Finding the path to life and joy

Welcome back to the blog! While I've taken a hiatus from posting, I've not stopped writing. It's just that I'm exploring different platforms (and have decided on nothing)...because, I think that I have outgrown this site.

...for those who are 'new' to reading my posts - here's a history: I started this blog as our wedding website. Instead of a site on The Knot (or whatever other site there is), I wanted a place that we could have to keep our family and friends updated on our new life together. So, prior to May 29, 2011 - this site had tabs about our wedding, hotels, registries, our awesome wedding party, the story of how Dan and I met - and posts about wedding prep. After, I wrote about our life together as newlyweds. Then, it became our 'homebase' for Dan's treatment. ...and for the last 3 years, where I have shared my journey through the valley of death...and into life. So, eventually, you'll see something new!

That said: let's spend some time here.


Words, phrases - those matter to me. (along with proper punctuation - for the love of God stop using apostrophes to pluralize a word!)  (ahem, let's start over)

Words, phrases - those matter to me. They speak deeply to me.

How many of us have heard, "Oh it's better..." as a phrase to console. "Oh, it's better. Dan is in a better place. It's better for him to no longer suffer, to no longer be living in a body that fights itself."

a) No. That's not helping. because - How can it be better for us to be separated by death?

b) I know that God desires for us (aka all people) to be in relationship. He created us for relationship: first with Him, then with each other. I know that God cherishes relationships - and has graced our marriages as a Sacrament - to be a revelation of His Son to the world. ...so, how could that (our relationship ended by death) be better? How could it be better that this revelation be destroyed by death?

And so, I reasoned that if God allowed this - then, He intended to redeem it. Specifically, I believed - trusted - that He could make good come out of this tragedy. That He could call from light from the darkness of this veil of death - that joy could emerge from the mourning.

Take those words into the frame of our marriage - our covenant of oneness - what was better for one of us, must be better for both of us. This 'better' must be reciprocal by reason. If Dan's death led to resurrection for him - and that IS better, I wholeheartedly concur - then, surely, there must also be resurrection for me.

This is the truth that I clung to as I began the journey of walking through the valley of death. The death of our spouse isn't the end - but the beginning. The valley is where we do the hard work of grieving. God's shadow protects us as we fumble forward - feeling our way toward life - and resurrection.

As I visited Dan on Memorial Day, I had a little conversation with him:

You know, I think the real work of our Sacrament didn't come until you died. It took that release of the flesh to allow me to fully trust you. ...and, it took the release of the flesh for you to fully, unselfishly love - and for me to respond and receive. 

I suppose that's true for all of us. While we are in these bodies, we can never be fully free from selfish ambition or vanity - though we can certainly strive for it. We learn to - sometimes, slowly - sometimes painfully - but, we learn to put the other's needs above ours. We learn to listen. We learn to value the other's voice. presence. help.

Our whole life leading up to marriage is an exercise in, "I can do it myself." (say it in your best toddler voice) We are taught to rely on self...so much so that even God can become an afterthought if we construct our world carefully enough.

This was me. I did this, Dan.
...yes, you did, too. You did, too.

Our journey toward holiness was learning this together.
Our journey toward completion was learning this, even in death.

Finding myself separated from you by death, I looked to you for a guidance - in a way I hadn't in life. I had relied on - and relished - your presence, though I also relied on myself. 
Finding myself without you, I learned to listen for you. I allowed you to be what you wanted to be - 
...the light to help see me through,
...to heal the hurt till the hurt is gone...
...and you consistently led me to Jesus.

...everything I had wanted you to do - to be - in life, you have done in death. 

...and I guess, that's how I know resurrection is real. 
...because somehow,* you are alive and guiding me - though you died. 

When I listen, 
when I quiet myself 
and when I ask: I know.
I know you're...here. 
Still trying to get me to dry my tears and not take life so seriously - to just relax, Jessica.

God is far better - far bigger - than we can even grasp. 


*
This morning, while looking through one of our wedding albums, I was reminded of one of our wedding readings.

1 John 4:7 - 12
Beloved, let us love one another, because love is of God; everyone who loves is begotten by God and knows God. Whoever is without love does not know God, for God is love.  

In this way the love of God was revealed to us: God sent his only Son into the world so that we might have life through him. In this is love: not that we have loved God, but that he loved us and sent his Son as expiation for our sins. Beloved, if God so loved us, we also must love one another.  

*No one has ever seen God. Yet, if we love one another, God remains in us, and his love is brought to perfection in us.

A Sacrament is the revelation of God to the individual and to the world. First, the invisible, almighty, overarching God revealed through Jesus. Not only was God revealed to us through Jesus, but through Jesus, in Jesus, God became accessible to us. We had access suddenly to the Almighty, Ever-living, Everlasting God. Through the Holy Spirit and the reception of Sacraments, not only is God revealed to us, we now become a revelation of God to the world.

This is mind-blowing. And how does St. John instruct us to reveal God? Through love. By loving, we are brought to perfection.

You guys, we are imperfect. We love each other imperfectly. On our best days, we still end up rubbing against each other. My image is that our spouse is like sandpaper for us: smoothing the rough edges - perfecting us through love. But it hurts! But it is worth it - to be smoothed out into our best self.

My friends, if you are in the thick of it - where marriage is hard - where your spouse is grating on you - where you feel like at every turn you are coming up short: stay the course. Lean into the Holy Spirit right now and ask for the grace to be LOVE revealed to each other. Marriage is a beautiful, powerful thing - and precisely because of that, it can be hard.

Receive - don't resist. Yield - don't shield. If you learn to journey toward life together - Love will you bring you to perfection.


Happy anniversary. DK Forever. 

Thankful Thursday: lessons in the midst of illness

Well, I think it's about Day 11. Here are thoughts I've had over the last several days:

God did not cause this illness - but He is allowing it to happen. If he is allowing it, then it must be for my overall good. If it is for my good, I will accept it and seek Him to (understand) it, through it, and for it.

1) I am so glad that I took ANS 270 19 years ago and learned proper handwashing technique. Get the water nice and hot (but not scalding), wet your hands, lather up while singing Happy Birthday - or the ABCs - or counting to 20 (the long way "one-one thousand, two one-thousand"), rinse.

