Tomorrow I may be told my child is going to die. “Fingers crossed.” “Well, let’s hope for the best.” On and on the responses to this reality go. No one wants to hear it. No one wants to have to look that possibility straight in the face. It is no longer some peripheral possibility. There is an air of “you can’t say that…you can’t talk that way…you have to stay positive.” Allistaire Kieron Anderson came from my flesh. I felt her at 14 weeks and I have to face the real possibility that this child that I love with my whole heart may soon be gone. I am the one who will have an empty car seat, a room that was just prepared with a big girl bed and is now unused. I am the one that will have only one little girl, a sisterless child. Our family will only require three chairs at dinner. I am the one who will have pictures of a face that will one day have to be explained. I may have to drive 700 excruciating miles home to Montana to eventually bury the flesh I have so intimately cared for in every detail for the last 41 months. I cannot look away from that. I look at her sweet face. I listen to her adorable voice. I watch her mannerisms and I know I must treasure them. They may soon be lost. I know the faces of those who have died, the names of those that are no longer with us no matter how strong they were or how positive their parents remained. Sara. Ruby. Mia. Johanna. Mario. Nolan. Jaxon. Benton. Pantpreet. No matter how strong we are, no matter how many resources we can mount, sometimes disease overcomes it all and steals away our beloveds. It feels like tomorrow is a sentencing. If the verdict is death, they take her out to the yard. There is no appeal process left. I didn’t sleep well last night. I was restless and had scary dreams. Tomorrow might be a day of ecstatic celebration or it may be the hardest day of my life so far. Tomorrow evening may be cause for ordering take-out from an amazing restaurant. Tomorrow evening – well, I cannot even fathom the intensity of that pain – like having the flesh torn from your bones. The doctors are talking about us being discharged next Monday. Today marks the 142nd straight day in this hospital. I want to be so excited about finally being at this point and being able to at last live outside these hospital walls. Will I be packing away her clothes and shoes and toys with joy and victory or in sorrow and defeat? Good news tomorrow is no guarantee of future days with Allistaire, but it would be a phenomenal accomplishment. It would be worthy of untold rejoicing. I think often of how many other families, how many moms and dads, walk these halls waiting for results, waiting to behold the direction of their lives. I am merely one of many who face such things. I have been the mother who was given the gift of walking out of these doors, child in hand. I may be the mother who walks out essentially empty-handed.
Today at 10am, marks Allistaire’s eleventh bone marrow test. Unlike all previous bone marrow tests, this one will go to Fred Hutch for both morphology and flow cytometry because she is now a bone marrow transplant patient. This means that we will actually get the more accurate, precise, flow cytometry test results first. We should have results sometime late tomorrow. I need to ask that no one, not even family and close friends, contact us asking for results. We will make known the results in the timing and way we are able and feel is best. So no emails, phone calls or texts asking for results. Sten and I will be together tomorrow. We will wait in the quiet room down the hall from Allistaire’s room. Dr. Burroughs will come at an agreed upon time and she will give us the results. Please honor our need to process this in our own way and our own timing. If tomorrow you feel the acrid taste of nervousness or the claminess of hands who wait, know that you are tasting our reality in the slightest and allow it to grow your empathy. Sit with it and let it bother you. Pray for us. Pray for our hearts before the Lord. Pray for peace that passes understanding.
One of the hardest things I have learned these past nearly five months, is that knowing God doesn’t take away hard realities and pain. We want to believe that as children of God we are exempt. We want to believe that having an eternal perspective will make the pain of this earthly life so much less. We want to think that we won’t have to have so much sorrow and loss – that we will be protected from such trials. Who are we to think that we, who have the Lord, should not have to know the sorrows of those who don’t know God? God allows us to walk these wretched roads because there are others who also walk them. There are others who walk in darkness and are desperate for the light and hope. I know the God who turns this darkness into light. These dark days grow compassion and intensify my desire to share the hope of this light. As a being dwelling on this earth, the primary purpose of my existence is to love the Lord my God with all my heart, soul and mind. How can I shun the things that allow me to see Him more fully? How can I despise these, “seeing through to God places?” I do walk in this suffocating darkness. But isn’t it glorious to be witness to the inconceivable reality that God can turn that which threatens to choke out our life, into the very air that grows us more beautiful? I will not try to make the pain more palatable. I will not try to diminish it or call it less than it is because the immensity of this pain illuminates the immensity of God’s glorious promises – both for the present and for the future. This pain demonstrates the scale of what God is up to. So here they sit – side by side – the pain and the sorrow and the brokenness right up against the goodness and kindness and faithfulness of the God who both calls the stars out each by name and who knows when I lay down and when I rise.
