Memorial Video & Family Update

I've been meaning to write an update here for a while and give some snippets of the memorial celebration for those of you who couldn't attend. It was a beautiful, joyful, eclectic gathering that I feel really reflected who Ian was. The image above is from one of Ian's last sketches of Asha. Next is a link to the memorial video, which is worth watching over and over. It captures so much: 

https://www.youtube.com/watch?v=0H580Jo1Ph8  

Finally, below is a scan of the front of the program. It's one of my favorite quotes from Ian:

It's been over four months now since Ian crossed the bridge Home, but it doesn't yet feel fully real. I still talk to him all the time, out loud if nobody else is around, as if he is somehow still part of our daily life. I still cry most every day, often in the wee hours of the morning towards the end of my sanity-recovery-time after the girls are asleep.  Oh the daily roller coaster of emotions happening here. We are doing well, which means we are falling apart and being mended again and again in the long, painful process of grief and healing. 

I'm referring to this current season of life as "womb time" - a protected space of time for healing and developing our new life together as a family without Ian. It's hard to even write that, because he will always be so much a part of us.  Still, the sad truth is that he's no longer here to make us laugh with his silly spontaneous songs or bubble wrestle the girls or advise us in relational tangles and  financial decisions. Sigh... It's still sinking in. And it still hurts so, so deeply. I'm sure it always will this side of our reunion in heaven.

We are all processing in different ways. Fiona is mostly full of anger. She points it at me like a weapon if I draw a boundary she doesn't like, saying I'm not the mama for her and I'm mean and always angry and don't want her to have any fun. She stomps away in a rage, slamming every pound of her little four-year-old body onto our hardwood floor to make the most dramatic exit possible, then slams the door once, maybe even twice. I follow after her, taking a deep prayerful breath and telling myself not to react. Soon she calms down snuggling up to me as close as physically possible, crying and needing more comfort and assurance of my love than ever. It pierces my heart knowing it's just sadness coming out sideways. She told me the other night that if I died, she would kick everyone in the world. Anger is clearly how she is processing things right now. I'm glad it is coming out sooner rather than later. I am glad she is dealing with it in her own way, even though it is difficult. If you are a person of prayer, please pray for her, and for me. I need supernatural patience not to react to her anger and accusations. I need supernatural wisdom to navigate this new kind of storm. I am looking into counseling. 

Asha is straight up amazing, as always. She's so full of joy and creativity and zeal for life. Tonight she exclaimed that she felt extra happy, but she wasn't sure if that was even possible. She seems to exist on an extraordinarily steady joyful state of being. While Fiona has been generally pessimistic and mad at the world, Asha has seemed to only grow in appreciating the gift of each moment.  She has been extra helpful and gracious as she sees the extra challenges I'm facing with Fiona. I'm planning to start fourth grade (Waldorf third grade) with her in a weeks or so.  Please pray things with Fiona settle down soon so we can establish some peaceful, joyful daily rhythms together. I am really looking forward to this next season. I feel deep in my heart it will be super sweet, though currently it is quite rocky.

How am I doing? I've never really liked that question, though it's the inevitable salutation in our culture. It's too deep a question to throw out there, especially when there is so much going on inside. I'm not so skilled at immediate self-awareness. Overall I think I'm doing well, though.  We moved to Santa Cruz in July and are living in a beautiful home with a rich, creative, diverse spiritual community around us.  There is a steady flow of people moving through our lives here, keeping us from isolation and inordinate self-focus.  I even cook a huge meal of Indian food every Wednesday night and fling open the doors to anyone and everyone, housed or homeless, for an Unconditional Love Feast. It's a little bit different every week, but healing in a way I can't quite put my finger on. It is something Ian and I had planned to do when we moved to Santa Cruz, so I started the first week we moved here just to make sure to build it into our lives. It feels a little extreme, but in a wonderful way. I need it. I have no idea what to expect each week. There is something both scary and wonderful in letting go of control and choosing to love and be loved by whoever walks through the door. It feels deeply grounding in a total surrender sort of way.  Yes that is quite paradoxical, I know. Kind of like losing your life to find it. I definitely find Jesus in these acts of radical trust and vulnerability. And the Lord knows, I need Him more than ever right now.

I don't want to make my life so small that I think I can be enough for it. I don't want to live a life so safe that I can have the illusion I am in control. I feel like these past years have been a huge lesson in trust and surrender and day by day discipleship. I want to continue the course. Before, we were thrust into a situation out of our control and given the choice to either trust or freak out. Now, I have really learned the joy of choosing to trust. Now that the whole wide world is open to us again, I still want to stay right by His side and follow Him step by step, moment by moment. I want the Lord to be in control and steer this ship, this family. So I'm moving forward slowly and seeking to follow His lead. And this is a sweet place to be, with Him moment by moment. Even through the stormy emotions, He is with us palpably.

A dear friend shared this quote a few weeks ago and I immediately posted it to the door of our bedroom. I feel like it sums up where we are at, or at least where I hope we are heading, in a lot of ways:

"And as we dance, we realize that we don't have to stay on the little spot of our grief, but we can step beyond it. We stop centering our lives on ourselves. We pull others along with us and invite them into the larger dance. We learn to make room for others - and the Gracious Other in our midst. And when we become present to God and God's people, we find ourselves richer. We come to know that all the world is our dance floor. Our step grows lighter because God has called others to dance as well."
       ~ Henry Nouwen

One final note: I think my biggest felt need currently is for people who loved Ian deeply to come over for chai and share memories and cry with me. Not that you need to cry, but you just need to be prepared for me to cry. Even if you only loved him shallowly, which may not be possible due to the nature of who Ian was, I'd love to hear your stories! Voicemails and emails and FB messages can help, too. I just need to know I'm not the only one still missing him. I think over time people might have become hesitant to talk about Ian, but this is what I really need and want. Even if it makes me cry. So please don't hold back! 

