August.

August. We meet again. Do we have a history together or what?
August is the month I’ll love every year from here on out. It’s the month I got my life back. The life I knew was taken away in May 2014 with sickness overtaking my body, my liver failing, everything changing. In August 2015, it got switched around. I got my new liver. I started living again. I didn’t get “me” back… It was a new version of me. But frankly, I like this version better.
This version knows impossible sacrifice. I know what that looks like. It looks like a friend offering up months of her time, her ORGAN, so that you can have a chance of living. 

This version knows passion. The passion for organ donation, because it just.makes.sense. Because I see people die waiting. Because I love people who are waiting for a second chance. I love people like me who are struggling to get out of bed everyday and move forward. 

Passion for love. Passion for people. Passion for purpose. 

This version of me knows (better) what is important. It knows to not waste time pursuing what’s expected, what was planned. Life is too fragile to blindly chase success. To blindly fulfill expectations others or yourself have placed. Like a heavy boulder on your back. 

Nope. I’m pursuing a life that God has put on my heart. Because I know what it’s like to almost lose that opportunity.

This time last year I was sick. Very sick. I was surviving but I could have had something go wrong at any moment. A bleed. An infection. 

I am simultaneously humbled and proud to be standing here this August. I’m alive. And I love my life. I love my future. I don’t know exactly what it holds, but I know it will be good because I know God has kept me here for a purpose beyond my comprehension. 

August is my month of transformation. My month of waking up, new, but broken down. Weak, but strong.

I just love August. 

Comfortable.

I heard something on the radio today. The radio host wanted people to call in with their guesses of what income is necessary to live “comfortably” in North Carolina. I was in the car long enough to hear one woman call in, and she made me pause and think. With confidence she stated, “I’d say about 90,000 a year for two people.” 
The DJ says, “Huh. Well the answer is $50,000.” 
To which she shot back, “Yeah if you want the free stuff!”

Without divulging our entire financial situation, I have thoughts on this. No, we do not bring in 90,000 and frankly, I think her evaluation is HIGH. But beyond that… I thought about the word “comfortably.”

What is comfortable? What is it to you? To me… Comfort isn’t something that comes with money. With income. Comfort to me, is a physical and even a spiritual or an emotional something… It is the sense of contentment in what you have. Comfort to me, after being so sick, is waking up NOT sick. Comfort is knowing my soul is safe. That “it is well.” Comfort in America….is drastically different than comfort elsewhere. Comfort in middle class America is drastically different than comfort amongst the poor right down the street. 

Isn’t it funny how limited our sights are? I’m comfortable. But that doesn’t mean we don’t need to watch and delegate where each of our pennies go. Comfort isn’t about that. 

I am infinitely blessed to be living such a comfortable life. 

On the other side of that though… How comfortable should we be? Shouldn’t we be jumping OUT of our comfort zones? And get comfortable in that? That’s my goal this month. To be comfortable being uncomfortable. To talk about things that aren’t so easy. To do things that don’t come naturally. 

This is all just a ramble… But comfort. It’s relative. And it’s not somewhere to become stagnant either.

Be Gentle with You 

I was looking at old pictures. Just mindlessly scrolling. Then I hit the pictures that make my heart ache. The ache isn’t bad necessarily. It’s more of a bittersweet ache. They’re the pictures where I’m yellow. Too thin. Where I look like a whole different person. And truth be told, I felt like a whole different person too. 

Lately… I’ve been struggling with feelings of…inadequacy. I think that’s the word I’m searching for. I feel like I should be doing big things. I feel like I should be 100 % okay now because my liver is working and this is my second chance and oh my gosh, you only have so much time, Amanda. 

I’m hear to tell myself to stop. And to tell you to stop. 

I went through hell. You went through hell. Yeah, it was probably different than mine. But it still sucked horribly for you. Yes, this is your new beginning. But it’s okay if nothing seems to be happening. Being alive is not about accomplishing something. Yes, accomplishment is wonderful and great and all that jazz. But I just don’t think that’s why we’re here. At least not for the obsessive pursuit of accomplishment, or society’s definition of success. 

