For one year of my life I was a science teacher. I didn’t really know what I was doing, but my love of science fueled the absurd number of hours I put into trying to learn the subjects enough to then teach them. I taught Biology, Chemistry, Physical Science, Algebra and Earth Science. One of my favorite memories was of my requirement for the 7th graders to pronounce the word “magma,” as though they were wide-mouth frogs. The sound is impossible to convey in letters but ever funny to actually hear. And so perhaps, it was these long ago memories of Earth Science and learning about all the different sorts of rocks, that subconsciously inspired the title, Conglomeration of Joy. I first used “Conglomeration of Joy,” as the title to the annual family movies I made. Like conglomerate rock, I imagined all the little bits of joy and life all stuck together to form a whole. The memories were distinct and yet, they stuck, one to another, to make something bigger – a year – a life. So when it came to that fourth hour of the morning on that first night in the hospital with Allistaire, I sat up and started this blog and it seemed natural to call this too, Conglomeration of Joy. And it was a willing to possess, to take hold of, to call my own, the future that was unknown, but to claim it nonetheless, as a whole bunch of joy waiting to happen – joy added to joy to joy to joy – all the bits glomming onto one another to form the days and months and years ahead.
Today is September 1st and therefore, today marks exactly 21 months ago that this all began, when my little sweets was just twenty-one months old. She has now spent half of her life fighting this cancer. These twenty-one months have been full of joy – lots and lots of moments stuck together. So today I’ve included lots of pictures to show you lots of those little moments of joy that are forming a whole. I’ve also included an incredibly unlovely picture of myself on the day that Allistaire’s relapse was confirmed. I’d rather hide this picture away. It’s not becoming. But it is real. There are dark stones too; memories and situations and realities that you can’t preserve in a photograph. As I’ve said now numerous times, they sit together, these joys and these piercing sorrows. In the same day that I play tickle monster with Allistaire with us both needing to catch our breath from laughing so hard, I read these sentences: “Some cells acquire mutations that activate molecular pumps. In normal cells, these pumps extrude natural poisons and waste products from a cell’s interior. In cancer cells, these activated pumps push chemotherapy drugs out from the interior of the cell. Spared by chemotherapy, the drug-resistant cells outgrow the other cancer cells.” My mind suddenly remembers Dr. Pollard saying something months ago about maybe Allistaire’s cancer cells having developed pumps to reject the chemo. My throat constricts as I think on those seven days of chemo she’s just completed and the hope we’ve put into that drug. What if it doesn’t even get a shot at working. I take my time these days, watching her face intently as she tries to put the words together to convey her idea. I watch the muscles of her face express the effort of thought and delight. I strive to soak her in and lap up all the beauty of being in her presence, of calling her my own little girl. And the stress of the ever-present potential for face-smacking doom makes me edgy and unkind. Then I berate myself for treating her as anything less that absolutely precious. How can I ever dare to be callous with her? But after an hour and a half of coaxing her to eat a half of a sandwich, I feel furious and crack and then have to pull her in close to me and apologize. I think of the camping trip to beautiful Wade Lake we took as a family last year on Labor Day Weekend. I fantasize about clothes that smell like campfire and the dampness of morning spent in the woods, of light filtering through evergreens, the smoke illuminated by rays of light. I twist and struggle with the acid sweetness of envy of those who have fun plans this weekend. There is an endless oscillation between drowning sorrow and a refusal to let the dark waters overtake me. I feel like a prisoner who must be thankful for their cell because they are not outside the window, hanging from the gallows.
Why spend so much time and energy considering these sorrows? I guess because I can’t get away from them, they wrap tight around my ankles as I try to outrun them. And they are new, they are foreign, they are lands unexplored, seas uncharted. I am perplexed by them. They are the algorithm my mind works at ceaselessly whether by day or while I sleep. I fiddle with their surfaces, turning them this way and that, trying to figure out what I’m looking at. It is a taste I can’t get out of my mouth, a nagging at the back corner of my brain. It is the dark presence in the corner that won’t leave. I yearn for a life severed from this woe but there is also the advantage of contrast. How utterly spectacular the light filtering through the leaves of the oak trees outside this apartment window. How sumptuous Allistaire’s plump cheeks. How miraculously simple to extrude joy from life. How wondrous is one single cell. How ample is good and beauty – how available is this harvest of grace exploding around me.
Conglomeration. Piece by piece, bit by bit. Minute by minute to form the hour. Hour to hour to create a day. The days pile up becoming a year and years meld to become a life. I constantly slam into the question of how do I do this? And the answer is always there and always the same. We walk, just walk. Sometimes, oh let’s be real, most of the time, I forget that all I am called to do is to walk with the Lord. It’s not my job to cure Allistaire of cancer or to determine whether this disease will take her or something else. It is not for me to know how all of this will impact Solveig or my relationship with her or my marriage. Sometimes I feel the Lord just smiling at me and smoothing my brow, saying, “Just calm down, Jai. I have this. This is my creation. Rest. Rest in Me. Be at rest. Wait for me. Look for what I will do. But even more, just know that I will hold you through this day and provide for all your needs, this day.” And so I sit on the rock next to my Lord, looking out to the wild sea. I don’t know which way He will lead me or what dangers and joys lie ahead. But really, the point is, I’m with Him. That is the point of it all. He is our portion and we are His prize.
