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A Little Glimpse of Hope

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hope

Hope. It’s a powerful emotion.

Without it you can find yourself with very little drive to move forward.

But, with it, you can uncover a powerful strength you never knew you had.

I guess nothing tests your faith quite like tragedy does. Correct me if I’m wrong, but watching your child suffer is one of those universal “question your faith” one time passes.

September 24th, 2014, was the true test of my faith, and I’m not sure I’ve passed that test yet. Anthony Michael, my precious son, was battling a life-threatening illness that had yet to be diagnosed.

My four-month-old was getting sicker by the hour and everyone was telling us it was just a virus. I often wondered what brought us to the turning point that saved his life-some say it had to be divine intervention and some say it was parent advocacy-but I think I’ve finally figured out what I believe it was. I think.

Let’s see if I can explain.

Personalities Don’t Change Overnight

So many of our friends and family know Anthony’s story. But, what they don’t know are many of the inspirational moments that fill in the gaps of time along the way. Sure, we’ll tell a story here and there about something kind he did or something silly he said. But being around Anthony 24/7 brings so much more than just his outgoing, kind, and comical personality.

Life with Anthony has been like that from day one. He’s always been interesting. Even before he was diagnosed with his brain tumor, and became a story of survival, Anthony was one-of-a-kind. And that fact was crucial to his diagnosis.

I still laugh at the first four months of his life when it comes to the topic of motherhood. He gave me very little experience in “momming.” Other mothers I know would always come up to me for how-to advice when it came to getting their kids to comply with the steps of growing up.

How do ou keep him from fussing when he’s hungry? How did you wean him off the pacifier? What makes him so happy?

I laugh because I did absolutely nothing and I have no clue what makes Anthony such a happy human being.

Anthony did that all himself.

Sure he didn’t feed himself or take his own pacifier away. But, he never cried when I took the pacifier away, he pretty much potty trained himself, and he’s always just gone with it. He has always made my life as a mom easy and enjoyable.

Now, you’re probably laughing. Most people think I have such a difficult life when it comes to being a mom. Most parents don’t have to face all we have faced.

But honestly, I don’t.

Sure it’s hard sometimes. But the good really does outweigh the bad and the hard times are always sprinkled with beautiful moments that make them worth it. And Anthony has always been this laid back, easy going, fun to be around, lovable kid that makes being a mom effortless and the best part of my life.

So, the first thing that tipped us off that something was really wrong with Anthony was just that.

I had a happy, easy going, always smiling child one day and the next I had a stone face, zoned out, crying so hard he turned blue, completely different baby.

I know my son.

I knew something was wrong.

I knew because in every way an infant possibly can, he told me.

Personalities don’t just change overnight. They don’t change unless something causes them to change. And at four-months-old there aren’t many outside influences that can change your personality. And the ones that can, they weren’t present in our life.

After days of going back and forth to doctors and hospitals, Anthony was now COMPLETELY changed. He was lethargic and…just…different. And when I told the pediatrician’s office this over the phone they said bring him right back to the hospital.

So, we sped off to Yale and we decided we were going to insist they find out what’s wrong or we wouldn’t leave. Because his personality had changed. A drastic change like that overnight had to mean that something was wrong.

Can Children Even Survive a Brain Tumor?

The first thing I said to the nurse doing our intake at the pediatric emergency room at Yale New Haven Children’s Hospital was “can you just run a damn scan and check because I feel like there’s something wrong with his head. I think this is coming from his brain.”

Rob and I were soon standing next to the Catscan machine while it scanned Anthony’s little body. I made eye contact with the tech who was running the scan and I knew what this was.

I looked at Rob and said, “he’s got a brain tumor or something.”

In an effort to keep me calm, he responded “Stop. You’re psyching yourself out and jumping the gun.”

“No,” I said, “I’m telling you. He’s got a brain tumor. I can tell by the look in that lady’s eyes.”

When, what seemed to be, the entire team of doctors and specialists and nurses walked into the room, I don’t really think I panicked.

I knew what they were about to tell me.

I had felt it in my gut.

Seeing all those people come in the room just verified what I already known. They confirmed what I already knew but had been dreading to actually hear.

