, sounds all gone. Removed from her second set of parents, and placed into my family. Her year began with loss. Such a huge loss. Grief. And yet, she trusted. She expected to be loved and cherished. She soaked it in, over this past year, and she has thrived. She is much more secure and confident that she is here now and will never have to leave again. She is trying to believe that "mama never never leave me. Mama always always come back", words that she says each night as she falls asleep next to me. Another enormous mercy.

Our new beginning is here. As a family we will bask in the light and warmth. And try to get some rest. Talk about mercy. I cherish that one, and will look forward to what this next year will bring. I look forward to all of it. The joys, struggles, and mercies.

Space

In 2004 I was the lucky "lottery" winner in my town's affordable 40B housing program. For those unfamiliar with 40B homeownership, it is a program in my state designed to enable lower/moderate income families to purchase homes in more affluent communities where homeownership would otherwise be impossible. My dear friend who works for my town explained the process and encouraged me to apply. At that time, I was a single parent to one daughter, and condos were being built in the town I grew up in. We would qualify for a 2 bedroom condo. It was a fantastic opportunity to buy a condo in a town with a great school system and with more racial diversity than where we were living. I, along with five other families, were the recipients of the opportunity to buy one of these condos at half price, alongside fifteen others who would purchase a unit at full price. It was certainly an answer to a prayer, and has been a tremendous blessing for which I am incredibly grateful.

Over the years, as my family grew, we have adjusted our living space to make things work. When I said yes to bringing Hannah Joy home, I knew that my dream of owning a three bedroom condo or small home where the kids could play outside would need to be put aside. If I wanted to move to a southern state I could likely live this dream. But, given that I now have a child in middle school, whose emotional security centers around consistency, it would be unfair. Besides, I have two children who need to be at our current medical facility for their thalassemia treatment. And I need my amazing support network, so that parenting my girls is possible. So, we have brainstormed and adapted our 2 bedroom condo to fit our family needs. We did not need a dining room given the size of our kitchen, and made that into a third bedroom space. My eldest would occupy this space given her needs of needing to stay up later than her sisters to complete homework. It worked well for a while until, as she tried to complete homework, she was constantly disrupted by her younger sisters as there was no door to close out the sound. We made it through the academic year, and last nite, thanks to some great guys, we "switched" rooms. My eldest now has the second bedroom with a door, my two middles have their bunks in our makeshift third bedroom, and the baby, well, she still sleeps with me.

Last nite, the excitement was palpable. The girls were so excited with their new spaces. The guys even installed a ceiling fan since there is no window in the dining room/third bedroom. The girls LOVED this, especially as Nate put his hand into the running fan to show the girls they would not be hurt if a hand (or head) hit the fan while running. This was added security for Lianna, who occupies that top bunk.

Our mercies continue to abound. There is no way we could have possibly moved all that furniture by ourselves. My friends graciously agreed to come do all the work, after working long days themselves. They never complained once about the collections of things the girls have. They helped move, install, and even vacuum while four little girls all looked on. We are so grateful for their care. And last nite, my sweet girls all slept happily in their new spaces.

Father's Day

I knew something was wrong about half way through this morning's service when my littlest one started saying she was "cold". The last time she used these words, she was running a fever. Sure enough, by the end of the service she was crying in the parking lot to go. With a 102.5 fever. It was the topper to a day which is already hard for us.

Father's Day is hard for my girls, which makes it hard for me too. It is the one time where they feel singled out for not having a dad present in their life. They all know they have birth fathers, and those who had foster fathers know of them too. And, we are fortunate to have a few exceptional male role models, whose presence is deeply appreciated and recognized. But this day isn't "positive male influence day". It's Father's Day. When my oldest was in 1st grade, each child had to do a project. The teacher called my daughter to the front of the classroom. She was asked "what do you love most about your dad"? The question was innocent enough. My brave daughter's eyes filled with tears. "I don't have a dad" she replied. The teacher then remembered I am a single parent. She tried to ensure that the beautiful craft she had prepared with the words Dad on it, could be made appropriate for a grandfather. But, it didn't matter. It was out there, in front of my then 1st grader and her classmates to see. The teacher quickly emailed a heartfelt apology, and I chose to forgive her. I later explained to my daughter that sometimes people make mistakes. Sometimes, those people are even teachers or other trusted people that we feel should know better. Every year as Father's Day approaches, my girls are torn between their desire to honor the wonderful men in our lives, and the loss they experience for my singleness. It is days like today that I wish my life was more traditional and I wish I had a husband. Someone to cherish these precious girls with.