Celebration of Ian's Life

Preparations are in full swing for the Celebration of Ian's life on June 11th. It will be held at Roaring Camp Railroads and will be casual, colorful (no need to wear black) and super family friendly. The address is:

Roaring Camp Railroads 

5401 Graham Hill Rd

Felton, CA  95018

There is an $8 parking fee per vehicle. The service will start in the big barn building at 2pm and there will be plenty of mingle time afterward with picnic tables and blankets, grassy areas to run around and play, and plenty of drinks and appetizers. Bring instruments to jam and drums for a drum circle. Ian wanted people to hang out and get to know each other, meet new people and find out how they are connected to him and exchange stories face to face. There will also be a video booth for collecting stories of Ian for the girls to watch as they grow up to capture some of the many wonderful facets to the gem of who their dad was. Come prepared to share! 

For those of you coming from out of town, we have an awesome opportunity to rent bunk style cabins at a nearby outdoor education camp. The girls and I will be staying there. I'm really excited to have a central place to spend time together that weekend. If you are interested in this, please contact Jacob Goodman @ (916) 899-1970  ASAP to reserve a bed and get directions. 

Thank you for all the prayers that continue to pour out for us. The Lord continues to be so present.  When I feel all the pain hit me, I lean into it and let the tears flow and can feel God's arms around me comforting me deeply.  I've started taking harmonium lessons and this has been such a grace to me right now, too. When I start to feel overwhelmed, I'll sit at the harmonium to sing and i feel like I'm tuning into heaven.

I am loved so perfectly, so sweetly, so faithfully, so intimately by the most Perfect Lover. When I tune into this truth, into the arms of Jesus himself, letting go of all my inner toddler tantrums and stress meltdowns and receive His love, everything changes. Everything. I'm overwhelmed instead by unspeakable joy and peace and hope for the future, knowing He will be by our side every single step of the way. 

It's a beautiful place to be, and I'm sure the buckets of prayer pouring out for us have been instrumental in carrying us through in such an amazing way. 

Thank you ❤️

I hope to see many of you there June 11th and hear your stories of Ian and how he has touched your lives.  

Memorial Date

We finally have a date and location!

The memorial celebration will be at Roaring Camp in Felton on Saturday, June 11th. This is the same place where our wedding reception was held 11 years ago. More details to follow, but I wanted to get the date out there ASAP for those who will be coming from out of town. 

We are still doing miraculously well. We have had at least one worship gathering every day since my last post! It's been so beautiful and grounding. I've needed it every time. We've had everything from hippie style drum circles to hymns on the piano, and lots of treasured play time for the girls. My favorite moment was when Asha and her friend Katie joined in for their favorite song, "Trust in You" by Loren Daigle. They sang at the top of their lungs "When you don't move the mountains I'm needing you to move, when you don't part the waters I wish I could walk through, when you don't give the answers as I cry out to you, I will trust, I will trust, I will trust in you." So precious and powerful. 

Now I feel like it is time to settle in together and find new rhythms again. It's been so long since we've even had the opportunity to carry a family rhythm. Morning circle times begin Monday along with a new school unit for May. I feel excited for this, which feels like a huge miracle in itself considering it felt like a dreaded burden up until a few days ago.  

We buried Ian's body this morning at Santa Cruz Memorial. I felt that we needed to keep it simple and intimate, just the girls and me. If anyone else joined, it would have distracted from the main event as my girls are such passionately social little creatures. I felt like it was deeply important for them to be fully present for it, as much as possible. 

It was painful but provided the beginning of a sense of closure. It's hard to even type that word, closure. It doesn't feel right, because we will always carry him in our hearts - every single day of our lives. The book of Ian and how he has impacted our lives will never be closed, but there is also the need to face the very painful reality that he is gone physically from us on this earth.  Watching his burial was helpful for facing this very hard truth.

I wept all morning and wailed over the casket as they lowered Ian's body into the ground. The girls didn't cry, but they held me and comforted me and watched intently as the process unfolded. It was a bright, sunny day. We sat on a blanket and had a little picnic of kombucha and some of Ian's favorite foods while they shoveled the soil to fill in his grave. It felt like a perfect moment, in a very tragically beautiful sort of way. 

Later, this was how Fiona described it to my mom, "He was buried in a BIG box, because he was the BIGGEST person in the whole world!" I love this little window into her view of him. She has been pulling up her favorite memories with Ian lately, at random times. It seems so sweet and healthy. Tonight on the drive home, her memory was of sitting on his lap as they barreled down a slide into a pool in Thailand. 

I feel like we are all doing really well, by God's grace. Thank you so much for your steady flow of love and prayers ❤️

Memorial

Many have asked about plans for a service. We will be having a big, open invite memorial celebration of Ian's life in the Santa Cruz area sometime in the next few weeks. Ian told me to take my time in planning it, so I'm thinking it will be around early to mid May. Once I have a date and location set, I will post it here on the blog ASAP. 

