Perspective is Everything

Putting words to my feelings, after a medical experience with Anthony, is always so important to me. Most times my therapy is writing. Transferring how I feel to paper heals me, releases my anxiety, allows me a chance to exhale.

The experience of the three days in Boston was a roller coaster-heart breaking, life changing, eye opening. Of all the feelings that have run through my body, I think humbled sticks out to me the most. Walking away from Boston, this time, I have a different view of the little man that I’m lucky to call my son. I learned things about him I never knew, or was too busy to notice. He taught me things that have made me a better person since I left Boston last week. Once again, he has changed me.

My general attitude when going to Boston Children’s Hospital is one that focuses on how lucky we are. We come face to face with sick children, some much sicker than our son. Their parents are pushing them around the cafeteria, in wheelchairs, with chemo machines rolling beside them, wearing masks to shield them from the danger of the air that all us “normal” people are able to breath with no issues. I watch Mom’s leave their newborns with a hospital volunteer, while they run to get their cars, wishing they could afford valet as they scrounge through change to pay the parking attendant. I watch Anthony interact with kids who are older than him, but can’t talk, are still in diapers, and appear to have struggles much greater than anything we have endured. Many times I look in awe as Anthony befriends a child with physical disabilities that many other two year olds might notice and draw attention to. Our son’s only focus being making a new friend, talking about his dog, introducing his Mom and Dad, asking to meet their parents.

But, this time, when we went to Boston, this trip was different for me. This trip completely shifted my view of our journey. My view of what goes on when we walk through the doors to Boston Children’s Hospital. My view of our son. Our Anthony.

I saw things I had over looked as I walked through the doors of that hospital for the past year. This place seemed so different. It was as if I was walking through the doors for the first time. A new experience. But really, a new perspective on what I have been experiencing all along but not taking the time to pay attention to. And with that came a little bit of embarrassment, a little bit of sadness, a little bit of shame. Because while I had walked through those doors before, I was always looking around. I was never looking down at the hand I was holding. At the sick kid I was rushing around the hospital. At the brave warrior whose battle should be the only one that gets ANY of my attention.

I’ve always approached this situation with a positive mind that feels, despite our struggles, in the grand scheme of things, we are so so sooooooo lucky. In our journey, we’ve watched parents say goodbye to their children. Forever. And I’ve worried about that often. But, I’ve decided to focus on how Anthony, and us as a family, can take this experience and make it into something positive.

But, last week, something struck me in a way I had never experienced in the almost three years that we have been going through all of this. Something drew my attention to the feeling of a pulling on my hand, and, sadly, for the first time, I zoned in on Anthony. On his battle. On his struggle. On his strength. On his perseverance. On his resilience. On how truly amazing he is as an individual. This time, it was different. This time I looked at my son and felt (I hate to say this) kind of bad for him. This time I felt the hardship of Anthony’s struggle and I developed a great sympathy for my little son. I developed a sense of awe at his journey. I looked at him in a different light.

From the moment we walked through those doors, my son was a warrior. He was ready to face this battle, strong attitude, understanding of the tests that lie ahead, knowledgeable of the importance of this for all of us. While this was his battle, his struggle, his concern was everything and everyone but himself. Whether it be the infant coughing on the elevator whose Mom was directed by Anthony to give him some water, the girl in the lobby who took his favorite toy but “needed it,” or his parents, whose necks he put his arms around as he proclaimed, “I’ll take care of you guys.”

In what, I feel, has been his most difficult situation, I’m proud to say, Anthony handled as a gentleman, a warrior, a mature individual who understood that, although it may not be easy, this is his life. This is our normal. And, although he can make it miserable, difficult, and exhausting, he handles it with a grace that only someone of his nature would be capable of exuding.

Unfortunately, I feel as though I have focused so hard on Anthony remaining positive, more than I have sympathized with him for his struggle. As friends say things to me like-“He’s who he is because of his wonderful parents.” “You do so much to teach him to be respectful and caring.” “You guys all inspire us.” I feel, so often, as a Mom, that I fail in so many ways. That I’m the lucky one to have been blessed with such an amazing son. That I fall short of what he deserves as a parent. That I just want to be so perfect for this perfect human being that God trusted me and privileged me to parent.

From the three hour drive to the newness of an overnight experience at the hospital. From walking into a room filled with cameras and machines to be hooked up with wires and probes and taped and glued and stuck in a bed surrounded by big cushions, when you were used to sleeping comfortably snuggled up to your Mom. The way Anthony handled this whole situation has left me completely speechless. When speaking to those closest to me, my conversation went something like this: “I know I say this all the time, but I am so proud of him for how he handled his situation. I am so in awe of how strong he is.”

The truth is, this time, I looked at this boy from a stranger’s perspective. I watched him sit calmly as the sleep study tech covered his head with scary probes attached to wires and stuck to his head with glue. As they covered each probe with a piece of tape, he pushed it into his skull and said, “I’ll squish it for you.” I watched him wake up throughout the night calling out “MOMMY!” When I suggested he go back to sleep, I never imagined he would take only a little bit of comforting. He understood how necessary this test was. Not for himself. But, what he felt was to help other people.

