Peekabutter and Skeety Bites

A long time ago, someone told me to keep a journal of all the great sayings and cute words my son spewed out over the years. Life flies by so fast that sometimes we forget to stop and enjoy the moment. Unfortunately, I am guilty of this more than I would like to admit. But, as someone who was taught to own your mistakes, I continually try to work on my faults. Because of my upbringing, I have no problem admitting them.

Even as I write this, I have yet to enter all the “Anthony sayings” into his journal of life. But, in some ways, I guess this serves as a virtual baby book for when he gets older.

My son says things to me on a daily basis that send my head in a spin. “Where did you get that!?!” is my usual response. His common go-to response is “Grandpa.” Poor Grandpa. Although he gets credit for every cute saying that comes out of Anthony’s mouth, he also gets blame for all the bad ones.

And, although I know Anthony is full of it most of the time, I know the “Grandpa sayings” that leave Grandpa in the doghouse. (Sorry Gramp! We still love you!) But, even with the bad sayings he picks up, I couldn’t be happier that my son is surrounded by people who teach him things.

The last week has been particularly tough on us. Anthony has faced some major setbacks in his treatment that I’m just not ready to talk about. Although I have promised to be an open book, I don’t like to divulge information until I know all the details. And, for that reason, I protect our little man.

But, even through the testing, which has been prompted by setbacks, Anthony’s milestones have been brought to light. And, even though I’m proud of him no matter what! I am particularly proud to see the obstacles he has overcome in the past year. He has gone from an asymmetrical gait to a symmetrical one! To the average Joe, that is nothing. But, to us! We are ecstatic!!

And, although I take such great pride in the postivie aspect of Anthony’s journey. And, I make every effort to focus on the positive. The truth is that I cry a lot in solidarity. While once in a blue moon these tears are ones of pain and suffering, most times I cry tears of joy. Tears of appreciation. Tears of pride.

As a family, we have been through hell and back in the past couple of years. But, it’s not the hell that brings me to tears. It’s the fierce support, that has driven us through the hell, that makes me want to cry.

It’s the friends who have become family. It’s the strangers who have given us support. It’s the amazing team that has surrounded our son. Without a wink of hesitation. It’s these people that know nothing about you, until they know it all. It’s these people who were willing to lift you up when they knew nothing, and who love you now that they know it all. It’s being blessed with these types of people that makes me look up to the sky, with tears in my eyes, and say “Thank you God for my blessings!”

I guess this next statement can be an unfortunate one. Although my son has a lot of blood relatives, they aren’t people we have chosen to be a part of his life. He has undergone a tragic and complicated battle, and we, as a family, have chosen to surround him with positive people. But, in the wonder and worry of our decisions, God has given us affirmation that we have made the right decision.

And, this is where my tears come from. My son has the most supportive and dedicated family, who he will always know he can count on. And, although there are few blood relatives, the majority of them are family we have chosen for him. He is surrounded by family that wants to be a part of his life. And, while we have chosen some, and some have chosen us, the greatest gift is that Anthony has chosen the majority of his family. They are people that he loves deeply and that he knows love him deeply.

Last week, we were talking about his love of peekabutter and his dislike of skeety bites. Peekabutter is best paired with grape jelly, but, at Nana’s house, he has come to love it with bread and bananas. Making memories of late nights in PJs, as the sun goes down, on the beach, Anthony was suffering from many Skeety Bites that took up a lot of his attention.

On Friday, my son went off with his Mimi and Grandpa Pete. I knew he was in for a weekend of wonderful memories. And, while I’m happy that I was kept in the loop through pictures, I am grateful that Anthony shares these special experiences solely with the people he has come to know as his family.

Tonight, as we sat down to dinner, Anthony said “hey Mom what are we having??” I responded, “BLTs and PB&J.” He looked at his sandwich and said, “Oh Wow! I love Peanut Butter and Jelly.”

Peanut Butter. Wow! I look at my little boy, who suddenly seemed so old to me. And, I said to myself…while he was off making memories with an important part of his family, my little boy grew by leaps and bounds.

I put him to bed and took out his baby book. “Peakabutter and Skeety Bites” made their way into the notes, and I made a note that was dated:

8/27/2017-I’m so proud of you Anthony Michael. Although I missed you immensely this weekend, I can’t put into the words the joy I have for you when I think of the great time you had! Mimi and Grandpa Pete told me you slept in your own bed, you stood up to a bully, and you overcome some “meltdown” moments. I am so happy that you had a great time! And, I’m even happier that you had that great time without me. Your Mimi and Grandpa Pete are a deserving part of your “growing you up” team. They will teach you things that Mom and Dad can’t teach you. And, this weekend, you learned something. Because “Peekabutter” is now “Peanut Butter.” But, most of all, you taught us something through what you learned. Adapt to your surroundings. Enjoy those who enjoy you. Stand up for your friends. And, never, ever, let your need of your safe zone keep you from going on a late night adventure in the dark.

This weekend you faced some challenges that you weren’t used to, but you knew you were surrounded by people who would teach you the way. You stepped out of your comfort zone, but you were smart enough to find comfort in those you know love you as much as we do. For this, we are proud. But, more than anything, we are happy that you allowed yourself to have the type of adventure and fun that you deserve to enjoy as a little boy!

