Wednesday, November 25, 2015

Hope in the risk

"Love is always worth the risk".

I wrote those words. Two years ago. Two years ago to the very day that we would get the call that there was a liver donor for sweet baby Hope. I wrote them to the mother of a little girl whose story I had been following. A little girl who was living with half a heart. A little girl who, like Hope, was not expected to make it. A little girl who was adopted from China as an answer to her mother's prayers. A little girl who embodied hope as she defied all odds and human understanding. A little girl who hung onto life and received the miraculous gift of a hero heart transplant. A little girl who stole the hearts of all those around her, including mine. A little girl, who would be known as Lily Strong. A little girl, whose very life was such a huge testimony to the love of our great God.

At the time, I had no idea what would unfold in my life just two years later. At the time, I did not know that it was no coincidence that I was carefully following and praying for sweet Lily and her family. At the time, I had no idea that as I spoke about Lily to my family and friends that God was weaving together stories and lives for His glory. At the time, I did not know that I was being prepared to walk a similar yet unique path. At the time, I did not know that I would ever actually have a hint of what was going through the mama heart of Lily's mom. At the time, I did not know that I would be asked to love dangerously, just as Lily's mom does.

I wrote those words to Lily's mama on November 24, 2013. And now, November 24, 2015 we would receive a call from Hope's transplant team that there was a hero liver for her. My friend found these words and shared them with me, as Hope lay sleeping on my chest awaiting her surgery. I immediately thought of the past year and all that Hope has been through. Six months of the past year were spent in an orphanage and hospice home as an orphan where she was not expected to survive. I thought of how impossible it was that she made it out of China and that she made it home. I thought of how unfathomable that it is that she was still alive and breathing on me. I thought of how miraculous that she has actually made it to the point where this gift is an option. I thought of how fierce my love is for her. And I thought of how I would do it all over again for her. Because she is so, so worth it.

I am still not sure why I was the one chosen to be Hope's mother. But I am beyond grateful that I was chosen. Loving her has taught me so so much, and I am still learning. I have learned to try to live in the moment and find the beauty. I have learned that there is ALWAYS hope. I have learned to choose hope in even the most desperate of situations or when things seem out of control. And I have learned that to love, even to love in the face of enormous uncertainty, is always worth it.

I live now to choose hope. And I live now to choose love. Because love is always worth the risk.

Thursday, November 19, 2015

Six months of Hope

“Orphans are easier to ignore before you know their names.

They are easier to ignore before you see their faces.

It is easier to pretend they’re not real before you hold them in your arms.

But once you do, everything changes…” – David Platt, “Radical”


Friday, November 6, 2015

Ramblings of Hope

Yesterday, we got the call. As in THE CALL. The "possible liver" transplant call. It happened while we were already at Boston Children's Hospital with Hope's sisters who were getting transfused. There is not a way to describe the feeling of receiving that call. There are so many mixed emotions. Excitement for the possibility. Relief that my baby's suffering might be ending through the gift of transplant. Sadness for the family whose great loss is gain for another. Gratitude for the donor family for choosing life. Panic at the prospect of a 10 hour transplant surgery. Awe of God's goodness and provision. All entwined together in one moment. Layered upon that was the knowledge that my baby is sick with a cold and ear infection, and the disappointment that it likely is not meant to be. And the hope that maybe, just maybe, the doctors who would come to examine Hope would say she is well enough to undergo the surgery. Hope that maybe it was, meant to be.

As I explained to our transplant coordinator what has happened since Hope became sick Saturday night, I could hear the concern in her voice. She explained that she would call the surgeon. She would call back. I quickly told the nurses who were caring for my other two daughters what was happening. Oh those nurses. These amazing women who love on our family every three weeks on transfusion day. They knew the magnitude of what was happening. I didn't even need to say. They surrounded me and my children. They distracted and played. In their eyes I saw the emotions. The hope. The fear. The concern. The care. The support. They got it. They knew. One of our dear nurses looked at me when the room was a bit emptier. She tenderly said, "her lungs are so important for this surgery. So, so important." She had heard my baby daughter cough. She had heard her wheeze. And she reminded me of truth. She prepared me.

