It's a merciful life

It's a merciful life

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.







Saturday, September 20, 2014

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.

Sunday, September 14, 2014

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.

Monday, September 1, 2014

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.









Sunday, August 10, 2014

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.