Liver disease awareness month

It is hard to believe that next month will mark 3 years since my eyes met the most beautiful baby. A suffering baby. A dying baby. A baby given "no hope"

It was November 2014. I was already single with 4 kids, two requiring ongoing regular medical care, and had no intention to bring home one more child. God had other plans. Our intention was to go and serve. To use my skills as a pediatric OT to serve the caregivers and children in orphanages. And then I met her. Our eyes locked and her eyes pierced my heart. She was tiny and jaundiced. Her abdomen was hard. She had biliary atresia. And during her transplant surgery it was also determined that she had a choledochal cyst (cyst of the bile ducts).

Biliary atresia is a condition where ducts to drain bile (which is made in the liver and necessary for digestion) become blocked. Bile can no longer drain from the liver and instead starts destroying it. This destruction becomes deadly. There is no cure. A surgical procedure to "re-route" the bile into the intestines can be successful for some patients. This surgical procedure must be done very soon after birth in order to give the best chance for success. And even when done early, most babies will still go on to need a liver transplant in order to survive.

Liver disease is beastly. As the bile becomes stuck in the liver, the liver itself hardens and the abdomen swells in size. Sometimes the spleen also becomes swollen. Fluid can build up in the abdomen. The size of the enlarged organs makes it hard to eat and breathe. The bile build up causes intense internal itching, making it difficult to rest. Because the damaged liver can no longer aid digestion, malnutrition sets in. Muscles become wasted. The body's ability to clot becomes impaired risking bleeding to death. Infection is another threat to a baby's life with both infections of the liver and systemic sepsis. These are all of the realities of end stage liver failure.

The only "treatment" for end stage liver failure, which is the diagnosis that most babies with biliary atresia will end up with, is a liver transplant. It is not a cure. It.is.not.a.cure. One condition is traded for another condition with liver transplant. Sometimes I look at my girl and she just looks so good. And she is doing so remarkably well. She is so much better than when she was obviously gravely ill. Yet, the previous issues are traded for new ones. She will continue to need regular lab work for the rest of her life. She will continue to need twice daily immune suppression medications for the rest of her life. This lowers her ability to fight infections. She will continue to need medications to protect her kidneys and combat her high blood pressure which result from her immunosuppressants. She is at higher risk for food allergies and certain cancers. She could lose her liver to rejection. In some ways, it can be terrifying to think of all of the what if's...

Instead, we choose to focus on today. Today, she is running around with boundless energy, all because of her liver transplant and our hero donor. Today she is talking, all because of our donor. Today, she is making us laugh with her incredible sense of humor, all because of our donor. Today we soak in the joy she brings, all because of our donor.  Today, we bring awareness of her miracle story during liver disease awareness month, all because of a great God who wove our lives together.

In many ways I am so glad I did not know God's plan back in November 2014.  I would have been too afraid to meet her knowing what was in store.  It's a thought that makes me shudder.  Because then, we would have missed this.  We would have missed all of this.  The world would have missed out on the chance to watch her miracle life unfold.  An orphan dying of liver disease given no hope becomes a cherished daughter who, against every odd, lives.  She lives so well, with such zest and joy. We would have missed out on on the greatest gift and lesson of having this little one in our lives: loving each other while living each day in the moment.

Hope wins

Sometimes life takes us where we are not expecting.
Sometimes life takes us on a journey we would have never planned or wanted for ourselves.
Sometimes, we end up right where we need to be, despite the resistance, despite the fear, despite the unknown answers.
Sometimes, somehow, goodness comes from the darkness. Sometimes, somehow, beauty does come from ashes. Sometimes, somehow, we rise above the adversity, we rise above the forces against us, and sometimes, somehow, hope wins.

Today, my mighty Mia started a new chapter in her education. Ever since she started her education, she has been an outlier. She tried. Oh, did she ever try, to learn like the "traditional" kids. The amount of effort she put in has been monumental. She was exposed to many ideas and skills, but never to mastery. The result? A foundation with many holes.