Soon two doctors came into the room. Hope beamed her huge smile as if to say "maybe I am ok for this?". They asked me what had been happening. They listened to her lungs. I could see the concern on their faces. I knew. Dr Elisofon looked at me. He explained how the risk is just too great with her in this condition. Risk of anesthesia. Risk of necessary immunosuppression. As much as we all wanted her to receive the gift, it wasn't meant to be.

They wanted to run a virus panel (RSV had already been ruled out by our beloved pedi, impressing the team) and get a chest X-ray. And then they were gone. But those nurses, oh the nurses of the CATCR where my girls are transfused, they knew. They understood. They were so sad for us. I told them I was on the roller coaster and wanted off. One said we are not just on any roller coaster. We are on the upside down terror coaster. Flying fast and in all directions.

In the midst of all of this, one of my dearest friend reminded me to seek the mercies. The mercies that are so clearly there. Our team. Our nurses. Our family. Our friends. Our living donor who is willing to come out for transplant surgery where she will donate the tip of her liver on November 18th. All mercies.

Because Hope's liver is so sick at this point, making it hard to breathe, sit, move, eat, and sleep, her team has said we will take the first perfect liver available. I do not know what this means. I do not know how this story will unfold. Will she receive her living donor's liver? Or will it be something sooner? Only God knows. And I need to trust that He knows best.

Driving home I complained to God. It is so hard watching my baby be so sick. I wanted her gift to happen, and it was hard going through what had happened that afternoon. Really HARD. As we got settled back at home, there was a message waiting for me. Another true mercy to remind me that God knew and understood. One of the sweetest young souls I know in this world said that she was reminded of me just that morning as she read Psalm 27:14 "Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD." This came minutes after a text from my wise counsel who said she thought I was so, so brave. Even though I don't feel brave, I knew. I am to continue to be patient and trust. And I can celebrate that another mother got the call. Someone else's very sick baby received a miracle gift last night. Thank you God.

Saturday, October 24, 2015

Riding with hope

Those who know me well will know that I am not a roller coaster kind of girl. I much prefer the merry go round. It's a gentler ride and on horses which is bonus. The merry go round is much more predictable, with some ups and downs, and always moving in a forward direction. Yet, life is not always like the merry go round. More often, it seems, it is like a roller coaster, with some exhilarating ups and terrifying downs and always a bit unpredictable.

The past few weeks have been very much like a roller coaster. There has been the exhilaration of finding a living donor, and then the stall at the top of the hill with no progress towards a potential surgery date. And the quick crash down of having my fears confirmed that Hope is becoming sicker.

We had our 3 month recertification for the UNOS liver waiting list last Wednesday. Children must be re-certified every three months to determine their status on the list. Our doctor does labs every month, so I had an updated score last month. The score is a called a PELD score number, with PELD standing for Pediatric End Stage Liver Disease. The higher the number, the sicker the child, and the more urgent the need for an organ transplant. Hope was listed with a "moderate" score of 18 back in July. It was the same number in August. In September, she moved to 19. And now, she took a jump to 24. Her jump in score is because she is not able to clot her blood as well (a function of livers) and her kidneys are weaker (which happens in liver disease). Despite the fact that she looks SO much better on the outside and continues to flash that award winning smile, she is sicker. Our amazing liver doctor, recognizing that she is sicker, told me that she would be applying for "exception points" for my girl. Exception points are written for by a child's doctor, which allows the child a higher spot on the list. In Hope's case, she has been written for a PELD score of 40. Her doctor explained that because of Hope's huge abdominal size (we had to have 3 different doctors examine it and have another ultrasound done on Wednesday because it is THAT big), her negligible vitamin levels, her portal hypertension, and her poor growth may allow UNOS to agree to place her higher on the list. Sometime this week we will have an answer to know if the points have been accepted.

It was very clear at our appointment on Wednesday that our team prefers cadaveric organ donation. I asked our doctor why. Her answer was simple. That there is no risk to another patient. Surgery is surgery, and even minimal risk surgeries (which our donor's team has said hers would be) carry risk. Other than that, there is no difference in how Hope receives her liver.

