The call

A year ago I was agonizing over a whisper I had received in my soul to adopt a 4th daughter. Literally, agonizing. My friends and family can attest to my state of mind at that time. My coworkers saw my weary self at work each day as I struggled to discern the right thing to do. My pastor, his wife, and some in our congregation saw the stress. At the time, I actually wished that someone could make the decision for me. That someone could tell me what to do. God doesn't work that way, and this call was mine. Not for anyone else to make. But for me.

What started out as advocating for little Yaoyao, an orphan with thalassemia, to find a family turned into a call for me to adopt once more. To bring her into my family. I really thought that God must be mistaken. I wondered if He was a bit nuts. Or joking. I conceived that maybe it was all in my head. I mean, I am a single mother. To three kids already. And one of them has beta thal major. I work full time. We live in a 2 bedroom condo. Wasn't that enough? My plate seemed pretty full to me. I wrestled with what God was doing. Yet, every time I tried to tell myself, "no, that call is not for you" or "no, you already have too much", my spirit was restless. That is the best I can describe it, although it was more than a vague restlessness. It was much more powerful. It was an agonizing restlessness. I would practice to pretend saying "no, I can't do it", and my spirit felt heavy. Part of me wanted to listen to some of my family, to some of my friends, to others who told me I had completely lost my mind. That I should not do it. I wanted to believe them, that they would know better than God about what was best for me, and my girls, and for little Yaoyao. Because, it REALLY, REALLY seemed crazy. What it came down to, is that I had a choice. I needed to respond to that call. And, there were two possible answers. I could follow that call, clearly a difficult call, or I could be disobedient. My disobedience would have been justified to the eyes of the world. It would have been justified to many of those I love. But, what I realized in a sermon today, was that there really is no excuse for disobedience. Even when the easier answer is to disobey. He explained that when God calls us, or wants certain things from us, it often clashes with the values of the world. Maybe it even clashes with the values or expectations of us from those who love us.

Today's sermon resonated powerfully with me, as I relive the year anniversary of that agonizing over my call. The seminarian's sermon focused on Matthew 4:18-22, where the disciples follow Christ. They had an invitation, a call. And they chose to follow. They gave up alot by following. I am sure that their friends and family thought they were crazy. Maybe they even lost some friends' or family support. I wonder if some of those friends and family thought they completely lost their minds. They had a choice, and they surrendered. They surrendered fears, unbelief of others, everything. All for that call. Their call.

God has called me to do this. Of that I am completely certain. I know it deep in my heart and soul. I still receive the funny looks, the inquisitive questions, the disbelief, of how did I KNOW. How did I know it was a call. I just knew. Just as I know there is a God. A God who cares so deeply about me and my girls. The same God who cares so deeply about orphans. That same God who cares about *all* of us, without any exclusions. Others who have heard a call from God, regardless of what that call is, will understand. I think they might have experienced the wrestling. They even might have experienced the agony of choosing. Is it hard sometimes, as I go along with my life? Absolutely. Does that mean there is no joy? Absolutely NOT. I have experienced joy unimaginable with this adoption. Have I received countless mercies from the people He has placed in my life, to prove to me that I am not doing this alone? Without.A.Doubt. It is "not an easy call, but it's worth it" as seminarian Jeff so eloquently explained to our congregation, whenever we follow the specific call God has for us. We are not called to have easy lives, and I actually wonder if the idea of an "easy life" is a myth.

I think today's sermon was a wink from God. He knew how hard that call was. He knew how hard it was for me to just trust Him completely, in a way I never had before, and how it would change my world forever. How deeply grateful I am for giving me my call. For being patient with me. And for giving me a life I would never, ever want to be any different.

My heart girl

February is CHD awareness month. CHD is congenital heart disease. One of my sweet girls was born with CHD, and her story is nothing short of a miracle. A miracle from Him above. A grafting of Lianna Tingting into our family.

