Anchor of Hope

Waiting.

Waiting is so hard. Overall, I tend to be a pretty patient person. However, there are times when that myth of myself is shattered. The adoption of each of my daughters entailed so much wait. It.was.agonizing. And now, I seem to be in a period of waiting again. There is so much waiting. Waiting for lab results. Waiting for team thoughts on those results. Waiting for congestion to clear enough so biopsy can happen.

Then, there will be waiting for biopsy results. Waiting for treatment plan. Waiting for immunosuppresion to lessen so we can "re-enter living". Waiting for the dark times and struggle to end. Waiting for the exhaustion to fade. Waiting for..... Waiting for night. Waiting for morning. Always, always waiting. And I realize, I am falling into the trap. Falling deep into the trap of believing that somehow meaningful life exists on the other side of the waiting. It's the trap that prevents me from living fully in the moment. It prevents me from living fully in the waiting. Because waiting is HARD. And waiting in hard times is even harder. It requires discipline. It requires letting go of the worry and desire to control the outcomes. It requires trust in God that the plan for my life is unfolding as it is meant to be. It requires faith that regardless of the biopsy results He will give mercies. It requires the realization that I am missing out on the mercies of the moment if I am constantly consumed by what is to come.

Hope's liver labs are the lowest they have been in the past 5 weeks. The plan for her has changed several times over the past week. Her team will see what tomorrow's labs show, and plan again accordingly. Parenting Hope is teaching me to be patient while simultaneously remove my focus from the next thing to come. She is teaching me to live in the constant waiting. She is teaching me to focus and just live. She teaching me there are too many uncertainties to place plans, hopes, or dreams on tomorrow. Those uncertainties can unravel me. So instead, she is teaching me that in the here and now is an anchor. The anchor of God will hold me steady if I let Him. He will hold me in the right now of today. I can choose. I can choose to become caught up in the possibilities of tomorrow, or I can choose to see the now in this very moment.

I have so much to learn. So, so, much. Life is whirling by so quickly. If I don't stop and breathe in the moment, I will miss it. I will miss the smallness of the hands which clutch onto mine. I will miss the gentle curves of their faces. I will miss the questions. I will miss the laughter. I will miss the tears. I will miss that they want my attention now. I will miss seeing how light comes from darkness. I will miss the mercies. I will miss being a part of the now that my girls are part of. I will miss it all. And I will miss the anchor which is oh so patient with me as I learn and holds me steady through it all.

Hope and the beast

The.Beast.
That is what rejection was referred to yesterday by a friend of mine as we chatted about life, and I shared my fears about the cause of Hope's recent rising liver values.
The beast.

Last night I learned that Hope's team is also sharing the same concerns about her rising liver values. As soon as I heard our NP's voice, her concern and disappointment was palpable. The values were high. Again. A biopsy of her liver will be scheduled. Because rejection is serious. Serious enough that when her numbers came back high on Tuesday they wanted her back for labs again on Thursday. Serious enough that our NP said they hope to have the biopsy scheduled later today for next Tuesday.

Hope's little body is doing what it has been designed to do. It recognizes something as foreign, and begins a fight against it. Now there is a battle being waged. She has had three different medications to help prevent the rejection beast. She takes her tacrolimus/prograf twice daily without fail. She loves this medication, and loses absolutely none. This week, her labs showed her tacrolimus level was high. Her liver numbers should be lower. Not rising. And so, the process was explained to me by our NP. Biopsy to confirm rejection. Admit to the hospital for high dose IV steroids to hopefully stop the rejection. Discharge home with oral steroids. All while continuing the twice a day tacrolimus. Her immune system will be depleted. Again. We will be under strict precautions for isolation. Again. And to top it all off there was a study published yesterday in the Journal of the American Medical Association discussing the increased incidence of cancer deaths among patients (especially pediatric patients) with solid organ transplants, likely impacted due to immune suppression.

