It's a merciful life

It's a merciful life

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.

Tuesday, August 5, 2014

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.

Sunday, July 27, 2014

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.











Sunday, July 20, 2014

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.