“Something isn’t right in the ultrasound.” Those are words no expectant parent ever wants to hear and, unfortunately, last Thursday my wife Amy and I had to hear those words. The OBGYN office immediately set up an appointment for us with a Maternal-Fetal Medicine office at Winnie Palmer hospital and we left with significantly more questions than we had answers.
What followed was a long week of waiting, praying, and researching. We were told two possible conditions that our baby girl could have and spent a lot of time reading what information we could find about them. One of the conditions, CPAM, was hard to find much information on as it is incredibly rare (only 1 out of every 30,000 babies). Earlier today, we went in for a detailed ultrasound and a four hour long appointment at the hospital. After a long week of waiting for answers, we found out that not only does our child have CPAM, but she has an even rarer form of an already rare condition. It’s funny how sometimes an answer only gives you more questions.
Baby Girl
Essentially, there’s a massive tumor taking up over half of her chest cavity on her left side. This growth was supposed to be lung tissue, but something went wrong and it’s now just a mass of disorganized cells crowding out her organs. Her left lung can’t even be seen on an ultrasound and her right lung is only 15% of the size it should be at this stage. Her heart has also been pushed far to the right side of her chest where the tumor is putting intense pressure on it as it beats.
This tumor is filled with countless disorganized cysts. Normally with this condition they see one or two cysts that can be drained, allowing the tumor to shrink and the organs to grow. In her case, there are simply so many cysts that all we can do is watch, wait, and pray. We will be going in on at least a weekly basis for the foreseeable future for ultrasound scans to check on the growth of this tumor and the cysts from week to week. If the cysts are shrinking, meaning they’re draining, then our daughter has a great chance of making it to 28 weeks (we’re currently at 21 weeks). At that point her growth rate would increase, outpacing the growth rate of the tumor in her chest and creating space for her heart to beat and her lungs to expand and grow. If, however, they’re growing, then the outlook is not so good.
The terrifying reality is that if the pressure being exerted on her heart continues to increase it could either cause it to stop beating at any time or prevent blood from properly circulating causing the body to fill with fluid (Hydrops). Either scenario could be fatal. We are praying and hoping that the cysts begin to drain and that baby girl holds on till she reaches 28 weeks or so and starts to grow faster than the tumor.
If we can make it to that point, then it’s a matter of watching and waiting to see if her lungs develop enough to oxygenate the blood in her body after birth. In the best case scenario, the tumor will drain and stop growing, and her lungs will have the opportunity to grow and develop to the point where she doesn’t need a machine to oxygenate her blood for her after birth. She would still likely need surgery to remove the tumor at some point in her first year, and will be on oxygen for anywhere from months to years. If the lungs don’t develop enough, she will likely need to be taken directly from the womb and immediately hooked up to machines to oxygenate her blood and keep her alive while they surgically remove the growth. They then would keep her on these machines until her lungs could develop.
In any of those scenarios, we’re looking at anywhere from weeks to months to even up to a year in the NICU. Regardless, she will likely never have full functionality of her lungs. Just how bad that will be, and how normal of an active life she can live is something we simply will not know until the time comes. She may never be able to run, exercise, or play sports; but there’s always the chance, however unlikely, that she may. The doctor told us today to not be alarmed if she doesn’t move very much due to her situation and that it’s normal for these babies to rest and not move or kick often. Already our little girl is breaking expectations and she won’t stop doing flips, rolling around, and kicking all the time in Amy’s belly. She’s already showing that she’s a fighter (of course she is, she’s a Nettles) and we’re praying every day that she can hold on and make it to 28 weeks and beyond.
Please keep us and our daughter in your prayers. Both for her health/development, and for us as a family as we navigate this difficult time. We know that she’s in good hands. God is good and we’re blessed to live in a city with one of the greatest children’s hospitals in the world with an amazing team of doctors that will be caring for her. This is a frightening time for us and we’re living every day with the knowledge that her fight could end at any moment. That’s what makes each and every kick and movement so precious and special to us. We love you all, and we will walk this path wherever God may lead us, and we ask that you walk with us in prayer.
