Sunday Night

I opened the mail today. Then I closed it back up and stuck it in the mail basket again. Being sick is expensive. Medical leave is turning in to disability leave and thus taking a chunk of Chris' paycheck each month with it. I wish I could talk to him and ask what he thinks I should do.

The brakes are just not right...I don't quite know what's WRONG with them, but they aren't right. I wish I could talk to him about that too.

And algebra homework...his department...enough said.

Everywhere I look there are things that Chris does and now I'm doing and I don't like it much at all. I don't need to be reminded that he is important, I already knew. But not because I don't know how to pay bills with a much reduced paycheck or because I don't know what to do with weird brakes...or even the algebra. I know because there is simply a void here without him and it's palpable.

Our pajamas are on, lights are being turned out, prayers said, teeth brushed but Chris is at Swedish and that hurts a lot. And once again, we do not know how this will unfold but we know Who holds us all as it does. The wilderness of Lent is a strong reminder that we are loved and not alone...and still a family.

Church

We went back to church today. I don't know why we ever stopped. For the last three weeks, Swedish and sepsis have so held our attention that we didn't make it to church. Given Chris and his views about worship, I know that he would have wanted us there but somehow we just never made it. We almost didn't today. Chris had another chest tube put in this morning, Swedish called to tell me it was going to happen, I needed to sign, etc. My first thought was oh well, can't make it to church. I'm ashamed of that now. Church is medicine, medicine we need badly and it was good to be there.

How many times do I do that to God?? How many times do I basically say oh well that devotional practice has to wait for now, I'm too busy, or I can't make it to church, I'm too tired. I'm grateful God doesn't take that attitude with me.

Today

Monday morning at 11:30 a.m. Chris is having a small surgery to insert a PEG line for his tube feeds and to put in a trach tube so that the ventilator doesn't have to hook to a tube in his mouth. Three weeks ago, you would never have convinced me that we would still even be at Swedish today and yet last night I signed the consent form for this surgery. I want the tube out of his mouth, I want the feeding tube out of his nose and I want him to continue to heal in comfort. Priorities change, so do people. The ventilator is going to take time for him to wean. Cancer isn't really something I even think about anymore but Chris will when he wakes up I'm sure. That's when I'm going to tell him that going home as a family is the only goal the kids and I have right now. We just plain want to talk with him again, to be with him and to know that he knows we love him.

That's what I'm learning...we think long range in life but long range is best left to God. All any of us is assured of is today. Today I asked the nurse to keep him really sedated so he didn't feel the tube. Sepsis takes time, LOTS of time...to heal. And TODAY...just knowing he is comfortable is all the three of us really want.

Daily Bread

I love those eyes...our children have them also. They may have my hair but they have their dad's eyes. For more than two weeks now, I have looked only into theirs but today I saw his again...barely, and with a lot of groggy blinking but enough to count for daily bread. Chris is SLOWLY waking up, the ventilator is turned down tremendously and during the night, while I slept, he did what is known as a spontaneous breathing test and, in classic Chris form, he aced that test and coming off the ventilator in the next two days is a real strong possibility.

I wanted to go to Antigua for vacation last summer, I found that settling for the nearby Lake Quinault wasn't settling, it was PERFECT. I wanted a new house in the U District, I am happy and peaceful with mine in Fairwood. I wanted a liver resection, I am happy just to have open eyes. Life is like that. God unfolds an amazingly beautiful and wonderful story for us amidst us making our own plans and there is always that Presence and a strong peace.

Pretty hazel blue eyes, so pretty God chose them for our kids as well. Happy to see them again.

An Answer

I want to answer a question in this venue because my inbox is so filled with emails asking it that this is easier. How do we do this? How do we do it every day? We don't. The Christ in us does. Simply put, God DOES meet us each where we are. I, not only have ZERO doubt in God, but I am perfectly assured of Him. As my brother in law and I discussed last night, it really IS that peace which passes understanding.