Today's sermon by our beloved pastor was about God as Father. How He cares about us both spiritually and physically. How we are His adopted children, and He loves us as much as He loves His biological child. As I sat there listening, and looking around at the proud fathers sitting around me, I was reminded about how God weaves families together, including my beautiful family. I was reminded of our mandate to care for orphans and widows. Not everyone is called to adopt, but, we are all called to love and provide care. I remembered my call. That call to bring 4 little girls into my life, and trust in His provision. Single parenting is not easy. Single parenting 4 children, all with their own individual needs, stretches me to my max. I worry that tomorrow I will need to be out of work with my sick child, with only 4 hours of sick time left until our new fiscal year July 1st. I worry that due to fever, one or both of my two chronically transfused children will be unable to be transfused this week, which creates havoc in trying to get it rescheduled and more missed time off from work. I worry that I will be unable to meet with my new staff person who starts tomorrow, or the two other new staff who have started in the past few weeks and continue to need my supervision and support. In my limitations, I cannot do it all and I let people down despite my best efforts. Life happens, and it is messy despite how I wish it would look sometimes. If there is one important lesson I am learning through my 4th adoption it is that it is impossible to do all of this alone. Impossible. Which again reminds me of the message so brilliantly spoken today. He is my Father. He is my girls' Father. We are adopted into His family. He is asking me to rely on Him, and He will take care of me. He will take care of us. I just need to trust. And lean on His mercy as He continues to offer His provision through the many people He has placed in our life.

Black boxes

There is something about giving my 3 year old a medication with a black box warning. Something scary. Something which requires every ounce of trust I have in a God who is overseeing and guiding my life and her life. Something which forces me to surrender the fears I have with it to Him.

Hannah Joy's thalassemia is not clear cut. It continuously makes me wonder, and second guess the medical decisions recommended for her. To live anemic? Or to live with controlled anemia but with the significant consequence of iron overload, requiring medication to counter the overload? It's not a determination which is easy to make. Hannah's hematologist is a worldwide expert. He has seen children who live in chronic anemic states. He sees the realities those children endure as they are adults. The realities are not easy. Things like pulmonary hypertension. Chronic pain and breaks from bones which try in vain to combat the anemia. Enlarged spleens. His recommendation is to keep Hannah as healthy as possible with transfusions to control the anemia and avoid these serious complications. There are some very promising trials of treatments on the horizon for her type of thalassemia, he says. So keep her transfused. Yet, with each transfusion, we are allowing toxic iron to build up in her body. Iron, so toxic, it would eventually build up in her heart if not treated. Ironically, even without transfusions, Hannah is at risk for developing iron overload just based on the type of thalassemia she has. Eating foods with iron content or fortified with iron would eventually need to be removed, just as it is with the transfusions. When I consider it that way, there is really no escape.

There are currently two medications used to control iron overload. The first has been around for many years. It is an infusion, which means a needle is inserted into the child and carries medication to remove the excessive iron. The infusion is often 10 hours, 5-6 days a week. Mia uses this medication, and has a "pump" which delivers the medication. She wears the pump while sleeping. Miraculously, the pump does not interrupt her sleep. The second medication is an oral medication. It is taken by the patient once or twice a day. I am told it tastes horrible, like chalk. It is this medication which carries a black box warning. The warning, because, a very small number of patients taking it have developed very serious kidney issues or gastrointestinal issues. As in life-threatening issues.

The decision about which medication to give Hannah Joy was not an easy one. Just like the decision about her treatment plan. Hannah has been traumatized by frequent needle sticks. It began for her as a baby, during times where she entered hospitals without a mother to hold her tight. It continues now as I try to reassure her as her nurses need to stick her for the 3rd or 4th time to get a vein. The thought of me, as her mother, delivering a daily needle to her abdomen or thighs is too much. She is too young to understand, and there are consequences to childhood trauma. Consequences I wish to avoid as she works to become more secure emotionally. And so, the only option left is the medication with the black box warning. Some days, while I crush it up, I ask a quick prayer of protection for her little body. Other days, I live in denial about what I am actually doing.

