Eight billion different ways

I just wanted to post a quick update to let everyone know that I am doing really well. Jordy and I had the chance to escape to the beach for a weekend with some friends and I took my first dip since the surgery. The salt water felt just as good as I imagined it would. We spent two nights and woke up both mornings to watch the sunrise on the beach, something we always do when we’re on vacation and rarely manage to do at home.

I have been cooking my way through Mina Stone’s cookbook, Cooking For Artists thanks to my dear friend Lydia who loaned me her copy. Somehow each recipe has been a winner, except for the lentil soup, which tasted a lot like murky water. I have gained back the weight I lost during what we affectionately refer to as the D-Days and I have never been more grateful to see numbers on a scale climb up a few notches. We are super fortunate that Jordy can come home for lunch every day and in an effort to take full advantage of such a gift, I have made it my goal to have a homemade lunch and dinner ready for him every day and night. I feel like a very 50s housewife but must confess that I do NOT hate it. I love being in the kitchen when I’m not walking. I am averaging 15 thousand steps per day and feel powerful and healthy. I cake on the SPF, hitch up SalTak and walk clear across town and back any time it’s not raining. My motto for exercise has become, “if I can, I will.” I can’t do a push up to save my life. Running feels awkward and wrong. I couldn’t do a sit up if you paid me a mill, but by golly I can walk, so that’s what I do. And I love my walks.

I have a hefty amount of anxiety and fear regarding my health (and almost everything else) but I am really working through that and doing my best to learn how to surrender my fears to an almighty God who continues to surprise and reveal Himself to me at every turn. Just last night while we were eating dinner, J took a bite of a roasted carrot and commented on how many varieties of carrots and potatoes there are which led to a conversation about how many different species of plants and animals there are, which led to a discussion on the expansiveness of the universe and the infinite creativity and inner workings of God’s plan and at the end of the conversation I couldn’t help but feel foolish for ever not trusting it (the plan!). We’ve been listening to Hillsong United’s song, “So will I” for over two years now but it has felt new again after watching those sunrises a couple of weeks ago. The lyrics are as follows:

God of creation

There at the start

Before the beginning of time

With no point of reference

You spoke to the dark

And fleshed out the wonder of light

And as You speak

A hundred billion galaxies are born

In the vapor of Your breath the planets form

If the stars were made to worship so will I

I can see Your heart in everything You’ve made

Every burning star

A signal fire of grace

If creation sings Your praises so will I

God of Your promise

You don’t speak in vain

No syllable empty or void

For once You have spoken

All nature and science

Follow the sound of Your voice

And as You speak

A hundred billion creatures catch Your breath

Evolving in pursuit of what You said

If it all reveals Your nature so will I

I can see Your heart in everything You say

Every painted sky

A canvas of Your grace

If creation still obeys You so will I

So will I

So will I

If the stars were made to worship so will I

If the mountains bow in reverence so will I

If the oceans roar Your greatness so will I

For if everything exists to lift You high so will I

If the wind goes where You send it so will I

If the rocks cry out in silence so will I

If the sum of all our praises still falls shy

Then we’ll sing again a hundred billion times

God of salvation

You chased down my heart

Through all of my failure and pride

On a hill You created

The light of the world

Abandoned in darkness to die

And as You speak

A hundred billion failures disappear

Where You lost Your life so I could find it here

If You left the grave behind You so will I

I can see Your heart in everything You’ve done

Every part designed in a work of art called love

If You gladly chose surrender so will I

I can see Your heart

Eight billion different ways

Every precious one

A child You died to save

If You gave Your life to love them so will I

Like You would again a hundred billion times

But what measure could amount to Your desire

You’re the One who never leaves the one behind

I really want to thank everyone for reaching out, praying and loving us. I am filled with gratitude for so many people and have been humbled in countless ways (#brokenrecord), particularly since my last post. Thank you for still reading this and allowing me to purge my thoughts and the mundane details of our lives into these updates. I didn’t think anyone was still reading but received an enormous amount of support after my last entry which surprised and embarrassed me. Vulnerability is often embarrassing but not being totally honest never feels like an option for me, so out the truth came.