Is it easy? NO. Is it painful? YES. Are we tired? ABSOLUTELY. Are we living a nightmare? WITHOUT A DOUBT. Do we have a Loving Presence? MORE THAN YOU KNOW!! And in the midst of all of this, there is a longing for staying in relationship with the Wordless Mystery who still amazes me.

One of my best friends in all the world just reminded me of Romans 8:38-39!! NOTHING separates us from God. We stand as living proof.

Monday

We had a moment of normalcy yesterday. Eric and I headed in to Swedish to be with Chris..."Smells Like Teen Spirit" came on the radio. Radio instantly got flipped to full blast, Nirvana was good medicine. For just a couple of minutes, we weren't dealing with sepsis, we didn't feel like a family going through the scariest depths of critical illness and we were just a mom and a son, blasting Nirvana. And it was a retreat. I wonder how Kurt Cobain would feel to know that I listed him in my journal last night as part of my daily bread.

It's been two weeks as of last night that Chris has been on the ventilator. In those two weeks, my kids have seen their dad be poked, prodded, tested, turned over, and lifeless. They lovingly thread their fingers through his, they lay their heads on his leg and put his hand on their heads so he can feel his babies underneath his touch and they talk. They talk about everything and anything and they do the very best they know how to remind him they need him to come home because they love their dad.

I'm sitting at Chris' bedside now making a Walmart list. We're out of hair conditioner and airsoft bb's and both have equal importance to the people in our house. I need to get the brakes checked, I need to stop by Safeway, I need to talk to a liver surgeon, I need to vacuum. Life is surreal on the one hand and normal on the other. Normal invades the surreal space we occupy and adds both comfort and annoyance...and that, in itself, is a new normal.

I wish I could give this nice neat and predictable update to the people who ask. The simple fact is that we don't know. Sepsis heals when sepsis heals. Fever comes, fever goes. And getting off a ventilator is a process that we both know about and yet do not understand. Teenagers now know what "peep" is on a ventilator, that they saturate normal air at about 99% and Chris saturates on a vent at about 97%. The O2 clip has gone on everyone's finger at some point here. "Can I have the debit card and what's his creatine level?" "We're out of orange juice and did his fever come back?"

And so begins our third week in the wilderness...that outstretched hand of Jesus pulling us through this Lent. Easter can't come soon enough.

Grace for your journey,
Leigh

Email box flooded again. You guys are SO SWEET. What a lot of prayer being lifted up!! Thanks so much.

I <3 my friends SO MUCH!!!

Explanations

What good friends. And how VERY blessed. My inbox was FLOODED with emails after yesterday's blog so let me set the record straight. We love our surgeons, our colon team is great, our liver team is amazing and our oncologist is the best. Couple that with a fabulous primary care physician and we are blessed. Yesterday's issue was solely and firmly on the shoulders of the ICU team and their doctor who did not think the physicians chosen BY US warranted being included in something significant. Toss in that they didn't call me and there is plenty of upset feelings by a LOT of people. But to set things straight, we highly recommend the physicians we have chosen and have been very well cared for by them all. This was an ICU only issue.

I chose to vent my frustration in my blog based on the advice of a lot of close friends and good counseling advice. The fact is that Father Ely is right, Jesus was angry when anger was justified and hiding from those feelings because they are uncomfortable is not healthy. Anger and hurt have been vented, apologies from ICU have been given, I was called last night for minor drug changes and it's time to move on to more wellness for Chris.

Will I vent in my blog again? Most likely. Would I like your prayers on this Sunday morning? Totally. And do I appreciate the overwhelming outpouring of support yesterday? More than you know.

Grace (and patience) for your journey,
Leigh

Frustration

How does one balance being grace-filled with being direct and clear with people?? It's a tightrope I am walking this morning and I'm struggling with anger and hurt amidst knowing that I want to be Christ-like. Father Ely came by though, he reminded me that Jesus Himself got angry. That helped.

I was resting last night, in part because I trusted the ICU to call me if anything happened. At 5 a.m. Chris' lung collapsed and no one ever bothered to call me. More upsetting to my spirit, no one called our surgeon or his practice and the poor resident met me with deep apologies and upset feelings of his own this morning. I was met with an informed consent form and little explanation other than to sign because he needed a chest tube. I was also told he was back on a drug that our liver surgeon specifically didn't want to see in place. And the complexity of conventional hospital medicine infuriated me to no end. But what does grace demand here???

