Saturday, July 2, 2016

Goodness overflowing

The goodness shown to my family over the past year is just staggering. Seriously. Not only have we been the recipients of goodness beyond measure, but it has continued on and on. Over and over. Tangible things. People are still delivering delicious meals. Several times a week.
A year of mortgage payments given and a friend fundraised enabling payment of other bills. Wonderful hand me downs have come in. Classroom extras paid for, all year long. Shopping sprees for the girls which included new bathing suits. Laundry detergent delivered. Laptop given. Professional family photos taken. School supplies came in. Air conditioner fixed. New flooring installed in living room. Grant given for the girls to go to after school and summer care. Christmas gifts given in overabundance, six months apart. Two GALLONS of salon hair products now occupy our bathroom, a first ever in this household. Diapers and wipes continue to come in. Goodness surrounds us to the brim and then gushes over. Again and again and again.

Several weeks ago, as I drove to church, I began to panic. I had looked at my bank account and figured out that we have months left to pay our bills. Thoughts raced through mind. Should I try to find work again? If so, who could care for Hope and manage the at least weekly trips to Children's for on-going medical care? Could I work from home? Or part time? Should I sell my condo and find a place to rent with the equity we might have? Which would not be much given that our condo would be sold as an affordable unit to the next lucky buyer. We came home from church, and as we sat at our dinner table I saw a familiar face outside our porch. She held a yellow envelope. And inside it was cash which would almost cover another month of our mortgage. Several days later, another check came from a high school student who decided to give her first ever working check to our family, which completed the mortgage payment. Then two days later, another check arrived to cover another month of our mortgage. I had not whispered a word of my panic to anyone. Not a word. Even my BFF's never knew what my thoughts were on that Sunday morning. Only God knew. Just God. The same God who works through people. It is just astounding. And a huge reminder that God knows EXACTLY what we need. Always. And the goodness is just overflowing and overflowing.

Wednesday, May 25, 2016

Six month liverversary!

Six months ago today I walked into the OR at Boston Children's Hospital holding my youngest daughter. I held her hand as they placed the mask on her face waiting until she fell asleep before leaving. Whispering that it was ok, that I loved her and would see her when she woke up. That her new hero liver had arrived and she was in good hands. As I left that OR to begin the 10 hour wait for the surgery to be completed, I said prayers of thanksgiving that the day had arrived. That she had made it. That her miracle was literally unfolding before my eyes.

Entering the family waiting room on the third floor I saw eyes and faces that mirrored my own. Fear, joy, thanksgiving, hope. Over the hours, families began to dissipate, until late afternoon when there were just two of us left. The family sitting next to me was awaiting the completion of their son's brain surgery. A procedure to remove half of his brain in hopes of curing the deadly seizures that were racking his body day in and day out. We both experienced enormous sighs of relief when our children were finished around the same time. And were taken to the same ICU where we would rejoice at our mutual surgery successes. His mom and I checked in on each other until we were both moved to the regular floor on the same day several days later. It was nice to have someone who knew the exact emotions I felt, at times without either of us even saying a word.

Hope's team has characterized her post transplant course as "rough". They have met and decided that due to all of her complications we are not to go to do volunteer orphanage work in China this summer as we had hoped. Just this week, Hope's liver function tests are again worse. We are back to weekly labs under a very careful eye of our team. Thankfully, they were able to rule out PTLD in her tonsils and adenoids this week, a huge mercy. That said, PTLD continues to be a real risk and we are having bimonthly checks of her lymph nodes, which is one of the primary spots of manifestation. There are times when the worry tries to sneak in, and I must purposefully focus on Him and live in our now.

Looking at my baby girl, no one would ever suspect that this battle is being waged in her body. She is so happy. She loves life and energetically explores and interacts without a care in the world. She exudes joy and draws people in. She is a miracle, through and through. A miracle for the world to see. We cherish the gift of life our donor has given to my precious baby, and take not a second for granted. Though our "rough course" continues without any end in sight, I would not change a single minute of it. She is worth it. We are living life. And we are so grateful to be able to live it.

Tuesday, May 17, 2016

Yes in Hope

People should always come first. Before anything else. That is my hope to teach my children. Which is not an easy task in today's world when there are so many other distractions and the message the world sends is to ensure self comfort and a big nest egg. I can be just as easily distracted thinking about the things of this world, whether that is a 3 bedroom instead of our 2 bedroom home, a college education or weddings for my children, or a vacation. However, I know I am not to put my priorities in these things, so I try not to. And it is hard.