Vince and Mercedes are doing wonderfully. Vince has been jumping out of planes, winning every award imaginable at Merrill Lynch and continues to act like all of this is no big deal. I don’t think I could have gotten a more determined and honorable liver if I’d been able to screen and choose from a thousand applicants. I am only now settling in enough to realize all that has happened and how lucky I am.

The Nadir

Back when we lived on Bromley road in the apartment that holds our happiest memories, we had a stack of vocabulary cards that one could use to study for the GRE. Since neither of us were studying for the GRE, J and I decided we would choose just one card per week, post it on the fridge and incorporate the word into our lives as much as possible. Like many of our ideas, this one lasted exactly one week. The word we chose on that first and last day of our new tradition was Nadir.

na·dir

/ˈnādər,ˈnādir/

noun

1. the lowest point in the fortunes of a person or organization.”they had reached the nadir of their sufferings”

synonyms:

the lowest point, the all-time low, the lowest level, low-water mark, the bottom, as low as one can get, rock-bottom, the depths

I’d never heard that word before but we often used it, mostly when being dramatic about a bad day we’d had at work or when we’d been fed a terrible meal. “The dessert was the nadir of the evening,” we’d say light heartedly. To be honest, the moment we began having true Nadirs, we stopped claiming them.

The updates on here have dissipated, we realize, and that’s mostly because I haven’t wanted to be honest about how bad things have been. The diarrhea didn’t stop when we left Pittsburgh. In fact, it didn’t stop until two days ago. I was house bound every day, all day for 7 weeks- afraid to leave for more than a short walk or a quick errand to a place where I knew a clean bathroom would be should an emergency arise. I’ve had to cancel on dates with friends, dates with Jordan have been off the table, and even sharing meals with him at home – our greatest joy- wasn’t possible. I subsisted on rice, toast, bone broth, plain pasta, and maybe apple sauce when I was feeling wild. Nothing helped- not prescription meds, not a diet of saltines and ginger ale, not immodium- nothing.

A few weeks back when I was having a “good” day (read, more than 3 hours without an attack) I made it to an appointment with my therapist. While there, I mentioned to her that I’ve been confused about how poorly I’ve been handling this latest setback. I told her that my thoughts in the middle of the night while curled up on the bathroom floor were the darkest I’ve had to date. I shared that I felt like I was drowning and couldn’t catch my breath. “Is diarrhea really what’s going to take me out of the game- of all things?,” I shared with tears streaming. I spent the whole session trying to get to the crux of why, beyond the obvious reasons, this was so much more difficult for me than even the debilitating parts of grief or the most painful parts of surgery. Right at the end of our time together, something dawned on me.

Right after we lost June, I was scrolling Instagram and came across a comment left by a reader on someone else’s post. The comment is as follows:

“I had an 18 month period a few years ago that was, like, joke-bad. One thing after after another. My mantra was, ‘just be a cork on the ocean…a cork on the ocean’ It’s okay to take a break from treading (lest you tire out) and just float sometimes, knowing invisible forces are buoying you up.”

I loved this imagery so much and it became my mantra every time I hit a rough patch with my health or any time unfortunate news came my way. “Be a cork on the ocean, a cork on the ocean, a cork on the ocean”

I shared this with many people and a dear friend even found an old boat cork on Etsy and sent it to me in the mail as a token/reminder of my promise to float through this time. I think I have done a fairly good job trusting the invisible forces buoying me up over the past two years. I haven’t had to go on antidepressants, I have been able to feel my emotions in real time and even managed them appropriately enough. I have kept my head above water and for the most part maintained a positive attitude. But this latest setback felt like something I could not handle.

As I was telling her about this quote, I realized I hadn’t once thought about it since we left Pittsburgh the first time after the surgery. I filed my little cork mantra in the recesses of my brain because, of course, I didn’t need it anymore. The storm was over. I had taken myself out of the water. I was ready to be up and moving and walking again. I stopped floating and was onto bigger and better, normal-life things. I was beginning to feel what it felt like to not be sick and I began trusting that my body was working for me rather than against me for the first time in over ten years. It was starting to feel really nice.

And then a tsunami came. And I forgot to be a cork. I started treading water and I was using every ounce of might and strength I had left in me to combat the waves.