Hannah easily takes her medication, twice a day. She chooses whether to have it crushed in pudding or applesauce. She likes to have me feed it to her. She endures the chalky taste. And she skips off to the next task of her day.

As a mother, I wish I could take this from her. I wish there were other medication choices to remove iron overload. I wish that neither of my children had to endure what they endure on a daily basis. Yet, the reality is that this is their journey. I cannot spare them from it, no matter how desperately I wish I could.

Faith, Hope, Love, and Joy

As I continue to wrestle with the inconsistent diagnostic information for Mia and have entered alongside fellow parents who are parenting children with both medical and special needs, it is comforting to know that people have been so supportive by encouragement, positive words, and prayers. Yesterday, one of my dearest friends wanted more details about what happened at last Friday's appointment. As we texted back and forth, I relived and reconsidered the information which was said by Dr H. I went to bed a bit unsettled, knowing that I just need to trust that Mia will receive the best care possible. I will see to it. And knowing that she is teaching me important lessons to help me grow into the person I am meant to be.

This morning, this sweet friend called to tell me she had been praying at 3:00am for me and my girls, and said she realized something that she needed to share. What she said was so beautiful, so simple, and yet so profound. She explained that my decision and dream to become a mother began with Katelyn. It required great faith, and deepened my own faith more than I ever imagined. Katelyn exemplifies faith. I followed my call to be a mother to a tiny baby who lived half way across the world. She enabled me to fall in love with her country, making it a part of myself. She helped my faith to grow, as I experienced the opportunities to go back to that country and serve. While serving, I was brought to my Lianna. Lianna, she explained, represents hope. Lianna opened my eyes to the understanding that I could parent a family, not just a single child. When I struggled with attachment issues and deep seeded insecurities plaguing Katelyn, and grappled with how to best parent her, Lianna brought hope. I learned that it was not my failures as a parent which haunted Katelyn, rather, it was the trauma of her experiences. Lianna represented the hope of overcoming trauma, and the hope of family. She shows the hope of communicating feelings, and the healing which comes from sharing. Lianna embodies hope. Last year, I received joy unimaginable, as I was given the unexpected gift of Hannah Joy. I was reminded again of how I thought my family was completed after Mia, and how I had never imagined it would be possible to overcome the hurdles of the lack of finances and confidence I had about both the adoption and parenting a 4th child. Hannah taught me that trusting God sometimes brings joy that is beyond explanation. Hannah is joy palpable. Finally, my friend explained, there is love. Not the easy, looks so pretty love, but REAL love. The love that takes self sacrifice. The love that stretches and brings people out of a comfort zone. The love where patience is required, sometimes on a daily or minute by minute basis. It's the in the trenches, hard work, type of love. Where the payoff brings rewards which are indescribable and transformational. That, she explained, is my Mia. Mia represents a love which is greater than I ever imagined. A love which has required me to move outside my skills as a parent, and lean on others. A love which has required more energy and fight than I ever thought I had. A love that is life changing because it trusts, protects, hopes, and perseveres. It is a love that doesn't fail. My Mia, and parenting her, is giving me this love. She is showing and teaching me this love. Mia epitomizes love.

Hearing this today might have made me gasp. It certainly made me cry. My friend is so wise, and offered an amazing insight into what has been happening through my little family. I am incredibly grateful for the gifts of faith, hope, love, and joy that my girls have been giving to me. I am also humbled by the friends placed into my life. Friends who encourage and support, friends to ride the trauma train with, friends to walk the special needs path beside, and friends who choose to look past imperfections and point out the faith, hope, joy, and love they see. It is just what I needed to hear.

The unexpected answer

Our trip to NYC was a whirlwind trip. We managed to take the scenic route to our friends' home, which included seeing the Statue of Liberty and Laguardia airport, all while on route to downtown Manhattan's Spanish Harlem. I'm still not sure how that happened, but am grateful we didn't end up in DC. It was a clear mercy to be able to spend time with our friends, who thoughtfully gave such care and kindness which quelled my anxiety about Mia's appointment.