During this trip, I watched my son wake up after only four hours of sleep, smile on his face, greeting the technician with a friendly “A’ morning!” As she rushed to rip the probes off his head, blizzard on its way, his only comfort became reaching out for a hand to hold. No tears. No complaining. No fear towards the person doing this to him. Just an understanding that this was what needed to be done, and he needed to cooperate.

After that moment, I swore he wouldn’t allow another technician to put those probes back on his head as we headed to the 24 hour EEG. I said that he would be so turned off from the pain of ripping them off that he wouldn’t allow them to put them back on. Besides his excitement of wanting to talk to the new technician about Paw Patrol and Fireman Sam, he sat completely still for another 45 minutes while his next test was administered. We threw the backpack on his back and were on our way, in the middle of a blizzard, for our 30 minute drive to the hotel.

Once there, his imagination kicked in. He wasn’t a kid with this limitation from the itchy, annoying, and limiting test on his head. He was the star of a talent show, singing and dancing. He was a firefighter, using the hotel room phone to put out a fire.

We walked down to the lobby, where other boys and girls were heading to the pool. He watched from the window, understanding that he couldn’t bring his test into the water, and clapped as the other kids had fun. He sat with the old man who, with no family around, had come to get shelter from the lack of electricity from the storm. He entertained the front end staff. He pulled stranger after stranger over to the hotel kitchen to show them how the refrigerator held yogurt in it, which reminded him of Rich and Mary’s house, and he proudly told each person how Precious, Rich and Mary’s dog, would lick the yogurt container clean.

Anthony kept strong through the entire night. He woke up in an uncomfortable situation of pain and irritation. I explained that he needed to stick it out, and our conversation ended there. The fact is that, at almost three years old, I can reason with this child more than I can with most adults. He amazes me. His only request in the morning broke my heart. “Can we go home, Mom. I want to see my friends.” I wondered if he felt homesick during this situation. I wonder if he understood that we come here for his treatment. I wonder if he associated traveling with being sick.

I understood Anthony’s battle in such a different light last week. Don’t get me wrong! I have always been so proud of my son for how far he has come. I have always, always felt blessed to be his Mom. I have watched in awe as this little life, that I created, has taught me more at two years old than most people have taught me in my lifetime. His whole journey to me has felt like a dream. Each obstacle that he has overcome, I have never understood how he did it. But he did. For that I am proud. For that I am thankful. For that I am so so so relieved.

I looked over at my son in the afternoon and talked to him as we approached the time to get the EEG off. I told him we needed to get his test off before we could head home. “Will it hurt Mom?” He asked as we headed towards the hospital. “No silly!!!!” I lied in this moment because I wasn’t sure if it would hurt him or not. If it was anything like the night before, then yes, it would hurt.

I am so thankful for the technician who took such special care of taking his EEG off. She waited long enough to soak his glue covered bandages that they would just fall off. She washed his head in a therapeutic way, asking me if his scar was sensitive. She combed the last of the remnants of glue out of his hair, most of it probably left over from his not so great experience the night before. Anthony sat up, gave a “woot-wooooooooo” (which is his version of a whistle for looking good), as he popped down, high fived, and knuckled up with this woman that just took such good care of him.

We walked into the lobby, to wait for our car, where our son interacted with the other kids around him. As he watched a little girl grab his favorite toy, I told him “you have others so play with your car.” She handed it back to him and Anthony graciously said, “You have it. I share.” This was who he was. Despite how much he wanted something, he understood that, at least in this setting, someone else might need it more than he did.

The ride home was quiet. Anthony immediately fell asleep. Rob and I didn’t have much to say to each other outside of discussing what we would do for Anthony when we got home. To show him how proud we were of his courage, cooperation, and understanding. We were mentally and physically exhausted from the last three days. In addition, we were both somewhat speechless. Where we had expected temper tantrums, screaming fits, hanging wires that were ripped off because he wouldn’t want to wear this thing, misery, stress, this trip was everything but what we had anticipated.

How do you explain to a two year old that they need to undergo a sleep study overnight, in the hospital, attached to machines and wrapped up like a mummy, then go to another area to have your head wrapped in a similar way where you would need to carry it around with you for 24 hours? We used the best analogy we could think of. “The doctor’s need to watch you sleep and watch how you act throughout the day so they can teach other kids to be super heroes. If you set a good example, you will officially be Batman.” Little did we know this fib we created would stick in his mind the way it did.

As we walked out of the hospital to head home, Anthony went up to one of the Boston police officers. “Thank you for my service.” he said. We often chuckle at his misuse of pronouns in his speech. Since he was wearing his cape, the police officer shook his hand, smiled, and said “It’s really nice to meet you super hero.” Anthony’s eyes shot open as he rested his tiny little hand over his mouth with a gasp! “Are you Superman?” the police office asked.” No,”  Anthony replied. Expecting him to talk about how he became Batman, my son uttered the words that made me most proud during that trip. “I’m Anthony.” I walked away from that moment repeating our son’s response over and over in my head.