The holes became apparent a few months ago at her 3 year re-evaluation for continued special education services. Something inside me told me to really look at those test scores. Something inside of me told me to really understand those scores. As I began my work to figure out the true meaning of scaled scores, standard scores, and percentile ranks for each test, I stumbled upon the seemingly impossible concept...that instead of progress, there was regress. How.could.this.be? I graphed the scores from three years ago with the ones I just received, and there was no avoiding the truth. As I presented it to our team, their eyes grew wide. Clearly, we needed more information. Clearly, these graphs were not expected. Clearly, this was not the picture they had hoped to present. This was not the picture I had hoped to see either. Now, I see it very clearly. A foundation with so many holes. And yet my girl amazingly stood tall on this foundation with a huge smile on her face. Until that smile started to fade.

The foundation with holes was starting to steal the spirit of my girl.

I could only do what any mother who comes to the realization that this is happening to her child would do. I would seek to stop this. I would seek to stop this because this must stop. I had more meetings. I asked questions of parents facing similar circumstances and learned from those who went before me. I studied the law. I used every ounce of resources I could muster up. I prayed. I prayed a lot. I looked for an open door, and when I found it, I crept slowly towards it, with my girl in tow, worried about where I was going and what was being left behind.

I looked for reassurance that I was doing the right thing. After today, I need no reassurance. I know. As I sat and listened, I learned that my girl's new school started 50 years ago as a civil rights movement. It came out of the need for a place for children who learn differently to have a better educational system. Because children, like my girl who was always an outlier, deserve an appropriate education. Because children, like mighty Mia, deserve to make meaningful progress. And she's entitled to it by law. And now, this same school, is seeking to reach even more underserved populations. Namely, to those who could not afford such an education because lack of financial means. The very real package of financial aid which is allowing my mighty girl to attend.

For the first time ever in her lifetime my girl is not an outlier. She is surrounded by peers who learn like she does. For the first time in her life she is in a place where she learns just like everyone else. For the first time in her life, I have heard the words that she is not disabled, but very abled. She and her peers think in ways that the traditional kids do not think, but they are able. They can go on to attend colleges and universities, including some of the top in the country. The holes of their foundations will be filled in. With solid foundations, the academic trajectory is changed. Life is changed. With a foundation filled in, my girl's spirit will soar.

Logistically, there are still so many unknowns and questions to be answered. How do I be in two places at once? How do I manage the weeks where labs and hospital care must occur when the two children who need it are in schools some 30 miles away from each other? Will mediation or a hearing be necessary? How will all this work out? Will this settle into a routine? And although the answers are unclear, I know the One who holds them. I trust the reassurance that let me know we are right where we need to be. And I know that hope wins. It always does.

Going in Hope

I saw the looks. The raised brows. The jaw drops. Yes, I was returning to China for a mission trip with all 5 kids including my 3 year old immunocompromised child. And I was taking another high school student. So, in total it would be myself and 6 kids under the age of 16. All traveling to China, for nearly three weeks, to walk among the needs. It was not for a sightseeing tour, not that that would be a piece of cake either. It would be a working trip. A service trip. Hence, the reactions.

I have thought about what my reaction and thoughts would be if I were on the outside looking in at me and what I was doing. I suppose the questions would enter my mind. Why? Why travel with all of those kids? Wouldn't it be easier to leave the kids at home? Wouldn't more get accomplished without children present? What would possess someone to do this? Has she finally, once and for all, lost her mind?

For some of these questions, I cannot even give an answer. Well, maybe it's that I cannot give an answer that would satisfy the onlookers. Maybe it's that there is no logical answer as to how I CAN do this. Because it really is something beyond human which enables this type of work by a single mother of 5, along with all 5 kids and a bonus kid in tow. That is for certain. It is purely divine although even among some fellow believers it seems that this answer could continue to be resisted and/or questioned.

But then, then there is the evidence. The coming out of the haze of jet lag and looking at the images of what happened. The proof. Of what is happening when my eyes are not on them. This is so much more than me. It always has been. I do not have the control or the power to do what is being done in the lives of my girls. It's impossible and illogical.

The only answer I can give to the onlookers, and to myself, is that it is God doing this work in and through us. And that I will never have all of the answers as to why. We only say yes. And we go. He is doing all the rest.

Two years of Hope

Two years ago today I raced half way across the world to a dying baby. Two.years. In some ways, I had no idea what I was doing. I knew I had to go. I just said yes, and went. Because I knew, I just knew, she did not deserve to be alone in her suffering. She deserved to be chosen. She deserved to be loved. No matter how many days on this earth she has.