For me, the hardest part of the past 6 months has been the unknown. For me, it was not knowing the underlying syndrome or diagnosis. For me, it has been not knowing the prognosis. For me. As I walked into the appointment for Mia with Dr H, I was expecting an answer. My answer. I expected confirmation of what my mama gut was telling me. My gut. What I heard changed my perspective, and it has been something I have been thinking and processing for the past several days. The underlying syndrome is not important. We do not know if the one positive result for Russell Silver Syndrome and the one negative result for Russell Silver Syndrome is accurate, and what it means. Perhaps she has hypomethylation in some cells, but not others. Mia received treatment with whole blood products while she lived in China, which invariably changes the reliability of any genetic testing. Knowing if she has Russell Silver Syndrome, a mosaic form of Russell Silver Syndrome, or an undetermined syndrome will likely be impossible. I heard the words "it is not important". For HER. For Mia. It does not matter if she has Russell Silver, or any other syndrome. What matters is that she is an almost 8 year old child who has developmental disabilities, has special needs, has beta thalassemia major, and is in growth failure. This was my answer. Not what I expected, that is for sure. I walked in not knowing that I had made this somehow about me, and walked away with a clearer perspective.

Although the diagnosis is unclear, the treatment at this time is clear. Mia needs to undergo testing to possibly begin growth hormones. Dr H said, with growth hormones, her body will likely grow. She will begin to eat more because her body needs the calories to grow. Dr H explained that right now Mia does not feel very hungry because she is not growing. It is NOT that she is not growing because she is not eating or taking in enough calories. With growth comes change. Her bones will grow, her muscles will grow, and her brain will grow. This is what it is about. It's about Mia, not me. It's about Mia receiving the best possible treatment given her very, very complicated background and medical circumstances. And it's about Mia's potential to become the best person she can be. Thank you Dr H, for helping me see this clearly, and for reminding me to keep my eyes on what is most important. My sweet Mia.

New York Bound

So, the genetic testing Mia had came back "inconclusive". The lab was unable to process many of the tests. Our geneticist told me she wondered if it is because Mia is chronically transfused. Nothing, not even genetic testing, goes easily for sweet Mia.
Today, I received the written results for the testing. The lab report states "borderline DNA hypomethylation at DMR1, upstream of the H19 gene was detected". Now, from what I understand, loss of DNA methylation is observed in about 1/3 of patients diagnosed with Russell Silver Syndrome. Mia is "borderline". What that means is anyone's guess. Anyone, except perhaps for Dr Madeline Harbison, one of two world recognized experts in Russell Silver Syndrome. Dr Harbison, or Dr H is she is fondly known as, works out of Mt Sinai Hospital in New York City. A mere 5 hour drive from us. On Friday, Mia will be seen by Dr H. For a minimum of 4 hours. It is my hope that she can make some sense about Mia's very complicated situation. There is no other child with beta thalassemia major and Russell Silver Syndrome in the medical literature. No other person alive has both of these diagnoses simultaneously. I think Dr H is excited by the chance to take a look at Mia and get to know her. She sounds hopeful that she can help us, despite the lack of gestational age, birth weight and length, and other helpful information to have in discerning this particular diagnosis. Because Mia was adopted, and we have no information about the genetics of her birth family or of her birth itself, it has made determining diagnosis a bit challenging. As her mother, I need an answer. I need to know if my child has this syndrome. My mother's gut tells me she does, but it is difficult navigating life without confirmation. Everything, from insurance coverage for medications to school assistance requires diagnoses. There are complications which must be monitored for, if she does have this diagnosis. Mia has had enough challenges in her short life this far. She deserves an accurate diagnosis. She deserves to be seen by the leading expert in her suspected syndrome. And hopefully, after Friday, we will have more definitive answers.

Chances

In August 2011, my daughters and I returned to China as part of a mission team working to help orphanages assist their children with special needs. It is no coincidence that my background as a pediatric OT would be needed in the place so close to my heart. I partnered with the incredible organization Grace and Hope for Children (www.grace-hope.org), just as I had done almost every year since 2005, and was close to adopting Mia who was living in a different orphanage within the region with a diagnosis of beta thalassemia major. When we arrived at one particular orphanage, children were everywhere. It was a much different experience than 2008, when I was only shown a few of the kids living there. This time, we were to see every single child. Every single life. My heart broke for all of the children, orphans, who needed to be wanted, cherished, and loved.