When we got home Rob and I wanted to tell him something. I volunteered to do the talking as long as he would listen. Over the crunch of Cheetos and the excitement of the anticipation to make the Peep’s Rice Krispy treats that his Aunt Alice sent us the recipe for, I wanted to make this quick. “We are so proud of you for how awesome you did in Boston. You were a super hero before, but you came home as an even stronger super hero this time. You aren’t Batman like we promised, but you are Anthony. And, to us, that’s an even better super hero.”

His response. “Aw. Thanks guys! I’ll take care of you.” For me, those words identified his super power. HE takes care of ME. And I’m so humbled and grateful that he does.

 

 

 

9 Things We Learned from Opposite Sides of Our Son’s Hospital Bed …

Besides my husband, who couldn’t miss me balled up on the floor next to our son’s crib every night as my gut kept telling me that something was wrong, no one knew the struggle that started from the minute I first laid eyes on our sweet little boy. And, as we spent many days and nights staring at each other from opposite sides of a hospital bed that was way too big for this tiny human being between us, that same gut feeling gave us the chance to learn a few things that neither of us could imagine would be part of our parenting experience.  

1.)    It isn’t easy.

It is definitely not easy. In fact, it is pretty damn hard. It is so hard that it will take your breath away, knock you right on your butt, and leave you wanting to curl up in a ball in the corner of this cold, sterile room. And, unfortunately, things don’t get easier as time goes by.

2.)    How others view you is the complete opposite of how you view yourself.

I can’t tell you how many times people have said to me “I don’t know how you do it,” “you are so strong,” or “I couldn’t imagine being in your shoes.” While everyone around me tells me how strong I am, most days I feel like there isn’t a muscle in my body that works anymore. I question myself constantly. A simple decision quickly turns into this ongoing battle in my mind that leaves me physically exhausted. I always feel like I am choosing the wrong path. When we end up in the hospital again, I try to think back to which of MY decisions has landed us there. I feel like the shaky fate of this amazing little human being is lying completely in my hands and I’m waiting to turn the corner where I fail miserably and am the reason everything falls apart. I look in the mirror and I see the complete opposite of the strength that everyone claims to see in me. I look at my son and wish I could be so much more for him, that I could have all the answers he needs, that I could take all the pain and suffering away. But, I can’t.

3.)    It is painfully exhausting.

Sometimes I think the degree of tired I feel is close to what it must feel like to be ready to die. My entire body shakes from the inside-out. My heart races. My limbs ache. My chest feels heavy. I tell myself every night that tonight will be the night I sleep, but it never works that way. Usually the nights I seriously consider sleep are the nights that go wrong. I make a pot of coffee at 11:00pm and hop into bed to begin the real work of trying to stay awake to make sure that Anthony is safe. Sometimes, as the sun rises, I sneak an hour or two of sleep. Something about the light of day makes me feel safe. Makes me feel that I can rest my head momentarily. Only a few people know exactly how tired I am. One of them being Anthony’s Grandpa Bob, because, for some reason, on my worst days, when I hear his voice, I can’t help but break down crying and say “I’m just soooooooo tired.” He’s just that person for me. The other person being my husband. But we wouldn’t dare have a conversation involving that topic. The last person you want to complain to is the one who actually does understand what you are going through. You never want to be the one who brings up those fighting words…the ones that compare who lacks more of the thing that is keeping you from your sanity. In our case, the one who got less sleep.

4.)    The day can change in an instant.

There have been many days where I called my Mom with excitement for the day ahead, only to be knocked down from a sudden episode that left us at the mercy of the medical world. I can hang up the phone one minute on top of the world, and call my Mom the next minute in a complete panic amidst some chaotic emergency. Life changes that quickly for us. And the uncertainty of our son’s condition is probably the hardest part of what we’ve been through.

5.)   You won’t feel sorry for yourselves.

Although I would love to be able to take this all away from him, this journey has been a blessing to us in many ways. And, while people say, I feel so sorry for you guys, I feel so sorry for Anthony…strange as it sounds, we don’t. Through this, we have met some amazing people. People whose paths we would never have crossed had we not been forced to be here. People who have carried us on our bad days and celebrated with us on our good ones. Our people. Our family. Our tribe. So, considering the circumstances, we are pretty lucky. And, one thing about this journey is, you are forced to be part of a community where, when you think you have it bad, you are humbled by meeting someone who has it much worse than you do. And, the beauty of it is that, those who have it the hardest are out there inspiring everyone else to keep fighting. Many of the world’s bravest heroes haven’t even cut their first tooth, and we’ve been blessed to meet them.

6.)    You can smile, even though you are crying inside.

Just because I have a smile on my face, doesn’t mean it is real. I have become very good at putting a smile on my face during a difficult battle. Truth is, you learn to be positive for your child. You learn to smile, even when the thought of it makes you want to vomit. And, faking a smile often leads to laughing at the most awkward and inappropriate times. I can’t tell you how many nights my husband and I looked at each other in the darkness of a somber room in the Pediatric Intensive Care Unit and burst out into a fit of laughter. I remember saying, “What is wrong with us?! We’re so weird!” But eventually, our laughing fits were joined by a little boy who was way too happy for someone who just had brain surgery or who minutes earlier was completely unconscious, and it strangely makes sense that we can laugh.