Since the only way to effectively prevent the spread of crypto is good hygiene practices, I'm glad that FC made this part of his class. ...and also that our group did such a horrible job in putting together or presentation on it that the shame for doing so poorly really engrained the concept to my long-term knowledge.

2) Fasting improves my spiritual faculties.
Huh. You'd think that might be part of a good spiritual practice or something....

See that? It's the Sacred Heart of Jesus in the clouds...

3) Spend as much time as you can in the sunshine.
Starting last Tuesday, I have spent time nearly every day just being in the sun. It's the one thing I miss when I'm in the office all day long.

4) Nigel is wise; listen to him.

5) If it is to be - it is not necessarily up to me. I do not have to do it all; I do not have to be it all.
It's okay for me to say no and disappoint others. Those who care about me will understand, and those who don't understand need to learn some adaptability lessons, and I get to teach them! :)

6) You can let others pick the grapes so the birds don't eat them.

At the start of last week, I still had 25% of my arbor abundant with grapes. I intended to pick them for a couple friends. ...finally by Friday, I had to recognize that I wasn't going to have the strength to do it - nor was it probably a good idea for me to pick them for other people. A friend and her mom did come pick grapes - but they had been mostly picked over by the birds. (this lesson also relates to #5)

7) Getting stressed about not being at work is not going to help me get better.
This relates back to #5.
Last week and this week was supposed to be "resume review" week for my class of 60 students. I honestly love this time, but it takes a lot out of me - even when healthy - because it's 15 minute appointments x 60. This year, I thought I'd be smart and spread it out over 2 weeks. It was smart...but, then crypto.  On Monday, I was really getting worried about how I could implement this part of the course without being there.

8) My best ideas come from prayer. 
So, on Monday, as I was upset about still being sick, and concerned about "how to do it all without being there" - I prayed about it. ...and God showed me this great idea to share the burden, but also empower students to be critical and support each other. While I miss out on the opportunity of getting to know my students individually, they can still get the support they need and we can still progress forward.

9) I am basically a cat.
AKA - give your body the rest it needs. See post #3 (being in the sunshine) plus I have taken a nap every day. Each afternoon, I have taken a nap. I'm a napper that needs to be covered up. I love wrapping up in a blanket and sleeping.

10) Essential oils are amazing. Valor, Lavender, Peace & Calming, Stress Away, DiGize...they are really helping buoy me.

11) My circle! 
Leslie (my roommate) has ran errands for the past two weeks picking up loaves of bread, rice, bottled water, coconut water, bananas. Tuesday, I was reaching a breaking point - running out of foods, tired of the BRAT diet for the past week...yesterday, Leslie went to Kroger and bought me some exotic foods: Gingerberry Kombucha (from Synergy - I cannot get enough of the BUBBBLES), English muffins instead of bread, Refresh tea (because Zen was out) and even though it's $4.69: Sweet & Spicy GoodEarth tea (my favorite!). 

I replaced my toothbrush. Well, Leslie did and she picked out a FANCY one. This is the old one. Take no chances.

Dean & Linda have delivered homemade applesauce (I only had one bag from my mom) and chicken noodle soup. ...and some saltines and Vernor's ginger ale yesterday (again, I needed to "spice it up"). ...and maybe some chicken & dumplings soon....

Alex & Charles mowed my lawn on Tuesday in less than 45 minutes. It takes me 2 hours to push mow it; they brought in their rider and took care of business. SO thankful that I no longer have to worry about being the blight in the neighborhood.

Tim fixed my sink and garbage disposal. ...I knew that the disposal wasn't working well...but I didn't realize that the sink was leaking. Saturday morning I discovered that the sink had leaked, water was sitting in a bag of replacement towels - which were now covered in mold...and promptly disposed of.
But now it's all better.

12) Video chats:  My dad helped me fix my toilet on Saturday night (seriously, how many plumbing issues can you discover in a day?) using Facebook video messenger. I think that sucker had been running for a month (resulting in a larger water bill) - and now it's not. Plus, having a broken toilet and cryptosporidium do NOT go together.

13) Joy is a non-negotiable. You can find it every day in every place in every circumstance.
Do not stop until you find it. It's your birthright.

This is my favorite view. My backyard is huge...but I just love the REST that this picture evokes.

How to get a week off in the middle of the semester (without even trying)

I've enjoyed a restful week-off from work.

Of course, I have spent that week dehydrated, chilled, fevered, with body aches and other things (to be discreet). A week ago at this time, I had my first sign of illness. Three hours later, I was sick again. Two hours later, again. This was on repeat for the next 2 days. Next, bring in the nausea. Then the abdominal pain and cramps.

Monday night, my mom asked if I had a fever. I hadn't thought to check, but I wouldn't be surprised since my body was wracked with chills. I took my temperature on Monday night, and it read 100.1. Ok. I had a fever.

After Monday night repeated Sunday night, I googled "diarrhea + fever." The first thing that came up was salmonella. I remembered my aunt Nancy spending time in the hospital with that. I called my doctor's office and had an appointment at 10:30. After ordering a stool sample (ugh. I die.), she gave me a prescription for salmonella - Ciproflaxicin. (or something like that)

I seem to remember hearing about that drug being in a class of drugs with nasty side effects. I google it. Sure enough, this is in a class of drugs (one which Dan took when he had pneumonia) that can cause spontaneous tendon rupture. in the Achilles tendon. I already have some tendinitis in my Achilles, so...I think I'll hold off on that till I get a positive test result.

By Wednesday morning, I'm starting to feel just a bit better. I take a shower - but have to sit down 3 times as I nearly black-out. But my whole back aches, my neck hurts. I'm finally able to check email. I spend the afternoon sitting in the sun, and that seemed to help.

Thursday, I'm feeling better enough to think that I should probably go teach my class. I get to work and feel a bit of a tightness in my chest. I walk to my classroom - on the far end of Engineering (which is connected to Anthony), and I can barely make it. I realize I've got to shorten the day back. I do not have the strength. (However, I end up spending the whole day at the office trying to finish up all those nagging to do's - like write 2 vet school recommendation letters and read through some VMCAS essays). While in the office, I get a phone call.