In October 2005, I took my first mission trip back to Guangxi. It was a moment I had prayed for as I looked out that plane window with tears streaming down my face, holding my new daughter, my first Guangxi girl daughter who made me a mother, in my arms. I knew I wanted to give back to the people who had given me one of my most precious gifts. I wanted to walk among them, show my appreciation, and offer something back. I thought perhaps what I could give were my skills as a pediatric OT. So, on that October day in 2005, I returned to the place where my oldest daughter spent 7 months of her life before becoming mine through adoption. It was a day filled with anticipation. We were going back to Katelyn's orphanage. Katelyn was only 3, and so many people questioned why she should go at that tender age. I just knew she had to go. This work was something *we* would do. Not that I would do. It was HER place, and became mine because she was mine and I loved her. As we arrived at the orphanage to build a small playroom with developmentally stimulating toys, we were struck by the two baby rooms. The orphanage director had us start with the playroom, but then allowed us to go and love on the babies there. It was surreal. I was sitting on the floor where my 1st born daughter had spent her infancy. Little faces all around us. Clamoring for attention. Begging to be held. And then there was one. One who caught the attention of my Katelyn. She was so tiny. So sickly looking. I picked her up and felt only bones. And Katelyn kept coming to kiss her head. This little baby, I was told, needed cardiac surgery. Her little heart was broken, and she could not gain weight because it was working in overdrive. Katelyn continued to kiss her sweet head. This baby was the ONLY baby Kate would kiss. The only one.

Little Tingting waiting for surgery.


We left Guangxi and settled into our routine back home. I really hadn't even thought about another child. Another daughter. But Katelyn began thinking about a sister. She knew. At the tender age of 3. She knew she had a sister. When she began to ask me for a sister, I told her to pray. Imagine my surprise as she replied "He said YES".

Several months later, my friends in Guangxi who had accompanied us to the orphanage that day emailed to say that the little heart baby had her surgery. Her name was Tingting and she was doing better! And the orphanage director was planning to submit her paperwork for adoption. He wondered if I would consider adopting her. A thought that took my breath away as I looked at her smiling face through the photos my friend had sent to me. How would this be possible? How is it possible to become her mother when thousands of families are waiting to adopt? How would she be matched to me? Would that even be a remote possibility? Could her adoption file go to an agency? My agency? Which agency? My mind raced with thoughts of fear, excitement, and faith.

Little Tingting, after surgery, before her adoption papers were submitted.


I contacted an agency. An agency which came highly recommended to me. Little would I know that the email exchange I had with that agency would be with a fellow single mom, who had just started working there. I would become her first family (and the adoption of my sweet Hannah Joy would be her last). The words of this amazing woman confirmed what I thought He might be saying, what He might be showing me "if you leap, the net will appear". I knew it was Him speaking to me through her words. Telling me to trust and take that leap of faith. Even when it seemed next to impossible that I could ever be matched with precious Tingting. Even though I feared how I could possible manage being single with two (HA! As he would lead me to double that number). I took the leap. And God did what He does to form families. The sick, little heart baby we met a year prior, would become ours. I still get chills thinking about how miraculous she really is. The tiny orphanage she came from, before being moved the bigger one she was adopted from, feared she would not survive the 6 hour drive to that bigger orphanage. She vomited all of her formula all of the time, and was desperately tiny. They were told to send her to the bigger orphanage for hope of a chance at life. She survived that 6 hour drive. She survived the first year of her life, living with two big holes in her heart. She was weak. She was delayed. And God sustained my fighter girl. He led us to her. He chose her as the one who would tug at the heart of my 3 year old, as she gently kissed her head that day in 2005. He worked in my heart, teaching me about faith, trust, and provision.

My Lianna Tingting is now 9 years old. She has been home for 7 years now. Her heart is doing its job beautfully. She sees the amazing Dr Lang at Boston Children's Hospital for monitoring. He said the surgery done in China for her was as good as if it were done in Boston. My fellow heart mamas will know the significance of that statement! Broken hearts had always scared me. Even in college when someone in my dorm was having cardiac trouble, I reacted in fear. If I were ever told that someday I would parent a "heart baby", I would have said no way. It scared me that much. The thought of the heart, which sustains life, being broken used to send shivers through me. How naive I was. Now I know that it is not the heart, but Him. He sustains. He has plans for good. He has brought me far from fearing the heart. I now shudder at the thought of remaining in that fear and saying "no, a heart baby would be too much". I would have missed out on the being the mother to my incredible Lianna Tingting. My sweet heart girl has taught me that. She has taught me to seize each moment. She has taught me to stand firm, even in fear. She has taught me to love everyone, and seek the good in everyone. She has taught me we all have broken hearts, and that it is through Him we are made whole. How I love my miracle girl. My sweet heart baby.