7.)   You will realize you missed your calling as a medical professional.

Funny thing is, before this happened, I couldn’t even walk into a hospital room without feeling faint. Now, I hold my son’s hand and watch nurses slide IV needles into his veins while him and I talk about what’s happening as if it is normal procedure for every two-year-old. I talk test results, medications, medical conditions, side effects, symptoms, and evaluations like a doctor whose been practicing for years. Sometimes, I have to correct the doctors we are seeing, knowing they are wrong. I administer medication several times a day. I have been covered in blood, sweat, tears, and even Cerebral Spinal Fluid. I have acted as a chemist on a team dedicated to come up with a concoction for curing the world’s worst diaper rash.  And we probably should have set up a patent for it. I am an expert when it comes to pediatric brain tumors and everything that has gone along with the experience. Knowledge has been our key for survival, and I’m hell bent on watching this kid beat it all.

8.)  What you need most is people to be there for you.

So many family members and friends call to beg that we let them do something for us. So many of our people apologize that they can’t do more. Truth is, just being there is what we need the most. While the delicious cups of coffee, hot meals, cold drinks, and warm blankets help to revive us when we are hitting rock bottom, it is the prayers, the texts, the calls, the visits, that really charge us. And if we don’t answer when you reach out, please know that just hearing from you really did make a difference in our day. Sometimes we are just too emotional or exhausted to even think about picking up the phone.

9.)   You wouldn’t want to change it for anything.

Yes, life with a chronically ill child can be tough. It can be debilitating, overwhelming, frustrating, and painful. But, more than anything, it has opened our eyes to a lesson that most parents are not fortunate enough to learn. The beauty of each setback that we overcome, each milestone we never thought we would see, each comeback that we prayed for, is something I’m sure can only come from knowing the darkness we have faced. As I think of the moment they rolled him by us, lifeless, a machine breathing for him, not knowing if I would ever see our smiling little man again, I’m immediately drawn to the excitement of our reunion. Standing by the door of the family waiting room. Hearing the rush of nurses and doctors wheeling him down the hall. Catching that first glimpse of my tumor-free, strong, little warrior. A baby whose will to fight is something of an imaginary super hero whose magical powers give him an advantage over the average human being. That first glimpse carried with it a pride that I assume will go down in history as the best feeling I will have in my lifetime. For that tiny moment in time, that split second when he rushed by, that fleeting glimpse of the answer to my prayers, that miracle moment- brought me to realize this. There is no journey I would rather have. I wouldn’t change this for the world.

So, while it took some time to get used to looking at the scars, that would remind us of our moments of intense fear, I truly understand what they mean when they say your scars tell a story. They talk about why we should appreciate life a little more, complain a little less, be kind to each other, and be grateful for what we have. They give meaning to the saying “it took a village,” or in this case an army, as we’ve realized that Anthony’s Army is comprised of many different hands that each have a unique role in helping to raise our son into an amazing human being. Most importantly, for us, his scars tell the story of a baby boy who, with the odds stacked against him, went on to teach those around him the power of love, hope, and faith that comes when you believe. And the greatness that becomes possible when we can all work together.

2017…watch me! 

2016 brought us some deep struggles. But as I always say, it is my struggles I am most grateful for. Through these, I have always become the best version of myself. In 2016, I said goodbye to a boy who had a large part of my heart. I lost a job that I was truly passionate about. I watched my father take his last breathe. I buried my best friend, the biggest part of me, my heart and soul. I began a battle that was truly driven by jealousy and deceit. 

I have truly amazed myself in the past twelve months. Through my struggles I have molded myself into a resilient and strong person. I have become someone that is completely opposite of who I was twelve months ago. I have become the truest version of myself. Through prayer, I have survived. 2016 began with me in a deep depression, struggling with the idea of even surviving this year. Literally. 

In the same breathe, 2016 has been a year of great strength. My son has inspired me to push through every struggle. Watching him fight through his battles has made me put life into perspective. In 2016, I watched my son suffer seizure after seizure while doctors told us we were wrong. In 2016, I got a call from his daycare while I was an hour away, to tell me he suffered a grand mal seizure. 

I remember how my heart pounded as I drove those fifty minutes to my son’s side. I walked into that hospital room to see Anthony laying lifeless on a bed, as doctors pulled his eyelids back to see if his eyes had gone back to normal. I watched his chest pump up and down, in the most constraining motion, as if he were gasping for air. I prayed for the moment he would wake up. And when he did, I smiled at him, only to watch him smile back with one side of his face. Paralyzed from the seizure that he had just suffered.

In 2016, I learned a hard lesson  about who my true friends and family are. While this realization made me sad for our losses, it made me oh so grateful for the gains of our true family. In 2016, I feared that I could be the Mom that my son needed me to be. I worried that he deserved more. I feared that I would screw him up because of all that screwed me up. In 2016, I wondered how I could possibly survive. As I enter 2017, the fact that I did makes my year so much more amazing.