It's the Ingham County Public Health Nurse. I've tested positive for cryptosporidium. I spend the next 45 minutes learning just what in the world cryptosporidium is. Then, I have to recount all the places I have shopped for groceries, purchased food, eaten food in the last 2 weeks. For the restaurants, I have to remember what I ordered. For the 3 days prior to Sunday, I have to recount what I ate for each meal. I learn that I need at least a 48-hours "incident free" before I return to work. Oops.

So. Cryptosporidium is a parasite/protozoa that happens to be resistant to bleach...and can be quite a little nasty bugger. I'll let you do your own research about it. Turns out 98% of cases go unreported...so it's quite easy to get sick with it when people don't know they're sick!

Remember that antibiotic I was prescribed? Well, it doesn't touch crypto - so, good thing I didn't start taking it. ...even when the medical assistant at the doctor's office tried to cajole me into taking it after the crypto test came back positive. Thank God I have a brain.


Each day, I continue to feel more improvements. I still have yet to get 24-hours d-free, let alone 48.
Let me tell you, I have been learning A LOT in my down time about rest, God, my own abilities...and the writing part of me has been back in action. It's amazing what a lack of food in your body does for clarity! ;)

What Grief Feels Like: Entering my own Holy Week

Tuesday, which was the Fourth of July - a celebration for most of you, was the start of my holy week.

For Christendom, Catholics especially, Holy Week is the span from Jesus' triumphal entry to Jerusalem (Palm Sunday) through his death to Easter. ...and a year ago, July 4 marked our holy week. In one week, I'd gone from triumphant celebration of the Fourth (and a medal placing in a 5k) to becoming a widow. Upon reflecting, I realize this is my holy week. Dan's holy week. Our holy week.

July 4, 2016 - I woke up early to run the Corunna Firecracker 5K with Charles (my brother-in-law), Nate (nephew), and Karen (friend). Charles placed first in his age group, and I placed second. It was my best time of the year thus far. Dan chose not to come because he was in so much pain. Later in the day, he opted not to come to the Mason "tractor parade" either because of the pain.

July 5, 2016 - when I got home from work, Dan told me that he'd cried twice because of all the pain he was in

July 6, 2016 - after my run, when I got home, Dan grabbed my hand and told me that he loved me. When I sat down and asked him why, he said, "because you run. because you have dance parties in your office. because you live life, and you love life. because you can, and I can't."

July 7, 2016 - Dan invited his mom and dad over for supper. We had turkey loaf and some other things that Dan loved. We watched "Mom's Night Out" with his parents. Dan slept in our bed that night. Dan started to cough that night.

July 8, 2016 - We went to the U of M for our normal Friday doctor's visit and chemo. His oxygen levels were lower, and our doctor immediately moved to admit us. Dan found Deacon Wayne when he was getting some blood work done. For some reason, I couldn't stop crying that day. Deacon Wayne came to see us in the afternoon. He said, "Detachment, huh?" ...and I realized that I was so afraid that this was it. I told Dan that I was afraid this was the end. He said, "It's not the end," and we took a nap together.... and then, he got admitted.

...and all the days started to move in a weird slow motion, with every day getting worse. Of those 3 blurred days, my most vivid memories from Saturday and Sunday are praying with my sister-in-law and then with my best friend Pam...and through tears saying, "If this is your will to take him, I know it will be good. But, I don't want you to do it. But, I know you will make it good. But if there is any way, please not now."

I've realized that these were my Gethsemane moments. My moments in the Garden (literally - each time was outside in the sunshine) where I begged God to "let this cup pass from me," and finally resolving, "not as I will, but Yours be done." My last Gethsemane prayer was in the hour before Dan was administered Last Rites, and I prayed with Deacon Wayne. I had no idea how to let Dan go, and I will never "let him go" because he is mine and I am his. We're just holding onto God's hands now, in a much different fashion.

I know what that week was like for me. But, I have no idea what it was like for Dan. Before falling asleep on the 3rd, I talked to Dan about this time last year and told him that I have no idea what it was like for him.

I woke up to "Million Reasons" by Lady Gaga. ...and when I sat down to read the lyrics and hear the song, it fits (for the most part).

Last year at this time, Dan was in so much pain. So much pain that he couldn't leave the house; so much pain that I felt helpless - I didn't know how to make any of this better, and it was so hard to stay in his presence because there was nothing I could do and just watching was excruciating. I did, though - I did stay, I was here - but I think my mind has blocked part of it.

I'm entering the last week. The last, unbearable, unfathomable week.

July 8 was the day I couldn't stop crying. The day Dan wanted his parents to come to the hospital, which he usually didn't because he didn't want to fuss...our last good day together. ...and every day after that just slowly spun out of control...like a helicopter going down in slow motion.

What was it like for Dan? I know that on July 5, he cried twice. He told me it was because the pain was so bad, and I believe that, but I also wonder if God didn't visit him and let him know what was about to happen...because then he told me about how much he loved that I lived life, and slept in our bed for the first time in weeks and held me, and we had dinner with his mom and dad for our last night at home.

"I bow down to pray
to try to make the worse feel better,
Lord show me the way to cut through all this worn out leather...
I have a hundred million reasons to walk way -
but, Baby, I just need one good to stay."

I know Dan held on so long, fought so hard - for me. He told me so. I know he didn't want to leave, to let go - but his body physically could not do it. It fell apart around him. It had given him a million reasons to let go - and he held on for a good one, good one, good one, good one, good one....until it was no longer possible.



You guys...death is real. It exists. It hurts more than anything I have experienced in my life, and the impact will be with me throughout my life. But Dan was right. It wasn't the end. Death does not have the final say: love does. Jesus conquered death - and though we must each endure it, it does not have to be the end. Jesus' resurrection redeemed death - meaning that those who believe in him, through our own death can enter into holiness through that gateway.

“We are not meant to die merely in order to be dead. God could not want that for the creatures to whom he has given the breath of life. We die in order to live.”

Elisabeth Elliot

What grief is like, part 2

The first time I fully felt the trauma of grief, I was in a yoga class in sunny, southern California. I was 2.5 weeks into this...[can't find an appropriate word so we'll leave it at "this"]. At the time, I was still very much feeling the tangible cupping of God's hands around my whole self - just like we might hold a tiny bird that has fallen out of its nest. I hadn't yet experienced the "sadness that just sits on your heart"...though I had moments each day that I cried. Honestly, God gave me a very blissful period where He literally flooded my world with light, life, love, and hope. I call it "buoyed by hope" (which is going to become the name of this blog, btw).