I left the appointment exhausted. And deflated. In the past three weeks, we had pneumonia hit our home for two girls, and lice hit for two girls (eek!). Hope is only sleeping 30 minutes to an hour at a time most nights now. Long gone are our two hours of uninterrupted sleep chunks. One fellow liver mom told me that as liver disease progresses, the baby's body becomes desperate for nutrition so wakes up to feed in an attempt to get what it needs. But it can never get what it needs, because the liver is too sick to absorb nutrients. My poor sweet baby girl. The roller coaster has been spiraling down so fast and I wanted my family off. I wanted the merry go round. I wanted to sit on the horse and have just little ups and downs, not this terrifying fast ride. Then I realized, I am not alone on the crazy coaster. God has provided me an army of friends to ride along with me. People praying for us during the ride. People who have been delivering food and meals. A friend who always thinks to offer to pay for the extras at my daughters' school. Friends who are not afraid to come into a home with lice or pneumonia and just hang out with us. Family and friends willing to stay with a child with pneumonia so another could get to a long anticipated appointment. Friends who message, call, and text just to check in and see if anything is needed. Friends who show grace when I cannot return a phone call or am late sending a thank you. A friend willing to take the time to email a vice president and explore financial resources so my children do not have any interruption in their child care routine. A donor who is willing to say YES. A friend who continually puts out our story in order for needed financial support since we have no income or unemployment benefits. A friend who donates her time to take family photos, and another friend who opens her home for a spur of the moment dinner. Fellow liver mamas who tell me that they understand, one who shares data on the kids waiting and takes the time to explain it to me, and others who remind me to live for today. A spiritual director who reminds me that God has the best plan for my sweet baby which is unfolding as it should be, and that I need to be patient and trust that He knows best. My list could go on an on. All mercies. From Him who sits next to me on the crazy coaster.

I am not sure how much longer we will be on the roller coaster as we wait for transplant. I do know that I would not trade this ride, as scary as it is, as it is MY ride. I do not know what corner, hill, or slope we are heading to tomorrow or next week, but I do know there will be more mercies. And I plan to hang on Him for the ride.

Sunday, October 11, 2015

Hope on the red eye

Right now, on the red eye from Washington state to Boston, is our samaritan donor. In the world of liver transplants, there are two ways Hope could receive her gift. One is through cadaver donation, where a deceased donor's liver would be given to Hope. Hope is currently on the UNOS waiting list for a cadaver donor. There are WAY too many people waiting for livers than there are livers available. Since becoming a part of the "liver world" I have witnessed baby after baby die waiting for his or her gift. It is heartbreaking. Hope has been on the cadaver list for three months now. The sicker the baby, the higher they are on the list. Of course being sicker also means a much more critical surgery and recovery. I have seen babies die during the recovery process too. From what we can tell, Hope is 3rd or 4th on the cadaver list in this New England region, and there has been no movement in the time she has been waiting.
The other way Hope could receive her gift is through living donation. This means a person chooses to donate a piece of his or her liver. Hope only requires part of a liver to survive, and every person's liver is comprised of two lobes. If a living donor was found, she would receive the smaller part of a liver and the donor would keep the remaining larger part. The donor's liver would grow back to original size. It is the only organ in the body which can regenerate itself. When I first came home, I was very anxious to see what blood type Hope has. It is the first method of determining whether someone could be a living donor. Unfortunately, I am type A and she is type O. I cannot be a living donor.
Back at the end of August, our regional newspaper published a front page article on Hope's miraculous story in the Sunday paper. It was then syndicated around the US and abroad. Friends shared the article on social media, and the outpouring of prayers and support was nothing short of astounding. Shortly after, dear friends of our family sent a message introducing me to a childhood friend of theirs. This person asked if she could be tested as a living donor for Hope. She said she felt a strong calling or prompting from God to do so. And she was serious. Despite never having met us, she wanted to pursue being a donor.
Our first hurdle was to ask the transplant team at Boston Children's Hospital if it would be possible to consider this person as a living donor. Unbeknownst to me, there is a black market for organs which still exists in this country. Donors can receive payment for donating organs. The team takes this very seriously, and decided they would meet as a team to discuss it. At the time I had no idea what they had to discuss (again, I was clueless about unethical practices), and said to our transplant coordinator that I could not see the difference if Hope received an unknown cadaver donor or an unknown (to us) or known living donor. Perhaps it was that statement that contributed to the teams' agreement to allow us to pursue living donation. They gave us the go ahead to begin testing. Our donor quickly began completing questionnaires and bloodwork. All of the donor doctors and Hope's doctors are completely separate. This way, there is no conflict of interest. The donor is seen at a completely different hospital, and if donation surgery happens, Hope's surgeons will travel to this hospital on the day of transplant with cooler in hand to bring the liver back to Hope at Boston Children's Hospital. All of the donor's tests have been passed, and she is now on the red eye coming for the final round of testing to see if surgery could happen. We could even have a date set THIS WEEK for Hope's surgery. To say that it is all so miraculous and surreal would be an understatement.
Boston Children's Hospital has NEVER had what they call a samaritan living liver donor (samaritan being non family member or close known friend). Ever. There has only been ONE samaritan kidney donor at Children's. Ever. Even the name "samaritan donor" gives me chills. We saw one of Hope's doctors on Friday, and he asked how the liver transplant wait process had been going. I explained to him that our samaritan donor was flying in this week for final testing. He looked at Hope, then looked at me, and was at a loss for words. He then said "that would be astounding. I will keep my fingers crossed". I know it's not the crossing of fingers which is guiding Hope's story. But I thanked him, smiled, and basked in the story that is unfolding for my sweet baby girl under God's care.
Even if this does not work out, the fact that someone is willing to step forward to say YES to God's prompting in order to save my baby girl's life is breathtaking. Never, in a million years, would I have dreamed of this. Only God could orchestrate such a miracle. And I am the luckiest mother to be a part of it. Samaritan. Believe. HOPE!!