Perspectives

Several weeks ago, the idea was suggested to me that perhaps all that is happening in my life was really not all about me. That all of the struggle over getting the school system to provide services for Mia, all of the medical care which now goes beyond hematologic care, all of the obstacles encountered, and all of the daily life "stuff" is really not about me. Or me and Mia. It was suggested that it is bigger than that, for a greater purpose. Perhaps, even though I could not/cannot see it, my life, these things we are going through, are somehow connected to what God is intending to happen in *someone else's life*...such as one of the educators who is unable to provide help to her, or the nurse practitioner who had blocked access to appropriate medical care for much too long, or the other parents who have come to know me as a mom parenting two kids with thal, or a kid with special needs, or a kid with a possible syndrome. I tried wrapping my mind about that idea, and have to admit that I had a hard time figuring out how it could NOT be about me. Or me and Mia. Or me and my entire family.

Then, that idea came up again. In a completely different context. Where the focus was on a sermon of "Do not lose heart" 2 Corinthians 4:7-16. The pastor suggested that during trials we have a choice of perspective. We can choose to look at trials and suffering as individualistic, or we can choose to look at these things as part of a greater purpose. He suggested, that how we choose to look at something can determine how we feel about something. I admit, I have looked at the struggles with Mia as very difficult. Because they really are. Just dealing with beta thal major was pretty big but at least manageable, but a syndrome on top of that? I'm still feeling blindsided. And weak. But, I am starting to wonder if I look at these obstacles (such as getting her the services she needs) differently, will I feel differently? If I look at this as not about me, will I start to feel differently? Is there something bigger is going on here, through my life? Is this trial an opportunity to display the strength, power, and sovereignty of God? I am beginning to think that maybe it is. Because me, as a single parent, certainly cannot possibly manage all of this alone.

Next Tuesday, my advocate and I will be headed to "central office" to meet with the district wide director of special needs services and the facilitator who ran our last meeting. Our hope is that they will be able to hear what needs to be said, if we are off the actual school turf. It's a long shot. I am asking that they change the elementary school Mia attends due to an unwillingness to give her help. Help she clearly needs based on their own testing. And help she clearly needs due to Mia's numerous medical diagnoses. Last week, Mia's teacher decided she did not need to bring a snack along on a field trip. This was after I sent a note and email asking that she have access to those calories. Her response was Mia can have snack at 9:00am, and eat lunch at 12:45 when they return. On a regular school day, Mia does not go longer than 2 hours without access to calories. Her MD's have asked for accommodations, and it is documented in her school file. But there is no plan in place. No health care plan. No 504. There is also medical documentation of Mia's growth failure. She is the size of a 4 year old, at 7.5 years of age. Unfortunately, there is an unwillingness to accept Mia's needs among the school personnel. I really cannot understand the reason why. It is something I wonder late at night. I have tried processing how this can possibly be happening to Mia with several of my friends. No one can come up with a logical reason.

I am now trying to keep perspective. She is my child for a reason, and I am uniquely equipped to fight for her. I am trying to think that maybe this is not all about us. Maybe this is all about a greater purpose. I admit that I can be hard headed sometimes, and so God has had to repeat themes to me which He wants me to learn and understand. The theme that this latest trial is not about me seems to be repeated now twice. And so I am paying attention.

Transfusion in quarantine

The transfusion Mia and Yaoyao had three weeks ago was in the midst of a snowstorm. As if that was't enough fun for the month, today's transfusion is in quarantine. Due to three of us having Influenza A. Fever, chills, aches, cough, headache, sore throat, exhaustion, and diarrhea all part of Influenza A. Yaoyao, Lianna, and myself all positive. So far, Kate and Mia remained unscathed. Thank you God. We walked into Children's Hospital Boston and were handed masks. Whisked into a treatment room. Droplet precaution sign posted on door, and door closed. Everyone who enters the room has to wear glove, gown, and mask. Our hematologist came down to assess the situation. He decided transfusions can go as planned. Phew. I would have cried if I had dragged us all in here only to have to drive home again. This is the longest I have been able to remain in a position other than horizontal for the past 48 hours. That alone warrants transfusions happening.