One of the things in life I am most grateful for are my fellow believers in Christ that have gone before me in faith. They walk the road ahead of me, and sometimes, their words echo backwards for my ears and heart to consider. I am blessed and encouraged and spurred on by the days they have walked with the Lord. When Allistaire was first sick, it was Christmas time and I had just picked up an Advent devotional. One section in particular has had one of the most significant impacts on my heart this past year and a half. Below I have typed out the words of Henri Nouwen from his work, “A Spirituality of Waiting.” I have italicized the parts that have profoundly molded my heart and mind. The core idea is this – I choose to call out to the Lord and ask with hope for His beautiful, glorious version/image of my life – I do not constrict the possibilities by demanding and putting all my energy into my narrow view of good and best – I seek to live open-handed – looking expectantly for what He is up to – I look expectantly to the unfolding of a plan and a beauty that would knock me down – a beauty that would change me utterly as it did to Moses when he briefly looked upon God.
Come Lord. Come and act – according to your Holiness – your utter otherness – your utter glory and beauty that defies my finite imagination. Holy, holy, holy is the Lord Almighty!
“Waiting is not a very popular attitude. Waiting is not something that people think about with great sympathy. In fact, most people consider waiting a waste of time. Perhaps this is because the culture in which we live is basically saying, “Get going! Do something! Show you are able to make a difference! Don’t just sit there and wait!” For many people, waiting is an awful desert between where they are and where they want to go. And people do not like such a place. They want to get out of it by doing something.
In our particular historical situation, waiting is even more difficult because we are so fearful. One of the most pervasive emotions in the atmosphere around us is fear. People are afraid – afraid of inner feelings, afraid of other people, and also afraid of the future. Fearful people have a hard time waiting, because when we are afraid we want to get away from where we are. But if we cannot flee, we may fight instead. Many of our destructive acts come from the fear that something harmful will be done to us. And if we take a broader perspective – that not only individuals but whole communicates and nations might be afraid of being harmed – we can understand how hard it is to wait and how tempting it is to act. Here are the roots of a “first strike” approach to others. People who live in a world of fear are more likely to make aggressive, hostile, destructive responses than people who are not so frightened. The more afraid we are, the harder waiting becomes. That is why waiting is such an unpopular attitude for many people.
It impresses me, therefore, that all the figures who appear on the first pages of Luke’s Gospel are waiting. Zechariah and Elizabeth are waiting. Mary is waiting. Simeon and Anna, who were there at the temple when Jesus was brought in, are waiting. The opening scene of the good new is filled with waiting people. And right at the beginning all those people in some way or another hear the words, “Do not be afraid. I have something good to say to you.” These words set the tone and the context. Now Zechariah and Elizabeth, Mary, Simeon and Anna are waiting for something new and good to happen to them.
Who are these figures? They are representatives of the waiting Israel. The psalms are full of this attitude: “My soul is waiting for the Lord. I count on his word. My soul is longing for the Lord more than a watchman for daybreak. (Let the watchman count on daybreak and Israel on the Lord.) Because with the Lord there is mercy and fullness of redemption” (Psalm 130:5-7). “My soul is waiting for the Lord” – that is the song that reverberates all through the Hebrew scriptures.
But not all who dwell in Israel are waiting. In fact we might say that the prophets criticized the people (at least in part) for giving up their attentiveness to what was coming. Waiting finally became the attitude of the remnant of Israel, of that small group of Israelites that remained faithful. The prophet Zephaniah says, “In your midst I will leave a humble and lowly people, and those are left in Israel will seek refuge in the name of Yahweh. They will do no wrong, will tell no lies; and the perjured tongue will no loner be found in their mouths” (Zephaniah 3:12 -13). It is the purified remnant of faithful people who are waiting. Elizabeth and Zechariah, Mary and Simeon are representatives of that remnant. They have been able to wait, to be attentive, to live expectantly.