I look forward to a year of answers. We go to Boston in January with promises of some answers to Anthony’s struggles. I look forward to seeing my son thrive rather than watching him struggle. In 2017, I’m confident that medicine will be on our side. I look forward to watching Anthony reap the benefits of physical, occupational, and speech therapy. While many of our family has no clue, our son has silently struggled with the affects of his stroke in so many aspects of his life. I’m looking forward to watching his therapy ease his work load. I’m praying for an easier life for the most amazing human being I’ve ever known. 

In 2017, I wish wealth, health, and happiness to all the amazing people I am blessed to know. To those that have hurt me, I wish the love and forgiveness that only God can bring. To find all that you are missing in life, to find what you are lacking. To my mother, I wish a new found lease on life. Although it is difficult without my Dad, I hope you find the beauty in every day that I am sure he is bringing to you. 

For my son, I wish an amazing and life changing 2017. I hope you continue to bring joy to those around you. I hope you continue to raise awareness to pediatric brain tumors. I hope you continue to raise awareness for seizure disorder. I want to continue to watch you change the world with your genuine concern for other human beings. It amazes me that at 2 years old, this is who you are. You are someone who will make this world a better place.

2016, thank you for my struggles. Through them I have become a better version of myself. Through my struggles I have come to appreciate those that truly have my back and know the values of loyalty, love, and dedication. I have learned to care about those who care about me, first and foremost. I have learned to stop worrying about those who don’t matter in my life. 2016, thanks for the lessons, and thanks for all the amazing opportunities that lie ahead as we embark on 2017. This year is mine! 

Go Gold Already!

I don’t believe in rants. In a time when politics are absolutely out of control, listening to other people’s opinions makes me stomach sick. I am all too familiar with people with a personal vendetta using media outlets to blast those that they aren’t so fond of. So to me, rants are just a way to hurt others. But I think in this case, my rant is justified.

Back in September I went into Shoprite, like I normally do each week, and I was asked to donate money to breast cancer awareness programs. Based on how I was raised, I had a really hard time saying no. Regardless, it bothered me that they were asking me to donate money to breast cancer. Breast cancer awareness month is in October and everything in me became overcome with anger as I informed cashiers what September was really about.

“I’ll donate to your cause, but you should really be raising money for childhood cancer awareness,” I said to the cashier. She just shrugged her shoulders and smiled at me. I looked back at my husband and I said, “You know what, Rob. I can’t walk out of this store like this. Grace has taught me too much.” Grace is a young woman who raises awareness for childhood cancer. In fact, while Rob, Nico, Gabriella, Nana, Pop, and I sat in the hospital and waited for days to see if Anthony’s tumor was cancerous, Grace was busy gathering presents to send to Anthony to encourage him to fight this nasty battle.

At this moment, I thought, “What would Grace do?” Rob and I went over to Customer Service and asked to speak to the manager. The young man pointed to a rough around the edges kind of guy and we approached him. I said, “You know September is childhood cancer awareness month, and you guys should really raise money for that cause because there are children in our own community fighting for their lives against cancer.” He dismissed me with a “you’re right” attitude that assured me he would do nothing.

A lovely woman approached me and pointed out a manager who was in charge of many of the fundraising efforts. She seemed ever so compassionate as we talked about Anthony’s experience and our experience with other children. I thought about sweet Luke Dunn and how my heart aches regularly for him. No, he isn’t my child. But my child was in those circumstances, and my heart aches real pain for his parents.

The manager encouraged me to write a letter so I went home and wrote the most heart wrenching, jaw dropping, inspiring letter I could put to paper. I was proud of that letter. In my mind, nothing would stop that local store from raising money for childhood cancer awareness soon, or at the least, next year. I received a generic, we can’t please everyone response and I was angry. I was so angry. But I put it aside for the time being.

Today I learned Michael Buble’s dear son Noah was diagnose with cancer. I immediately felt sick to my stomach. While most people felt a desperate relief that maybe we would finally bring a voice to childhood cancer awareness, I looked at this couple as two regular human being who were just told their child had cancer. And my heart literally ached for them.

Childhood cancer has no boundaries. It knows no prejudices. It hits the most compassionate people, the kindest children, even the most famous children. And while we spend the month of October turning everything pink, raising money for breast cancer, being mindful of what this month means, where the hell are all these people in September. I’m sorry for my anger, but how the hell can you sit here and raise awareness for breast cancer in such a fierce way, without raising awareness for childhood cancer with the same drive?

I’m not sure about you, but my son means everything to me. In fact, I would die a million times over to save any of the children in my life. Wouldn’t you? So why is it so God damn hard for us to recognize childhood cancer awareness month and go gold in September? It shouldn’t take a celebrity or a famous face to make us all aware that children are dying from this terrible disease. I have friends of mine who fight every day to make you all realize that only 4% of research goes to childhood cancer. FOUR PERCENT! Do you realize how little that is?!

I’m not asking for money or funds, I’m asking for your voice. Raise your voice for childhood cancer awareness just as your raise your voice for breast cancer awareness. The fact is that seven children are dying of cancer each day and twenty four are diagnosed. Do you want your children to be part of that statistic? Of course not. None of us can imagine we are part of that battle until we are thrown into the mix. Just as Michael Buble has it all in life, sometimes having it all is having your children safe and healthy.