I continued crying as I shared this sinking revelation with this woman. “So I forgot to keep floating. I stopped trusting. I used up what small energy reserves I had left and I began sinking because each attack was a new wave that just hit me in the face. Water up my nose every time. A huge swallow of salt water every trip to the bathroom,” I exclaimed.

I would looove to report that everything changed after that session and that I began to float again with ease. While of course that was the goal and my homework as I left therapy that day, I was a lost cause. I actually became angry that I was being asked to continue floating. I’m just so sick and tired of floating.

A few days later I was trying to get a frozen banana out of a frozen Tupperware container with a fork (don’t ask) and for whatever reason, I lost control of the fork and wound up stabbing my hand instead of the banana. I screamed bloody murder. I was certain my neighbor was going to come check on me (Jordy wasn’t home). He didn’t. In the end, I was glad because the wound didn’t look nearly as bad as it felt and I later felt silly for reacting so strongly.

The diarrhea continued. We still had no answers. UPMC kept telling me to take anti-diarrheals that were doing absolutely nothing to help. I kept eating rice.

A few days after that, I was up early after a sleepless night and went to the refrigerator for a risky hard boiled egg. Don’t ask me how, but I wound up slipping in the most dramatic fashion, became truly airborne for what felt like a whole minute and came crashing down on my tailbone (!) on the hard kitchen floor. I screamed bloody murder…again. This time Jordan was home and came running in to find me splayed out like road kill in my bathrobe with my hard boiled egg in hand, the shell cracked into a hundred pieces.

It was my nadir, or, in keeping with the stupid cork metaphor, I was lying face down on the bottom of the ocean floor.

I’m writing today because the diarrhea has stopped. Praise God. I’m officially breathing again and have been encouraged by some good friends to write again. We finally figured out what the heck has been going on by slowly eliminating every drug (there are many) in my regimen. Through this laborious process, we have finally discovered the culprit. The moment I stopped taking the Bactrim, my stomach settled.

I am now slowly but surely crawling back up to the surface. I feel like I can function again. I won’t get scurvy after all! I will get to eat Thanksgiving dinner this year! I will travel again! I will survive. I am beginning to hope again for days that feel normal. I have planned out every meal for the next week and have never been more excited to eat things with flavor.

I think everyone who has ever experienced something really hard is tempted to write a book about what not to say to someone who is going through something really hard. I have made mental lists and often want to shout them aloud to people, but then I think about all the times in my life before now that I would have consoled in the exact same manner. I never would have consulted a book before consoling someone so why should I expect anyone else to? The only way people can know what to say or not to say is to have gone through it- and even then- everyone’s experience is radically different. I have several pieces of advice for anyone who ever wants to know, but the one I’ll share today is that you should never assume you know what someone is feeling. In the first few days after losing June, everyone told me I had every right to be angry- that I had every right to be angry at God, angry at the hospital staff, that it was normal to feel angry at myself. I felt zero anger. I didn’t feel an ounce of anger toward anyone or anything. I just loved and missed my daughter. I actually felt a peace beyond all understanding which perplexes me to this day but is undeniable still. Today, on the other hand- a year and half later, I feel anger toward God, anger toward the hospital staff and anger toward anyone who has the ability to easily have children. I’m having a hard time not being angry at everything, to be completely frank. Before my liver transplant, everyone assumed I was at my lowest and that now I should be elated to be alive and thriving! “You look so great, Sally!,” everyone tells me who sees me. I’ve lost weight from being sick and all well-meaning friends and family want to tell me how good I look as a result. It’s not that I don’t want people to tell me I look great, but I would maybe prefer a simple acknowledgement of our situation. The same applies to Jordan, or members of our family who’ve been through all of this too. A simple, “You’ve been through a lot. How are you holding up in this moment?” is usually the safest approach because it validates what we’ve been through and allows us to answer truthfully about that very moment. A general “how are you?” feels like such a cumbersome question and can be overwhelming. I feel tempted to say, “I’ve been miserable for weeks with debilitating diarrhea and now my hair is falling out from the medications I’m on but otherwise hanging in there” and since nobody wants to hear that, I resort to, “doing great, thank you!” which feels like an outright lie but also the best way to move through the conversation so I can escape it as soon as possible.