Needless to say, this news was not what I wanted to hear. As I drove home from transfusion day with Hope snuggled happily in her car seat and her two older sisters now looking pink sitting behind her, I wanted to get away. I wanted to sit with my daughters on a warm beach, feeling the soft sand and listening to their giggles as they splashed around in water. Without a care in the world. THAT is where I wanted to be. Not prepping for yet another anesthesia procedure and inpatient stay. Not preparing for the horrible personality changes, albeit temporary, that occurs with a child on steroids. I wanted my happy place. This was just too hard to face the reality that my baby girl is going through. She has already been through the unimaginable in her short 21 months of life. Rejection impacts about 20% of all liver transplant recipients. Of that 20%, there are 5% for whom the IV steroids will not work. The BEAST.

And this morning I woke up with the weight of all of this. And, as I drank my morning tea and did some reading I realized I completely forgot. I just forgot. I forgot about the mercies.

My morning devotional reading was about the story of Moses. Moses is obedient to God's plan, and goes to Egypt to deliver the Israelites. When things get harder instead of easier, Moses begins to question God. The line "If I just follow God's plan, everything should go smoothly, right", struck me. In no way was this ever promised. Being obedient to God and following His plan does not bring easy. That was never part of the deal. As I continued to read, I was reminded to draw close to God in confidence, so I could find MERCY and favor. There it was. My reminder. To look for the mercies.

I forgot. But I was reminded by a good, good God.

We may be facing the beast, but our God is with us. And He will send mercies. Like our amazing, amazing medical team. The team who clearly love my girl. This was so evident in the NP's voice as she delivered the news of the probable rejection. We have a team who will be with us and they will use their knowledge to do the best they can for Hope. We have the nurses on 10 South. Oh, those nurses. We have experienced some of our hardest days under their care, and they are gifts. The thought of seeing some of our favorites again makes the news of rejection easier to take. We will have the clinical assistants, like T, who always manages to bring a smile to Hope's face. Perhaps it is because he accidentally got some of her ascites fluid in his mouth. Yep, in his mouth, as he was emptying her drain. He never even reacted in other than a laugh. T is a gem. We will get to see him again. Our community is already rallying. Encouragement has been pouring in. And one of the biggest mercies of all is that the probable rejection beast was caught early and my baby girl is alive to fight the beast. She is ALIVE. I now have online friends in the liver world who would likely do anything to have their children still living, even if it means fighting rejection. Hope is here. And we will face this.

Walking toward Hope

Eight months ago I would be boarding that plane to bring Hope home. I am not sure the english dictionary has the correct vocabulary word to express the fear I had. I had absolutely no doubt that getting on that plane was what I was meant to do. And I would do it, no matter how panicked I was. But the words in my head would have arguments with each other. Literally. "What are you doing" would be met with "doing exactly what you are supposed to do". Back and forth. Over and over. I think it was the unknowns and self doubt that caused the most fear. Which led to more conversations in my mind "sure you are meant to do it, but can you handle it?" "you know, this is going to be ridiculously hard", and "what happens if....". Again, over and over. I suppose in many ways the fear could be easily paralyzing. The fear could create a roadblock to doing what I knew I was being called to do. Some may even have said that walking away could be justified. Maybe it would just be "too hard".

So I did it afraid. That night eight months ago, as we headed to the airport, we were given a ride by a dear friend of mine who made me laugh. She is naturally just a fun person. Easy to talk to. And she could tell the best stories. As I listened to her and we caught up, I laughed and laughed. For moments at a time, I would forget how afraid I was. Talk about a mercy. Such.a.mercy. By the time we got into the airport and through security to our gate those feelings of fear crept up again in full force. This was it. There would be no looking back. We were going to China, where we would receive Hope. I think it was there, at that gate, that I realized that there would also be no looking forward. No looking back and no looking forward. Only looking at the hear and now. Only looking at the present. And for moments, peace began to ensue. Just as it did during that car ride to the airport when I was fully present and living in the moment.

Hope truly lives in the moment. She has a zest for life that is just palpable. She is such a happy baby. So content. Despite all that she has been through and endured, she loves living. She is my hero. Hope reminds me every day to try to bask in the moment and allow it to remain untainted by the "what ifs" of tomorrow.

Six weeks ago she lay in an OR receiving her gift of life. Today, she lives. Today, I live. Today, we live.

Choose Hope.