I learned a few months ago that orphanages are desperately awaiting our teachings. And that an orphanage with perhaps some of the poorest of poor conditions has asked us to come. It's a place we have never been, with over 300 children in care. As I thought about this and considered the last year of my life, I think many will feel I would be more than justified in saying no. I can actually hear the encouragement to say no. Perhaps some would even beg me to say no. The excuses I could provide would be valid....I have a child who has had a liver transplant and is immune compromised, I am unable to work right now and we are down to our final less than a year's worth of mortgage payment savings, I have already done "enough". As I dig deeper into those excuses, I find that all of them propose putting something else before people who wait for help, whether that be fear, money, or selfishness. People who are in need. People who are in need of skills and ideas that can be shared. People who need to know that they are loved and valued because they exist in this world. I would be a hypocrite to want to teach my children that people come before everything and then turn around and say no. So, we say yes being fully afraid.

It is easy to fall into the trap of believing that someone else will step up. That someone else will say yes. That someone else will go. That someone else is better equipped. That someone else has more skill. That someone else should do it....
These thoughts may lead to a type of stagnation, with no movement forward and no help given. So I am trying to teach my children to avoid this trap and say yes despite our shortcomings.

When we were going through Hope's transplant evaluation, time and time again we were told the whole purpose of organ transplant for a slowly dying child was to live. To give the chance of living. Not to give the chance of living in panic. Not to wait in fear for rejection or lymphoma. But to live. Live now. So we say yes to living in today.

Today, we prepare. Today, we hope. Today, we say "send us, we will go". Today, we say "yes, we are willing to be present for people". Today, we are willing to be hands and feet. Today, we say yes. Because people always come first. If I can teach my children this, there will be no better nest egg to leave them with.

Saturday, May 7, 2016

A year ago...

May 7, 2015

May 7, 2016

Sometimes there are just no words.... #only.God #choosehope #miracle

Sunday, May 1, 2016

Heading to a year of Hope!

One year ago today, the shocking, unfathomable, jaw dropping word was uttered. Yes. China said YES. Yes! Yes, I could become the mother to baby Hope. For however long she had to live. To say that day was surreal would be an understatement. Initially I was in disbelief. The odds were so stacked against this happening. How.did.this.happen?!? How was she still alive at 13 months old?!? Only.God. There is no other logical explanation. As the reality began to settle in, my heart leapt with a sweet combination of joy and fear. And franticness, if that is even a word. There was so much I needed to do. I needed to tell my parents. I needed to tell my employer. I needed advice from the palliative care team. I needed to find flights. I needed to get to China. Five days later, I would be on that plane to travel half way around the world to receive a baby so sick that I, along with others, was not sure she would make it out of China alive. All because China said yes on this day one year ago.

So much has happened over the past year that it is staggering. As I look back to photos of Hope's first days as my daughter, it is shocking to me to see just how sick she was at that time. She was so sick. So, so sick. It is no wonder the US consulate issued a same day visa, which almost never happens; and we were asked to leave the plane to come home home three times. Somehow, my eyes were protected from truly seeing the reality. Someone at our beloved pediatrician's office said that I was blinded by love. Protected, in a way, so that I was able to do what needed to be done. I think she is right. He protected my mama's heart in a way that I would be able to face the task at hand. Otherwise, I may have been too scared to proceed.

There have been so many valuable lessons learned over the past year. A year which has been filled with some of the most joy filled moments of my entire life. It has also been filled with some hard moments of struggle. How can moments which take a breath away with such beauty and joy be intermingled with such struggle? Because. Because that is the essence of life and living to the fullest in this beautiful, broken, world. There will be times of sweetness so palpable that the moment is to be savored forever, and there will be times of pain that there is a wish to seek relief of dissipating immediately. Living life in this past year, I have come to believe that joys will always be intermixed with moments of hard. The hard does not dismiss the joy, nor does the joy negate the hard. There is just coexistence. My task, I think, is to continue to just be in it, learn what I need to learn from it, and focus on what I should be focusing on.

I have so many choices, I am learning. Choices to see the mercies, knowing they are always there. Choices to be in the present. Choices to find joy. Choices to laugh. Choices to cherish memories and understand that all seasons will come to an end. Choices to be grateful. Choices to forgive and ask for forgiveness. Choices to listen. Choices to reach out of the comfort zone. Choices to see goodness. Choices to ask for and accept help. Choices to take risks. Choices to always put people over things. Choices to recognize that this life is but a blink, and every moment counts. Choices to say yes to "impossible" ideas for kingdom building. Choices to offer help. Choices to try to make the world a little better than it was found. Choices to live life to the fullest. Choices to see the people in life as the greatest gifts. Choices to choose Hope.