Anyway, I was lying on my mat as we started class, and the instructor began (like they all do), with: "Now, let go of the tension in your body...."

I felt a visceral panic at that phrase: let go. [I still do; word to the wise: don't ever tell people to 'let go' of their dying person. I didn't know how to then, and I don't now - and that just isn't the right phrase. Maybe it's me and I am just sensitive to words, but please, don't use that phrase with me.]

I realized that the tension I felt in my body was what was holding me together. The idea of "letting go" scared me. I felt like that if I lost that tension, I would be losing Dan all over again - and the idea of having to endure that again caused panic. [all while I'm just lying there and breathing; minds are powerful things]

As I moved through that session, I started to notice all the areas that I hurt, that were tense. My quadriceps, especially, seemed to ache with the poses. They'd never hurt before like that. My heart just kept wishing that this time could be over because I just couldn't do it - I couldn't confront this beast of tension...I couldn't slay the dragon of despair that had stolen my love.

I began to feel all of the trauma that my body had endured. ...and it took my breath away. During the final relaxation sequence where you relax your body into corpse pose (lying still, focusing on breath), I felt as if I was moving. Though lying completely still, I felt as if I was lying on a hammock blowing in the wind. [It was so weird]

As we left, I just couldn't shake that "woosy" feeling. I felt so disoriented - like I need to sit on the ground. When we returned home, I grabbed my journal and immediately went outside to sit on the ground, against a tree trunk...and.... I prayed. I cried a bit. PJ came outside and I asked her for a hug - and I feel like I just collapsed. I sobbed. Dan's death had just happened so fast, from out of nowhere...it just happened. So fast. From out of nowhere.

Blindsided.

That day I took a nap and woke up feeling like I had literally been driven over by a truck. The next day - same thing. In fact, for the past month, my entire body has hurt with pain. For a while, I woke up with headaches every morning. My shoulders ached. My quads could find no relief. I visited my chiropractor weekly, had two massages, went to gentle yoga when I could. I took Aleve; I slathered on BioFreeze; I used the heating pad.

The breaking point was last Wednesday. I just couldn't take the hurt any more. I felt exhausted physically, mentally, emotionally. The best way to describe it is like a rag that has been completely wrung out. Picture the rag still in your hands in that twisted motion: that is what grief feels like.



Now: praise be to God, the next morning I woke up and I didn't hurt! I have woken up the past few mornings and not hurt. So, so thankful!

8/11

One month.

I can't even really begin to bring my mind to focus on the fact that I lost Dan a month ago. Today, the heartstrings are raw. The emotions are fresh. Today, sadness comes at me stronger than most days.

I was looking through Facebook to find a picture Dan and I took a year ago, and I just saw all of these images of our life from the past year - and the tears flowed fresh. God has protected my heart so much in the last month, sheltering me in his wings, holding me in his hands - allowing me to only feel an allotted amount of sadness each day, and a whole lot of joy and love.

I can't even begin to wrap my mind around the loss of Dan. There are moments where I don't even feel I've lost him, at all; the physical connection is lost, but the spiritual one more enhanced. My friend: I miss my friend so much. There are questions that come up in random conversations that I know Dan could answer, but I can't ask him. My Shining Steed: always reliable, ever loyal, so good to me.

Seeing pictures from the past year calls to mind how much life we made in the last year. A year ago today, I interviewed for my job. Today, I mourn for what we won't get to do together as the department power couple. (our joke) He was so excited to contribute to the Michigan State livestock judging program and establish it, once again, as a strong program; to give students something to aim for, to build their college experience around. I was excited to help him make it a reality. I was (and still am) excited to be able to contribute to the future of a program (department) that had played such a fundamental role in Dan's development as a person and professional - and in the lives of his closest friends.

Working with him was, honestly, a dream come true for me. He would joke a lot about having to work with your wife, but - I know he enjoyed it. He was proud of the work that I am doing here, and I love that I got to share that with him.

I look at this past year, and I think: we lived. We fully lived this year, and we made a life here - even in just a year.

My biggest fear a month ago was, "how will I live without Dan?" I don't mean the daily tasks of life - I know how to pay bills, cook meals, etc. I mean, LIVE - be present; enjoy the moment; love the day. THAT is what Dan taught me to do - to not worry about tomorrow, but to seek first this day: to live. When I expressed my fear to Deacon Wayne that day, he said, "Oh Jessica, you are a better student than you give yourself credit for. I think you've learned that lesson."

That, along with so much grace from God - and frequent surprises from Dan, have allowed me to LIVE this past month. There are moments that are sad, that are hard, that are good. There are moments where I cry and moments where I laugh; moments that I feel all the things, and moments when I just "am." Every day, I ask God to help me feel what I need to feel in order to heal. He does.

I've mentioned on Facebook that Dan gives me songs. Here's Month 1 Playlist:

1. You are so good to me - Third Day
2. Friends in Low Places - Garth Brooks
3. Barbed Wire Halo - Aaron Watson
4. Don't Fence Me In - Gene Autry
5. I'll Be Here For You - Randy Rogers Band
6. Crazy Love - Van Morrison
7. Rocket Man - Elton John
8. The Road Goes on Forever - Robert Earl Keen
9. Learning to Fly - Tom Petty & the Heartbreakers
10. I Turn to You - Selah


[Okay, I feel better. Thanks for listening, world.]

Jessica's random heart

Well, I'm about to ruin my mascara - and probably yours, so you're welcome in advance. [Why do I even wear mascara? It's just giving me a forewarning that I'll cry later in the day.]

I started a CaringBridge site for updates about Dan's health because we've finally embraced the fact that we are going to be moving forward with a bone marrow transplant (either a research trial (3rd party) or allopathic - from a donor - his sister). There will be lots of specific prayer requests that I will throw out at you, our fantastic support system. And, I hope you know that I don't say that as lip service; truly, every time you pray for us, we can feel it.

As I worked on just writing out our journey the last two years, I am honestly overwhelmed - overcome with emotions ranging from gratitude to shock that we haven't simply survived. In the midst of some crazy chaos, we have thrived; and, I think - well, I don't think - I know, it's because we know the Calm of the storm: it's Jesus.