How does one balance kindness and grace with the anger and hurt of being left out of the healthcare of a critically ill spouse?? And how does an ICU doctor who is not even known to me decide to leave out of the loop the surgery practice in whom I place my trust???

Needless to say, I'm struggling with trust here this morning. Struggling to trust the ICU team, struggling to trust Swedish as a whole and beginning to struggle to trust conventional medicine entirely. For a family that strongly believes in and benefits from natural medicine, this experience is disheartening and I find myself deeply saddened this morning.

Chris is resting comfortably, chest tube in place. I am told that this won't have an impact on his overall wellness plan. I'm finding being on my knees an easier place to be at the moment. Trust in the Great Physician is still a slam dunk.

Grace for your journey,
Leigh

The Theology of Nemo

In the movie Finding Nemo, little Nemo is just totally crestfallen at one point, thinking he can't make anything work out and his friend Dory comes along...

Hey Mr Grump Gills You know what you gotta do when life gets you down?
Just keep swimming Just keep swimming
Just keep swimming swimming swimming

ICU is a tough place to be day in and day out and several people have said, "How do you and the kids keep doing it?" Answer: We just keep swimming...and praying.

http://www.youtube.com/watch?v=CmyUkm2qlhA&NR=1

Ash Wednesday

One year we gave up coffee for Lent, I about died. One year we gave up alcohol, that was simple. One year we tried sugar, we found creative ways to cheat. One year we gave up all drinks but water, I managed to fabricate medical reasons for a few extra ones. We haven't really been stellar at Lenten disciplines. This year, however, discipline is being thrust upon us and the significance of the day is not lost on me. This year we ARE in the wilderness, at least to us, as Lent begins and I'm comforted by the Presence of Jesus here with us but I'm still afraid.

So, here I am alone with Chris in his room at Swedish. He's breathing through a ventilator, he has more iv lines than I have ever seen on a human being, he is motionless and I take his hand and lace my fingers through his and squeeze his and tell him I'm here. I'm in a wilderness I have never before experienced and I hate it. I hate it for him, I hate it for me, I hate it for Eric and Emily, I just hate it. But this is where we are and I can't change it. And I need Jesus like I have never needed Jesus before and it's Ash Wednesday and I feel His outstretched hand in this wilderness and together we walk .

As I finish this up, the repsiratory therapist has just drawn a blood gas on him and it's good news so his oxygen is being turned down a tad. Another baby step toward Easter Sunday. I'm glad I don't have to do this alone and that Jesus meets us in the wilderness...it would be crushingly unbearable without Him.

Tuesday Afternoon

Eric has his head on the edge of the bed, he has Chris' hand resting on top of it. I know Chris is happy, his baby in his lap essentially and ever the dad. Who is doing the comforting here or it it both of them?? Eric, reminding Chris that he needs a dad, and yet showing me and Chris both that he has grown to be a man who can comfort us as well.

Emily is sleeping on the cot in the corner, her day was made not by her good grades or anything like that, but because his oxygen needs are a little less. Life has taught us how to read a ventilator...ten days after seeing one for the first time in our lives. When you leave one afternoon and dad is at 90% oxygen and you come back from class the next morning and it's 60% you smile more. Is he out of the woods?? We don't really know. Is he getting better? We THINK so but again, we don't really know. But it's a start...a teensy little baby step toward normalcy, toward being home again.

Monday

I came back from getting the kids today and one of the dearest people on campus at Seattle U was praying with Chris. Father Ely had come to call. I refer to him as dear because this is how Chris has for years described him to me and I am very honored to get to know him better during this time. And Chris was right, he is just more than dear. He told me the Jesuits wake up and start praying for Chris first thing every morning. I wonder how many people are praying for him. Riddick, his brother, and I have agreed to tell everyone we can to pray for him and Riddick is a faithful brother in Christ to his brother here because my inbox is flooded with Moravian clergy praying for Chris.