Wednesday, September 30, 2015

Sisters of Hope

When I was a little girl, I always dreamed of having a sister. Growing up, my next door neighbor was quite a bit older than me and I loved heading to my her house to hear her stories and to try to imitate her gymnastics. Over the years, I have been lucky to have great friends who became like sisters. Friends who I can share life with, dream with, and tell my deepest secrets to. Sister friends who are not just "fair weather" friends, but those who still love me and stick by me when I am cranky, make mistakes, or when I am not very lovable.

One of my hopes in raising my girls is that they will develop the type of relationships that I have had with some of my closest friends. Watching them grow together and share experiences has been precious. My hope is that some day when they are adults they will look back on their childhood and be grateful that they had each other to grow up with. I don't expect perfection...there is a fair share of normal squabbles and dysfunction...but I hope that they are creating bonds which will never be broken.

My first daughter, the one who made me a mother, is approaching 14 years old. Adopting her changed my life forever on so many levels. It began my calling to do more for orphans. While in Guangxi, I fell in love with the people there and cried when it was time to leave. Her adoption grew my resolve to go back as soon as possible to give back. Adopting her was the start of my family as it would become today. Adopting her brought me to our beloved church community and enabled some of the most powerful relationships for all of us. My first born is bright, athletic, and artistic. She has a huge heart for orphans. She loves music, basketball, and being with her friends. She taught me that parenting is joyous, hard, and one of the most growing experiences of my lifetime.

My second daughter is now 11 years old. I met her when she was just a year old on our first short term mission trip to work in Guangxi orphanages in 2005. Her adoption as a two year old with a congenital heart condition opened my eyes to adoption of special needs children. Her adoption gave my first born a sibling, and all of the joys and challenges that go along with that role. My second daughter is passionate, bright, highly verbal, loves all animals and is quickly becoming vegetarian. She has a special place in her heart for children with Down Syndrome. She loves school, gymnastics, and violin. She also dreams of finding her birth family and traveling back to China more frequently to see them.

My third daughter, my true middle child, is now 9 years old. She has beta thalassemia major requiring life saving blood transfusions every 21 days. She also has other needs consistent with Russell Silver Syndrome. She has been home for 4 years and has challenged my thoughts of what truly matters when considering my children as someday grown adults. The idea of loving God, being kind to others, and being a productive member of society is now my goal for ALL my girls. Being a productive member of society doesn't just mean going to university. Doing a trade skill or even doing volunteer work are also productive for society. This child is a friend to everyone and shows kindness to all. She loves learning about science, helping others, dancing, and singing.