I looked down at Anthony, laying there peacefully in my arms, but noticeably lifeless with IVs hanging from his little chubby arms.

The strongest feeling of guilt I’ve faced in my entire life came in the next moment. As I looked down at my child, I had these exact thoughts.

“This is it. I love this child more than anything in the entire world. Without him, I just can’t exist anymore. But, this is it. There’s no way this little body can fight something like this. I need to prepare myself now because he’s going to die.”

Those thoughts are ones I’ve struggled with daily ever since. There’s no doubt in my mind that they will haunt me for the rest of my life.

Of course, I wouldn’t expect myself to be super positive or driven to fight during those first moments, but the first thing that came to my mind in that situation was to give up. And at that time, I was giving up on my son. I was giving up when he needed me to believe in him the most.

For that, I’ll always feel guilty and mad at myself.

But, I accept that moment of failure. And, I’ve actually come to appreciate it in some ways.

I know that there’s no textbook to teach you how to handle a moment like that. I know I didn’t consciously think that way.

You know they say that from every bad experience we have, from every failure or everything we do wrong in life, there’s a lesson we can learn from it.

So, although that moment will be eternally engraved into my conscious, it’s made me a better person. So, I’m thankful for those thoughts I had. Because although they haunt me, the allowed me to become a better version of myself. And that has allowed me to be a better mom to Anthony.

There is no doubt Anthony inspires me to be a better person every day. So many people tell me he does the same for them.

But, in those first dark moments, even Anthony wasn’t inspiring me to fight.

Surprisingly, what changed my entire attitude during the first minutes of Anthony’s diagnosis was inspired by a  different emotion.

Anger.

Intense anger.

I know they say anger only creates problems, but the anger I was feeling in those moments was leading me towards the hope I needed to keep going. The anger had helped me. I needed that anger. Anthony needed that anger.

Moments after I began to give up, I turned to the student doctor standing to my right. He was leaning on the arm of the gurney, one hand on either side of my elbow.

Things were blurry to me then. I know there were lots of people there, but I kind of blocked everyone out. As I was looking at Anthony’s beautiful eyelashes, the man’s hand next to my elbow caught the corner of my eye, forcing me to look up at him.

I asked, “Do children ever survive brain tumors?”

“Hard to say,” he responded.

“I mean…can they? Can a child ever survive a brain tumor?” I asked.

“Hard to say,” he responded.

I was getting more and more pissed off with every answer he gave me.

“Ok. I am not asking you about my son specifically, I am asking has a child, EVER, In the history of children who have had brain tumors, survived?” I asked as the fire inside me grew.

“It really depends,” he said.

I turned back towards Anthony. I was now facing a full rage in my mind.

Jeez.

I know people are worried about getting sued. I know the medical field is tricky and things happen. I know one minute you can be told you have a chance to live and you can be dead the next. I know that this guy didn’t know me, but I’m not the type of person who is going to come after him if he says my child can survive and he doesn’t. These are some of the thoughts that were filtering through my mind.

And I became extremely enraged with this doctor.

At that moment, I was a mother whose son was dying in front of her and who had lost hope. A mother who had given up. A mother who was desperately trying to change her mind about what she thought was going to be the outcome of this nightmare, but who needed some more information. Because there was no possible way a little body like this could go through brain surgery and survive. Right?

Thankfully, I was so wrong.

But this doctor help didn’t bring me to the realization of that. And, in many ways, he made things worse for us. And had I not experienced a turning point, he may have been the driving force in a different outcome for Anthony. Because attitude and mindset do make a difference when you’re fighting a battle like Anthony was.

So, here we were.

A once happy little family.

Scared.

Feeling negative and defeated.

No hope.

And as I struggled with the thoughts bouncing around my head, and the not so hopeful response from the man I turned to for medical advice, there was no telling where we were headed.

I think I was convinced that wherever it was it would be without Anthony.

And for that, I have never been so sad.

Strengthened by Hope

As quickly as this massive group of people had swarmed into our room and turned our world upside down, they cleared out. Rob and I didn’t say anything to each other during that time along.

We looked at each other.

ONCE.