The girls and I are being carried through waves of grief as we process our great loss and Ian's glorious gain. Fiona and I wept together Tuesday afternoon as she realized she will never see her Abba or Grandpa again this side of heaven. She asked if Ian still had skin, and if we could cover him in poppy flowers so he would be soft. Asha has been less connected emotionally, but she had a dream of Ian Tuesday morning and woke up with tears. Most of the time they have just been their joyful, dancing, cantankerous little selves. We looked at cemetery plots yesterday and will finalize his casket and grave site together today.  I envision many picnics there with the girls, sharing memories of Ian.  I pray that bringing the girls into the process will help them face this loss as much as possible now, rather than it coming out sideways later.  They have both had a long season of preparation and processing leading up to this point, but I'm sure it will take years for the reality of losing their dad to sink in. 

I'm experiencing so much grace right now, soaking in worship and the very Presence of God throughout every single day. Sometimes the Lord leads me into sobbing tears, pouring out deeper and deeper layers of sadness and disappointment.  Other times, I'm led into such a blissful awareness of his Love that I feel like I could explode into a million joyful pieces. I feel like I need both, it's a healthy tension. It keeps me real but doesn't leave me in despair.  I don't want to rebuild my life, I want Him to rebuild it step by step, stone by stone. I know without a shadow of a doubt that God is good, even in this tragedy, and that something beautiful will come of this. If Ian's faithful trust in the Lord amidst such suffering and death is a seed, I am confident there will be much fruit born from it whether I see it or not. Like Narnia, it's somehow part of the deepest and purest power of the Kingdom of Heaven. I feel it in my bones. 

We've met nightly at different friends' homes to worship together and this has been a taste of heaven, exactly what we need.  I've asked for simple, real, raw worship in homes instead of meals, because we need Divine fellowship and connection way more than food right now. If anyone in the Bay Area is up for organizing a little worship gathering this next week, please contact me. 

Thank you all for your love and prayers.
We are feeling them ❤️

Home

Ian went Home peacefully this morning, surrounded by friends singing in worship. The suffering is over for him, finally and forever. He's smiling brighter than ever now. But we will sure miss him.  

Update

I've really struggled with updating due to the heavy nature of Ian's current state, but I finally decided to lay it out on the table for continued prayer. The fungal infection is growing daily and literally covering Ian's skin with thousands of painful lesions, head to toe. Older ones from a week or so ago have darkened and are slowly decomposing into open wounds. He can hardly use his hands because they are covered with so many painful sores. He cannot survive much longer in this condition with no immune system, though his vitals are still stable. He is on continuous, increasingly heavy pain management. 

It sounds like a nightmare, and it truly is. But somehow, I've learned really well, when nightmares come to life there is so much more abounding grace to walk through them. I don't know how to explain it, but it's like a massive trampoline where you barely jump and are lifted higher in the air than you ever knew was possible. His love is so palpable, along with the pain. 

Please pray for extra comfort for our girls as their little hearts continue to process all this and I'm mostly with Ian these days. They visited yesterday and it was intensely painful for Fiona to leave. She wanted to stay the night with us at the hospital, but it's just too hard to juggle the girls and Ian here for very long while he's in such an intense stage of disease. Please pray wisdom for me as I seek the right balance here. 

We continue to pray and plead for Ian's life. If you have a gift of healing and feel called to pray, over the phone or in person, please contact us. As long as there's breath, there's hope. And we always have the deeper and unshakable hope of direct union and communion with our Creator, together forever in new and better bodies that won't ever decompose. If the Lord takes Ian, He's taking him straight into His arms of perfect love. So there's always hope, no matter what. 

Thank you for all your continued love and prayers ❤️

Emergency Prayer

Ian's doctor just called me with heavy news. There is a fungal infection that has invaded Ian's body and blood and the doctor says it is very likely to be fatal. His body is covered in sores and he has had to amp up his pain management. They started their strongest anti-fungal a few days ago but the infection continues to grow very, very quickly every day. He could have as little as 24 hours. 

The girls and I have been in Southern California this week, taking a little time away since we've been quarantined from Ian. I'm feverishly packing up to drive back home today and be with Ian ASAP. 

Please, please pray this infection is banished quickly and Ian is restored. We are still waiting for that big miracle. Ian said today with such deep assurance, "to live is Christ, to die is gain." We are at peace no matter what, but it just doesn't feel like the end, it really doesn't. 

Thank you for your prayers. 

Easter Update

I feel like updating the blog becomes more and more difficult as the weeks pass, with so many twists and turns and emotional crests and valleys, but I'll try my best to catch you up on things as they are. 

Here's the biggest news: Ian has made some serious progress in the digestion department. Over the past few weeks he's moved from clear broth to mashed potatoes to chunky soups to fish tacos. He is still on IV nutrition, though. Some days he doesn't feel like eating anything. They took his stomach pump out about a week ago, and avoiding too much detail I'll just say he's digesting food successfully.  All of this is major progress! It is progress on a superficial level in some ways though, because the deeper disease of leukemia continues to rage. He still has no immune system and can't make any blood for himself. We still need that big fat miracle. 

Ian is continuing to walk laps as often as possible, slowly building his strength back up. Very, very slowly, but he's working on it. Baby steps toward coming home. They even said he might be able to get blood transfusions here in Sunnyvale, making the home care much easier. We are still at least a couple weeks away from that, though. 