Think of all the children that can’t afford to get the best treatment, the strongest medication, the most knowledgeable doctors. Think of them and feel sorry for children fighting this disease. Think of them and spread awareness throughout each day of your life. Think of them and go gold for childhood cancer. Because someday, our children deserve for us to fight so hard that they have a damn chance.

Carpe Diem

My Dad taught me a lot throughout the years. One of the most important lessons he taught me was to live in the moment. I can remember vividly the moment he told me he had been diagnosed with cancer. I was driving home from work- a two minute drive at the time-when my phone rang halfway between my job and home. I answered the phone with excitement, as I always did when my Dad called, but immediately felt a vibe as if something was wrong. There weren’t many times when my Dad would call me when he was serious in his tone or in our conversation. This was one of those rare moments.
“Well I went to the doctor today because your mother was worried about my health with us leaving for Florida,” he said. Immediately I KNEW that he was about to tell me he was having heart issues again. After all, the sweating, difficulty breathing, excessive weight gain, were so symptomatic of where we were two years prior when he underwent a quadruple bypass. “I was diagnosed with cancer,” he said. I immediately pulled into the old Jeep Wrangler dealership on 34 as I couldn’t tell if I was going to pass out, throw up, or just have a complete mental breakdown. The elephant that jumped on my chest at that moment completely kept me from being able to take a breath. I hid my emotions to my Dad. “Ok so what, you’re strong, you’re positive, we’ll get through this. You’re a Dalton!” I was so confident in my positive way of thinking that his next words hit me like a freight train. “My cancer isn’t curable, but it is slow moving,” he said.
I don’t remember much of our conversation. What I remember next is pulling up to the house saying to myself “how the HELL am I going to keep it together when I see Rob with the kids here. There is no way I can walk into that house without having a complete break down.” Luckily, as I stepped through the door, my phone rang and I looked down to see it was my Uncle Turkey. Rob knew by the look on my face that something was terribly wrong, but I was able to sneak away from the kids and talk to my uncle exactly when I needed him. It’s funny how every since that moment, he calls me every time I really need it. That time was really tough for me. It was a time where I was at a cross road and really unsure of how we would all get through this when I knew one of us wouldn’t get through it alive. My relationship with my Dad was so incredibly strong that I literally didn’t know what the upcoming years would hold for us as a family.
I’m glad I can now say how grateful I am for that journey that started years ago with a heart wrenching phone call from my dear old Dad. I learned so much since then. Most importantly for me, I chose to live in the moment and cherish every single moment that we had together. That made all the difference as I said goodbye to the man who not only brought me into this world and molded me into who I am today, but the guy who in my adult years had become such a great friend to me that I couldn’t imagine my life without him. What made it even more difficult was that I watched him and my son, in such a short time, develop such an amazing relationship that my heart ached to imagine Anthony living without his Pop. The situation was sad. It was so very sad. And here we were living it with smiles on our faces because when Mike Dalton was around, sad was the last emotion anyone could feel.
It’s in these thoughts that I am grateful for my actions the past few years. I knew that time was limited. It seemed like each passing holiday, each birthday, each Father’s Day I couldn’t work hard enough to give him the best gift. Ultimately, I always left myself kicking the past version of me in the butt as I felt the need to top what I had done the year before. But I can honestly say, I lived each year as if it was his last. This is what I am so grateful for. It took a lot of planning, but Rob and I decided that we would talk to my Mom about planning a surprise weekend for my Dad to see his cousins if they were up to taking the trip. I have a similar relationships to my cousins as he did with his growing up. Knowing how important that is to me and how dear to my heart they all were, we embarked of a journey to surprise my Dad with a visit from his NJ cousins. For those of you who know my Dad, you can imagine how difficult a task it is to surprise him.
We hit many bumps in the road and had to reschedule, but in the end, we made it happen. I can honestly say that, to this point, there is no action of mine that I feel more grateful for than following through with this action. Life is crazy for all of us. I remember many times saying to myself, to my Mom, to Rob, let’s just reschedule to another time. But we didn’t. And before we knew it, here were my Dad’s cousins walking up the front walkway getting ready for the surprise of a lifetime. To this day my Mom and their friends talk about how completely surprised he was with what was actually going on that weekend.
But now I sit and wonder whether it was my Dad who gained from this relationship or whether it was myself and my family. From the moment they all walked in, Alice and Jim, Rich and Cherie, Marcia and Joe, meeting them for the first time as an adult, there was no feeling in our heart besides this is family and this is love. It was as if they had been in our lives from the beginning. Our love for them runs deep. I lost my Dad in January, but luckily for my family, we lived in the moment and reunited with his family the spring preceding his death.
Today my Dad’s family stopped by to see us on their way back to NJ. I realized how much I love these people. How much I missed the ones I didn’t see. I realized how grateful I was that everything fell into place for all of us. I realized how happy I was for that time we spent together last May. I remember being tired from all the efforts, but energized from the feeling of accomplishment and pride. Today, I was reminded that while I no longer have my Dad, I do have so many people that were a part of him to keep his memory alive. And nothing makes me happier than watching my son benefit from these efforts.
All of us hear people saying “Life is too short!” I feel like so many people walk around saying “Live in the moment” or “Seize the Day!” But how many of us actually do that? I know I don’t always jump at the opportunity to make things happen. But there was this one time not too long ago, that I did. That one time that I put everything else aside to just live in the moment made all the difference in my life. That time when I said “Hey, life is too short to wait until tomorrow,” made me realize how painstakingly true that statement is. I thank God each day that I don’t live with the regret of waiting until next time. Because my lesson in this situation certainly was that there is no next time. And seizing the day not only made a difference in the life of the man I was trying to please, it made a difference in the life of my entire family. For that, and the fact that this most recent visit got me writing again, I am forever grateful to my New Jersey family!

