There is Power in Song

I love listening to Christian music. I play music in my classroom constantly. I love the power, Gospel, and love in them. Songs move me. It is interesting how songs will just hit you at the right moment too.

Have you ever been in a moment when a Scripture verse pops up or a song comes on and it is just perfect for you situation? It is eerie, right? That is 100 percent a God-thing. God may not talk to us like the Old Testament, but He still definitely does. His Word is Him speaking to us. But those things that pop up exactly the moment we need them? He is definitely speaking to us as well. I truly believe this.

I have two examples of songs that just hit at the right moment from the past months.

The first is the early morning of Emerson's first open heart surgery to put the PA Band on. It is early, like 4:30 in the morning early. My wife, my mom and myself are in the car driving to the hospital. No one is talking. Nerves are on edge. The first song that comes on the radio is Beautifully Broken. A snippet of the song:

You're beautifully broken
And you can be whole again
Even a million scars
Doesn't change whose you are
You're worthy
Beautifully broken
You're beautifully broken (beautifully broken)
You're beautifully broken

Oh, the God who made the stars
Is the God that made your heart
And he's holding you right now
He can heal the broken parts
And make beauty from the scars, the scars
Beautiful scars!

Woah. Like really? Of all the songs, this is the song that comes on the moment we drive to the hospital for heart surgery? How calming that experience was. Still looking back it gives me shivers.

My second song is actually a song I use to blast in class all the time. I never really thought about the lyrics, I just liked the song. The song is Move (Keep Walkin'). The chorus:

I know your heart been broke again 

I know your prayers ain’t been answered yet 
I know you’re feeling like you got nothing left 
Well, lift your head, it ain’t over yet, ain’t over yet so

Move, keep walkin’ soldier keep movin’ on 
Move, keep walkin’ until the mornin’ comes 
Move, keep walkin’ soldier keep movin’ on 
And lift your head, it ain’t over yet, ain’t over yet

I was doing my "hospital walk" (literally just walk around the hospital) one day, engrossed in my own thoughts and prayers, this song came on. And it hit me hard with what the chorus was actually saying. There have been more times when I have been weak than strong through this whole experience. And this song just gives me the power and hope to keep going and to keep fighting. 

God gives power through song. The Holy Spirit uses the words to help us. And when these things happen the exact moment when you need the words, it is awe-inspiring. God is here.

Normal.

Normal. What I wouldn’t give to feel normal again. For my family, things will never go back to normal again. Worrying about Emerson’s heart will loom over us the rest of our lives. We will eventually settle into a new normal, but man what I wouldn’t give to have my old life back. 

Days, weeks, months, potential years lie ahead while we wait in Loma Linda. We’re frequently asked “why can’t you wait at home?” Emerson requires round the clock care, and she’s hooked up two continual medicines that keep her heart pumping as well as respiratory help. While she is on these, we have to stay in the hospital. There’s no chance her heart will be able to get off these medicines. Until she gets her new heart, we need melrinone and epinephrine to keep her heart pumping strong. 

After transplant, things just won’t go back to how it used to be. There will be many food aversions we have to stay away from. A new diet lies ahead for us and new knowledge of everything she will put into her body. Grapefruit is a big one. The irony is that is when I was pregnant with E, I craved grapefruit and grapefruit juice. Maybe it was a precursor of what was to come. Certain foods could mix with the medications she’ll be on and cause a reaction. 

Which brings me to the medication part. Did you know after transplant a kid will be on daily medications that will total between $4,000-$6,000 a month (pre-insurance)? A month! Anti-rejection meds will be a big part of that. She also will not be able to receive live vaccines for fear it could attack her new heart. 

It seems so unfair that Emerson only had 3 months of “normal”. Like she was robbed of something. You never imagine you’ll go through something this extreme. Sometimes I still can’t believe this is happening and I wish so badly I could wake from this bad dream. 

No. We will never have our old normal again. Parents who have healthy kids, hug them a little tighter today and consider how blessed you are. What we wouldn’t give to have that for our girl. Thank you Jesus, for carrying us when we can’t stand from the weight of the world on our shoulders. 

Home away from "Home"

It's quiet.

Too quiet.

Eerily quiet.