We put our heads down, and cried.

Then both of us just stared at Anthony.

While my mind is usually overflowing with thoughts and questions and ideas, it was blank. I was staring at Anthony and just not thinking at all.

Probably in shock or something.

A woman entered the room about ten minutes later. I had no concept of time anymore.

She sat down next to Rob on the side of the gurney where I laid with Anthony in my arms. She was quiet for a while. She started to talk and I honestly didn’t listen listen to her. I figured she was some sort of doctor or nurse or technician or someone there to talk about the next step.

I wasn’t interested.

Or, I wasn’t ready.

I just wanted to look at my son for as long as I could. Before I couldn’t look at him anymore.

At some point, I faintly heard her say, “I know this is a difficult time and your worst nightmare, but I’m a social worker with the hospital. How are you guys feeling?”

Was this lady for real? How was I feeling?

I was feeling like life wasn’t fair.

I was wishing it was me with the brain tumor.

I was feeling like there was no possible way that there was a God. I was feeling if there was He wouldn’t have turned this happy child into a lifeless baby in excruciating pain.

Rob and I made eye contact long enough for me to know what he was thinking. And, knowing Rob, I knew he was about to explode.

“Do you need anything?” she asked us.

“I need you to get the hell out of our room and leave us alone,” Rob responded.

I looked at her and wanted to come back with a similar response to Rob. But without even thinking, I said, “I think we need a priest. I think we should have a priest. Yeah. I need a priest please. ”

She left the room to go get ahold of religious services and we were quiet again. So quiet that the silence was eating at me. My mind started to spin.

A priest? Ha! A priest?

What were you thinking, Sarah?

I was literally talking to myself internally.

You don’t need a priest. What you need is a miracle.

And what the hell is a priest going to do anyways?

Come pray to the God that clearly doesn’t exist? Give you some bullshit line about keeping the faith?

Asking for a priest was stupid, I thought to myself as my mind drifted off again.

Time stood still and we continued to go through the motions.

Nurses and doctors were in and out of the room. I don’t know how long it took before someone came to pray with us, but I know it was fast. They probably got a message like-you better hurry up this kid is dying and the family wants a priest.

There is a lot I don’t remember from that day, but there is one thing I would never forget. The face of the man who came to pray with us.

I kind of think you create an instant bond with the people who are with you in moments like this one. People can be complete strangers, and suddenly they are standing over you in your most vulnerable moments and they now seem to be orchestrating your life. They don’t know you when they walk in, but they will leave knowing you like no one else ever will.

This was one of those moments.

HE was one of those people.

The man walked into our room and introduced himself as Randall. He wasn’t a Catholic priest, but some sort of pastor. I didn’t really care at that moment. I was trying to tell myself I didn’t care because it didn’t make a difference.

Because God didn’t exist.

But I think I didn’t care because I was subconsciously really desperate to get anyone to pray for my kid.

I think I was desperate to get someone to give me some hope.

He did that for me.

This guy.

This “priest.”

He came into the room a stranger and when he left, in my heart, he was anything but.

He didn’t say anything to us after he introduced himself.

He just stood there.

Quietly.

Not talking for a while.

We were all quiet.

Looking back, I wonder if he didn’t know what to say or if that’s what you do when you respond to these kind of calls. Like maybe you’re taught to enter the room and act a certain way.

The room was quiet, but my mind was loud. I think that’s what caused me to break the silence first.

“Because. Like..like I should want to pray right now, but I don’t really know how there could be a God. I don’t know how there can be a God because if He’s everything I’ve been taught He is then this wouldn’t be happening, right?”

We had made eye contact and, although he wasn’t saying anything, his eyes were telling me to keep going.

“I’m angry. I’m so angry right now because I asked this jerk doctor if there was any chance a kid can survive a brain tumor and he just…like…brushed me off,” I rambled.

“I wasn’t asking if my kid was gunna survive. I just wanted to know if anyone could survive, ” I continued.

“He could have given me…he could have given me a little bit of hope. Or even just straight up told me, NO! But he just gave me some sly, vague-ass answer. He shouldn’t have responded that way, you know. I don’t like him.”