People don’t need to walk on eggshells- that’s not at all what I’m suggesting, but I think simply acknowledging someone’s plight or the reason for their grief is the best first step. Please never be afraid to just call out the obvious- “you have been through the ringer. Are you breathing right now? Because you deserve an award for that alone.” Or, “I love you and I’m here for you to either be as mad as a hornet or to sing genuine praises to the Lord on high.” Or “Whatever you’re feeling, whether it makes sense or not, is totally okay.”

Grief and trauma both have strange stages and years and years of ups and downs that make zero sense. Nobody would have thought I was at rock bottom after a successful surgery, when my skinniest pair of jeans finally fit me again. But that’s the nature of these things. It’s all just hard, for people on both sides of the equation. We are all learning by making mistakes and assumptions and we’re all being broken and rebuilt for greater understanding, for more wisdom, for more strength. I can still believe that and still be angry at God. I can still have faith while saying, “enough, enough, enough.”

In writing this post, I have decided I’m going to find that stack of cards and pull out a new word. Nadir has held its place in our home for long enough.

Jailbreak!

We’re out! They gave me the first colonoscopy appointment of the day and everything looked good as far as they could tell. They took several biopsies to further rule out infections and others misc problems but they feel optimistic. We should know biopsy results in a few days. Since I’m at a greater risk of getting sick by staying in the hospital than I am being out in the real world, they released me! Dr. Humar wants us to stay locally until Monday so we can monitor my progress and be available to come back if my symptoms persist. We liked this plan.

A good colonoscopy result is great and yet another thing we can rule out as being a cause for my symptoms. However, we still aren’t sure what is causing them. The most logical conclusion at the moment is that my body started having an adverse reaction to one of the drugs I’ve been taking. Apparently this can happen even after one has been on a medication for a while. The team has now totally switched up my medication protocol to see if we can’t resolve this through the process of elimination.

I just took an hour-long shower at ‘home’ and promptly fell into the hotel bed. After the multiple CT contrast injections yesterday, the gallon and a half of florescent green colonoscopy prep I chugged through the night, the propofol and anesthesia from the colonoscopy and the colonoscopy itself, I feel like a walking concoction of toxic chemicals. I’m going to drink loads of water, eat lunch from where I sit (Jordan’s out gathering pasta bianco from DiAnoias as I type) and sleep off the drugs.

Your prayers are powerful. Keep them coming. Thank you!!!

Poolside Reading

I regret not posting an update a couple of weeks ago when I was feeling very much like a rockstar. I was moving around without any problems, taking SalTak on hour-long walks, preparing meals and enjoying perfect digestion.

Keep that in mind as I now tell you that I’ve been in the hospital at UPMC for a few days and expect to be here a few more. We don’t know if I caught a virus or picked up some bacteria from the gruyere grilled cheese I ate for lunch Saturday before last, but something took a hold of my body that evening and has been relentless ever since. The perfect digestion I bragged about (TMI goes out the window after a liver transplant so my sincere apologies to all family, friends and random strangers I meet on walks) took a sharp turn for the worst. Fortunately, I did not throw up or have a fever, but I did practically live on the bathroom floor for a solid 9 days. We’d been warned of a weakened immune system and I was trying desperately to remind myself of that in between bouts of misery but I will fully admit that attempting to be prepared mentally for setbacks didn’t help very much.

After the 9th day, my doctor in Pittsburgh told us we needed to come up and get checked into the hospital. I’ll spare you the bulk of the details but I’ve been back on the transplant ward (in the same room I was in before!) since Monday. I’ve currently got IVs in both arms, had a CT scan with both oral and IV contrast yesterday and will have a dreaded colonoscopy tomorrow.