As I lay in my bed in Vegas, trying to get enough sleep for work the next day, my mind goes. Most nights getting into bed is the same routine. I get into bed. The only sound is the sound of the fan blowing. And I think. Some nights bring tears, but all nights bring sadness. I try not to think, but it is impossible. I lay in bed, and I don't have my wife next to me, and I don't have my baby next to me, and I don't know when that will be again. It's just me. I don't know the last time I slept well. It wasn't meant to be like this.

You see, the days I work and I keep busy. During the evenings and nights, I keep occupied with things to do. But bedtime? I am forced to lay down in the dark...and it is hard not to realize the gravity of my situation and re-live it all. My wife sleeping next to me brings me a senses of comfort and calm. She is my rock. Her presence next to me eases my mind. Without her, I have to fend off my own self; and that's never good. It wasn't meant to be like this.

This is a reality that I have kept telling myself over and over and over again that I am going to have to live with, and I have no idea how long. The reality that I live in Vegas during the week, and my everything is three and a half hours away in a different city. The reality that I will spend more days on my own than with my family from now on. It wasn't meant to be like this.

Last week, our cardiologist told us that it has been enough time to see if the PA Band would re-shape Emerson's heart. Whereas the band has been a success in terms of her doing better than when we first brought her in, the band isn't re-shaping her heart. This means for sure she needs a heart transplant. In the back of my mind I knew she needed a heart, but you have to hold onto this little shed of hope that maybe this would work. It is a cold slap in the face hearing this again. You know that this is what is needed in order to save her life and for to be "normal" again (even though we will never know "normal" again). But you know there can be complications with this, this is something very major. You think of an organ that pumps all the blood and oxygen to the rest of your body, and this needs to be taken out and a new one put in, and that is scary. You just have to put your faith in God that He has got this. Emerson could be waiting for a long time. We just don't know. And until then, I live this life that I must. It wasn't meant to be like this.

I have good days and I have bad days. I have days where I have come to terms fully with what Emerson needs and our situation. Days where I just say we will get this heart, and she will get better, and we will bring her home and we will be a beacon with everything that we have been through and learned, and we will help others. And I have days where it hits me like a truck. I question. I want answers. I want a time line. I don't understand. I plead with God. I cry. I walk around and try to act like everything is fine, but inside I am broken. It wasn't meant to be like this.

I have always been more transparent in my writing. I don't want people to see me and see that I am broken and worry about me. As funny as it seems, I don't want it to be weird and uncomfortable with other people. I have always internalized things. So I write. I let it flow. I don't ever think, I just write. It helps to write.

It wasn't meant to be like this.

Making Lemonade

As a new family you never think there will be a time you won’t be together. Sure, there may be a weekend or couple day trip that could happen, but for the most part you always envision you will stay together. What Brandon and I have to do now is anything but ordinary. Set aside the medical aspect of our life, we’re both still living in the U.S. just not in the same state. This concept is so odd to me. I think I could grasp it more if it were international or military related, but that’s not our situation. Now add in the medical aspect and you get a living nightmare. A new family, separated by hundreds of miles, as your daughter fights day in and day out in the hospital awaiting the gift of a new heart. Life isn’t supposed to be this way. 

We don’t have the normal milestones a healthy baby would have. By four months old, Emerson should be well on her way of enjoying tummy time, beginning to explore food, and getting more strength in her muscles. How we crave to see that happen, and eventually it will, but not in a normal setting. We get excited these days when we can just hold her, or she plays with a toy hanging oxygen wires over her bed. Life isn’t supposed to be this way. 

We knew this was going to be hard, but until the separation became a reality, I don’t think we knew just how hard. I will eventually settle into my own routine and way of life in my new “home”, but nothing is ever going to feel “right”. When all of this started, I lost sleeping every night with Emerson on my left. Now I’ve also lost Brandon sleeping on my right. Life isn’t supposed to be this way. 

Yet through it all, God remains the same. The same God in Vegas is the same God here with me in Loma Linda. The same God who safely guided us to the right doctors in Vegas is guiding the doctors here in Loma Linda. The same God who has performed miracles in Vegas is the same God who performs them in Loma Linda. The same God who heard my cries of despair and heart wrenching pain in Vegas is here in Loma Linda to provide the same comfort. I know God is here. I feel God is here. I see God is here. This is the strength that keeps me going. I frequently hear “I don’t know how you’re doing this,” and the simple answer is- I’m not. God is. God chose Brandon and I to be Emerson’s parents. To raise her, protect her and be her voice when she can’t speak up. As long as she lets me, I will speak for her. I will always be her biggest advocate. 