My thoughts faded and I went back to my silence as I felt bad for just ranting at this poor guy.

I felt bad, but I was fuming.

And I’m sure Randall knew that.

When I stopped talking, he waited for a few seconds. Probably to make sure I had gotten it all out.

Jeez, I started to think, is this guy just gunna stand there and stare at me?

I didn’t realize how much I had needed that understanding silence.

Looking back, I see how important it was to the rest of the story.

The silence is what lead me to open up. The silence brought me the answer I needed. The silence lead the way to finding hope again. The silence stopped me from giving up.

“I’ve heard of cases where children survive.”Randall said.

I looked up. What did he just say?!

“Every case is different, and I’m sure they aren’t giving you an idea of where this is going yet because they have to run more tests. I saw he’s scheduled for an MRI, but, yeah, I’ve heard of cases where children can survive.”

I just stared at him.

“Really?” I asked. “I figured his body is too small to fight something that serious.”

“I’ve heard of cases of babies who survive tumors,” he continued.

Those few sentences were changing the way I was looking at this situation. What he said next hit it out of the ball park for me.

“It’s possible.”

It actually took me some time to continue writing because I’m just as speechless now as I was then.

Two words.

It’s possible.

That’s all I was wondering.

I had never heard of a child having a brain tumor. And in my mind, I couldn’t ever imagine how a child could survive something like this. So when I asked the doctor, I was hoping he would tell me exactly what Randall did.

It’s possible.

That’s all I wanted to know.

That’s all I needed to hear. The doctor had caused me to lose hope and made me angry.

But, Randall.

He fixed that.

Get Your Fightin’ Gloves On

Maybe asking for a priest wasn’t so stupid after all. I still thought God didn’t exist but I was grateful for the man who came when I asked for a priest.

He was just what I needed.

I changed after that conversation.

I could now have easily stood up and yelled, “someone grab me a pair of boxing gloves because I just heard it’s possible.”

It would now be one hell of a fight.

I could see it now

In the right corner, Anthony Michael Muoio. Anthony is a rookie who turns five-months-old tomorrow and he is coached by his mom and dad. He may be small, but he’s got a fighting chance!

In the left corner, a choroid plexus brain tumor. Once undefeated and known as one of the deadliest competitors in the industry, this fighter suffered some devastating loses when medical research and advanced technology stepped into the ring.

Who doesn’t love to see the underdog win?

The newcomer whose stature was tiny but whose fight was powerful.

As a realist, I knew Anthony wouldn’t leave that ring untouched. There would be lots of cuts and cruises and injuries that would have to heal if he won the fight.

As a Mom, I was a force in Anthony’s corner. I would be there to pump him up and cheer him on.

As a rookie myself, I was lucky to have a good mentor. Randall said it was possible for a kid to survive a brain tumor. Anthony was going to have to put up one hell of a fight but his team believed there was a chance he could do it.

The fight was about to start, so I looked at my assistant coach, Rob Muoio. “Pull yourself together,” I said, “We are not leaving here without our son.”

Fueled by Faith

We were getting ready to be wheeled up to the pediatric ICU where Anthony would be placed on a ventilator until they could run an MRI and decide the next step.

Right before they came to get us, Randall look at me and Rob and said, “Can I say a prayer for Anthony with you all?

Hell yeah you can say a prayer, Randall!

You can say whatever you want.

Without even realizing it, he was the first miracle we would encounter. The miracle I needed to get through the difficult times we would have to face to witness OUR miracle.

I don’t remember the prayer he said. Although I bowed my head to listen, my mind had drifted a million miles away.

He placed a green, crocheted rosary on Anthony’s chest, and held his hand there for a while.

We were then swept away to the PICU, and Randall went on his way.

What happened next is a story for another time. Lots going on. Things moving fast while time seemed to stand still. Millions of moments that would write Anthony’s story.

He stayed on the ventilator until the next day when they wheeled him off to a successful surgery that would last 9 grueling hours. Again, lots of moments  that will be written another time.

It took me a long time to come to understand, what I believe, what was the turning point for Anthony’s diagnosis and the factor that saved his life.

Those in the medical field would tell me it was strictly the doctors.