With all of this happening, my little one immediately began freaking out, refused to put on a mask. Panicked with seeing us in masks. Panicked at seeing everyone else in masks. Crying softly, and clamoring to me to hold her tight. It makes me think of all of the times she was in China, needing transfusion. Was she scared during transfusions without a mama to hold her? While in the hospitals in China, did she need to wear a mask or did everyone else wear masks? Seeing this today, did this remind her of something? A memory without a clear thought since she was a baby, but a visceral memory none the less? I will never know the answers. It makes me think of the enormity of what my girls have experienced before they came to me. Things they experienced all alone. As orphans. It makes me grateful that now I can protect them as best I can from future trauma.

Blood is now started, and we are in isolation. Mercies have started. Actually, they have been here all along, from the beginning of this latest trial. A friend made grocery store runs for children's motrin and jello. She did this in the middle of Saturday's snow with poor driving conditions. Food and groceries were delivered by a friend from church on a Sunday, before even knowing that I would be unable to move from my bed, never mind cook. My dad made a soup and my mom has been doing pick up duty with the healthy girls. Friends have been keeping us in prayer. Coworkers and friends have been sending texts and offering runs to stop by or run to the stores. Facebook friends have sent constant words of encouragement. A dear friend offered to come relieve me of staying with the girls during the transfusion, so I could go home and rest. An offer I would have taken her up on, if Yaoyao wasn't only 7 months home, and still too fragile in her trust and security. The nurses just brought us dinner, and gave the girls some toys to play with and keep. There are beds we can take a rest on in our isolation room. Just when I think that solo parenting is toughest during times of illness, I am reminded of the village we really do have. The village that sometimes I forget about under the weight of being ill, or when life just seems overwhelming. The village which surrounds me and empowers me to make the right decisions for my girls. The village which makes these life challenges just a tad bit easier.

Grasping for mercies

Twelve hours ago I entered a room in Mia's school. Waiting in this room was the advocate, elementary head of special education, speech and language pathologist, classroom teacher, and ESL teacher. I felt calm and ready to hand things over to God. The meeting began. They asked for a medical update. I explained that Mia's hematologist is an expert in beta thalassemia major. She is receiving exceptional care with him. I explained that he was concerned about her growth failure, and sent us to the endocrinologist. The endocrinologist felt Mia had a underlying syndrome. She saw genetics and genetics agreed that she likely had a syndrome. Russell Silver Syndrome. A pin drop could be heard in the room at that moment. I was not looking up to see individual faces, but saw writing by everyone. My advocate explained that this syndrome carries many of the symptoms we have been seeing with her, from the very slow eating, slow processing, learning difficulties. We reviewed the texting Mia had last June, which showed serious deficits in comprehension, memory, reading, and math. I explained she has difficulties with homework. I explained that she has difficulty understanding words and their meaning. For example, last week's homework required writing sentences from words studied in the week. One of these words was "hung". She understood she needed to write a sentence. The sentence she wrote, was "the boy hung his grandma" (not spelled correctly, but that wasn't the intention for this assignment). I did not gasp when I read the sentence (although wanted to) but asked what it meant. She said "you know, the boy, you know, made his arms like this" (making a hugging gesture). I was calm and collected. I told them I needed help for her. She already has so much up against her with thalassemia.

The speech therapist was the first to respond. She said she did some research into children's language acquisition when adopted internationally. Within 12 months, most children show catch up in the new language, with respect to comprehension. Expressive development typically follows receptive development. For Mia, it seems backwards. Her comprehension has always seemed further behind. She cautioned me that what she was sharing was for children adopted under age 2, not at age 5 like Mia. I reminded her that Hannah was adopted at almost 3, and within 3 months showed above age comprehension. I also reminded her that Mia was developmentally at a 3 year old level when adopted. The speech therapist said she would do some type of "trial" of speech therapy. This means that she would offer 2x30 minutes, for 6-8 weeks. After that time, we will reconvene. Maybe she is thinking that a little boost is what she needs. Maybe. Again, I was trying to be open minded and receptive.