So I’m going to make lemonade out of the sourest lemons life has given me, and hopefully along the way, I can show others how real God is and how much He loves them. Let’s see how sweet I can make this lemonade, because let me tell you, once I’m finished, it’s going to be the best damn lemonade you’ve ever had. 

Back to Vegas and Work? :(

I don’t know what’s harder…

Coming or leaving?

The obvious answer is coming. That day officially changed everything for the rest of our lives. That day will never be forgotten. You all know about that day.

But don’t let that fool you. As I head back to Vegas, tears flow from my eyes and my heart hurts, this is hard. Very hard. For 6 weeks I have been there for my daughter and for my wife. For 6 weeks, I show up every morning to the hospital, hopefully to those wonderful Emerson smiles and joys. For 6 weeks, I met with doctors, spent hours each day in the hospital, and Andrea and myself created a new, albeit temporary, lives for ourselves. For 6 weeks, we got to know the area, where to go, where to shop, where to eat, and created our own little routine. For 6 weeks, every single day, we had each other. For 6 weeks, we leaned on each other, cried on each other, slept next to each other, encouraged each other, laughed with each other. Family is everything. Being displaced for 6 weeks is a long time, and we did it, and we have made the “best” out of it. And this is still only the beginning.

I left Vegas and my home and my friends and my job the day that all of this happened. And I have not been back. I have never thought about going back. I didn’t nor do I want to go back. But I have to. I have to for my family. I know this. This does not make anything easier. 

My wife is a rockstar. There is no one else I trust most with staying back and handling “things”. She is strong. She fights for E. She knows the routines and the hospital. She knows rounds. She knows questions to ask and what to look for. She has her notebook with information and notes from EVERY DAY of rounds. The attending doctors literally want to wait for Andrea to be in the room to do rounds, not me. That is my wife. For real, God knew what he was doing.

The very real thing is that I would not leave if I didn’t think my daughter was in an okay place. I know she is critical. Anything, including too much feed, could set her way back. I know this. But I needed one good week from her in order to go back. I needed her to show me one good week. And this past week was good overall. She smiled every single day at some point. She played every single day at some point. She was active. I got to hold her often. She feel asleep in my arms a few times. This was a good week.

But man, am I going to miss the daily smiles. The showing up in the morning when she is awake, and walking to her bed, and her looking at me, and realizing who I am, and just giving me the biggest open mouth smile with her arms and legs going crazy. Just telling the world "Hey Dad! This is my Dad!". Just knowing that my daughter KNOWS that I am her dad and how happy she is to see me. That. Is. Everything.

I am trying to figure out how I am suppose to go back to teaching with this. The honest question is how do I care about other kids when my own baby is in the cardiac ICU in California?? And I don’t have the answers. I know that I care. I know that I care about teaching and my job and I want the best out of my kids. This will never change. I know me. I know that i will need help. I am blessed with great and amazing co-workers. I know I will need prayers. I know I will need patience. I know I will need understanding. 

So, the next part of our journey starts. Me being back in Vegas and working and teaching; coming out on the weekends. My wife in Loma Linda watching and loving on and being with Emerson every day. And more worries from me come. I will always worry about Emerson and her health and well being and how she is doing. Now I worry about not being there for my wife. She will be by herself, walking by herself, going to the hospital at night by herself, sleeping by herself…there is lots of worry from me with her being okay, physically and emotionally.

Guys, I need help with continual prayers during this next phase of our journey.

Hills and Valleys

As an adult, I love rollercoasters. I love the twists and turns, I love the adrenaline, I love the thrill, I love laughing and screaming when I’m on them. As a child, I was absolutely terrified of them. Growing up in Cleveland, we were about an hour away from Cedar Point, and our whole family would always spend a day there each July. I have very fond memories of our yearly family trips. So you would think, going there every summer, I grew up loving them.

I can still remember the first time I actually decided to ride a rollercoaster. Not some little kid one, or one that wasn’t too thrilling, my very first “adult” rollercoaster. I had just finished my 5th grade year and was 11 years old. At the time, the Magnum was still the biggest coaster in the park, and I decided I wanted to ride it with all my older cousins and brother. If they could do it, why couldn’t I? Waiting in line was torture. Each step we got closer to riding, I began to question my decision. What in the world was I thinking? I remember looking at the red track, hearing the coaster zoom by, and feel my stomach drop. Pretty soon it was our turn to load and I knew I had a decision to make: get on or walk through and let it get the best of me.