But what is the nature of waiting? What is the practice of waiting? How are they waiting, and how are we called to wait with them?
Waiting, as we see it in the people on the first pages of the Gospel, is waiting with a sense of promise. “Zechariah..your wife Elizabeth is to bear you a son.” “Mary…Listen! You are to conceive and bear a son” (Luke 1:13, 31). People who wait have received a promise that allows them to wait. They have received something that is at work in them, like a seed that has started to grow. This is very important. We can only really wait if what we are waiting for has already begun for us. So waiting is never a movement from nothing to something. It is always a movement from something to something more. Zechariah, Mary and Elizabeth were living with a promise that nurtured them, that fed them, and that made them able to stay where they were. And in this way, the promise itself could grow in them and for them.
Second, waiting is active. Most of us think of waiting as something very passive, a hopeless state determined by events totally out of our hands. The bus is late? You cannot do anything about it, so you have to sit there and just wait. It is not difficult to understand the irritation people feel when somebody says, “Just wait.” Words like that seem to push us into passivity.
But there is none of this passivity in scripture. Those who are waiting are waiting very actively. They know that what they are waiting for is growing from the ground on which they are standing. That’s the secret. The secret of waiting is the faith that the seed has been planted, that something has begun. Active waiting means to be present fully to the moment, in the conviction that something is happening where you are and that you want to be present to it. A waiting person is someone who is present to the moment, who believes this moment is the moment.
A waiting person is a patient person. The word patience means the willingness to stay where we are and live the situation out to the full in the belief that something hidden there will manifest itself to us. Impatient people are always expecting the real thing to happen somewhere else and therefore want to go elsewhere. The moment is empty. But patient people dare to stay where they are. Patient living means to live actively in the present and wait there. Waiting then is not passive. It involves nurturing the moment, as a mother nurtures the child that is growing in her. Zechariah, Elizabeth, and Mary were very present to the moment. That is why they could hear the angel. They were alert, attentive to the voice that spoke to them and said, “Don’t be afraid. Something is happening to you. Pay attention.”
But there is more. Waiting is open-ended. Open-ended waiting is hard for us because we tend to wait for something very concrete, for something that we wish to have. Much of our waiting is filled with wishes: “I wish that I would have a job. I wish that the weather would be better. I wish that pain would go.” We are full of wishes, and our waiting easily gets entangled with those wishes. For this reason, a lot of our waiting is not open-ended. Instead, our waiting is a way of controlling the future. We want the future to go in a very specific direction, and if this does not happen we are disappointed and can even slip into despair. That is why we have such a hard time waiting: we want to do the things that will make the desired events take place. Here we can see how wishes tend to be connected with fears.
But Zechariah, Elizabeth, and Mary were not filled with wishes. They were filled with hope. Hope is something very different. Hope is trusting that something will be fulfilled, but fulfilled according to the promises and not just according to our wishes. Therefore, hope is always open-ended.
I have found it very important in my own life to let go of my wishes and start hoping. It was only when I was willing to let go of wishes that something really new, something beyond my own expectations could happen to me. Just imagine what Mary was actually saying in the words, “I am the handmaid of the Lord…let what you have said be done to me” (Luke 1:38). She was saying, “I don’t know what this all means, but I trust that good things will happen.” She trusted so deeply that her waiting was open to all possibilities. And she did not want to control them. She believed that when she listened carefully, she could trust what was going to happen.
To wait open-endedly is a radical attitude toward life. So it is to trust that something will happen to us that is far beyond our imaginings. So, too, is giving up control over our future and letting God define our life, trusting that God molds us according to God’s love and not according to our fear. The spiritual life is a life in which we wait, actively present to the moment, trusting that new things will happen to us, new things that are far beyond our imagination, fantasy or prediction. That, indeed, is a very radical stance toward life in a world preoccupied with control.