When the classroom teacher gave feedback, she said, as she did at parent/teacher conferences, that she sees no issues in the classroom. She sees her perfectly fine. No.Issues.At.All. My advocate spoke up, and asked about her thoughts about the homework difficulties she has. He said maybe it's a memory issue then. I brought up that she is unable to state her phone number or address, despite working on this for the 2 years she was in kindergarten. The special education program head asked the teacher if she believed Mia has a disability. She emphatically said NO. My heart dropped. How can this be? What was I saying and why is she not hearing? Does she see the homework I send back to her with all of the notes on it documenting the struggle? The advocate asked if she needed to review information with Mia. She replied that she needed to review information with most of the first graders. My advocate spoke up and said that Mia is beginning to become aware of the differences between herself and other first graders. It is impacting her self esteem. The teacher countered, saying she sees nothing but confidence and participation in the classroom. Every single item we brought was minimized or dismissed. Again.

Mia's ESL teacher did show some visible signs of genuine concern. She was unaware Mia was still able to retell basic information like her address and phone number. I told her that every week the reading log asks the question, "the book I like best is_______ because_______". I explained that every single week the because is answered by "I like it". It is rote. There is no explanation about why she likes something. The speech therapist said to give her a choice to see if she can expand why she likes it. I will try that. But I cannot understand why at half way through the school year the classroom teacher feels this is typical. Clearly the other kids are expanding. Hannah can even answer "It funny" at age 3. The ESL teacher responded by saying she will try to add a third time a week with Mia. She wants me to document what I am seeing with her, and keep a log of these things. A very big mercy.

When it was clear that the teacher was unwilling to support any concerns whatsoever for Mia, my advocate spoke up. The testing completed by the school all suggests that her very poor skills are due to ESL. I believe the poor skills are what impacts what I see living with her. Doing homework with her. Parenting her. My advocate said we disagree with that finding that the scores were due to ESL, and request and independent evaluation to be paid for by the school. The school had no choice to agree. They are saying they have a contract neuropsychologist, and he could likely do it quickly. My immediate thought was that he could be biased since contracted by the school system. I have the choice to find an outside person. Although I said I would accept the contracted neuropsychologist, I am considering finding a neutral person without clear ties to the school. I am praying for guidance and wisdom with this decision.

The meeting did not go as I had hoped. I had hoped that with all of the homework errors documented, and with all of the medical issues, they would at least begin development of an IEP. Or even offer her a 504. None of this happened. The advocate told me that this year for Mia is lost. She will not likely get any specialized services. I need to prepare for this. And so, I am grasping for mercies. I know they are there. I have thought about it most of the day, as people texted, called, or emailed to let me know there were thinking of us, praying for us, hoping for the best. Mercy right there. The fact that my advocate quickly asked for an independent neuropsychological evaluation and it was agreed to is another mercy. I guess the school didn't have a choice since there were not going to back down from the "only 2 years of english" issue, but it is still a mercy. The fact that I remained calm, collected, and articulate through the meeting is another mercy. This is my child we are talking about. What she has endured in her short life is unreal. What they are doing to her is a huge injustice. Many kids have an IEP/504 based on beta thalassemia major alone. Mia doesn't. Yet I remained calm, and spoke my piece. I did not react in anger. Big mercy. The ESL teacher is really a remarkable person. I do trust her, and told her this. She is asking to work with me, on the concerns I recognize, and keep in communication with her. Mercy. Mercy. Mercy.

This journey is hard right now. My hopes in the process being salvaged are gone. There was no recognition that Mia has such a long, hard road in front of her. But I see glimpses of His light. I am making myself look at it. Grasping for it. Clinging to it. I know that He is there. He is leading. He will provide.

12 hours...

In 12 hours I will be meeting with the elementary special education supervisor, Mia's classroom teacher, Mia's ESL teacher, and the school speech and language pathologist about their findings that Mia is ineligible for special education services. If it looks like I am counting the minutes, I am. If I said I was completely at peace with this meeting, I would be lying. All of my past experiences in trying to obtain special education services for Mia have been met with such opposition and dismissiveness that all of my faith in the system has been lost. I have no trust in those in charge of educating my child. This is a sad fact. However, the fear that I woke up with this morning is no longer there. It has been replaced by the sense that God is in charge of Mia. He always has been. He protected her while she was living in an orphanage, with anemia so severe that people have been known to slip into a coma and die from it. He guided my family to her, after she waited for 2 years for a family on the waiting child list. He gave grace as we struggled through the first months together. She is His. She always has been. Her needs are known to Him, and He WILL provide for her again.