They started Ian on a new steroid right around the time of my last post, and it had the wondrous effect of taking away his constantly miserable fevers. It was like Ian was coming back to life again! With him eating and walking and being fever-free, there was a Sunday exactly 2 weeks ago that I felt like I had my husband back again for the first time in months. After so many weeks of little connection and what seemed like imminent death, I had unconsciously cut some of the strings of my heart to Ian. I had prepared myself to be a single mom. I had protected myself by bracing for the worst. 

With Ian coming back to life again, however, these walls protecting my heart started to come down. I started to allow myself to feel hope against all odds for Ian's healing. That Sunday we talked about taking the girls fishing and kayaking and traveling and watching them grow up together.  I gave myself permission to ignore the diagnosis and trust God just might work a miracle and actually bring us through this. It felt momentous. 

I was so excited to bring the girls the next day to see Ian full of life again, but sadly we arrived to a very different picture. He was greenish and feverish and sleepy and totally out of it. We spent the day there, but it was a rough visit. As we drove home that night, something in me broke. I wept and wept, and the girls wailed right along with me. It was so painful to finally feel such hope and connection again only to have it ripped away the very next day. 

Later the hospital called and told me they found a new blood infection and his blood pressure was extremely low. They said I should come, because if the antibiotics didn't work then he would pass very quickly. We spent the next few days close by, and of course he sailed right through it. Ian assured me not to worry, that he'd get through it no problem. He is so full of steady hope, it is quite astonishing. 

At first I defaulted back into numbness. How do you go from such high hopes to being told your husband might die in a matter of hours? How do you even allow yourself to feel the weight of it? I couldn't. So I became a bystander again, but I'd just experienced such connection with Ian that I couldn't possibly stay numb for long.

In a conversation with him I soon broke again, and I've felt deeply broken ever since. I cry at the drop of a hat. I'm trying to keep hold of the hope, to be faithfully married to Ian in sickness and in health, to keep those strings of attachment sewing my heart to his no matter how piercingly painful. I'm trying not to grow numb again, but the cost is high. It's so painful I sometimes want to scream and pound my fists in anger. I feel so much emotion and stress and frustration and grief pounding through my veins daily. It's been really, really hard. 

Part of this has been due to my severe allergy to our cat. At first he didn't effect me, but over the months his dander has built up in our wall-to-wall carpet and I'm suffering constant asthma attacks at home. I have to take my inhaler day and night in order to breathe and I'm up much of the night wheezing and coughing. I've come to the conclusion we need to find a new home for him. Please pray for a perfect fit - ideally with someone who would be happy to let Asha visit him regularly. 

This is heartbreaking for so many reasons. He's an amazing kitty and Asha adores him. She coos starry-eyed over every part of his furry body. He loves to be swaddled in a blanket and cuddled while she reads for hours with him in the papasan chair. He is perfect therapy for her, but perfect torment for me. Our home has become a torture chamber and I feel like I'm becoming a monster from too little sleep and too little oxygen. 

The girls also came down with a bug this week, with burning fevers and runny noses and sore throats. Thankfully it only lasted a couple days, but this means it will be two weeks before any of us can visit Ian. He's been having a headache from the contrast used in a recent CT scan and is still riding the fever waves and so rarely has the energy to talk or text. If we do talk, his voice is so weak I have a difficult time understanding him. This breaks my heart, feeling the distance grow wider and wider as I'm unable to track with him. Even if I get updates from his nurses, it's not the same if I can't be there by his side and observe for myself. It's been so, so hard. 

I feel like I'm in a new temperature of furnace, a deeper level of breaking and remaking. I'm being brought to the end of myself again and again, in deeper ways than ever. In all these very hard things, I know I have to let go and trust. I have to trust all these details are in God's hands. All of this tragedy isn't random or purposeless. I must believe that even though it's tearing me apart, it is deeply healthy and human and healing to weep and mourn and feel this pain. I'm trying to lean into it, but not be overcome by it. It's another kind of tightrope walk. 

My birthday was a week ago, and to be honest it was a pretty sad and lonely day. I winced at the echos of "happy" birthday. Today is Easter, and similarly I entered church this morning full of deep sadness and grief. Again, I winced at the joyful calls of "Happy Easter!" and "He is Risen!" I wasn't happy and I couldn't enter into the joy of resurrection while being tumbled under the waves of sadness. 

Something beautiful happened today, though. I couldn't pull myself out, but with each wave of grief there was a brother or sister there to hug me and listen to me sob and share my sorrows. Over and over, I was cared for and loved on and provided for by people from our church being the hands and heart of Jesus to me. I didn't have to cook one meal, yet the kids ate and played blissfully with friends pretty much nonstop, morning to night. We drove to the service this morning in tears, feeling desperately overwhelmed by sadness and frustration. We drove home tonight filled with calm joy and thankful hearts. I feel renewed and refreshed on so many levels. 

I think I may have entered into the meaning of Easter in a new way this year.  We believe the highest expression of Divine love was communicated to us on a bloody cross. To truly love deeply is to suffer. I can't love Ian and not be torn apart inside. To choose love is to choose to be broken. But like the cross, the brokenness of true love isn't weakness or dysfunction. It is the deepest power and healing. This kind of love that suffers is so much stronger than military might. It is soul force, it is the stuff that actually transforms hearts and relationships and communities and nations. It is the truest kind of power behind the universe that heros like Gandhi and Martin Luther King, Jr. relied upon and illustrated. When I view it through this lens, I can find joy and meaning in my comparatively little corner of suffering and brokenness. I can embrace it and not try to hide or run from it. I want to live according to the grain of the universe, not against it. And at root, the grain of the universe lies in the direction of the cross. 