Those who rely heavily on their religion would tell me it was all God’s work.

I don’t exist in either of those fields.

The industry of my work is life experience. My professional field is motherhood with a focus on fighting pediatric brain tumors. And the job title I am so honored to have is Anthony’s Mom.

So, even if you don’t agree with me, hear me out.

What lead Anthony to where he is today was a list of several different things that came together to cumulatively be what we all needed to identify his problem and find a solution.

Those things are:

  • Anthony’s personality that signaled us that something was wrong.
  • Time which placed us in a year where a cure exists.
  • Anthony’s daycare provider, Ginger, who knew as much as I did that something was wrong with Anthony-giving me the confidence I needed to continue to pursue an answer.
  • Anthony’s doctors who were experts in their specialty.
  • Anthony’s nurses who prepared him for his battle and cleaned him up when it was done.
  • Me and Rob who believed in him and were determined to help him through this battle.
  • Anthony’s Army. The group of family, friends, and even strangers who fed us, supported us, prayed for us, and tended to the needs we had to ignore if we were going to focus on Anthony
  • And God. Yes, I said it. God who sent Randall to give us the hope we needed to come together and gather up the strength we needed to move forward.

Like many things in life, it’s not one thing that brought Anthony to today. To April 2018, where he is preparing to celebrate his fourth birthday.

While some may say God is behind everything that happens in our life, that isn’t my belief. I think there were a lot of strong forces that came together to create the miracle that is Anthony and the story that makes him special.

I still struggle with my relationship with God.

Some days I don’t have one at all. Some days I just don’t think about it. Some days I try to work on it. Some days it just hits me smack in the face and there’s no denying that God exists.

Looking back, God’s interaction with me during that time in my life had two parts. The first part was my faith my parents instilled in me growing up moved me to naturally react to Anthony’s diagnosis by asking for a priest. Once I made that request, God sending Randall was the second part.

Randall was my person in that moment.

He was exactly who I needed to give me the fight, or some may say the faith, to continue forward.

Strange Coincidences

I don’t know anything about Randall outside of our moments together in that pediatric emergency room. But, I know his purpose in life is to do what he does. And, while my faith and relationship with God may not be as strong as the next guy, I know that God is truly working through Randall.

We didn’t see Randall again until a few days after the surgery. We were blessed by another spiritual leader, who comes with his own story, throughout Anthony’s surgery and the rest of our stay in the PICU.

Three or four nights later, I looked out our hospital room door and saw Randall guiding another family through their terrible moments.

I felt for that family, even though I didn’t know them.

I didn’t know what they were going through but I knew Randall would help them as much as he could. Just like he did for us.

I grabbed his attention for a minute only to tell him that Anthony had made it through the surgery and to thank him for his support.

Although I should have, I didn’t tell him what he had actually done for me.

Shamefully, I never thought to ask for him during our trips to doctor appointments, and sometimes hospital stays, at Yale. I mentioned that to Rob one night and he agreed we should have, but we just never did.

Three years later, walking into that same hospital for one of Rob’s heart procedures, I was again questioning my faith.

This theme seems to be a big part of my life, huh?

As we walked into the room to get Rob set up for surgery, I had this strange feeling that someone was following me.

I looked over my shoulder to see a familiar face walking behind us.

I’m sure you have guessed it. It was Randall.

And while I knew he didn’t recognize us in that moment, I was jumping for joy inside. I probably could have even jumped up and down at that moment, like a teenie bopper who just saw their celebrity crush. But I kept my cool.

We walked into Rob’s prep room and Randall stood in the hallway just outside our door, waiting to talk with someone who had requested religious services.

I looked at Rob and said, “OH. MY. GOD. Do you believe this? I just want to run up and hug him, but I won’t.”

“Chill out.” Rob laughed.

“Rob, seriously does this not freak you out? Does this not give you the goosebumps? Like come on! What are the chances that he is walking RIGHT behind us as we’re both worried as hell and that he is now standing outside of the door?” I rambled with excited enthusiasm.

“Yeah,” Rob responded, “It is kind of crazy!” I knew he felt the same as I did but his nervousness for his surgery was stronger than his excitement to see this blast from the past.