Love,
Stephen and Amy (and Evander who’s going to be such an amazing big brother)
It’s been a long while since I’ve posted a blog post on here and a whole lot has happened during that time. We played a ton of shows at the end of 2016 to celebrate our debut EP before fizzling out due to a lack of key members. During that time we learned a whole lot and we gained an awesome new member in Tori Valerio on bass (I’ll do a blog post soon introducing her). I also got married at the end of 2016 to an amazing girl named Amy that I met up in New York while I was touring with a musical in 2015. 2017 proved to be a year of rebuilding in so many ways. As a band, we didn’t play any shows in 2017 as we were without a drummer and I was busy navigating the first year of marriage which saw us moving back in with my parents for a time as my wife finished college. I spent much of 2017 rather depressed as we were completely unable to find a drummer to complete our lineup and I had a hard time finding work that was both well paying and felt worthwhile to me. Of course we’d all love to just play shows full time and be “rock stars” but for now we have to pay bills and eat haha. Eventually for my mental health I had to take a break completely from playing shows or recruiting a drummer. While that break was good for me, it killed me to feel like I was putting something so important to me on the shelf. Towards the end of 2017 my brother Jonathan decided to rejoin the band on guitar and as 2017 came to a close and 2018 began, we resumed the search for a drummer and quite quickly our prayers were answered. I met Brian Walters at an Emery show in January and in February he agreed to start playing drums with us. Couple that with being offered the chance to play at the Orlando date of the final Van’s Warped Tour and 2018 is shaping up to be an exciting year of rebirth for us. Personally I now have a job as the director for a music school and that has been a dream come true. It took a year of resetting and waiting, but we’re in our own place again and I have a studio/office to write, record, and play music out of. I’m at the healthiest place I’ve been in a long time emotionally, spiritually, and musically and I’m so excited for this next year! Can’t wait to see you all again at our shows and we want to get new music to you later this year! Thank you to everyone that has stuck with us through the last few years of starts and restarts, the best is yet to come!
Our debut EP Opened//Closed has been released to the world for you guys to enjoy! It’s coming to iTunes soon but in the meantime you can pick it up/preview it at www.hearthevoiceless.bandcamp.com
I am so excited to finally share this song with you! We’ve been playing this song live for over 2 years now and it’s finally ready to release to you all as the lead single off of Opened//Closed! Want to listen? Check it out!
I’m also able to FINALLY announce the official release date for the EP! Opened//Closed will be released on August 12th and you can pre-order it for only $3 right now on our bandcamp!
Thank you so much for your patience during this process! I’m so excited and for me the wait has been worth it! I can’t wait for you to hear the final product!
Adventures is a song I wrote about a dear friend of mine a few years ago as she was turning 18. I hope that you find encouragement in it to never give up on your dreams and know that your life has so much purpose and promise! The future is bright no matter how scary it may seem!
The songs are in the process of being mixed and we’re moving ever closer and close to the release of our debut EP Open//Closed! Today, I’m proud to reveal the cover art for this EP!
Big thanks to Hannah Stokes (www.hannahstokes.bandcamp.com) and Sam Mcumber for doing the photography and editing!
Its been a long journey getting here, but I can finally announce that the debut EP from The Voiceless will be released in May! Everything has already been tracked and right now the producer is mixing the 6 songs that will make up Opened//Closed!
Its funny, the whole process of recording this EP was so appropriate. Nothing with this band has ever come easy and this EP was the same way. Plans were made to record for the first week of February and be finished by the middle of week two. In reality, tracking started the second week of February and didn’t finish until mid March. On top of that I lost my job during this time period. As frustrating as the delays were, I guess nothing more perfectly mirrors reality. When I was 19 I was certain that I’d have my first EP released by the time I was 20. Life had different plans though, and now 5 years later its finally happening! It’s hard to really explain how exciting this is for me! I love this music and I hope with all my heart that you will too and I can’t wait to share it with you! I’ll be blogging some this next week or so about Opened//Closed and the future of The Voiceless so stay tuned for lots of news and info!
So ya… Opened//Closed is coming! Can’t wait for you all to hear it!
Big thanks to Matt Goings from Killian Studios for producing it! You can (and should) check out his band at https://allgonegrey.bandcamp.com/
Also a big thanks to Lamar Butler for playing drums on the EP! He’s a killer drummer and you should also check out his band at https://janeeyrefl.bandcamp.com/
Many of you that know me personally know about this, I’m a very open person and I’m not afraid to talk about things, but this is something I’ve never really publicly talked about. I want to be honest and not hide, and talking helps so here we go…
To be honest, I’ve been struggling with depression for quite some time now. Both on and off of medication and both in and out of counseling. Some days I barely have the strength to drag myself out of my bed and show up for work. It affects everything I do and has for quite some time now.
To be honest… I’m scared. I’m scared that I won’t accomplish these dreams that God has given me, that I won’t be able to function socially in a healthy way again, that I won’t be able to bring the music that I love to you guys, and that I won’t thrive in life. The words of Switchfoot’s song Thrive come to mind. I’m a musician, so I process the world in music. “I wanna thrive not just survive.” That’s me right now. I can survive just fine, but what kind of life is that? That’s not the life I was intended for and I know that.