In the two years she has been part of us, she has taught so much. I opened my hand to let go of so much, and my faith deepened in ways unimaginable. No longer could I depend on myself or my own competency. It was no longer enough. I had to rely on God. On His hope. And the #choosehope became our mantra.

She is a gift. She is a gift I wasn't expecting. She is a miracle witnessed by my own eyes, defying all odds and expectations.

So tonight, I listen to her steady breathing as she sleeps. I am reminded of all that we have experienced in the past two years. And I thank God. For all of it. For every single moment of it. Cherished moments.

#choosehope

Choosing yes

Yesterday, the China adoption world was rocked by word of the loss of one of our own. Little Ivy Joy was a warrior in the true sense of the word. She was adopted by her amazing family just shy of her 2nd birthday with a very, very broken heart. Ivy sustained surgery after surgery at some of the top hospitals in the country to help fix her heart, including several surgeries at our Boston Children's Hospital. During one of Ivy's surgeries here in Boston, I was able to meet her mom whose very presence radiates His light and love. How lucky Ivy was to have this woman as her mother. Even luckier however, was Ivy's family to have Ivy. She deepened their faith, much like baby Hope has deepened my own faith, and brought such joy. When Ivy was adopted, her family let the world have a glimpse into what it was like to share life with this extraordinary child. Many of us, including my girls, prayed for Ivy when she was in the woods after surgeries. We all prayed praises as Ivy defeated odds and lived. The news of Ivy's unexpected passing has left many of us in the adoption community grieving right along with her shattered family right now. It has left me, once again, considering the power of adoption and life in this world.

You see, Ivy's family made a choice. They chose yes to a little girl who had a very broken little heart. They chose yes when they could have chosen no. In their choosing yes, the world was able to see the power, hope, and love of our very great God as He worked miracles through this very special warrior. Without her family's yes, Ivy may never have been known to this world. She certainly would not have survived in an orphanage in her condition. The world would not have seen this little child grow and thrive in her family as she did over the past 5 years. The world would have missed so much, if Ivy's family did not choose yes.

There are so many choices we can make in the course of a day. We can choose yes or no. And some of those choices can have have significant consequences. Life altering consequences. When I said yes to bringing home baby Hope, it was not expected that she would survive. Many times, others have said to me, that they could not have done what I did. I imagine Ivy's mom has likely heard the same. But the truth is, anyone could do what we have done. It just takes a yes instead of a no. That's what it comes down to, really. It is a choice. Yes or no.

Bringing Hope home was my first experience with saying yes to a situation close to death. I remember the thoughts that ran through my head. Thoughts that this baby deserved to have a family surround her if she were to die. Thoughts that she deserved to be loved for as long or as short as her days on earth are to be. These are truths. These are things that every person deserves. These thoughts overpowered the fears. Because, of course I was afraid. I imagine none of us enjoys going through grief and loss. It is not fun and yes I fear it sometimes. But, it is part of living. Really living.

Once Hope was in my arms, I remember telling one of my BFF's that I wasn't sure I could survive if something happened to her. Just like I wasn't sure I could survive if anything were to happen to any of my girls. The mere thought of losing any of them is too much to even consider. Because that is what love does. It creates a bond so strong that we don't ever want to lose anyone we love. We wonder how we will get through it. We pray to prolong time here in this world. But, the reality of life is that none of us will live forever on this earth. We receive no guarantee with any child, whether through birth or adoption, for longevity of life. None. Should the thought that we will experience profound loss paralyze any of us from saying yes? Will we let the reality of loss outweigh the gain of joy in this life? Especially with hundreds of thousands of children in orphanages or in foster care who are waiting for a yes?

Over the past 24 hours, I have thought how much I wish Ivy's time here on earth was longer. I do so wish that. And yet, along with that, I am so grateful that her family chose yes. Yes. Three letters that changed a family and a little girl's life forever. Three letters that changed the course of the world. Yes.

The big three

It's a day we weren't supposed to see.

My miracle girl.

She is now three years old.

The little one who, back in 2014, was given only two months to live.

She defied the grim prognosis.

She defied the death sentence.

She defied logic.

She defied human understanding.

She is alive.

She is thriving.

She is chosen.

She is precious.

She is oh, so loved.