From the formerly yellow girl to you…the girl who cries when she sees where she used to be. It takes time to process things. I’m working on it. And it’s not something that can be rushed. It takes time to feel centered. It can take a whole lifetime to find your calling. If you have a piece of it, walk with it, don’t sprint. Unless you want to sprint. Then do that. Basically, just do things when YOU want to, not when society expects you to. Babies, careers, anything. It’s not on their timetable. 

Right now, I just need to take it day by day. And dream a lot. And work towards my goals, but not in a mad sprint. I need to enjoy this life, not rush through it. I need to be gentle with myself. And so do you – I’m pretty positive of that. 

Be gentle with you. 

Dark.

“Do you want to consider livers with…social risks?”
What kind of question is that? I wondered. I don’t want to consider livers at all. I can’t wrap my head around whether I want a liver that’s been in jail, or that went missing for a few years.
Instead I said, “I’d like it presented to me so I can make the decision at that time.”

Too dark. All of it was too dark. There I was, on the living room floor, talking about deceased people and their past mistakes, their past dramas, their available livers…. And whether I wanted to consider these “risky” organs or roll the dice and wait longer for my life to be saved. Too dark. Considering these people who were going to be dead. Casting their organs as good or not good enough. Pitch black conversation.

He had called and started the conversation much lighter. “Amanda, how are you feeling about being listed?”

“Um… Well. I’m glad. I’m doing okay.” I was lying. 

“Alright. I know this is a lot emotionally. I know it’s overwhelming and I wanted to see where you stood with everything.”

Fighting back a sob. Putting on a brave smile with watering eyes, my burning throat. 
“What did the doctor want?” Justin asked when I went back in the bedroom. His eyes were big.

“He wanted to make sure I’m okay.” 

Okay. What does that word even mean? Memories like these have been rushing back at me. I think it’s because I’m letting them now. I’m processing the last 1.5 years. And it’s not easy. I was in survival mode. I made it through it all and now I keep thinking on it. The memories rush through my brain, little bits and pieces that I string together and try to make coherent. 

I never had to make the choice whether to accept that risky organ. I trusted God would tell me what to do if that day came. But He deemed it that I didn’t have to choose. He put it on Madalyn’s heart. Slammed it on her heart. That she would be the one. 

I am grateful everyday for that. That He took that decision out of my hands. That He planned it all from the beginning when He formed each of us. The doctors said it was like Madalyn’s liver was meant to be donated. It was big enough. It was perfect. 

Well, silly doctors. That’s cause it was. 

I remember.

I remember using three pillow to prop myself up to sleep because laying flat was impossible. 

I remember waking up with a huge smile on every morning when I remembered I had a new liver. 

I remember the emptying of bile drain balls and how I thought Justin loved me more than I love him because I don’t think I could do that for him. (Not really but, that’s love).

I remember laughing and loving and hating every second because it hurt so bad. And so good. 

The weeks after a liver transplant are weird. They’re scary. They’re some of the best memories I have.

I remember walking so slowly because for some reason I just couldn’t go any faster. 

I remember my mom yelling at me when I took the stairs for the first time. The way I had to take one at a time with both feet on each step. It was so slow.

It is all slow. The recovery. The healing. The emotional releases. 

I’m still working on it all. And I need to remember that that is OKAY. I am not a bionic woman. I’m close though. 

I remember the first time I was allowed to eat. How two bites filled me up.

How I didn’t have any sense of balance.

How beautiful the view from the hospital hallway window was, because I was able to walk down there and do my exercises. Justin counting with me. Breathing with me. Fighting with me. Healing with me.

I remember the way my mom and dad came everyday. Coffee in hand once I was allowed to drink it. Relief and happiness etched in their faces when they looked at me, in awe of my changing color and the light that was back in my eyes.

I remember it all. And I never want to forget a second. 

Peace (Diagnosis)

 First posted on August 28, 2014.

Well, clearly I’m really great at keeping up with this……

Let’s try again.

Hi whoever bothers to read this – you are awesome 🙂

We are in Cary, NC now, which is in the Raleigh area. Yup, we stayed in North Carolina! And get this, I think I am okay with it. Life is going crazy around me, and I have the strangest sense of peace. The only explanation for it is my Prince of Peace. God must be doing something big because I have never been through anything like what I’m going through right now, and God has given me peace. Yes, I have times of complete and utter fear, but it doesn’t consume me. I am keeping my head above water.