On my own I couldn't enter into this Truth today though, I was too weak. I didn't want to sing, I didn't want to dance, I didn't want to even look at anyone in the eye. I'm so thankful for all the brothers and sisters who came along side me and served me and entered into my brokenness and pain today so that I could finally enter into the healing joy of resurrection. 

❤️

"Before the Way became flesh,

People tried to escape the suffering and death of the flesh. 

After he came, people gladly accepted suffering and death in order to follow Him.

For them, to be with Him and suffer was far greater than to be without Him and not suffer. 

For them there was only one way.

One must mourn in order to rejoice. 

One must choose death to the passions in order to live.

But if one chooses happiness, one will reap sorrow. 

And if one chooses one's own life, one will surely die...

After He came, everything is reversed for those who follow Him. 

Sorrow has lost its fatal poison. 

Quiet hope lurks and grows in the inner recesses of despair. 

The weight of suffering cannot burden one unto destruction because sweet fruit is lifted from its branches."

- Christ the Eternal Tao, p. 189-190

Miracle, please.

It's past midnight and I'm sitting at Naan n' Curry down the street from UCSF trying to piece together an update. I'm eating a veg thali and watching the flicker of a Bollywood film out the corner of my eye and imagining myself back in India.  Earlier this week I was dreaming of taking the girls to a rainbow gathering in the Republic of Georgia. Fiona asks me daily when we can go back to Thailand. These days I find myself highly tempted toward escapism, wanting to be anywhere but here. 

It's cold and sprinkling outside and it took me what felt like ten hours to find my car, wandering up and down the street shivering with no jacket. My heart feels cold like the night, disconnected from the pain of it all. It's hard to write an update when I'm feeling like a bystander myself, watching the colors continually change from superhuman strength to pain and powerlessness, from keen engineer of survival to a madman speaking dillusional chatter, from hopeful warrior to a helpless shivering man I can hardly recognize, all this and back again, over and over and over. 

The staph infection is gone, but it has now been replaced by a lactobacillus infection. They've switched antibiotics to treat it. Though blood infections sound scary, they can be knocked out pretty effectively if treated early and appropriately. 

Ian has ejected from all basil opiates, meaning he no longer has a continuous flow of narcotics through IV. He can still push a button if he needs it, but he says it doesn't help much anyway. I really wish the occasional dillusional talk went way with the opiates, though. I think it could just be lack of sleep over the past few months catching up with him. 

Now that his pain is under control, we have a beautiful new goal: getting Ian home and out of the hospital. It hurts to think about because I don't know if it will ever be possible with Ian's desire for continued transfusions, but it's helpful to have a clear goal to work towards.  

Our main steps toward that goal are getting him back to eating food (this is the tricky part which includes his gut healing enough to handle food and no longer needing the NG tube siphoning fluid from his stomach) and getting him strong enough to walk the 3 flights of stairs between the parking lot and entrance to our home. Each day he thinks the intestinal infection is a little better, so we are hoping at some point he can pursue food again. This is quite elusive though, and the doctors aren't sure he will ever be able to eat again. We've learned that Ian tends to far surpass any doctor's expectations, however, so the goal still stands regardless of the many skeptical unknowns in how to achieve it. 

Ian is now up to walking 3 laps around the floor daily, and he's determined to slowly increase it. The other day, a nurse even took him for a walk outside to get his first breath of fresh air in nearly two months. 

This picture feels deceiving, though. In a sense it feels like he's come back to life after being on his deathbed. There were many nights I watched his every breath not knowing if it would be his last.  Things have changed so much since then, but in other more significant ways nothing has changed. Keeping it all in perspective, he's still dying of leukemia with his bone marrow and blood packed with only blasts. He's still surviving on daily transfusions and IV nutrition. His fevers have also ramped up with a vengeance this past week, so he spends half his day hiding under the blankets or cooling off with cold packs as he rides the fever wave with every 6 hour dose of Tylenol. It's rough. 

Oh it's so rough. I'm feeling exhausted from driving back and forth to UCSF and watching him suffer so long.  The girls are also having more meltdowns than usual, requiring more than usual patience and wisdom from their tired Mama. 

We need prayers. So many prayers. We need the wings of heaven to scoop us under and warm us with Divine comfort. I need my heart to melt again, I need to be able to cry again and again and not grow cold on this painfully long journey. And we really need healing. Healing for Ian's intestines so he can eat again and come home, healing for the leukemia so he can make his own blood and have an immune system again. There's really no hope at all for Ian's body besides a big fat miracle. 

Update

What a week. 

Ian's beautiful mama just returned to Arizona after weeks of being by his side. She will be dearly missed. We are so thankful for the precious time we had with her and for the many, many nights she stayed up guarding Ian's life and comfort like only a mom can do ❤️

 

Ian's morphine dose kept increasing to cover his pain, and with it came increasing loopiness and dillusional mumbling and loud, random morphine voices tormenting his head. They finally switched him to a different pain med and he became more and more lucid as the morphine drained from his system. We are so thankful to have Ian's mind closer to being back in working order again. 