“I’ve been awake for an hour or so
Checking for a pulse but I just don’t know
Am I a man when I feel like a ghost?
The stranger in the mirror is wearing my clothes”
To be honest I don’t feel like myself. I miss the hope I once had. I miss the wide eyed naive teenager I was that believed he could do anything he set his mind to. Deep down inside I still believe that, but its hard for to live like I still do. Another song that’s really been resonating with me lately is “Late Nights in my Car” by Real Friends. Fair warning there’s some language in this song.
“I’m not where I should be
I’m not what I could be
But I’m not who I was
Nostalgia gets the best of me
When I wake up it’s the same day
It f—s me up and makes me miss who I used to be
All I have are thoughts of me from back when I was eighteen and my bony knees”
To be honest I feel beat up. 6 years of adulthood have been nothing like when I thought I’d be looking at when I was 18. I’m 24 years old and I’m where I thought I’d be when I was 19 or 20. I’m still here, I’m still fighting, and I’ll never give up; but often I feel like I lose more than I win. I want to believe in the future like that again, and I know that someday I can.
To be honest, I so often feel hopeless, like nothing I do helps or makes things better. Like I keep crawling through a dark cave and there isn’t an end in sight. Like this will be how I feel the rest of my life and nothing is scarier than that!
To be honest, doing anything, even entertaining myself can be a massive struggle. I once heard someone compare depression to having every single food you eat no matter what it is taste like mashed potatoes and this is such a great analogy. Even things I used to love: stories, socializing, songwriting, gaming, sports, practicing instruments… they all have had so much joy sucked out of them. They don’t taste the way they used to and I so desperately want them back.
To be honest, I hardly see or talk to my friends anymore. This didn’t happen overnight, it happened slowly and gradually in a way I didn’t even notice until I found myself feeling completely alone and isolated. I stopped cultivating friendships that were good to me. I cut people off and I pushed others away. This is one of the worst things I’ve ever done and something I’m trying so hard to remedy. If you feel like I just dropped out of your life I am so sorry, please know that I still love you and haven’t forgotten the great times we used to have.
This is not the end of my story, its only a momentary pause, a side quest in this grand adventure we call life! An adventure that won’t end with me stuck in some dark dungeon but triumphant and full of life! I’m not there yet and I won’t be overnight, but this can be defeated and it will be. Depression is my dragon, my monster to slay, and even though it’s huge and scary and its claws and flames hurt me over and over again, the dragon will not win. I’m still here, I’m still alive, I’m still fighting and I won’t stop until I march out of this dark hole a champion. You don’t get to be called a champion for doing something easy, and this isn’t easy, this is the hardest thing I’ve ever done.
But to be honest… I don’t feel like a champion, I don’t feel brave, and I don’t feel like I’m going to win. I know I will, but I don’t feel like it. Right now I feel lost and alone, hurt and exhausted; and that’s how I feel most of the time day after day, week after week, and month after month.
If you feel like this… you’re not alone I promise. You are not alone and we don’t have to suffer alone. One of the biggest things I’m trying to do is stop pretending I can do this on my own… I can’t. I need help… and that’s ok. Its ok to ask for and have help guys! Please don’t forget that and struggle alone!
Thank you guys for reading this and for hearing me! Thank you for allowing me to spill my heart to you! One last final “to be honest”… this was hard for me to write. Not because I’m afraid to share this with my friends, but because depression takes away motivation to do even things that are good for us and because I’ve had this strange fear that being so open about this would hurt me as a musician trying to make it in this industry. But that’s silly… I value honesty and openness in my music to pretend this wasn’t happening would make me feel like a fake… and being honest with you guys is way more important than any strange fear of looking bad for a label or whoever it is I shouldn’t be worrying about. Thanks guys 🙂
So I’m in New York! Crazy I know! I’m living on Long Island doing an anti-bullying musical called No More Victims with a non-profit theater company called All Access Productions. We’ve spent the last month rehearsing and on Friday we start our 2 month tour performing in middle and high schools across Long Island. I couldn’t be more proud to be a part of this company!
When I met them last fall, the director Dan talked about being a voice for the voiceless and standing up for those who are bullied, abused, and alone. Anyone who knows anything about me or this band knows that that is the goal I have for this band, it’s the reason we’re called The Voiceless. Being here is giving me the chance to not only live out that message, but to learn from people who have been doing it for years! I will still be moving to Nashville after tour is over and the band is still going to continue so no need to worry about that! There are big things for The Voiceless in the future and being here is a part of preparing and walking into that for me! Here’s a look at what I’ll be doing for the next 2 months!
