Space

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

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

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

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

Father's Day

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

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

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

Black boxes

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

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

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

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

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

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

Faith, Hope, Love, and Joy

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

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

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

The unexpected answer

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

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

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

New York Bound

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

Chances

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

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

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

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

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

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

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

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