Ian's intestines have also surprisingly come back to life this past week and things are moving once again. He has been vomiting a lot ever since, however, and getting in and out of the bedside commode is a lot of painful labor for someone whose been bedridden for weeks. His belly has now returned to normal size and he can sit and stand upright. In spite of great pain, he has been working hard to strengthen and re-condition his body with yoga/stretching exercises. He even walked two laps around the floor yesterday, twice! 

If you had seen him try to walk just a few days ago, you would understand the triumph. He tried walking maybe ten feet down the hall and back a couple times, but his swollen belly required him to hunch over like an elderly man and his bedridden body trembled as it labored to take each step. The nurse was so nervous, she didn't think he should try it again without a walker. What a contrast to this picture from yesterday:

Look at that straight back and smile hiding under the mask! 

The girls and I have had our ups and downs. 

Asha was thrilled to find a SIX leaf clover the other day. She has mostly been her sweet joyful self, obsessed with cats and nature and reading and correcting her little sister and an intense longing to connect with people and play with friends. We are back into some semblance of rhythm doing homeschool in the mornings and visiting Ian in the afternoons/evenings. 

Fiona has been my little Eeyore, finding deep sadness in every bump and bruise and imperfect drawing and unfulfilled desire. She misses friends and playgrounds and her Sunday school class and the "old days when Abba wasn't sick." 

She has also come out of her shell of shyness and has learned the joy of sweetly saying hello and brightening the faces of random strangers as we walk the hospital hallways and ride the hospital elevators. She basks in the adoration of her Abba and the nurses and doctors on Ian's floor. There's so much love there, she feels it and shines brighter in it. 

Though Ian's bowels are moving and the distension in his stomach is much better, he still can't eat and continues to be in severe pain from the typhlitis. Pooping hasn't really helped the pain at all, and may be adding to it. Deep sleep comes rarely and is often quickly interrupted by pain or nurses. They also recently found staph infection in his blood. All in all, he's still unltra vulnerable and in extreme pain most of the time. The doctors offered to stop TPN (IV nutrition) today, moving him to the level of hospice comfort care, but Ian was horrified at the thought. 

It's amazing he's still alive and fighting with such stamina. He refuses to give up hope of walking out of that hospital.  I must confess, I've been ready to throw in the towel several times this week. There are times I feel so overwhelmed and exhausted trying to be there for everyone. Walking blindfolded on this seemingly endless line of unknown tomorrows feels way too scary, way too out of my control. But maybe that is part of my training, learning to let go of the illusion of control and lean into the tension of trust. 

Although it's entirely possible, I'm no longer as worried about Ian slipping away overnight. This guy's got a lot of fight left in him. The Lord clearly isn't finished with him yet...

Thank you for your prayers. Please keep them flowing. 

The Week in Pictures

We are still trekking on, day by day. 

Ian's mom is here taking turns with me so that one of us is by his side 24/7. It is a full time job for Ian trying to stay on top of the pain and constantly adjusting his body to find some semblance of comfort and avoiding bed sores. He can no longer walk or even stand more than the fraction of a minute it takes to quickly change his bedding. Sitting up is very difficult too, due to his painfully bloated belly. His intestines are still blocked and paralyzed, leaving everything to collect and swell in his abdominal area. They inserted an NG tube through his nose and into his stomach to drain the extra fluid that builds up. It seems to be helping a bit, siphoning off a couple liters per day.  He hasn't eaten a meal in weeks, but he savors every sip of water and sucking on ice chips. The abscess is still there, but it has not burst. 

Everyone is amazed Ian is still here with us. He's very aware of his body and is able to adjust his depth of breathing in order to minimize pain. He is engineering all kinds of tricks to make himself more comfortable. He is also on increasing amounts of morphine and Demerol, but he's very careful and systematic to preserve as much of his brain in the process of managing the pain. 

Now that it seems Ian may be around a while longer, I'm trying to find a new balance of time/energy with both Ian and the girls. Asha seems to be fine, but little Fiona is missing mama and having a lot of sadness and emotional/social regression. My new goal is to spend every other night with the girls and keep them with me here at the hospital during the day as much as possible. I feel it is important for them to be with Ian and see him with their own little eyes as things develop, to help them process the reality of what's going on. I also feel like I want to be there for them as much as possible during this time, while their little hearts are processing it all. It's not an easy balance to find, but having Ian's mom here has been a life saver. Dear friends have also come for play dates in the hospital family room and brought food and taken the girls for hikes in the woods and to their home for sleepovers. We are finding our way through this storm, day by day. 

Here are some pictures to give you a window into our lives this past week:

❤️ Valentine's Day Selfie: 

Asha thought these flowers outside the hospital were so beautiful, she wanted to take a picture of them for Ian. (He can't have any living plants in his room due to no immune system.) 

We like to let the girls spend a little time with Ian every day. The girls were quiet as mice here, staying occupied while Ian slept. We were all impressed with Fiona's focus coloring her mandala for Abba. 

The family room here has boxes and boxes of puzzle pieces from at least 10 different sets all mixed together. We had no picture to go by, only clues of size and color and texture. The girls and I immersed ourselves in puzzle madness one day and were quite proud of ourselves for this accomplishment:

Asha and Fiona on a hike this morning in Marin:

The warrior himself, smiling:

This guy is amazing, and he is proof of amazing grace in the midst of suffering. He throws these blissful, heavenly, glorious smiles at us throughout each day. They pierce my heart through and give me strength for the next round of moments...