“Say hi. Go tell him who you are,” Rob said.

Normally I would make him do it, but I knew he wasn’t in the mood. This would be up to me.

I paced back and forth by the door, staring at him. He smiled at me, but still had no clue who I was.

“Can I talk to you?” I gathered up the courage to say.

I was nervous.

He probably couldn’t understand why, but he brought me back to a very difficult time in my life.

And he did me a favor I could never repay. There’s a lot of emotion that comes with that. I wanted to say the right thing and come across in the right way.

This was a big moment for me.

“Sure!” he answered with a big smile, happy to help another patient in need of spiritual guidance.

I could feel my throat tighten up and hear my voice shift as I tried really hard to hold back the tears, which I somehow successfully did.

“We were here three years ago when our son was diagnosed with a brain tumor and you were with us before his surgery. You were on call when we asked for a priest and you came to pray with us.” I said.

“I remember exactly who you are,” he said as he placed us. “You were in the children’s emergency room when I met you and your son. I remember exactly where we were.”

“YES!” I said. “Anthony’s three now and he’s doing great. Here let me show you a picture!”

He smiled as he looked at the picture, “wow, he’s so big!”

There was so much I wanted to tell him in that moment.

But I felt awkward standing there.

I knew I couldn’t possible find the words, on the spot, to make it sound good.

For him to truly understand, it would take time. And I  knew someone who actually requested him was waiting and in need of his support.

“I just want to thank you. Your support really helped us during that time. We’ve never forgotten you,” was all I came up with before he headed over to the patient next door.

It was a lot more than those three sentences, but that’s all he got.

Perfect Timing

I’ve always known that things happen for a reason.

If it’s meant to be, it’ll be.

Last week affirmed my way of thinking when it comes to what happens in our lives.

Rob had emailed the other priest who stayed with us through Anthony’s surgery to see if he could come bless the food at his installation at the Milford Elks. In his correspondence he mentioned that we asked to see him back in October 2017 when Rob was in the hospital, but he was busy. “

We bumped into Randall!” Rob mentioned.

When Rob got a response from Father Bill I knew we bumped into Randall that day at the hospital for a reason. At the end of his response, Father Bill mentioned that Randall had taken a position as the pastor of a parish in Colorado and had moved on from Yale.

Perfect timing.

There was a reason our paths intersected back in October.

For me, it was more than just a sign of God’s existence.

Three years after Anthony’s surgery and a few short months before he would be far away from any chance of bumping into the Muoio family, our paths crossed.

I had hoped we would see Randall again.

In a journey like Anthony’s, there’s so much healing that has to be done and so little time to do it.

You tend to tuck your emotions somewhere deep down and keep plugging through the days, never planning to dig them up.

Even though you may try to ignore the difficult moments that lead you to the future, emotions and memories have a way of sneaking up on you when you least expect it.

That happened to me during an emergency room visit in 2016 when Anthony was diagnosed with his epilepsy. As his neurosurgeon entered the room to talk to us about what was going on, he was followed by the same student doctor who had added to my lost sense of hope.

And, although I thought I had overcome the anger I had on September 24th, 2014, it came back to me with force when I saw him. Just as I was ready to offer him a few choice words and kick him out of our room, I thought about what that anger did to me.

Without the emotions this guy had evoked, I wouldn’t have opened up to Randall.

So, even though I still don’t really like him, that doctor also played a meaningful part in our journey.

Although I wish I had the opportunity to tell Randall how much his guidance helped me that day, I’m glad I did get to thank him. And while he may never know the depth of his work with our family, at least he knows he made a difference in our moments of distress.

I’ll be forever indebted to him for sparking the flame in me.

And, as Anthony grows, I will be certain he knows about the man named Randall who helped his parents when they needed it most.

The man who pulled them out of the darkness and encouraged them to not give up.

The man who gave them back the hope they had lost. Or maybe the hope they never had.

The man whose green, crocheted rosary gift has and will continue to hang in Anthony’s room.

The green, crocheted rosary gift that hangs as a gentle reminder of the strength that can come when you give someone the slightest glimpse of hope.

 

 

 

 

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