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.
And so, dear friend, I wait with you. I love you and your family, I’m praying for you all, and may God be closely present to your hearts in these next anxious hours.
Praying, waiting, hoping and thanking God that you can share your journey. Today’s post means more to me than you know.
I will be lifting you all up today and in the coming days. Jesus will cover you with his presence.
You have allowed your soul to be a pure conduit for His extravagant graces.The pain, sorrow, angst, and loss swirling around and reaching out to us through your words is crescendoding up to His throne as you make Him so clearly radiant and our prayers in response to magnify Him. Again, it rips me to think of your loss. Thank you for sharing it with even a stranger, I pray we might bear some of this burden somehow, and that you would continually be strengthened to keep giving Him praise. Some day, some day soon, we will see Him face to face.
“There are others who walk in darkness and are desperate for the light and hope. I know the God that turns this darkness into light.” Friend, thank you for sharing this light.
There are no words in my head, only prayers and love.
I am not sure exactly how I stumbled upon your blog, though I am thankful I did (and I think God had a plan). I have been following since May and also am local to Seattle. I have been praying for you, your family, and most importantly your sweet girl.
Your words bring such refreshment to me as I am going through my own sort of pain and suffering. Not the loss of a child, but the impending loss of a marriage as I’m left to raise my 1 1/2 year old son while my husband walks away from the Lord and our family. I pray for a miracle daily and in the midst of my intense pain and suffering, I am reminded of God’s goodness and your blog has been a part of that.
I don’t understand the specific deep pain you have experienced, but I do know what it’s like to be left breathless, wondering how you could possible take one more step. To receive blow after impossible blow.
It is my deepest prayer that God will fill you with joy regardless of the outcome (but I am hoping and believing God for a miracle for your baby!) and I am confident that God will be so very near to you, as He has already been. I have shed many tears reading your words, aching for healing for your baby girl right along with you, a sister whom I’ve never met. I wait with you.
thank you so much for sharing this, reflecting this wait and revealing its depth. I don’t know if you remember me at all, but I worked with you for a brief time at UGM. You were always on nights when I was leaving at the end of my day. Our 2 year old son lives with a rare congenital heart defect and is due for his tests on Thursday at Seattle Children’s. I know the pain, joy and roller coaster of emotions you describe now, too. Know I join you in prayer. Real, raw prayer. It seems like it’s not enough to say I am praying, but I am. -Anna (Hendrick) Anderson
❤ No words, just prayers and love
Waiting with you and praying for you…
“But you are a shield around me, O Lord; you bestow glory on me and lift up my head.”
I will be praying for you all tomorrow.
you do not wait alone. You are lifted up before the throne of grace in this time of need. While we do not know one another – we are sisters. I pray that the father of Life and Healer of all things would hold you closely in His hand through this night and coming days. You and your precious girl…
He truly is trustworthy in the waiting, and a healer of all- broken bodies, broken hearts, broken plans, a broken world.
With a heart aching from afar- I think of this:
Our hope in Christ in NOT for this life only…it is an eternal hope and one that does not disappoint.
Thank you for sharing your story- your moment and your faith in your Maker. May we all be so surrendered in the moments we least wish to yield. xo
Can I just say…WOW!!! The deep, profound truths that you are learning are truly amazing. I grow each time I read your blog. Tomorrow – can’t even fathom the depths of what you must be feeling when you think of tomorrow. I remember the incredible fear I had while wrestling with Kenzie’s cancer and my fears were nothing compared to what you are facing. Jai, you and Sten, will be covered in prayer. Jesus, let them sense your sweet presence joining them in the meeting with the Dr. Love you Jai!!
You are teaching me Jai through your writing and watching you as an amazing mom and daughter of our King. My daughter, Chloe and I pray for you all and especially, Allistaire.
Jai, I have only recently found out about little Allistaire. I am so humbled by your post and your honesty in how you are dealing with this before the Lord. Jordan and I will be praying for you tonight and tomorrow and that His grace would be sufficient for you!
I do not know you or your family, but was lead to your blog by Jennifer Weis. I am lifting up your precious girl to the Lord and asking that He will sustain you, your husband & your family during this time. Praying for tremendous peace that only God can give!
(My 4-year-old son is fighting high-risk Acute Lymphoblastic Leukemia.)
Dear Father in Heaven please surround Jai, Sten, and their sweet girls with your love. Please give Jai and Sten a peaceful nights rest tonight. I pray that as the sun rises on a new day tomorrow, that you would take away all anxious thoughts and that their hearts will be full of faith, hope, peace, joy, and trust because they know that you are in complete control of every single thing that the day will bring and that you will be with them in every moment. I ask that you continue to heal and completely restore Allistaire’s little body. I thank you for the miracles you have already done for Allistaire, and ask that tomorrow be another day of miracles and answered prayers.
You do not know me but I saw your story on Facebook. I am overwhelmed with a sense of caring for this gorgeous little girl. I have prayed for and will be praying for this precious Lamb of God.
I just read about your little girl tonight after I prayed all day for a little boy named Caleb who is 4 months old and is getting a new heart tonight. I feel such joy in being able to pray along side you and little Allistaire, even though I have never met either of you! I am praying for God to continue to reveal Himself to you in the special way He has been doing during this journey your family has been on. I also pray for tomorrow to be a day of rejoicing and for our GREAT PHYSICIAN to heal your baby girl. Your posts have strengthened my faith and have blessed my spirit!
As we sat impatiently for our long-awaited flight to NYC for Emmys Make-a-wish trip this morning, Ryan had the pleasant surprise of bumping into Sten. I knew not to ask, and only said “thinkng of you guys today. Best wishes to all of you. Big day.” And with a glow beyond any pregnancy’s, Sten told us the awesome, splendid, joyous, news! “0 blasts!” It made our trip that much better- knowing we are finally going and knowing Allistaire is succeeding too, against all odds.
Celebrate today- in every way you have wanted. We are celebrating Allistaire, and all of you, today too!! xoxo
Thank you both for rejoicing with us! It is indeed incomprehensibly wondrous news! I hope that your trip is absolutely beyond delightful! Blessings on your four beautiful heads! I look forward to the day that we can all sit down to dinner or a pic nic together!
My prayers go today to God to wrap you in his arms and to hold you gently in whatever reality you find yourselves. Of course, it goes without saying we are hoping for God’s mercy and His miracle of healing. I pray that your strength through the Lord sustains you now more than ever! Most of all, prayers flow from my lips for all of you! the Montana grandma
We came across your story through Caden Shrauger’s site. I have an 18month old little girl and 5 year old boy. We love Allistaire, we pray for her every night. She is an absolute delight, through the pictures and stories you have been so brave to share. Your words….so courageous, yet numbing to the mind of a mother. You are amazing, I share your joy today. May little Allistaire be blessed forever. We love you and prayed again for your sweet family tonight. Love.