As I was buckled in, I was trying my best not to cry. I gripped the bar in front of me (as if this would somehow calm my anxiety), heard the attendant do his announcement, and felt the car begin to exit the loading dock. For sure no turning back now.

If you’ve ever been on a rollercoaster before, you know that soon after the ride begins, you’re taken to the biggest hill the coaster has to offer. We begin to climb the hill and I hear the gears turning and taking us up to the very top. The mantra in my head was something like “Keep your eyes open. This won’t be so bad”. As we reach the summit and take the first terrifying drop, I scream. Not out of terror, but of excitement! This was amazing! Each quick turn and hill was exhilarating. I was actually sad when it ended. As we pulled back in, I couldn’t wait to get on another one.

So what was I so scared of? I had built up this “monster” in my head and had been scared of rollercoasters up until this point in my life. I had spent so many family trips not experiencing the full capacity of each day. Now that I knew everything was in my head, I had nothing to be afraid of.

My life right now is a rollercoaster. Never in a million years did I think this is what I would be going through. Sure, this is not a thrilling coaster I would ever want to experience again, but I look towards the end. The end where my family can be back home in Vegas, all of this behind us, and I can say “Wow. We did that. And we’re still standing, stronger than ever.”

There will still be many more hills to climb and summits to reach. With those, there will still be exciting moments when Emerson gives one of her classic smiles that melts your fears, or stares at her hands with such awe and intensity that you can't help but smile. There will still be the drop that makes my stomach turn. But I’m not focused on those. I’m focused on the experience as a whole. That those who have chosen to ride with us, do so knowing the twists and turns. And will be there and be able to say, “Yeah, I felt each one of those with you.” While no one in our friends or family fully can comprehend what Brandon and I are going through (not a dig at you guys- we love you so much and need your support more than ever), we feel blessed enough that so many people have willingly joined this ride with us. Not because we asked you to, but because you want to experience the highs and the lows.

Who else knows suffering and feels each pain we do, not only feels it, but takes it away? Jesus. We’ve spent countless hours crying out, begging for healing and a miracle. We’ve felt the gentle spirit of Jesus calming us, and carrying us when we were too weak to stand. Jesus knows how this ends. Emerson is a child of the King. He loves her more than we do. And He’s watching over her every heart beat. So if He’s the one who created it, what should I be afraid of?

One Month

One month.

One month today we came out to Loma Linda and we haven’t left.

We are on our 5th week with our 5th different attending doctor.

We definitely know this hospital life now. We know the daily. We know how things operate. We know the medical language and what is going on. We know when nacho day is. We know the nurses. Have actually made pretty good friends with some of them.

Is that good or bad?

There are so many things we have learned along the way. In terms of life lessons. I will never take for granted again of having a child, and a healthy one at that. I will never take for granted just the pure ability to hold my child whenever I wanted. How I yearn for those days. I now know those were the good days, and I 100 percent took them for granted. The days of coming home late from teaching and then coaching and just telling Andrea, “It’s okay, I will hold her tomorrow”. And you just think those days will always continue. Something like this happens, and you never in a million years would have guessed this. Never.

One month in and it doesn’t get any easier. And I hurt. I hurt a lot. I hurt all the time. And it just builds and it builds and it builds....it doesn’t get any easier.

The hard days are the days when she has bad days when she just had some good ones. The days that her heart rate is lower, and you can tell she is content and calm, and the way she looks at you and the smiles that she gives. Those are the good days. Those days we cherish. Those are the days we want Emerson to continue to have. I mean just selfishly, she is the darn cutest kid in the world, and those smiles and those clear eyes are magic to the heart.

Unfortunately, not all days can be good days. When she has bad days, heart rate is more elevated, she can’t calm down, she is fussy, she cries, she gets drugs, she doesn’t smile, she just doesn’t look like herself....those days are really hard. And those days become harder and harder as they turn into multiple days in a row.

I don’t mean to get sad or down. I am only trying to express how hard this is on the daily. I am only trying to be real, to let you into our reality. I love my daughter more than anything, this will never change. I will continue to be here for my daughter, to help fight with her. This will never change.

But.

I miss Vegas. I miss “normal”.