I will not be walking into this meeting alone. I have hired an advocate who will accompany me. He knows the laws. He knows the rules. He knows what my rights are. He knows the system. He understands the testing which has already been completed. He has said he is literally appalled at how my child has had her needs dismissed. I feel confident that he knows what he is doing. But even greater than that, Mia has a bigger advocate going into this meeting. One who commands us to care for orphans and widows. One who asks us to love one another. One who asks us to offer forgiveness. To offer grace. Even to those who have been obstacles to my child's educational and emotional well being.

And so tomorrow, I will *try* to extend some grace to those who have wronged her. Mia is complicated. She is a child who came here a age 5 with beta thalassemia major. Perhaps because she is not a behavior problem, tries her best to please, and is truly one of the kindest children I know, the educators had hoped she would be ok. Perhaps they really did believe that all of her issues were due to "only 2 years of english". However, the circumstances changed last month with the realization that there is likely a second diagnosis of a syndrome which explains some of what is complicated about Mia. I am hoping that the educators will be able to see this. I am hoping that they will be willing to work together to help her achieve to the best of her ability. I am hoping that I remember that I have the choice to reflect Christ while in this meeting. I choose to surrender to the one who holds Mia in His hands, and trust that He knows what is best for her. I choose to believe that He will provide for her, just as He has always done.

Moving forward for 2014

A recent conversation with a dear friend reminded me that everyone in life has adversity. It is everywhere. Yet how we respond is the important part. How we *choose* to respond. Do we look for the mercies? Do we cherish the goodness amid the hardship? Or do we focus on the enormity? Do we become stuck in negativity? For the past several weeks I have felt overshadowed by the current trials. I lost my focus. There are still moments in the day where my focus is lost, but I understand what my friend was telling me. God never looks at me and thinks "her needs are too much". He looks past the needs, and says I am worth it. Always. That thought stopped me cold in my tracks.

Yesterday was transfusion day for Mia (and subsequently for Hannah, although for Hannah it isn't "life or death" as it is for Mia). It was also the day of the first blizzard of the season. By Wednesday, I was worrying about how I would get into Boston for our 3:00pm transfusion time if the weather was poor. I started worrying about how we would all get home. I worried about the two older girls having school, and possibly being released early. Worry instead of trust. Ah, yes, I still have a way to go. By 7:30pm Wednesday night we got the call that school would be canceled for both Thursday and Friday. Mercy #1. We would all go to Boston for the transfusion. Another dear friend living in Boston offered a place to crash if we became stuck in Boston due to poor driving conditions. Mercy #2. On Thursday morning, I called the hospital to see if we could come in early. The forecast was snow for the next 36 hours. The sooner we could get in and get back, the better. No cancellations yet. However, I decided to get the kids ready, pack clothes "just in case" we could not drive home, and head into Boston in case of cancellation. As we were driving, I got a call saying they would start the transfusion early. Mercy #3. We got safely into Boston, and each girl was easily accessed for IV to begin transfusion. By two of our favorite nurses, Marisa and Diana. Mercy #4. Our child life specialist Jill, heard one of the girls say she was hungry...and out came the lunch menu. For all 5 of us. Mercy #5. An hour later, Mia's hemoglobin was remarkably 9.3 despite being at day 24 since last transfusion. We would be out of the hospital at 4 hours, rather than 5 hours. Mercy #6. I could keep going and going. Minimal sibling squacking. Mercy #7. On the road home by 4:00pm. Mercy #8. Friends and family calling or texting to see if we made it home safely. Mercy #9. No transfusion reactions. Mercy #10. Children who slept the entire 2+ hour drive home, giving me a break to think, pray, and listen to music uninterrupted. Mercy #11. Ect. Mercies everywhere.

As my precious friend reminded me, my children are watching me. They are learning how they could respond, someday, when they face a trial which seems overpowering or too big. I choose to focus on the mercies. I choose to focus on what I can do, and let go of what I cannot. I choose to trust that Mia's needs will be provided for; that our needs will be provided for too. I choose a new beginning for 2014.