My fourth daughter was the first of my surprise adoptions. Prior to her adoption, I had no intention of adopting again, and when I felt God prompting me I was really very nervous. Scared stiff. I honestly had no idea what was in store as I set back to China again for my fourth Guangxi girl. But God. Oh, how this little one waltzed into our lives and brought such joy! She is a great blend of energy, sassiness, and sweetness. She also has a form of thalassemia so shares treatments with her older sister. The bond they have is without words. She is now five and loves all things pony. She also loves China with all her heart and asks daily when we are heading back.

My littlest daughter, the fifth miracle girl, is only one year old. She has endured so much pain and struggle all alone as an orphan. It is still extraordinary that she is actually here as part of my family. Many days it still feels like a dream. Once considered "unadoptable", many miracles happened and she has outlived her initial prognosis. She is the bravest baby I know and has a smile which is contagious. She currently is awaiting liver transplant for treatment of her liver failure. She loves playing ball, snuggling, sweet potatoes, and making her sisters laugh.

My house is full. My heart is full. My girls have sisters and will always have each other for the ups and downs of life. It is amazingly fun watching them grow, and catching them in the moments where their love for each other is palpable. Life is precious. And often unexpected. And full of hope.

Sunday, August 23, 2015

Seasons of Hope

There is a time for everything, and a season for every activity under the heavens (Ecclesiastes 3:1)...

The past 15 weeks and 3 days of my newest season has been some of the joyous and hardest times I have ever endured. Baby Hope is the most amazing, precious, unexpected gift I have ever had the privilege to receive. Life with her in our family is sweeter, fuller, and so much more blessed. She is adored by all of us, and loves us right back. Watching her face as she sees her sisters wake up or enter the room is priceless. Hearing her squeals of delight and seeing her eyes light up makes my heart swell so much I feel it could burst. I have the five most amazing children on the planet, and there is nothing I love more.

Baby Hope's medical condition requires her to eat a special formula every 2 hours. Around.the.clock. It will stay like this until transplant which could be days or months away. Her stomach is pushed up by the enormity of her huge liver and spleen. She can't take more than a few ounces at a time, and even with just a few ounces she experiences painful reflux that medications do nothing for. It is chronic sleep deprivation, harder than that required of residents studying medicine who are not expected to go months and months with no longer than a two hour block of sleep EVERY SINGLE NIGHT. I am not complaining at all in saying this, but the grueling nature has to be acknowledged. There are days when it seems I can no longer form a coherent sentence and all I can do is laugh at how I sound. There are so many things I hope to accomplish in a day and I am lucky if I can get to a few of them. It is physically, emotionally, and spiritually exhausting. Yet I would do it for years on end for baby Hope. She is so worth it.

Life as I knew it just 15 weeks and 4 days ago has drastically changed. That season of my life is over and a new one is here. Changes, even changes for good, take adjustment. I have survived the betrayal of false friends and rediscovered the love, sincerity, and loyalty of true friendships. My former routine is gone, and I tend to find comfort in routine and predictability. A new routine is gradually being built and along with it a new sense of myself. The stability and security I had back then is gone, and in it's place is a trust that our future is in His hands. The level of trust I am asked to give goes way beyond the half trust my self-reliant self is accustomed to giving. It is hard, but I will try to do it anyways. Through it all, I continue to be reminded to live in the moment, and cherish what I have.

The reminder to cherish what I have in the present became a little more relevant today as I learned our beloved pastor has plans to retire and move out of state. To say that this will be a huge loss for our church community and my family is an understatement. He and his wife are pillars of faith and true hands and feet of God. They have embraced and loved my non-traditional single parent lifestyle and all of my children. They have taught, listened, prayed, encouraged, guided, supported, laughed, and cried with us. For years, they have helped to navigate the messiness of life. I shudder to think of their presence being distant for purely selfish reasons. Yet, the next well deserved season of their lives will be dawning, and we will tearfully cheer them onto a phase of life where they can rest and enjoy God's goodness. Today's news is another indication to embrace the present and those in it, because life will change. It always does. Even when we wish for a trial to end. Or even when we wish the moments would stop in time.