The orphanage already knew I was in process for the adoption Mia and had some questions. They were very curious as to why I was adopting Mia, and what the medical care would be for children with thalassemia in the US. As I explained how we live in an area where one of the centers of excellence for thalassemia is, they brought out a baby. He was pale, yet playful. Lianna held him and he looked at me, calmly and cautiously. I was told he had thalassemia, and they never had a child with thalassemia survive. Ever. I tried to encourage them. I told them that there are families who are open to adopting children with thalassemia. That this sweet baby had a chance. Several months later, I was told that this sweet baby had not survived. He never got his chance.

In October 2011, as I was adopting Mia, her orphanage begged me to help find a family for another child with thalassemia who had been on the waiting child lists for adoption for several months already. He was getting sicker and the orphanage was very worried. They already had several children with thalassemia adopted from the orphanage, and were hopeful someone would adopt him too. Nobody had come forward for the boy with a sweet smile who was at the top of his class. He had many friends. He was adored by his foster family. The orphanage pleaded for a chance for him. He never got his chance, and is now smiling that brilliant smile in heaven.

A few months later, I received word from that orphanage we visited in August 2011. They had two more baby girls with thalassemia. They wanted these babies to have that chance. The chance that the pale baby boy never had. They asked me to help, so that they could live. They asked me to find each of them a family, and they would begin the paperwork needed for adoption. The photos were heartbreaking. One of these children was so fragile. So sick. The other had such a sadness in her eyes. These babies needed someone. Someone to come forward and give them a chance. Someone to say yes. I thought back to the baby I met whose eyes seemed to beg me to give him a chance. And how he never got that chance. I started advocating for these two Guangxi girls, and a year later one of these precious baby girls came home to me. She was to be my Hannah Joy. Her orphanage sister came home a few months later to a very special family. The orphanage finally had two survivors of beta thalassemia. First.Time.EVER.

When the orphanage saw these two girls survive, and then thrive, they had hope. Despite the fact that Guangxi typically suffers blood shortage, they committed to trying to transfuse children as much as possible. Three more children entered the orphanage with thalassemia, and they quickly prepared paperwork. And yet, I learned last week that one of them, a precious baby boy, would not survive. Another chance lost.

The thought of my Hannah Joy being one of two who lived from her orphanage, one of the survivors, is a thought that haunts me sometimes. She brings insurmountable joy. A joy that never would have been experienced if she did not survive. If she had been one who did not have a chance, it would have been a void in my life and a void in the world. She is a gift, and it is a privilege to be her mother. Her infectious laugh, her brightness, her sweetness, her inner beauty is gift to all who experience her. And yet, it's a fact I struggle with this week learning that one more life was lost to thalassemia. The world is now void of these other children who did not have a chance. We will never again have the opportunity to experience the love they could have given to us. The hope they could have shown us. And the courage they could have displayed to us.

I am determined to not let their short lives be in vain. Children with thalassemia intermedia and thalassemia major are just like any other children. They develop, learn, are playful, and add so much to a family. I know this first hand. The difference between kids like my Mia and Hannah Joy and other kids, is that they are anemic, and their anemia is not fixable with iron. They need donated blood for transfusions and then chelators to remove the consequences of these transfusions. The transfusions are given under the care of a hematologist, at a hospital, every 21 to 28 days. It is likely Mia will need transfusions every 14 days as she reaches adolescence or young adulthood. These transfusions continue for life, or until the current research enables better treatments or cures.

People will ask me how I do it. How do I parent two children needing such care? I just do it. Just like any other parent would. I take care of them, and we live our life with school, piano lessons, Sunday school, and dance class. It really is no different than learning a biological child or family member needs medical care. Biological children develop chronic medical conditions all the time. Unfortunately, no child is immune to diseases such as diabetes, learning disabilities, cancer, lupus, syndromes, asthma, epilepsy, cystic fibrosis, cardiac conditions, or thalassemia. And yet, we learn to live with these things in our lives, as a small part of what we do in taking care of our children. As parents, we learn to adjust to whatever medical or developmental issue befalls our children. And we do whatever it takes to help them live as normal a life as possible. The issues or conditions never steal the joy our children bring and what they add to our families or give to the world. The same is true for my sweet girls with thalassemia. The world is a better place because they are in it. And I believe that the world is awaiting the gift of the presence of the many other children with thalassemia who continue to wait to be chosen. Take the chance. Choose the gift of a child. A child who just happens to have thalassemia. It's a chance which will never be regretted.