To the Mom who sacrificed it all…

She brought me into this world. It wasn’t what she expected, but with the help of my dear Grandma Hale, my Mom told my Dad the child they had briefly discussed having without having come to a definitive agreement was already on her way. I now understand her fears of being an older mother, but can assure you they were all proven to simply be the fear of the unknown. 
My Mom gave me a beautiful childhood. She helped me with my homework each night, made sure I succeeded in school, never missed a school event or sports activity, sat on PTA boards and was a Brownie Mom for the Girl Scouts. My Mom cared for me with patience, she surrounded me with loving and compassionate people, she encouraged my relationships with other people in my family, even if they made her feel second best. My Mom sacrificed so much during my upbringing to make sure I had everything I needed, wanted, and so much more. My Mom brought me into this world and she made sure every day since was better than the last. 

Unfortunately, I didn’t always appreciate her and all she did for me. As with most teenage regret, I spent my high school years hating every decision she made for me. Instead of appreciating the direction she was pointing me in for my life, I resented her for going against what I wanted in the moment. Instead of understanding that the no’s often meant she was protecting me, the maybe’s often meant she would look into it to assure her only daughter would be safe, I criticized her for anything other than yes dear. But I don’t regret my regrets. What I mean by that is that I’m thankful that I was wrong. I’m thankful that I learned what a wonderful Mom I really had. I’m blessed that, although it often made her life difficult she stood by her no’s and she followed through with her maybe’s. 

Now I’m someone’s Mom. I appreciate all she taught me when it comes to being a mother to my son. I am grateful for all the important life lessons and values she instilled in me. I understand from the bottom of my heart all the love and concern that went into each no. I understand what a struggle it was to follow through but what an act of love it was to be consistent.

I see my Mom, now as a grandmother, and I appreciate her in a whole new way. She loves my stepchildren as her own. She supports them in ways one wouldn’t expect. She never misses an opportunity to be cheering for them in the sports stands or beaming with pride at a school event. She holds a place in her heart equal to the space she has allotted for my son, and we can’t ask anything more than that. She is a Nana who loves her grandson unconditionally. She is one who is there for every single glorious moment in his life and who runs to our side for every battle we have faced. As a grandmother, my Mom is even more patient and kind and loving than she was as my mother. She tells my son he is the greatest thing that happened to her and I believe that. Instead of saying “hey but I’m your daughter,” I appreciate her for putting forth so much of herself to make my son happy. I am beyond grateful that he has a relationship with his grandmother very similar to I did as a child. I’m even more grateful that I learned from my mother to encourage and appreciate the loving relationships that exist in Anthony’s life. I firmly believe that as he grows these relationships will make his life easier and happier and for that I’m proud to be just like my Mom.

But while she has supported me through every moment of my life, loved me unconditionally (even through my faults), and provided me with a happy, prosperous, and enriching life, it is the love she had for my father that has set her above the rest, in my eyes, as a Mother. She endured our endless bouts of busting her chops, she passed the phone without hesitation when she knew I always called to talk to him, she simply shook her head when she knew I went behind her back to get a yes out of him, she quietly sat in he background as I proudly proclaimed to be a daddy’s girl and that I loved my Dad the most. She calmly and collectively skated through all those years with a smile on her face and the ability to let everything roll off her shoulders. 

Then suddenly, when my Dad got sick, I saw my Mom in a whole new light. And I think that her undying and incredibly deep and inspirational love she had for my father was the greatest act of love she has shown me as my Mother. She kept him here until he no longer could fight. Whether she did it for him, or for herself, or for me, doesn’t matter. But the fact that my son got two wonderful years with him is an amazing gift that will always be my favorite thing in life. She sacrificed her earlier years for me and her later years for my father. It is no small act of love to stand by your wedding vows, “through thick and through thin, in sickness and in health,” and to provide your child with a loving home occupied by both of their parents. Especially with all the stress of today’s life, it takes a lot of commitment, effort, and sometimes a fight from within to do that. But my Mom showed me day in and day out, through her actions, that she loved me because she loved my Dad first. 

To top it all off, these past few months, she showed me that her loving qualities will continue to emerge as our relationship grows closer through the years. I had lost my best friend. I told her this. And in the wake of all the madness, she calmly, quietly, and easily slipped into my heart as the perfect replacement to the void I was feeling with the loss of my Dad. And she smiled contently when I referred to her as the “replacement best friend.” She put aside her own grief and heart break to make sure my heart was ok and that I could heal the way I would need to, just like the perfect Mom would naturally do.