Prayer is everything. Prayer is medicine and prayer is what keeps me going and what I know keeps Chris going too. I read every single prayer to him. I cry through most of them. He is laying next to me here, covering him is the prayer shawl the women of Home Moravian Church made for him and I feel God in this place. There is a sacred Presence here. The kids are on their way home, it's a quiet peaceful time of day and God is here with us. The kids were GREAT today, once again proving we do parenting really well. Eric talked to him and then took a nap on the cot, Emily talked to him amidst doing some thrift store shopping and we ate cupcakes from Starbucks to celebrate a baby step for dad.

And thus, home is slowly coming to Swedish, more and more of our personal things filling the space, more and more nurses knowing our kids on a first name basis and kids more and more familiar with the ICU and showing their own kindnesses and helping people. This is how we did chemo, this is how we did radiation, this is how we do life. A burden too heavy for one person can be shared by four and made lighter. That's what it means to be a family.

Chris is holding his own. His oxygen needs are slightly down today, that's a good thing. His heart and blood pressure remain strong and steady and his sheer determination to live is apparent and doctors smiled today. Is he out of the woods?? They say not yet. Is this still a long shot? They say yes but less so. Do they really know?? Of course not...they are not God.

God is God, they are not, we are not, and we are grateful for that. And once again, we complete a day in ICU, our 11th. How many more lay ahead?? We simply do not know. But tomorrow, kids will hop on a bus in front of our house, they will walk from the bus stop to the hospital, they will bound in and say good morning to us and we will be a family and one very aware of our Loving God.

Grace for your journey,
Leigh

Prayer

A brother praying his heart out in Pennsylvania, a wife praying her heart out in Seattle. And better numbers on Chris' monitor. Thank you God.

Sunday

Our kids are SO COOL!!! As I type this Emily holds one hand, Eric holds the other and they are just loving their dad to pieces and this mom is pretty danged swelled up with tears. No matter what else either of us accomplishes in life or has already accomplished, we have done parenting really well because they are EXCEPTIONAL people.

It's hard to say to your kids, "The doctor thinks it's a long shot." But today I told my kids that. And then I reminded them of Lazarus and Jesus and that Dr. Precht is not giving up and neither are we. So here we are, all four of us, just like we have been from May 15th the day he was diagnosed...together.

God is God are we are not. Neither are our doctors or our nurses and in God we put our faith and to God we pray. God is at work here and we take each moment as it comes, aware that we are a family but more especially that we are children of a Loving God.

Saturday

"Where ya'll from?" When the ICU doctor came in and talked with me this morning he asked that question. My heart just kinda swelled up. Seems like God knows that we need comfort food for the soul and southern accents and doctors who know that grits go better with eggs and bacon than hashbrowns ever could are comforting to our souls.

There is so much grace in this place, I have new appreciation for what it means to be kind and how people who are totally sedated and don't know anything that is going on are still human beings who need to be covered and treated with respect. Chris hasn't been awake since Sunday night, my last memory was of him terrified because he couldn't breathe and he was trying so hard to get it under control and now I know his lungs just wouldn't let him. For the last week I have talked TO him, I have read TO him and the kids and I have loved on him. And yet he is still the dad and we finish sentences FOR him. Eric says "hi dad", Emily or I utter Chris' line back, "hi sport." And the word princess fills my heart each time Emily walks in the room because I know he is dying to get the word out himself.

Tomorrow is Valentine's Day. For years now, Chris and I have celebrated it with our kids, me and Eric and Chris and Emily. And I know more than anything he would like to take her to dinner and to replace the pendant he gave her a few years ago that she lost on campus recently. And that hurts, it hurts for her but it hurts for him and, given that, Eric and I have decided to celebrate the day some later time.

His kidneys are not working well, he is putting out urine but it's not clearing his toxins and so his blood work indicates it may be time to initiate some dialysis. Why does that feel like failure to me?? And yet no one is giving up, our liver surgeon, a man for whom I have deep respect, is not ready to give up on him. I, by no means, am so we just need to pray a little harder for these kidneys to do their filtering job in addition to just making urine.