So many times it has been said that my response to China's yes a year ago has saved Hope's life. While I don't discount that God performed a major miracle for Hope, one where I was gifted the role of her mother, the reality is, that response has also saved mine. I have learned and continue to learn so much. My faith has deepened and strengthened beyond measure. I am changed and know He will continue to work in and through me. What a year. I wouldn't trade it for the world.

Saturday, April 9, 2016

The joy stealer

Worry is a joy stealer. I know this, because I have been living this for the past few weeks. As baby Hope's liver function tests have been trending upwards into abnormal range again, naturally, I began to worry. Endlessly. I began to question why. I began to wonder what was going on inside of her tiny, growing, and perfectly imperfect body. The fear has bordered on consuming. Actually, it has become consuming.

Hope is still on steroids and has been since the rejection beast was diagnosed back in January. Our team uses a long term taper after high dose steroids to gradually wean away in hopes of keeping the rejection at bay. Her prograf dose (antirejection medication) is increased to a high level in order to give more assurance of taming the beast. All seemed to be progressing nicely. Her labs were normal. We decided to plan a much needed road trip to our favorite place on the planet, to decompress and relax as a family after a long year. Our team gave us their blessing to go, as long as things remained stable...

Hope had a liver biopsy last week to further confirm that she is in rejection again. Her team was feeling confident that rejection is what we were looking at given her abnormal liver tests. They explained we would do another high dose steroids by IV in the hospital, and add a second medication to help fight along with the prograf, since Hope cannot continue to remain on steroids long term. Steroids are too dangerous. The team hoped we could do the steroids, add a second daily medication, and then be on our way for our road trip. Only now, she has been anemic. Her blood clot time is slightly elevated. And her Epstein Barr viral load (EBV) is not decreasing. Instead of getting a call for hospital admission the day following biopsy, our team called to say the results were still pending. Yesterday, they explained that yes, she does have mild rejection again, but they are also concerned that she has Epstein Barr hepatitis along with it. And the biopsy results for the hepatitis would not be ready until last night. This time, it is not a case of if she has EBV hepatitis, but how severe it is. Initially, they decided that a plan would be made today about treatment course. A few hours later, they called with a new plan. Because having both rejection and hepatitis is very complicated and delicate to treat, they decided that rather than have only two of Hope's doctors decide how to proceed they would rather have all of her doctors weigh in. That speaks volumes as the two doctors who would have made the decision include her head surgeon and one of the amazing liver doctors on our team.

Having both EBV hepatitis and rejection is a difficult place to be in. Treating EBV hepatitis includes lowering her dose of Prograf, giving antiviral, and IV immune boosters. Treating rejection includes further suppression of her immune system. These are completely opposite, incompatible treatment plans. Hope's team will decide which is more pressing to treat. By treating rejection, her EBV could ravage her body causing the dreaded PTLD (post transplant lymphoproliferative disorder which includes lymphoma). By treating EBV, her rejection could worsen and she could lose the very organ which has saved her life. It has become easy to fall into the slippery slope of constant worry.

Last night, as my BFF and I texted at 2:00 am, I realized that the worry was stealing my joy. Because I am allowing it to. The choice is mine. The reality is that there is no control over viruses which get into little bodies and replicate. There is nothing I can do to change the fact that Hope has these two battles going on inside her beautiful hero liver. Channeling my energy into something I cannot control is futile, and will suck me dry. My task, I think, is to put the worry aside. I know this is not easy. I am not a superhero or a saint. I am just an ordinary girl serving an extraordinary God. A God who continues to shower me with mercies and is patient with me as I learn and fail. So I will choose to try to put the worry aside. It is a choice I can make and put effort into. Instead of keeping my focus on the worry, I can keep my focus on the gift of today. The joy in today. The hope in today. And whether the time is short or long, I will treasure each and every moment I get with my sweet baby girl.

Wednesday, March 9, 2016

Two years ago....

Two years ago a precious baby girl entered the world.

She would go on to defy all odds.

She would go on to collect the hearts of those who know her.

She would go on to show that love is worth the risk.

How I hope and pray that her first mother knows her baby daughter is alive.

That there was hope.

That she will always be cherished forever.

And that her baby girl has changed the world for the better.