When I think about just the past year and all that we have endured... I have no words. Shock and awe.

It took meeting with our bone marrow doctor ten days ago for us to finally realize that we have been living in a cycle of sickness for A LONG TIME...and that the transplant, while very scary, is our best option for breaking that cycle. For a while, I think we both thought that we could do it - we have done it for years...but, at what cost?

Many of you have commented over the year about my strength - and I thank you for that. I find strength from lots of you, and from Dan, and I have a model of great strength. My grandma Ellen cared for my grandpa Joe for 3 years while he was in kidney failure, and I don't know how she did it. Now that I have lived this journey, I have such profound respect for her. These are not easy tasks, but we do them because we can't imagine any other way. We don't know how to not do it, to not give, to not love, to not wear ourselves out in the caring for the person we love most.

While we certainly don't do it perfectly, and each day is its own battle with a cross to bear... we continue to press on because that is the way forward to life. We may cry, but that is where we find release. I find such healing from my tears. I am not ashamed to cry or to feel so deeply.

But creating this site was a really big deal for me, you guys. I'm admitting that this...this...is so much bigger, so much more serious than I live my life thinking. I kind of have this thought that these sites are only for the serious, life-threatening things...and to admit that this is where we are - damn, you guys! "I can't even" put it into words.

Also, I'm really quite disappointed that I can't customize the site more. The "cover page" (in facebook language) options are so super lame. What I WANT that part of the page to say is this because it's my mantra right now:

Blessed be the God and Father of our Lord Jesus Christ, the Father of compassion and God of all encouragement, who encourages us in our every affliction so that we may be able to encourage those who are in any affliction with the encouragement with which we ourselves are encouraged by God.

For as Christ's sufferings overflow to us, so through Christ does our encouragement overflow. If we are afflicted, it is for your encouragement and salvation; if we are encouraged, it is for your encouragement, which enables you to endure the same sufferings that we suffer. 

Our hope for you is firm, for we know that as you share in the sufferings, you also share in the encouragement.

This is what it's all about for me. In the last year, God has become so much closer, so much more tangible to me through this affliction and suffering. To think how far off from him I was then, and how much more there is of His heart for me to know...I am only on the far edge. I am closer than I was, but still so far from really grasping how wide, and high, and deep is the love of Christ Jesus for us.

I gather strength and encouragement from those who have walked the road of suffering and affliction before me; who have endured the pain of seeing their spouse suffer...they have given me strength to do this...and that will overflow into the hearts of those who walk with us. We are the body of Christ - and we must journey together if we are to find healing and wholeness.

Marriage Advice and Expectations

Well, on Sunday, we mark 5 years since saying, "I do" to the list of items we vowed to be together through. Not simply together, though; not simply by each other's side...but, to grow together - to become one through good and bad, rich and poor, sickness and health. As we close in on 5 years, I finally think I have some advice to offer. (Maybe.)



Some time after getting married, I read someone's blog post about marriage advice. She is a Christian woman whose opinion I respect, who'd been married for about 16 years at that time. She had been given this advice and she thought it quite apt: "Have no expectations."

I read that at a point where I was having some type of a struggle with this whole marriage-thing. Don't get me wrong - marriage is the best thing that has happened to me...but, there were times during our first 4 years that it also felt like the worst. Sometimes more of "the worst" than the best, to be honest. It seems so overused to say marriage is "the best hard thing" because sometimes the hard feels SO. HARD.

When I read that post, my first - and pervasive question was, "BUT HOW?" HOW do you have NO expectations? Isn't that the natural thing? To have expectations? To expect something? I just didn't get it. If you don't have expectations, why are you getting married? Don't you want to get something out of it?

...and that, is why the first four years were hard. Because I was way too focused on myself - and what I was getting out of this whole deal. How is this love?

Regarding expectations, I think the first thing a couple should do is examine the role their in-law plays in marriage. As a wife, what role does your mother-in-law take? That is going to be your husband's unspoken expectation of his wife. As a husband, what role does your father-in-law have? That is going to be your wife's unspoken expectation of you. ...and those unspoken expectations are some things that you, as a couple, will have to discuss and address, in your becoming one.

For us, our budget/bookkeeping brought this to light. We were on our honeymoon when our differing expectations started to come to light. After paying for our dinner, Dan handed me the receipt. I balked. What was I supposed to do with this? Why did I need this? He said, "Well, don't you want it, so you can keep track of it? For the budget?" Oh. I didn't realize that was going to be my job. I thought it would be his job!

The other area of expectations that you have to deal with is comparison to others' relationships. I struggled for a long time comparing Dan to my friends' husbands. It certainly wasn't helpful for my relationship with him. Who wants to feel like they don't measure up? In what way is this fair? Moreover, though, in what way is that love?

For me, the greatest lesson I have learned in marriage is how to love. Regarding expectations, I would advise that you currently have no idea how much you don't know how to love. You will be stretched. You will be tried. If you're doing it right, you will be broken. And, really, it's not you who will be broken - it's your expectations. It's your idea of love - and how you thought you were able to - maybe even good at - loving.

The greatest gift I have been given is an immensely patient, gentle, humble man, who is willing to stick with me through life. He isn't perfect; no. But, he has born my inadequacies, infirmities, insults. He loves me through them. He loves me. The greatest gift I have been given is the real experience of living the Sacrament. Marriage is a Sacrament because it's a revelation to the world of who Jesus is; how he loves us, and we love in return. When Dan has born my shortcomings and sins, and loves me anyway, that is a picture of how Jesus loves me. He tells me that I am more than what I do (or don't); I am more.

A lot of people mention the trial of this past year for us. To be honest, this was the best thing for us. I needed something major to snap me out of my self-serving spiral. Spiritually, I was out of touch with the love of God; keeping him at arm's length; afraid of getting too close; afraid of being changed too much; afraid of yielding control. God has saved me through this trial because he showed me how to LOVE Dan.

It's taken 5 years, but I am finally learning how to respect the man that Dan is, to love what he brings to the table - and together we figure out how to overcome our faults. It's taken this life-altering event for us to recognize the gift that each day is, and the gift that each day we have together. Marriage is one of the greatest gifts that we are given - if you are ready to be emptied of yourself and to love another as more than yourself.

⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres.
⁸ Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. ⁹ For we know in part and we prophesy in part, ¹⁰ but when completeness comes, what is in part disappears. ¹¹ When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. ¹² For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
¹³ And now these three remain: faith, hope and love. But the greatest of these is love.  
[1 Corinthians 13]

Catchin' up - or "PCP - yeah, you know me!"

So, an update.

You know, I don't quite know where to start - or what exactly to say/share because "our story" continues to unfold - but, I should at least explain all the things that happened in April with Dan.

Sometime this 'spring' (I think in semesters, so spring starts in January)...like late February? - Dan got the results from a spinal tap and it came back clean. This means that Dan is "cancer-free." There are no more abnormal T-cells in his blood.

His weekly chemo that he was receiving was for the HLH - hemolymphiophagocytisis (or something like that). The HLH was the disorder that our doctor diagnosed him with in early January. When Dan's lymph node was removed July 2015, the doctors thought either Dan had lymphoma or HLH. Part of his treatment for HLH, in addition to the weekly chemo for 8 weeks, was to be on a steriod. In January, he was taking (I believe) 4 steroids each day for 2 weeks, and then that number was weaned by 1 pill, every 2 weeks.

In February, we met with a team in Pediatric Hematology/Oncology - because HLH mostly affects children (as a genetic disorder). They ran several tests to determine the nature of Dan's HLH. Dan is one of the oldest cases of HLH they've seen. Usually someone who develops HLH later in life has an underlying immune disorder which leads to the body's immune system "flipping" and turning on itself. The "good news" was that Dan does NOT have an underlying immune disorder. So, the only cause the team could identify would be chronic, active Epstein-Barr virus.

In early March, Dan's weekly chemo treatments ended and he started receiving chemo every other week. At that time, our doctor had wanted to cut Dan off of the steroid, but his fevers continued. So, she had him just stay on 1/day. The risk of being on a steroid 'long-term' is the development of pneumocystine pneumonia (PCP). To prevent this, our doctor prescribed Dan a monthly treatment of some drug meant to prevent the development of PCP, which he received with his chemo.

His last chemo & PCP-prevention treatment was March 25 (Good Friday). On Easter Sunday, he had a slight fever - but we didn't think much of it - and chalked it up to an active Saturday + chemo (the day we celebrated Easter with the family). That week was a very active week for us. Thursday and Friday marked the start of the Michigan Beef Expo, which is held in the MSU Pavilion. Dan spent several hours there both days. Friday, he spent the day mostly in the arena for the livestock judging contest (which has several inches of dirt).

Saturday, he had a slight fever. Sunday, a fever. Monday, a fever. He had a cough (not productive). On Monday, he walked up the stairs and was out of breath. On Tuesday when I got home from work, he mentioned he was having trouble catching his breath. But, he didn't want me to call the doctor. So, I didn't. [things I would do differently]

Tuesday night, he couldn't sleep because he was coughing and just couldn't catch his breath. Wednesday morning, I woke up to him sitting in a living room chair saying, "I want to go to the ER." Ok! We called UM, and the doctor there was concerned about Dan's ability to breathe and did not want him making the trip to Ann Arbor - so we went to Sparrow.

He was immediately given oxygen and ordered to be admitted (which finally happened 10 hours later). They started treating him for pneumonia (but not PCP). I was in contact with our doctor (McCoy) at UM; she was immediately concerned it was PCP. I said something to the ER doctor about being treated for PCP - and was blown off. His response to me was something like, "We'll start treating him for pneumonia and maybe on Friday, we'll test for PCP."
[yep, happened to be prophetic]

Thursday-day, Dan had a good day. He seemed to be responding. He didn't sleep well Wednesday night because he had a roommate (also named Dan, also had pneumonia). Dan gave me his blessing to be at work. That evening as I was driving to the hospital (which is about 10 minutes from campus), a wave of fear just spread over me. I knew that something was wrong - and I was scared.

I got there and Dan hadn't been able to catch his breath for 45 minutes. He told the nurse, but she had done nothing about it. I got the nurse to come back and she called the doctor who ordered more steroids to try to get Dan to relax. By the time the night shift nurse came (about 2 hrs after my 'fear feeling'), Dan's heartbeat was erratic.

The next few hours were a cluster of activity. More oxygen, different masks, pulse taking, EKG tests (or something), drugs to put his heart back in rhythm. Prayers. Lots of prayers. When I finally left the hospital, I felt like things were stable, but I didn't really know what was going on. I was scared, though. That drive home was a prayer, pleading for Dan's life.

When I got to the hospital that morning, Dan's heart was style out of rhythm because his breathing was still erratic. That morning, an infectious disease doctor came in (a first) to get Dan's history. [Now, on Monday of that week, we visited a naturopath who said that Dan had some time of fungal infection.] So, I asked him, "If Dan has a fungal pneumonia, is the medication that he is on treating that?"

"Oh, no."
"Well, our doctor at UM is very concerned that Dan has PCP." (I also learned that morning that no one from Sparrow had called Dr. McCoy, despite of the fact that I'd given her number to multiple doctors).
"Oh, well, PCP is a fungal pneumonia - and what he is on will not touch a fungal pneumonia. I will change his medicine." [I had no idea that PCP was a fungal pneumonia until this moment]

After his visit, I finally felt like we had someone in our corner. Finally, God was sending us an advocate (besides Mary and St. Raphael and God the Holy Spirit). Dan seemed more stable as the morning went on - and the plan was to switch him to a different mask for a couple hours while he napped (after he ate lunch).

So, I was going to go to the office during nap time and grab some things Dan wanted. I don't think I was at the office 15 minutes before Dan's mom called to say that they were going to move Dan to the Critical Care Unit (also known as ICU). Moving him to the mask caused his breathing to become extremely erratic. The nurse (who was phenomenal) had said earlier that if Dan got worse in any way, they would move him to CCU immediately to prevent the situation from becoming more critical.

I called my mom to let her know. This was the first time since Dan's entrance to the hospital that she cried on the phone with me. I don't know how she does it, but she seems so stoic emotionally when we talk - which lets me feel okay to "let it go"...but this time, she wasn't - and it helped me grasp the seriousness. I then called my dad who was on his way to Michigan to be with me; for the first time (since the hospital visit), he prayed with me on the phone. He wanted to make sure that I was okay to drive myself to the hospital. At the moment, I was.