Moment by Moment

Each day Ian is sliding further downhill.

Yesterday he was able to carry a conversation or two. Today, not so much. He pulled a muscle in his rib early this morning and it has caused excruciating pain. He is on oxygen and a lot of narcotics. His belly and feet are so bloated it hurts me to look at them, but the rest of his body is getting thinner and bonier. Still, while waiting to take a muscle relaxer a few minutes ago he paused for a minute or two with a cup of water in one hand and the pill vial in the other and said with a blissful smile "I'm just enjoying the moment."

A friend recently sent us this perfect quote: 

 "To live in the past and future is easy. To live in the present is like threading a needle."  - Walker Percy

We are threading the needle here moment by moment. 

Update

Ian said to me this morning with a peacefully glowing smile, "Well, if Jesus takes me Home then that will be fantastic." Life has not been easy for him lately, but he is still very much alive and carrying on moment to moment. Doctors occasionally remind us of the standing offer for him to give up the steady flow of transfusions and antibiotics in the hospital and just go home, but that doesn't feel right to us. We are waiting on the Lord and His timing, and we are still praying for a miracle of healing. 

The mystery fevers continue unabated. The abscess in Ian's colon is still contained, meaning it hasn't burst and set off the countdown to eternity. The infection as a whole seems to be getting worse, though. The inflammation has at least partially blocked his intestines and his belly is still very swollen and tender. He hasn't been able to eat anything the last four days and is quickly losing weight and energy. They started him on IV nutrition and lipids last night.

Chinua has been here for several weeks now, a faithful friend by Ian's side. He has probably spent half his nights here in the hospital chair - a contraption that transforms into something similar to but not quite like a bed. It's been an amazing gift to me, knowing Ian is in good hands while I'm away with the girls.  

Tomorrow he flies back to his precious wife and kids. Just to give a tiny window into how amazing his wife Rachel is, they had a family trip to India scheduled this month and she made the trip as a single mom with their five kids. All for the sacrifice of love and friendship, so that Chinua could be here to support us. I have often melted into tears of gratitude and amazement at how they as a family have served us in this season. 

Please pray for Fiona as she isn't doing so well. She was up with my mom in the middle of the night screaming with growing pains and wanting me to be there to comfort her. I was with Ian, on the phone trying to calm her down, watching him writhe in fevered agony while Fiona screamed. She isn't eating much and is losing weight. She misses me, and on a deeper level she misses Ian.  I've tried taking her on special one-on-one hikes through the forest and playing at the beach until the sun sets. These sweet moments of connection can't seem to heal the greater wound and instability of our lives right now, though. 

It's been a rough day, full of heavy hearted sighs. This is a treacherous road with endless steep curves that make seeing around the corner impossible. Some days I just want to fold up into a fetal ball and cry. I don't want to open my eyes to the cliffs below or the cliffs above, I just want to sleep until this nightmare is over. But I know that after some tears and rest, I will have renewed strength to open my eyes again and keep climbing - just one step at a time. 

Thank you for your continued thoughts and prayers. 

Insatiable Hope

It's amazing the extreme shifts in perspective and emotions on this intense tightrope roller coaster we are on. Today I'm feeling miraculously peaceful and hopeful and balanced, taking it step by step by step. Thank you all for the flood of prayers, we are feeling them full power. 

Wednesday was a heavy day. After receiving news that the abscess could burst at any time leaving only hours to live, Ian said good bye to each of the girls individually through a storm of grief and tears. Fiona tried to hide in my arms, crying but looking away, shielding her heart from Ian and the painful reality of losing her Abba. Asha, on the other hand, would have stayed by Ian's side all day if she could. They prayed together, cried together, and just laid down in the bed next to each other and soaked in the sadness together.  

After the storm of intense grieving on Wednesday, it felt like the sun came out and double rainbows appeared yesterday. Ian's situation hasn't changed. There is still just a thin skin on the growing abscess veiling his transition into the birth pangs of new life, but today he is still here with us. As little Fiona exclaimed with happy surprise when she said goodbye to Ian Wednesday night after hours of playing with aunties in the waiting room, "Abba's not dead yet!" He is still making us smile and playfully harassing the nurses. He is still creatively engineering new culinary creations from the same hospital menu he's lived off of daily for a combined total of about 8 months. He is still winning Asha at every game of connect four. He is still full of life right now and so we are grateful. 

We are being further trained in the art of not worrying about tomorrow. Sometimes I like to imagine us as monks, as hermits, as sadhus, and the hospital room our cave of spiritual discipline and inner development. Though it isn't easy, it is rich and beautiful and nourishing to our souls. There are jewels and precious metals being forged in our hearts in this fire. Sometimes it is hard to separate the joy and suffering because we are finding ourselves closer to Jesus here, the arrows of our hearts more centered on the True Center of everything in the universe. 

We have no idea how much time we will have. Ian is trying to be extra gentle on his inflamed colon, to prevent it from bursting. Some moments his mouth is so dry and his body so weak and his belly so tender that I feel we are so close the end. I have flashbacks of my dad's final days with blood cancer and see so many similarities. Other times he seems so strong and vibrant that I can't imagine anything taking him out! 