Maybe you’re wondering what exactly I’m alluding to. Well here is the short version:

In May, I was diagnosed with a liver disease called Primary Sclerosing Cholangitis. To put it simply, PSC (just call it that – it’s way easier) causes a problem with the liver’s bile ducts. Normally, the bile ducts look like a tree with many branches, but in my MRI’s, the branches are very blurry and withered looking, which means bile cannot flow through my liver the way that it should. This causes damage to the liver, which leads to eventual cirrosis of the liver. The only way to fix this problem is to get a liver transplant. (PSC can reoccur even after transplant but does not always. The numbers vary but from what I’ve found, 10-25% of people experience PSC again post-transplant). PSC’s cause is unknown but it is thought to be an auto-immune condition.

My diagnosis came as a result of intense dizziness that landed me in the hospital. During that time, I underwent MANY tests and procedures, and after 9 days, I was finally released. I was then referred to a liver specialist in Chapel Hill at UNC. I cannot say enough great things about my doctor and the team there. It truly is a great hospital and I am very blessed to be taken care of there.

Life since then has been a complete whirlwind. For awhile after being released, I was doing better. However, my jaundice was not going away completely and just recently I noticed it was worsening. Yellow is not a good color on me – it never has been – and the vain part of me hates having yellow eyes and skin… but at least this increasing yellowness alerted me that something was wrong. Immediately after arriving in Cary, I was seen by my doctor. I was alone at the appointment because it was literally Justin’s very first day at his new job, and my doctor informed me that my liver levels are worsening and that he foresees transplant being needed much sooner than first anticipated, perhaps within the year.

So now, at 23 years old, just 2.5 months after diagnosis, I am undergoing evaluation to be placed on a liver transplant waiting list. My life has done a complete 180 in a matter of weeks. And yet, I can see God everywhere in this. I know that He wanted me in the Raleigh area so I would be close to Chapel Hill. I know He wanted me to continue care with my current doctor and not have to switch like I would have needed to if we’d moved elsewhere. I know that He gave Justin the job he has so that we would have adequate health insurance to assist with this huge surgery. And I know that God is holding me together, because there is no other explanation for my ability to get up every morning and face the day. Yes, I am sad. Yes, I get angry about all of this. But mostly, I am truly doing okay. I am relying on God to get me through this. I can feel His strength in my weakness. Even though this trial brings a lot of unknowns, I know that I am in the palm of His hand and there must be some reason for all of this.

So why am I sharing all of this?

I think it would be a waste to not share my experience. If I can help one person feel less desperate, less alone… no matter if it’s in a health situation or otherwise, then I will feel like this disease had some purpose. I’m not sure how God will use this trial or how He will use me, but I think sharing my story is the first step.

And now a shameless plug – if you pray, will you please pray for me? and don’t forget my husband. He is – what word can explain it? – remarkable. He holds me together when I’m falling apart and is always pointing me to Christ. And my family. Pray for them, too. They are the most amazing group of people and I am eternally grateful to be born into their flock 🙂

And if you don’t pray – talk to me about God. I’d love to tell you about Him.

But God.

Originally posted on 4/6/15.

People ask how I’m feeling a lot. What a loaded question. 
Where do I start? 
I feel tired. All the time. I don’t feel like me. I feel overwhelmed. 

I usually say I’m feeling the same. Or pretty good, or okay. But if you want the real, unedited, unfiltered, deep, scary, long version? You better buckle up and become a therapist in the next two seconds 😉 

This is what’s on my heart, as I lay in bed beside my sleeping sweetheart. I’m about to get up for some leftover pie, but this needs to be said. Probably more for me than for you. 

Yes, I’m exhausted upon waking. I’m often afraid and anxious. BUT GOD. I heard that prepositional (I think. Help me out, grammar police?!) phrase in a blog once. The author talked about how POWERFUL the phrase BUT GOD is. You may be struggling. In fact, I bet you are. Not in the way I am, or your best friend is, or your child is. But in your own way. And to you, it’s big and it’s real. Maybe it’s consuming you. 

Can I just say it again? BUT GOD. He is still good. He is still real. He is the rock that is higher than I – higher than you. 

Maybe when you say “But God,” it comes out more whiny. “BUT GOD, why me? Why is this happening?” Trust me, I’ve been there. I am there. At least ten times a day. Well, not to sound like your mother, but life’s not fair. It’s really not. BUT GOD (is this getting annoying?) sees you. He sees little you. And little me. And He has a plan. 