...and then, I wasn't. I pulled over in a parking lot and started to sob. I cried and cried and pleaded with God to save Dan's life; to heal him; to right this situation. I felt so weak, scared. And, I started to sing. A wave of strength and calm enveloped me; the Holy Spirit was here.

I drove on. A block from the hospital, Dan's mom called to let me know that they wanted to put the ventilator in - but they weren't going to until I arrived. She mentioned something about the tube could be in anywhere from two days to two months.

I got to Dan's room - and a couple nurses were milling around, prepping Dan. His mom had mentioned that Dan wanted to talk to me - but he was in no shape to talk. I got to his side and prayed the Memorare nine times (just like Blessed Mother Teresa says), asked God to send St. Raphael, and a guided 'meditation' of breathing in the healing of the Holy Spirit. Again, I started to sing. The anthem of our week: "Holy Spirit, you are welcome here; come flood this place and fill the atmosphere. Your glory, God, is what our heart longs for, to be overcome by Your presence, Lord."

I cannot describe to you the tangible presence of PEACE that I felt. I knew that we would survive. I knew that in God's time, that tube would come out. I knew that whatever procedures were necessary, God had this. He would allow whatever was necessary - and what wasn't, wouldn't happen.

The plan was to insert the ventilator tube and also give Dan an arterial IV. The arterial IV is the best way to measure blood oxygen. The artery is accessed through the wrist; it's extremely painful to test - so this would make it easier. There was a chance that Dan's heart would go back into rhythm once the ventilator was in; if it did not, then they were going to do a procedure on Saturday where they would have to shock it back into rhythm.

The procedure went well. ...except that Dan woke up during it. His tube was already in, but he remembers waking up and not being able to move and wanting to get the tube out. He did spike a fever after this. I remembered later that the same thing happened when Dan had his lymphectomy...so I wonder if he slightly allergic to anesthesia?

Through it all, peace never left me. When we visited him after the procedure, he looked like the corpus. (for you non-Catholics, that's the body of Christ on the cross) He had been stripped down because of the fever, but covered with a pillow case - and his body was so white, his ankles crossed, his face flushed. Even then, God's peace prevailed. I knew God had him.

The next morning when we arrived at the hospital, I was floored to learn that Dan was 1) awake; 2) responsive; 3) communicative. We did not expect that. In fact, I had sent a message to Dan's siblings to bring books to read to him. We expected that at least on Saturday - and maybe Sunday - Dan would be mostly in a sleeping/coma-like state. Not at all.

It was a miracle! By the next morning, he was continuing to do great. He was being weaned off the ventilator to breathe more on his own, and the tube was removed around 11am. He had that tube in no more than 36 hours. He was still on oxygen. After two hours, he could start talking and eating.
The first thing that Dan ate was Jesus. Our pastor, Father Mark, visited around 2pm and gave us communion.

Dan spent the rest of the week recuperating and getting weaned off oxygen. He was released from the hospital on April 16 (Saturday). Since then, Dan has just continued to build strength and improve.

On April 29, we had our first visit with Dr. McCoy in a month. His blood work was completely normal! For the first time in 2 years, Dan's white blood cells were NORMAL. As a result, she did not have Dan receive chemo, and she weaned his steroid to every other day.

This past Friday, we met with Dr. McCoy again, and his blood work was still good, still normal. Again - no chemo, and now he's on the steroid every 3 days.

What's next? Well, Dr. McCoy is off for the next 5 weeks (but will still have access to Dan's labs and be in touch). Dan will have his blood work drawn every 2 weeks and sent to Ann Arbor. If it's not good - he'll get chemo. If it is...then, maybe we will try no steroid.

What's going on with the transplant? Geez, that's the million dollar question. It's not sustainable for Dan to be on the steroid long-term - since he's already had the complication with PCP. If he is able to be healthy without the steroid, then is a transplant necessary? This is where we are right now. It's very weird. To me, a bone marrow transplant - with all of its risks - shouldn't seem like a choice - like an elective surgery. That's how it feels right now.

I am content to wait to see how Dan responds to the weaning - especially with how good he's been feeling. Dan is content to see how he's doing. (We're not talking wait it out forever - but the next 2-3-4 weeks) [But] We continue to get pressure from those outside of the decision-making process who would like "to plan." I would ask for all of you [who made it this far in the blog] to pray for us in the next month; that our path would be clear - and that we would have peace - and that we would be firm knowing God's with us, regardless of people's opinions.

Anyway. That's the story.

OH WAIT! That's not the whole story...remember on that Friday afternoon and all that was happening? Besides me feeling the tangible presence of peace (the Holy Spirit)...about the time that I was sobbing in the car, my mom met her pastor to pray. She said that while they were praying in the parking lot, this rushing wind came around them and was moving in the trees - very John 3:8. [This reminded me of a conversation we had with a friend's mom the day of Dan's diagnosis; her first encounter with the Holy Spirit moving was wind.] Then, later that afternoon - about the time of Dan's procedure, my dad felt that he needed to pray at that moment for Dan. While praying, he started to speak in tongues (Romans 8 - the Spirit intercedes for us on our behalf), which does not happen to him often.

So freakin' cool. Our God IS an Awesome God.

Believe it. [or don't; you do have that option]

'Cause I'm B-M-T!

Please, channel your inner-metalhead and chant this with me:
Oy!
Oy!
Oy!
....'cause I'm B-M-T
DYNO-MITE!
B. M. T.

Thank you AC/DC for defining "badass" throughout my high-schoolhood. This little blast of creativity has helped offer up a more fun way of starting this post than what I've been feeling: "Sucks to suck."

So, anyway, you guys - here's the update you've all been waiting for and I'll cut right to the point:

The hematologist-oncologist and the team of immuno-hematologists have all recommended that Dan have a bone marrow transplant within the next three months.

Yep.

Did you just feel sucker-punched? A blow to the gut?

Because that's how I have been feeling. Our doctor (Dr. McCoy - hematologist-oncologist) gave her recommendation to us 2 weeks ago, and the immuno-team last week. And in spite of all that talk a few weeks ago about being detached from the outcome, I just have had a hard time grappling with this.