But this is how it is for all of us, we never know how many days we have. We must live a day at a time and seek to truly live each one of them. We are still praying and hoping for an 11th hour miracle, but if the time comes for the abscess to burst we will walk that road moment by moment. Like suffering through labor, we will lean into the Lord and breath each breath given as we wait for the One who gave Ian life in this broken world and body to rebirth him into a far better and eternal one. No matter what, if the eyes of our hearts are open, we are at peace and full of hope. 

Thank you so much for your prayers. 

Quick update

A doctor just came in and said his latest CT scan shows the perforation and abscess is growing. It is in danger of bursting any time. His timeline is now tilting toward hours to days. We are staying by his side as much as possible.

More Heavy News

Life has been a daily fight for survival around here, but Ian is quite a warrior. He is so very weak and the constant high fevers continue to lead him on a roller coaster of shivering chills and burning heat, night and day. He has a post nasal drip that makes him vomit and have to be super aware of sleeping positions and coughing up mucus to make sure he doesn't get pneumonia. They don't expect the cdiff to clear up in his neutropenic condition. 

On top of all this, we also just got news yesterday morning that there is a perforation and possible abscess in the inflamed area of Ian's intestines (where the typhlitis is). This active and growing infection disqualifies him from any further clinical trial treatment and we are now being directed toward palliative care. 

We are not sure what this will look like as he requires cross matched blood transfusions daily as well as a host of IV antibiotics and antifungals. These things make palliative care at home very difficult. We aren't being forced to make any decisions right now, but we are having to face some very heavy options. As always, we just need to take it one day at a time. 

There have been a lot more tears since this news, a lot more leaning into the side of grief. We haven't let go of hope yet, not by a long shot. Ian is a fierce fighter! But we are more and more drawn to surrender. 

I cornered the doctor yesterday to ask her some blunt questions about what to expect and she said his time frame is likely to be counted in days or weeks, but not months. There is also concern about a possible treatment-resistant fungal infection in his colon, which would tilt the timeline toward days rather than weeks. 

I'm trying to prepare the girls for the worst. They saw me weeping in my mom's arms after I heard the latest news. I told them, yet again, that Abba is not doing well. Asha's eyes got big and round as she cringed and sighed a sunken "oh no." Still, I get the sense that they have grown used to these disclosures and don't take them too very seriously.  

Please pray for us, and especially for Ian as he fights valiantly this intense battle that never lets up. 

Update

Updates are hard to write these days. It's continued to be a long, rough road. Constant high fevers persist, regardless of how often or high a dose of Tylenol Ian takes. His stomach is tender and nauseous, though the latest CT scan didn't show the typhlitis getting any worse. These fevers are still a miserable mystery.  

We got another low blow last night with news that Ian was diagnosed with a recurrence of cdiff, his absolute arch enemy in the hospital. When you're hiding in a fevered cave under a pile of blankets, the last thing you want is to have to run to the toilet night and day. Cdiff and constant high fevers are a miserable combination. He has been able to kick cdiff within 36 hours in the past, so we're praying that in spite of zero immune system the big gun antibiotics will be sufficient. If his severe fevers subside after cdiff is under control, then part of the mystery of these fevers will be solved. 

On a brighter note, Ian's best friend has traveled all the way from Thailand to be by his side. Chinua arrived last Sunday and has been here pretty much day and night besides a few days of quarantine to make sure he didn't catch any bugs on the plane. While I'm back and forth spending time with the girls, it's been such a blessing to know Chinua is here. 

Fiona turned 4 on Wednesday and we celebrated with our beloved friends in Sacramento. Ian joined in via FaceTime for the singing, tea party, ice cream and cupcakes. It was bittersweet. I'm thankful for modern technology so he could "be" there with us, but it was also painful. I could see it in his eyes. He wants so much to be there, not just for this birthday but for many more to come...

Oh how it has been a swirl of grief and grace around here. High highs and low lows and everything in between. In Ian's perky moments he has us all rolling in belly aching laughter, but constant fevers lately have deflated him significantly. These days are more full of heavy sighs and reminders to take it one day at a time. 

Thank you for your prayers as we continue to run this marathon. 

Grace for Today

Well, we have some good news on the quality of life front to share: Ian ate his first solid food yesterday! He shared some chocolate ice cream with Fiona and then later ate a whole breakfast burrito. We thought he'd have to go from clear liquids to shakes or puddings or jello, awful stuff that he couldn't even choke down, but they let him have eggs and avocado inside a tortilla! Since his colon is still tender, he's going gluten free and sticking to just eggs and avocado for a while. It's so good to see him eating solid food again. 

Ian's fevers also seem to have gotten a little better - the spikes aren't quite as high (especially if he takes Tylenol in time) and as long as Tylenol is in his system he's able to have pockets of time fever-free. That's a much appreciated improvement from nonstop high, miserable fevers. Maybe that heavy antifungal is making a difference? We're not sure yet.

There is still a lot of mystery around these fevers. They did a CT scan of his sinuses today to check for possible clues. He's also getting a strange rash all over and mild headaches. 

My mom (bless her heart) is getting a lot of quality time with the girls while I've been with Ian night and day. I'm so thankful to be able to be by his side. We had a few days of deep grieving together, facing the likelihood that he won't be with us much longer.  We're trying to face the facts but still hold on to hope, and take all of this one day at a time. We're learning there's always fresh grace for today, every day. 

Ian this morning, enjoying a fever-free moment.