It has been awful but in constantly searching for reasons why it has also been good, I have found several. The last time I was here I still had all my incision staples, I couldn’t do anything for myself- including washing my body or standing up straight. I had multiple neck IVs and couldn’t turn my head at all or sleep on my side. I was in so much pain. Fortunately, I was so blissed out by simply having survived the surgery that much of the pain was trumped by excitement. Being here now, while super discouraging, is at least reminding me how far I’ve come. My scar is now totally healed and my hair is actually washed. I can sit up on my own, sleep on my side, bend over to grab my slippers, walk to the bathroom alone(!). When I first arrived this go-round I refused to put on a hospital gown. I felt like it was going to make me look and feel sick again. That lasted several hours but as anyone who has ever had an IV for longer than a day can tell you- the gown is key. Arm holes that unsnap make life so much easier. Alas, I am now all gowned up, perched on this awful bed and consistently have a giant cup of crushed ice and a plastic spoon in hand. I’m tired and over this but I’ve never been more thankful for the people in our lives who have made this possible. The GoFundMe money has taken such a huge portion of stress out the equation. Last minute flights, a week’s worth of hotel rooms for Jordy and a week of staying in a hospital where thousands of tests a day are run certainly does not run cheap. I cannot imagine going through this knowing the entire financial burden would weigh on us and our families.

Jordan is by my side, of course, and somehow always has the ability to make horrible situations bearable. I can tell the nurses think we’re so strange because I insist on bringing in my own Evian water and every morning Jordan meticulously prepares for me two pieces of sourdough toast (brought in from the outside, obviously) with good butter and the expensive strawberry preserves. I send him out on errands and get full reports upon his return: “did you find anything at the thrift store?” “How was the bartender at DiAnoia’s this time? And the pasta special?” “Did you see any cute dogs at Frick park?” Just a minute ago, he returned from lunch with a bag full of art supplies as a surprise. I’ve been complaining of being bored so now I have paints, paint brushes, canvases and notebooks to pass the time. I often get called out for portraying Jordan in a perfect light but that’s because I actually think he’s really close to perfect. With that said, he’s practically evil if he’s woken up in the middle of the night. So, in order to keep our marriage as beautiful as we think it is, he goes to sleep at the hotel every night. I’m perfectly happy with this arrangement as he is very much LESS than perfect when he hasn’t had sleep. It’s the best thing ever to wake up knowing my rested husband is bringing me coffee and looking forward to bringing me toast in bed.

Yesterday, as they were wheeling me down the hall on a stretcher to go have my CT scan, I saw the sweetest looking elderly man taking what I assumed was his first post-transplant walk. His arm was around his nurse, his IV pole was wheeling along beside them and his wife was trailing closely behind. He actually stopped the nurse who was pushing my stretcher and asked her to take a picture of this monumental occasion. Unfortunately, not a one of us had a phone or camera! He was so proud of himself for taking those steps and, for crying out loud, he wanted it documented! Oh my gosh, I understood completely. I wanted to capture this moment for him so badly. Instead, I applauded him – literally clapped and cheered- and doted on him for being so strong. He seemed to be satisfied enough with that and kept moving along at the speed of a snail.

Earlier today during one of my walks around the transplant ward, I decided to go up and down three flights of stairs several times just to move my body and keep the boredom at bay. I immediately recalled the time during my last visit when my physical therapist asked me to go up one flight of stairs at the end of the hall. I made it about three steps up and almost fainted. They actually had to use a recliner from one of the rooms to wheel me back to my room because I couldn’t walk. That was the afternoon my hemoglobin had dropped to a scary level. It felt like chaos ensued shortly after. As far as I was concerned, the world was coming to an end that day and I would never climb a flight of stairs again.

I’m rehashing some of these old events to build myself up because I’m proud to report that today I scaled those steps like an Olympic athlete. I could have climbed a hundred of them. It has only been 9 weeks since that dreadful hemoglobin day and while I am back in the hospital, I have to remember and believe that I have come so far.

It’s been wonderful to see some of my favorite nurses. One of my transplant coordinators with whom I speak on the phone almost daily has now become like a family member. She will not stop hugging me. Jordan counted 7 hugs the last time she came in for a visit. She is so sweet and doesn’t like seeing me in pain. Her name is Jean, just like my grandmother’s.

So now we wait for answers. We beg for your prayers. I didn’t feel like posting at all but selfishly wanted to only because I wanted to ask everyone to be praying for us. May I selfishly list our specific requests? 1. we need to figure out why my body is retaliating. Answers from the colonoscopy would be helpful. 2. we need my bile tube’s suture to loosen up so the tube will come out (it’s being finicky and won’t release) 3. We need to get out of here as soon as possible so we can be home and begin recovering …again. 4. we need to feel encouraged because as much as I can write about the nice parts of this whole thing, the reality is that it’s still hard and we’re down and discouraged a lot. 5. we need my body to rally. My white blood cell count is dangerously low so I’m even more susceptible to bacteria than ever before.