Truth of it all: I don't want it. I don't want the 5 days of chemo so intense that it decimates your system. I don't want the month-long hospital stay while we wait to see if Dan's body will accept the new life-force. I don't want the 100 days of in-home care he'll need. I don't want the year of waiting. The second year of waiting. I don't want the anxiety and worry and helplessness that I feel right now to continue for all that time.

I do want healing for Dan; I do want a cure for Dan. But I don't want him to have to endure all of that. I want Jesus to come right now and take it all away. Honestly, right now, I don't even know what to ask for in prayer.

Ok.

So, there's all of that. It's been hard for Dan coming to terms that should everything go well - the recommendation is for him to spend two years not working with livestock.

[yeah. another sucker punch.]

I think that's what makes this all so hard - knowing the risks, and the waiting - and that it will change your life no matter the outcome - makes it really hard to just say, "Ok!" Let's do it tomorrow!

But, every week that we meet with our doctor, we are reminded that this is waiting in the wings, so I guess it's time we let all of you in on the plan, too. 

The art of detachment

The last two months have really driven home to me the necessity of detachment. St. Ignatius of Loyola, founder of the Jesuit (Society of Jesus) order, was staunch supporter of detachment.

I was first introduced to the concept while reading “My Life with the Saints,” by Fr. James Martin, SJ (SJ means Society of Jesus, btw). 

Each chapter of the book details a saint who has had a significant impact upon Martin’s life. As a Jesuit, the life of St. Ignatius has impacted Martin. There are many areas of Ignatian spirituality that resonate with my soul; one particular challenging way is the practice of detachment. [I started typing “idea of” and realized my challenge not the idea – it’s making the idea a reality.]

Part of the ways that God has been shaping my life/heart is opening my eyes and heart to remember that this life is not all there is. Post-college, I was pretty detached. It was easy to say “whatever you will, God” when it was just me. …and then, I got what I wanted. I got married! …and, suddenly, (perhaps it wasn’t sudden at all) I wanted my way. I wanted Dan. I wanted this life. I wanted all the things my dreams were made of, and I could never be satisfied with less.

As a result, my relationship to God suffered. Why? How? Well, it’s quite simple. I didn’t want Jesus. I wanted everything else – with a side of Jesus. A helping of righteousness alongside the main dish of Jessica’s desires. Dan as the main course seasoned with a dusting of God’s miracle blessing dust.

[Excuse me while I puke.]

It has taken me awhile since the diagnosis to get to a point of accepting detachment. July 28 – January 8 was filled with a lot of rosaries. As those who are familiar with the Rosary know, that means 5 “Our Fathers” a day. Five times a day, I was asking that God’s will be done on earth as it is in heaven…but, what I really meant was my will. I meant that he bring about the outcome I wanted: miraculous healing for Dan, preventing him from suffering, deliverance from this trial.

This meant that my faith, my hope, my trust was all circumstantial. If Dan was getting better, Yea! God is good. But, as he continued to get sicker December 19^th through January, faith falters when dependent on an outcome like that.

On January 5, we met with the bone marrow doctor – and if you want a reality check: that’s where you need to go. I can’t speak for Dan, but hearing that what we had put our hopes in as a cure could potentially kill – it rocked me. I’ve blogged about this before, so I won’t go back there – had it not been for God’s mercy in providing me a new perspective, I do not know how I would be so full of hope now.

I started the following on January 15 about detachment:

Today (Friday) is our new chemo day, which means that on this day we meet with our doctor and we find out news. Approaching these days can be 'hard' - especially on days when you know results are coming. How do you prepare your heart for good news or bad news?

This fall, I read a little bit about St. Ignatius (founder of the Jesuits, aka 'Society of Jesus') - and his response would be to detach from the outcome. Detaching from the outcome does not mean giving up or accepting defeat. It simply indicates this greater understanding that the outcome of a test doesn't need to disrupt my faith: love for Jesus.

Dan and I were discussing this idea today: if treatments don't go as planned, it doesn't mean God isn't for us. ...and when we get bad news or there is confusion - that also doesn't mean that God isn't for us. ...but, it can feel like it.

So, rather than pin my hopes on an outcome (favorable or unfavorable), I have been getting back in touch with the unchanging, unwavering God who is. This God revealed himself to us through Jesus Christ - who demonstrated a radical way of loving - the Father and humanity. How did he do this?

Detachment. In the Garden of Gethsemane, Jesus prayed three times that the Father's will be done over his own desire. Through this, he submitted to a plan bigger than his own life. When he came to earth, he emptied himself of his rights as the second Person of the Trinity. Being found in the likeness of a man, Jesus practiced obedience to the Father. He accepted every part of what it means to be human - even dying (a horrible, excruciating, humiliating death).

The hope of His suffering and death was the resurrection: LIFE can come from death. Death is not the end. “Where, O Death, is your victory? Where, O Death, is your sting?” [not to say that life cannot be lonely for us  in the wake of death – but death is not the end]

Learning to practice detachment has helped me not only reconnect with the God who is, but, once again, God Himself has become my hope. Yesterday’s (2/25) reading from Jeremiah reminded me that our hope can be unfailing, when it is in the right place.

Reading 1 Jeremiah 17:5-10

Thus says the LORD:
Cursed is the man who trusts in human beings,
who seeks his strength in flesh,
whose heart turns away from the LORD.
He is like a barren bush in the desert
that enjoys no change of season,
But stands in a lava waste,
a salt and empty earth.
Blessed is the man who trusts in the LORD,
whose hope is the LORD.
He is like a tree planted beside the waters
that stretches out its roots to the stream:
It fears not the heat when it comes,
its leaves stay green;
In the year of drought it shows no distress,
but still bears fruit.
More tortuous than all else is the human heart,
beyond remedy; who can understand it?
I, the LORD, alone probe the mind
and test the heart,
To reward everyone according to his ways,
according to the merit of his deeds.

Detachment, then, is not the art of being separated from all things – but separating our dependence, devotion, and allegiance from all the things that cannot bring life (eternal satisfaction). The art of detachment is being fully attached to the Lord, from whom our help comes. Detachment is hoping in the Lord – not only for deliverance from a trial – but even more, for communion with the One who is…Life, Love, Truth, the Way. 

May this be the prayer for us all:
Blessed is the man who trusts in the Lord, whose hope is the Lord!