God is so totally in this place. God so totally meets us each where we are and God knows this story and trusting is all we need to do. Trust is hard and yet it's all we have so trust is what we give. My husband is laying in that bed, Emily's dad is in that bed, Eric's dad is in that bed, but most importantly, a child of God is laying in that bed and that's what I most realize. Chris is so much more than husband or father, or professor, or trumpet player, he is my brother in Christ. And this is where we are...children of God, not patient and family, but children of God. And we give this to Him and we wait.

Grace for your journey,
Leigh

Another Day in ICU

Chris is stable this morning, nothing improved overnight but nothing got worse. His pulse is a little high but that's apparently a side effect of some drugs. His platelets went down and that's apparently a side effect of being so sick. And I waffle between tears and smiles when doctors talk. I hang on every word, I ask a lot of questions and I have been met with tremendous grace.

Dr. Roper is the ICU doctor here and I like him a lot. He's Southern, he's got a GREAT accent that reminds me of being a kid and he makes me feel safe. It makes me wonder if MY kids feel safe, then I wonder how can they, how can they live normal lives when our lives are anything BUT normal. Eric's not in school, none of the social workers here think he should be, his school agrees and understands, I don't think he should be, Chris needs him here and more importantly Eric wants to be here. That's not normal but it's all we have.

Emily goes to class across the street and comes back and forth. Other freshman go to student dining and talk about mixers and parties and where they are going on Friday night but Emily comes to Swedish, she eats hospital food, she naps on a cot in her dad's room and does her homework on her laptop with the hospital's wireless connection. That's not normal either.

And I spend my days torn between motherhood and being a wife. I can't leave and yet I can't watch monitors so I choose to pray, to read, write and talk to Chris. And none of that is normal either. But this is where we are and this is where God meets us, amidst the not normal, amidst our worries and our tears, amidst our impatience and our not understanding.

I went to sleep thinking about Romans and patience building perseverance and wanting so badly to learn patience quickly and realizing how ridiculous that concept really is and having to step back and say "Okay God, I get it, You want me to do this trust fall here and give up the having to know and give up the having to have some control and learn that control is sin in my life and that surrender is the path to closeness with You."

Why didn't anyone cover this part in Sunday School or maybe they did and I was so busy coloring my leaflet and trying to make Joseph's coat prettier than the next girl's that I didn't realize. I look at the scriptures with new eyes suddenly...real people, scared and worried and desperately wanting normal and finding that God had another plan and both wanting to serve God but wanting to maintain some control. Because control is what human beings want and do and crave and I'm realizing it's of Satan not of God. Control never was ours to start with when it comes down to it. So I'm once again surrendering this morning to a God that knows this story, even before we knew there WAS a story. A story that God knows the beginning, end and middle of and one in which I fall but don't even have a script with my lines so I'm stumbling around the stage not knowing where I fit in. And yet I do. I fit in. And God will feed me the lines when it's my time to know them. Maybe He was all along, I was just too busy editing.

Romans 5:3-7

Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

This was the passage my bible fell open to this evening, when I was sitting down to read something for Chris and me. I wanted to take a short break from John. Rejoicing in suffering?? And yet I feel SOMETHING, it's hard to call it rejoicing because I hurt to see him hurt but I do know that we are growing, growing as people, growing as a family, growing in faith. And I believe Chris is also growing in faith. He is supported, sustained and loved through your prayers, your emails, your love. Thank you seems so inadequate that I am ashamed not to have the words to share my heart.

Continue to pray for him please. He is making small forward moving baby steps and doctors are encouraged and through it we are each learning perseverance. I pray, in time, our characters reflect the goodness and the grace of standing in the Presence of God amidst the hardest thing any of us has ever done. I pray that character produces great hope in each one of us. We are forever changed, we are forever new, we are forever in awe of a Savior that holds us tightest when life is hardest and we are forever in awe of how He lives in each of you as you love us and lift us up to him.

Grace for your journey,
Leigh

KEEP PRAYING PEOPLE!!!