Mom, thank you for literally giving me everything you could in life. A day doesn’t go by that I don’t recognize what you do and appreciate you for it. For loving me, my kids, my friends, my family, and mostly my Dad, I will always be indebted to you. I love you Mom. To the moon and back.

I can’t look…

I will never forget that moment. Anthony was being prepped for surgery and Doctor DiLuna came in to talk to us one last time to make sure we understood everything that was about to happen. He had someone alongside him who was pushing a computer. He asked if we wanted to see the imaging of the tumor. I instantly felt nauseous and angry. ABSOLUTELY NOT! I did NOT want to see this demon that was inside my son’s head and causing my family to be in this situation at this current time. So NO! I do NOT want to see the tumor. But Rob did. It’s the strength he carries when it comes to the medical situations that I wish so badly I could have…especially for Anthony.
I understand why Rob wanted to see, but I couldn’t. At least I couldn’t see while it was still in his head. Because my thoughts instantly went to what if this thing I’m about to look at is about to kill my son. For that reason alone, I just couldn’t do it. As Doctor DiLuna walked away, a million emotions ran through my head. I looked at Rob and said do you think I should have looked at it. He simply shook his head and said not if you don’t feel you want to. And there is was. The mix of emotions we had dealt with on this journey that left me feeling so troubled. I want to but I don’t want to. I should but I can’t. I need to but I’m scared.
Nine long hours later, Anthony emerged from the surgical unit with a swollen face and head. Although his head looked so much larger than the last time I saw my son, it was so much lighter without this tumor. The size of a small orange. For a little man like our Anthony, that’s a big pill to swallow. My son was living with a tumor that was the size of an orange. It was causing him incredible headaches. He was such a happy baby but in loud environments he cried so hard he would hold his breath. He vomited for days before doctors could diagnose him and even then they were WRONG.
It wasn’t until the veins were bulging in his forehead and his eyes went crossed from the pressure that we were able to figure out there was a real problem. And there he was. My precious little smiling son now crying with needles hanging from his little arms and an incision in the top of his head that would drain the excess spinal fluid. The crying would stop only because a ventilator would breath for him while he was fully sedated to undergo a more intense MRI and see the problem that we would fix the following day. My dad, the strongest man I have ever known, could barely stand at the sight of him. My stepchildren weeped at his bedside, I’m sure thinking they were coming to say goodbye to their brother. My mother standing strong as she always does…the rock in my madness. Rob’s cousins and aunts running to our side to hold me up and encourage me to keep it together. When I say this whole experience took an Army, it’s not an exaggeration.
So you wonder why this month of May is so important to me…why brain tumor awareness means so much. Despite popular belief, from a past filled with people who will never understand, it is not about standing on a soap box and feeling sorry for us. The strangest part of all of this is that I don’t feel sorry for any of us…not even my son. I feel strong because of this. I feel like this journey has brought us all so much closer, surrounded our son with so much love, filled our lives with incredible people, and humbled us beyond belief. But I do go back to that time. The time where the doctor looked in our eyes and said ten years ago there was no cure for your son’s illness. The time where the doctor looked in our eyes and said five years ago we had a cure but it still had its kinks. And when he looked in our eyes and said now we can do this surgery pretty successfully, however, your son’s tumor is resting against an artery. We need to cut off the blood supply to that artery for me to be able to remove the tumor. It really is a 50/50 shot.
Rob and I fought at that moment. We fought about who would sign the paper that would allow that surgery. We worried that the burden of responsibility should something go wrong would fall on that person who put the pen to the paper. I signed. He signed the paper for the tumor resection. It was a 50/50 deal from his parents. Anthony had a 50/50 shot and we all made it. Thank GOD!
So to the people who love me. To the people who love my husband. To the people who love my son. This month is so important to us. Without raising awareness, I would have lost my precious son that Rob and I worked so hard to bring into this world. As he gets older he makes me more and more aware of how blessed I am to have him. I have, since that day, looked at the image of his tumor. I’m not going to lie about it and act like I’m this incredibly strong woman. The first time I saw it…I couldn’t breath. It took my breath away. But now I look at this image with appreciation. I’m sure it sounds crazy to you. But I appreciate our struggle. Through it, I have found my greatest heroes, I have accomplished things I never thought I could, I have learned so much about love and life, and I have formed myself into a strong and loving woman.

My son was fighting for his life. I didn’t think he would make it. I couldn’t look at his tumor, but that tumor became the image at the front line of our battle. I know you might feel I’m on a soap box for my son’s illness, but what you will never understand is that it is far beyond that and far beyond your small minded way of thinking. I will continually work to find a cure for pediatric brain tumors. I will do this similar to the way that other have done before me that allowed my son to be alive. I have seen way to many precious souls die because of this terrible disease. I won’t take our journey lightly, Anthony WILL make a difference in the life of other brain tumor fighters.

And for those below us who like to justify our greatness as being on a soap box, I will tell you this. Soap box or not, we are making a difference. Spend as much time making an effort as you do talking shit and you will see how wonderful this world can be. God Bless!