Thanksgiving

Sovereign God
A risk to take
All things made new
Beauty from the ashes
Beauty in brokenness
A life that matters
No longer an orphan
A baby now known
A daughter dearly loved
The samaritan offer
A selfless donor and family
A hero liver
Always, always hope
It was not "too late"
Toxins gone
Whites of eyes
Pruritus a distant memory
Healing
Miracles in the midst
Company on the crazy coaster
A community who rallies
Exceptional care
Meticulous in every detail
Liver families
Tender touch
Outpouring of love
Offers of help
Friendly smiles
Understanding of pain
Whispers of prayer
A new day dawning
Precious moments in time
Feelings of peace
The ability to choose
A source of Hope
Rejoicing in life
Eucharisteo

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.

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”

#nationaladoptionmonth
#sixmonthsinmyarms

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.