This is a message that the schools of America desperately need to hear. Countless kids are suffering everyday because of bullying and it’s time to say enough! Students should not have to suffer at the hands of their peers! It’s time to see empathy and compassion return to our culture, and this production is a powerful tool to work towards that end!
We have a cast and crew of over 20 people and it cost a lot of money for us to be housed and fed as well as the money it takes to produce and run a program like this! Each and every one of us is making absolutely nothing off of this. We’re walking away from jobs and opportunities to spend 3 months doing this for free! Not even our directors or staff make even a dime off of this! In order for us to meet our budget we’d have to charge each school we perform at $6,000 and that’s just way too much money! We want this to be in as many schools as possible so we’ve cut that number in half! Each school we perform at is asked to pay $3,000 for the day, and each of us as cast and crew have committed to raising $3,000 to match that and make it possible to bring this to the schools!
We need your help! I need your help! Not a dime of $3,000 I’m raising goes into my pocket! Every last penny goes directly to helping a school afford to bring No More Victims to their students! I believe this is a cause worth supporting! Would you be willing to join us? To help fight for those that have no voice? To be a voice for the voiceless? To help us tell hurting kids in these schools that they are loved and that there is hope? I still need to raise around $2000 to meet my fundraising commitment, would you be a part of that? Don’t think that what you can afford to give won’t help! If 200 of you gave just $10 then we’d have the money we needed to help a school bring us in! Imagine the power of just 10 people giving $200 dollars to make this a reality!
So many of us have either personally been affected by bullying or seen it tear apart people we love. Its an evil horrible thing that we can bring and end to! Enough is enough! You can make a difference! If you want to donate you can easily donate on the All Access website through paypal!
If you have checks, you can send a check directly to our offices and ensure that 100% of what you donate gets to the schools! (paypal takes a percentage out of each donation that we lose).
All Access Productions
PO Box 663
Smithtown, NY 11787
Either way, please include a note, either as a paypal memo or with the check designating that you’re donating to help me meet my fundraising commitment.
Thankyou so so much! I really believe in what we’re doing and I want to see this get in as many schools as possible! We’re still booking and we’re looking at reaching between 20 and 30 schools over the next 2 months! Can’t wait to get new music in your hands this winter and can’t wait to see you on stage again soon!
Last week on Tuesday we had the opportunity to open up for Spoken and Random Hero out in Kissimmee at Second Saturday Showcase. This was a particularly exciting concert for me because I used to go to shows out at SSS all the time as a teenager, and finally getting to play their was a blast. On top of that, we got to open for Spoken, a band I used to listen to back in middle and high school and a band I have a lot of respect for. For those of you that weren’t there, the concert was absolutely fabulous. The show was booked last minute which left us scrambling for a fill-in drummer and our buddy Billy (formerly of fellow local pop punk band Kids Without Heroes) came up big time for us and was amazing. Despite the last minute nature of the show, it was the best show we’ve ever played. I had fun again, and left encouraged and hopeful for the future. Something I’ve learned about music: if you’re not having fun, the audience isn’t going to either; so if playing your music ever becomes a chore, find a way to reenergize it and never forget how blessed we are as musicians to get to write, play, and share music!
This was our first ever show opening for a nationally known touring act, and both Spoken and Random Hero were wonderful to be around. They were friendly and didn’t make me feel like I was less than them. They were real and down to earth and that meant a lot to me. I woke up Wednesday morning with the weirdest feeling, Tuesday night was the first night of the Spoken/Random Hero summer tour and they were heading to Jacksonville that night. I, however, was heading into my daily job, and all I wanted to do was be on that tour with them. This year has brought a lot of changes to my life. My parents are moving, I’ve graduated from college, and I will also be moving later this year. The show on Tuesday came at a very good time for me. Ever since graduation I’ve been continuing to battle depression and have at times felt aimless and drifting. Being around people that are doing what I want to do, and getting to rock out on stage with my brother and friends for the first time in a couple months was exactly the encouragement I needed.
I’m no longer that college kid with dreams and a part time job. This is the time in my life to make things happen and to chase after dreams. Part of this last month for me has been coming to that realization, that I no longer have to wait to finish college. The time is now, and I’m going to be making some big changes these next few months to make that happen. I can’t wait to look back on my life next year and see all the adventures that happened in 2015!
Speaking of adventures, here’s a live video of our new song called Adventures from the concert on Tuesday. Hope you guys enjoy it and I can’t wait to get new music into your hands (and ears) soon! I’ve also added a couple of other fun videos to my channel if you want to check them out. Expect that channel to become very active over the next few months!