I’ll stop there and let you all get back to enjoying these precious last days of summer break. Thank you for loving and supporting us. We sure love all of you.

Surprises!

First, we are HOME! We got the green light from Dr. Humar to head back to Charlotte until our next appointment on July 19th. We weren’t expecting this and loved the idea of sleeping in our own bed so much that we decided to pack our bags and make a quick escape without telling anyone. We are enjoying the sound of cicadas, walking SalTak around our own block and the summer heat. I have to be extra careful about germs/being out in public since I’m immunosuppressed but look forward to slowly making my way back into the land of the living. I can’t wait to see and thank everyone for holding us so closely during all of this. Please continue to pray. The first three months are the most critical time for acceptance and we will continue to make regular trips up to Pittsburgh for the remainder of the year for various check ups. I am feeling well and notice slight improvements in my health every day.

Second, but more importantly, Vince proposed to Mercedes!!! He surprised her on Tuesday and we couldn’t be more thrilled! I know Vince knew he wanted to marry her long before the surgery but he would have been a damn fool to not have put a ring on that finger after the way she loved and cared for him throughout this process. They walked through it in lock step and we all loved watching them grow even more in love because of that. They’re a perfect match. It’s a crying shame I took so much of Vince’s liver as he deserves to be drowning in bottles of champagne in honor of this occasion. I have no doubt he’ll be able to make up for lost time by the time wedding bells are ringing.

He is building a palace

The weather was perfect and I felt well enough for an outing so Jordy and I decided to take a little field trip. We dropped SalTak off at Camp Bow Wow and drove an hour and half up the road to see Fallingwater, the famous house designed by Frank Lloyd Wright, built over a series of waterfalls in the middle of nowhere Pennsylvania. I decided to post tonight because I fear that if I wait one moment longer I’ll get overwhelmed by all the things I want to share and never post anything at all. I’m bursting at the seams to convey to the universe what the past three weeks have been like for me and simultaneously have no desire to talk about it at all because I know I’ll just get frustrated with myself for not articulating it well enough to really allow people to understand. It’s a fruitless pursuit! So, in order to just break the ice and my silence, I’d like to begin this post by talking about Frank Lloyd Wright and this house he designed. The grounds, the interior, the furnishings, the colors, the smells, the sounds of the giant waterfall under your feet in the living room- all of it was completely mesmerizing. It delighted all my senses and since I feel like I’m living in an entirely new body, you can imagine how thrilling this was for me. If you read my first post, you’ll know that I now own a vintage pair of leather slippers from Kaufmann’s, a famous Pittsburgh department store that no longer exists. Well, today we learned this house was commissioned by the uber wealthy Kaufmann family in 1936 and marks the turning point in Wright’s career after it graced the cover of Time Magazine upon its completion. J and I both agreed that it would be worth a flight to Pittsburgh and an hour and a half drive outside of the city just to visit this place. I won’t bore you with the details of each room, each well appointed fireplace, each window and door, but I assure you it was all just a feast for the eyes and we vowed to begin sketching ideas for our one-day house the moment we walked out.

Speaking of walking, I am still at a snail’s pace and my posture looks like that of an 80 year old’s with severe osteoporosis. I have to wear this binder thing around my core (think girdle) anytime I’m active and it makes for a very awkward-looking gait. The nerves in my stomach are starting to come back online, which is both good and bad, but the severe internal pain is finally waining. I think my scar is very cool as I have always been a fan of scars. I’m an emotional mess 99% of the time thanks to the heavy dose of steroids and immunosuppressants I’m on and if you need an example of how bad it is, you can ask Jordy about the amount of tears I shed when I watched Rory tell her college boyfriend goodbye when he moved to London for a year (Gilmore Girls is my guilty pleasure in recovery). I cannot even bear to watch any of the videos people took of me after the surgery…not because of how pathetic I looked but because of how powerful they are for me. Even looking at pictures of things from those first few days sends me into complete hysterics. I was warned by some people who had gone before me in the liver transplant world that this would be a highly emotional experience, but I had no idea it would be quite so intense. I looked at that waterfall today and have never felt so connected to something in nature. The Prograff has balanced out for the most part. Those were some tough days. For a while there, my arms were my biggest complaint. It felt like they’d been run over by 18 wheelers. I’ve still got two tubes coming out of my abdomen but I can finally take showers without having to get Saran Wrapped first. I love UPMC with all of my heart and don’t even mind going back for my follow up appointments. This is coming from someone who has legitimate PTSD and hates hospitals with a fiery passion.

