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.
Wednesday, May 14, 2014
Wednesday, April 30, 2014
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.
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.
Monday, April 28, 2014
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.
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.
Monday, April 21, 2014
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.
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.
Saturday, March 1, 2014
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.
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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.
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.
.jpg)
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.
Sunday, February 23, 2014
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.
Saturday, February 15, 2014
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.
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.
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.
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.
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