Allistaire did great with her chemo and finished up on Friday. Many of the pictures are of her multiple days at SCCA getting her chemo, spacing out while watching, “Bubble Guppies.” She was utterly confused by the commercials and was concerned with what happened to her movie. She refused the information that this was TV and there were commercials but that her show would come back. She insisted that she was watching a movie. She never threw up other than that one time early in the week. Her energy has not seemed to lessen, nor her adorable hilarity. Chemo does not seem to have fazed her, except perhaps her appetite. They nearly doubled her prednisone because of her skin GVHD rash but it responded extremely well and is only slightly visible now. The doctors were pleased, which makes me pleased! We had a fun adventure one day after chemo, discovering Ravenna Park and the beautiful trails that meander through the ravine with a little creek running down below. Another day we had the exhilaration of a mighty rainstorm which provided the longed for opportunity for Allistaire to wear her rain boots in the puddles and try out her new umbrella. There was also a very slow, intensely expressive dance by Allistaire all throughout the Starbucks at the hospital. She retained complete non-expression of her face while her arms and legs conveyed incredible depth of emotion. I could not stop laughing. On a trip to Target, Allistaire picked out fancy panties (Wonder Woman, Bat Woman and Super Woman) to get her motivated to get back to using the toilet rather than mountains of diapers. She is thoroughly excited about it but clearly has some muscle control to work on as she often wants to go every few minutes. Our week ended with joy upon joy to hear that Stellablue’s scans were clear once again! For those that may not remember, Stellablue was in treatment for Wilm’s, a cancer of the kidneys, beginning several months before Allistaire got sick. She and her delightful family, Andy, Andrea and baby sister, Soren, are also from Bozeman and only live a few miles from us. It was joy to see these two giddy girls together and for me, special delight to watch the brightness in Andy’s eyes as he told me about all the great connections he is making with researchers and law makers who are so motivated to accelerate and make available better treatment options for kids with cancer. Andy is a man on fire and I love it! And Andrea, sweet Andrea, pulled me back to her when I was ready to release the hug. No, no, she insisted, we needed more embrace. A bright stone – four bright singing stones stuck to our lives – what joy!
Oh I love it Jai. I can taste the bittersweet as well and love to see A-girl smile and be silly. I love you lady and pray for you daily.
I love everything about this post. Your beautiful writing, your complete and utter honesty, her sweet and silly faces, all of it. I’m so sorry it’s so excruciatingly painful. Praying for continued grace upon grace for every day.
So glad she tolerated the chemo well. Thanks for sharing the pictures – so great to see her exceptionally cute little face so full of joy.
I saw this tonight and thought of you: http://www.desiringgod.org/blog/posts/a-song-for-the-suffering-with-john-piper
Thinking of you and praying often for you both.
As always I look for words to encourage you but I am amazed that you always encourage me with your beautiful words of faith. Thank you for the continued updates and precious pictures. Prayers for you and your family from Chicago , Illinois.
Goofy girls! What fun photos, and I resonate with the one you dislike. I don’t have photos of my grief-stricken face, but it IS real. It IS raw. It’s honest. God craves our honesty. He knows it anyway. I love you, lady. Praying God’s will and peace over you all.
Thanks for the updates Jai. We read them all and are praying for all of you daily. And I must say, I absolutely love the pictures on the toilet with the fancy panties.
Sweet photos! Thanks for sharing your deepest feelings in such eloquent prose! God bless you and your family! God bless the researchers and medical personnel as they try to be on top of and in front of this vile disease.
Jai-continued prayers from us in Port Angeles! Also have you seen the book The Umbrella? It’s about a little 3 year old who has been waiting and waiting to wear her rain boots and umbrella! My girls all love it and your story about A reminded me of the story. We adore you all. Love Cassie
Praying for you today, throughout the day, that God’s strength will be there when yours is gone, that His grace and mercy will carry you on, that the unending love He has for you will lift you up and see you through! May you once again see the Lord smiling, feel Him smoothing your brow and hear Him saying, “Just calm down, Jai. I have this. This is my creation. Rest. Rest in Me. Be at rest. Wait for me. Look for what I will do. But even more, just know that I will hold you through this day and provide for all your needs, this day.”
Loving you beyond measure,
Just want to let you know that I am reading your blog and bearing witness to your testimony. Grateful for You.
I thought of you and your extraordinary journey when I read this today:
“Life is meant to bring a succession of discoveries of our need of Christ, and with every such discovery the way is opened for a new inflow of the supply. This is the explanation of so much that we cannot otherwise understand—this plunging of us into new tests where only a fresh supply of the Spirit of Jesus Christ will meet our need. And as our need is met, as we prove the sufficiency of Christ to meet our inward need, so there can be a new showing forth of His glory through us”
Miles J. Stanford
Standing with you in prayer and in love.
Hello! My name is Holly and today my husband and I attended church in Vancouver, WA at “the house of providence.” The pastor shared a bit of your story and read from this blog post. My husband and I have had 2 miscarriages and gone through IVF 3 times-miscarriages are hard but nothing near what you are going through. I couldn’t help but quietly sob in church as I was so inspired by your faith, your strong grounding in God and his goodness. I could only imagine the pain and fear and heartache that come with everything.The reminder that just because we are Christians doesn’t mean God doesn’t have “dark paths” for us to walk on. I don’t know you but I know you are amazing. An amazing Christian. An amazing mom. Thank you so much for sharing your story and for encouraging me today. I will be following you and lifting your family up in prayer!!!
I found your blog via Jake Hendrix. I can’t fathom the road you and your family are walking, but when the floodwaters (inevitably) rise in my own life, I hope I will be able to posture myself as well as you have.
I’m going to keep reading and praying.
Jai, like so many have posted above, you have such an amazing gift of expressing yourself. I am so moved and appreciate your honesty. I pray for you and your family often.
Your “readers” love you (I’m sure I’m speaking for all of us). We are still praying for you even though it’s been a while. You are loved and we are holding up your arms like Aaron and Hur! We will keep praying for you and for Allistaire, precious precious children of God.
HE… made you such a GOOD Mommy!