Doctors are ENCOURAGED at both the stability and the baby steps forward Chris has made overnight. They are zoning in on his portacath, that is used for him to get chemo, as the potential source of the bacteria that has caused this. Our liver surgeon, a heck of a great guy, is ready to pull it out today and get that area clean.

I am reading your prayers to Chris. I am reading the Gospel of John to him as well. After each miracle story, I am praying with him, reminding him that we worship a God that is alive and well and performing healing today just like then. I read the story of the wedding feast last night and I said to Chris, "At the touch of His hand, water became not only wine but fine wine. And this same Jesus is our Lord today. We claim the healing power and ask boldly for such a touch by Him."

There are NO WORDS to this experience and EACH OF YOU is as important as any surgeon, any infectious disease doctor, any nurse, anyone of us who sit with him...because you are praying. And prayer is medicine that is stronger and more important than anything here at Swedish. I am getting prayers and supportive emails to my inbox all the time, I spend the day reading them to Chris and we are sharing this with everyone. It's the power of the Holy Spirit that is at work in each of you that is helping him. Thank you for taking care of him in such a Godly way. Thank you for helping the doctors have good discernment.

So, keep praying!!!

Grace

As I type this, I am listening to Emily and Eric sitting on either side of their dad, telling him how much they love him, they need him and all of the things that they love about him and why they need him to get well and come home. Needless to say, tears stream down my cheeks. This is grace, the grace of children.

I, in turn, am reading the COUNTLESS emails and facebook posts that are flooding my inbox, so many people all over praying for Chris. This, too, is grace.

And we are surrounded by a loving God, who is leading us through. I am sharing, without permission but I trust her to be okay with this, a prayer my cousin Jodi wrote for Chris and Jodi, thank you for your grace.

Dear Lord,
We come to You right now with humble spirits and joyful hearts.... We are overwhelmed by Your mercy and grace bestowed upon us daily. You love us so much, inspite of ourselves and we praise You for that. Today, You alone, understand our pain and fear. You know the valley we are walking through because You have already walked it. We know that this set back has not caught You by surprise but, we are scared none the less. God thank you for the healing that has taken place so far... You are the great physician and we hold tight to our faith, knowing that You are worthy and able! Lord, right now, I pray that Your presence would fill that room right now! I pray believing that RIGHT NOW God, You would place Your healing hands on Chris' kidneys..... I pray believing that right now God, Your arms are wrapped around his body laying an anointing on him that will cure all his ailments. I pray right now God that Your mercy would be felt and there would be a peace in that room that everyone doctor and nurse who enters will feel. Lord, I pray through this that everyone who has the priviledge of treating Chris would feel a change in their own lives with You Lord. We know that the medicine needs time to work and we know that Chris' body needs time to heal. Thank you for the hospital that has the capability to make all those things work physically for him.

Heavenly Father, You are intimately aware of the struggle we are experiencing -- the pain and the despair. You know the desire of our hearts for Chirs to be healed of this illness. We ask now for Your healing touch. We know that You are able and that just like in Bible times, You can heal me. We also understand that You will chose what is best for Chris. We pray that through this trial, we will ALL draw close to You -- that You will be our comfort and strength. We pray that ultimately, whatever happens, You will be glorified through this. We pray this in Jesus’ name, amen.

PRAYERS NEEDED!!!

Chris is in critical condition at Swedish Hospital with Acute Respiratory Distress Syndrome from being septic with a bacterial infection from his surgery last month. The last thing he said to me before they put him on a ventilator, something to which he agreed so he could do everything to make it through this, was this: "I'm 46, I want to do much more with my life and my family. Please pray for my healing." I should have done this two days ago, but here is my request: Chris has two interconnected specific problems as I write this: 1) His blood pressure is too low from the bacterial assault on his body; and 2) His kidneys are struggling to work. Please pray for these two specific situations and then, of course, the more general prayers for his body to fight the infection -- his body WILL do that the best with God's help.

We have good doctors and nurses but this is God's medicine we most need. Pray that God will use these people to be His hands and instruments of healing.