I have a lot of healing to do and it has been harder than I even imagined it would be at times. I have gotten frustrated and bitter and short tempered and sad. I have worried extensively about the idea of having to take so much medicine to stay alive and hate the idea of having to deal with the side effects of these medications for the rest of my life. But then I think about those pictures of my old liver, Creature #7, and things come back into focus. And I think about how I’m alive because of Vince. I think about how 60% of his perfectly beautiful liver is now all hooked up and WORKING inside of my body. And I think about how miraculous and wonderful this whole thing has been and how the Lord has been preparing me for this my entire life. I think about how he was preparing Jordy’s heart for this long before I even met him. I do not know why or how or what this is for and fully understand that I might never know this side of Glory, but I know it is not all for naught. In two years I have faced two major physical, psychological and spiritual blows. The first, losing June, made me so weak and so fearful that I worried I would not have the strength to endure another battle in my body. I felt so ill equipped going into this. I didn’t have any fight left in me. What I learned, much to my surprise and delight, is that I didn’t need any fight for this battle. It was fine to be weak. All I had to do was accept the gift of life from someone who was giving it to me. I just had to be open to taking it, even if it caused me pain. Fighting was the exact opposite thing my body needed to do. Remember, I’m on enough immunosuppressants to shut down the disease fighting ability of a herd of lions right now. It took me a while to understand why the doctors need my immune system to STOP working, so let me explain. Our bodies know when something foreign has invaded it. Our immune systems are smart and go after anything that doesn’t belong with the intention of killing it so it doesn’t kill us. This is usually a wonderful thing. In the case of transplants, it’s not such a good thing. We need my immune system to stop working so that it won’t see Vince’s liver as a threat. We need Vince’s liver to enter my body in peace- no fighting, no attacks. This entire physical process has been about the need for my body to fully and completely surrender. Even if it hurts every cell in my body and causes me to cry waterfalls of tears. Even if it meant I had to be cut open and torn apart. The only thing I’ve had to ask my body to do is say thank you, and allow the new liver to do its thing, knowing that it would bring me new life, knowing that it was purposeful even when it hurt. Easier said than done, I assure you, but I love meditating on this and find it far more applicable to my life and faith than anything that promotes being strong. It feels far more authentic for me to admit that I am weaker than ever but better for it than to lie and say I got through this by fighting some kind of good fight.

With that in mind, I’d like to end with a couple of verses that have scrolled across my brain many, many times in the past few weeks:

2 Corinthians 12:9-10

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

And I would be remiss to not also include one of my favorite quotes from C.S. Lewis after today’s house tour:

“Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.”

(C. S. Lewis, Mere Christianity, New York: MacMillan Co., 1960, p. 160)

Thursday Night Prayer Request

One of the weirdest parts of receiving a new liver is that each body dials in its anti-rejection medicine differently.

In keeping with the spirit of the fantastic care we’ve received from the first day we came to Pittsburgh, Sally’s transplant coordinator called this afternoon to let us know that one of her medicines was reading too high. They’d checked twice with the lab and want Sally to hold off on the medication for a day and a half and pick back up with a half dose Sunday. We head back in for another appointment Monday.

We love specific prayers. We love bringing specific, named problems before the Lord.

We’d love for all of you who follow this who would like to join us to spend a few minutes this evening praying that Sally feels better, because having too much Prograff in your system is just like having too much of any drug. She’s been feeling unnerved and weak all day, and the transplant coordinator said that the symptoms she described were in line with having too much of this in her blood.

They’ll get her dialed in, we have no doubt. This is all a part of figuring out how to host a new liver. But in the meantime, please just pray that Sally get’s some relief from these weird feelings she’s having.