So. How do I feel? I feel… All the things. But to sum up how I feel tonight – I feel thankful. Thankful that God hooked me at a young age. I was saved at five. How privileged I was. I am thankful for a family who fostered my relationship with Him. They took me to church. They prayed with me. And I’m thankful for a husband who leads me closer to Him everyday. We just got done reading the Word and lifting our concerns to our Maker. And he forgives me every time I act like a spoiled child. I know I’m his beloved, just like I’m God’s. 

Life is hard. Like, really hard. But God has given me so much to be thankful for. 

Hope & Family

I’m going to work on moving my blog posts over from my old, neglected blog. 

“Hope holds a breaking heart together.” –Ann Voskamp
These words are truth. And I think I would add “family” as well. Hope and family hold a breaking heart together.

I keep thinking of my time at home in Pennsylvania. I flew out last week unexpectedly, because my Grandma passed away. It was a huge shock – I’m still shocked – but I hurried home and was able to be there for the services and be with my family during this difficult time. I will forever be grateful that I was able to be there. I keep thinking of how my family pulled together. My immediate family, my might-as-well-be immediate family, my tons of cousins, my married-into family, my true blue friends from near & not so near… Now that I’ve had some time to reflect on it, I want to try to put into words how grateful I am for that.

I think Grandma would be proud of you all. The way you all gathered around to support, hug, and love us. I’ve never felt so close to all of you and I think that shows how God has a way of bringing people together when they need it the most. It is an indescribable blessing to know that I’m not alone in my grief – I know you’re all grieving too, and it’s not that it makes it happy, but it makes me feel less alone. The burden last week was so great, it’s still so great, but you all helped in carrying it. Thank you, so much.

  

And Grandma, I know it all would have made you smile. I love your smile and your laugh, your entire sense of humor. You had a heart of gold and I know you’ll live on in each of us, even those who don’t directly share your genes. You’ll be in all of our hearts. And I know you’re in Paradise. Blessed assurance is blessed indeed. I love you.

— First published on October 10, 2014.

Coffee & Trust

God must get amused by us when we need to learn the same lessons again and again.

I thought I learned the whole trusting God thing with this entire liver transplant journey. But yet, when I got word that my negative CMV reading was not negative again last week, I was defeated.

Of course I have a reason to be upset, and I let myself cry, and my amazing husband knew right away something was wrong when he walked in that door. He held me and encouraged me with his typical grace and humor and steadfastness.

I know I’m a lucky and blessed person but sometimes I just want to be a normal one. I must be on this journey for a reason but sometimes I’m a spoiled toddler who wants to throw in the towel and give up and be mad about the hand I’ve been dealt.

…but that’s not going to help. So today I woke up and I decided to look at what’s good. The sunshine through the windows in my pretty, little house. With doors that squeak and lights that sometimes flicker for no reason. It’s quirky but it houses me and my best friend. And whenever it rains, I am more grateful for it and I curl up in bed and listen to it and think about how happy I am to be alive. Sometimes I’m morbid and I think about, “what if I’d died?” I question what J would be doing right now. Still playing his video game I suppose, but he’d know the other half of his heart wasn’t on this earth, in the next room. But that’s not what happened and I got to live and I’ll be damned if I’m letting this CMV take away the joy of that.

Yes, I have a picc line and the nurses drive me crazy when they veer off our schedule. I hate the boxes at the door every Friday holding yet another batch of medicine. I don’t like dragging a cooler of meds through the airport.

but I DO like. LOVE. A lot of other things. The way Justin smirks at me when he knows he’s ticking me off. The way he plays with my hair. The sound of the rain. Coffee at just the right temperature with just the right amount of half & half. My church and how everyone smiles when they see us walk in and sneak into the back row. The dreams I make with J of babies and houses and chickens in the yard. The way my mom makes me laugh on a daily basis. The way I feel God’s love when I pray, when I look at the sky, when I get out of bed without wishing I could stay in it for days. The way I used to.

I love my life. I love my new liver. I don’t love this virus. But neither does my Jesus and I know He’ll take care of it in his time, just like he gave me my shiny new liver through my sweet friend.

I just need to trust. And make another cup of coffee.