I love you, little man. And, I will never forget these moments that have caused you to grow through the love of those around you.

Although peekabutter and skeety bites will be forever burned in my brain, I’m glad you have taken a few steps forward in life, while I wasn’t looking. I couldn’t be more thankful for the team we have been blessed with to teach you all about mosquito bites and peanut butter. I love you Anthony Michael!

 

 

Advertisements

Could You Imagine?

Logic will get you from A to B. Imagination will get you EVERYWHERE.” ~Albert Einstein

People often say to us, “I can’t imagine…”

It’s funny. Not funny that they are trying to sympathize with us by acknowledging the difficulty of our situation. They’re really sweet for that. But, it’s funny because, I can’t imagine either. And, I’m not sure if I couldn’t imagine because my brain is playing some crazy trick on me or if it is that I’m just too tired to remember, but these last few months I’ve walked through life in a complete out of body experience.

Then, suddenly. Out of nowhere, really. And like a freaking wall filled with heavy bricks that just came tumbling down on top of me, making it hard to breath. Suffocating me. It hit me. The light went on. The wheels of my brain started to turn again.

Laying there in bed. Another night of not sleeping. Searching for things to do to keep me awake…I curled up next to him and began to look for an answer to how I’ve been feeling. Because these days it seems like I just feel nothing. As I curled up and studied the complex, yet simple, boy that was right in front of my eyes…the gentle, yet tough, paradox that constantly consumed my mind. I was taken. Mesmerized by the beauty of his little lips. Admiring the smooth, yet rosy complexion in his cheeks. Marveling at how his long eyelashes rested gently under his eyes. In the midst of this moment, I started to think. And where I had once been walking through life emotionless, I was now filled with these emotions that consumed by entire mind, body, and even…my soul.

I thought about that statement we often here. “I can’t imagine…”

Thoughts began to consume my mind, telling mea story I had never heard before. A tale of a life I’ve been living every single day. An existence that represented every single part of me yet was completely unfamiliar.

Until now.

So, over the curve of his nose and through the dimple in his chin, I began to understand a little more about what it’s like living with the boy with the intricate brain. Or…rather I began to imagine. Imagine what it might be like if I could actually be present in those moments. Present. Not on auto-pilot or survival mode. Not gathering up all my strength and holding it together. Present. Because maybe, in the long run, being present might mean being accepting. Or understanding. Or whatever word you find to mean this isn’t all a dream.

And maybe, if I could imagine this, then, someday, I can imagine something more. Something that would make people say “I can’t imagine…” But in the opposite way they had said it before.

So…as the cool breeze from the ocean air rushed over his little coolie. I pulled up the blankets over his chilly little legs and Batman underwear and I began to imagine. And it went something like this…

Imagine being changed. Changed into someone you don’t even recognize. Like seeing someone who looked familiar. Recognizing them from years ago. But noticing that something about them was just completely different. Coming to understand that you really didn’t know them at all, at least not “this” them. The one that changed over the years.

Imagine setting out on the most beautiful summer day. Blue ocean. Clear sky. A bright beaming sun that helped reflect all the beauty that surrounded you. A perfect ship to carry you through the sea. Breathing in the salty ocean air as you relax. A perfect day that nothing could ruin. Nothing except the unexpected storm that hits you out of nowhere. Without warning. Coming through the storm wondering what the hell just happened and where you are. Disoriented from the shock of it all.

Imagine standing back and watching the one thing you were put on this Earth to care for…suffer. Having no control. Not knowing the outcomes. Juggling treatment A and treatment B on the scale, only to find out that there will never be a right answer. They weigh out evenly and now you must choose. There will never be a “this WILL work.” Uncertainty. The unknown. And fearing that unknown more than you have ever feared anything in your life. No rhyme. No reason. No justice for the one person who deserves to have all the answers at his fingertips.

Imagine the guilt. The guilt of making new decisions. Wondering how they will affect his outcome. The guilt of self care. You’ll feel guilty to sleep. Guilty to shower. Guilty to eat. Locking yourself in the bathroom just to take a minute to breath. Then guilt. As the tiny knuckles rap on the door that is always open to him. And as he says “Mommy, why did you lock it?” The tears. The tears from the guilt that says because I needed a break! But the guilt that keeps you from saying anything at all. Except, maybe, “I don’t know. I don’t know why I locked it.”

Imagine driving miles. Hours. Listening to the same question over and over and over. Every thirty seconds. “Mommy, what are you doing?” I’m doing the same thing I was doing a few seconds ago…I’m driving! Or hearing someone say “Hi Mommy.” “Hi Daddy.” what seems like 40,000 times from here to wherever your destination may be. You wouldn’t dare lose patience. You wouldn’t dare ignore the request or respond to the statement. You would respond. Each time with patience and a calmness in your voice that echoes “why don’t you ask again?” Followed by the same statement. Or the same answer.

Over and over and over and over.

Over and over as many times as it took to let him know he’s loved. Keeping cool because you know the minute you lose your patience it’ll all come swinging down on you. Like an axe about to chop a piece of wood. Because just when you let yourself be some sort of normal, that storm hits again. Out of nowhere. Without warning. And it leaves you with enough guilt to remind you that it owns you. It stalks you. Waiting. Creeping. Ready to strike again. Just when you began to live again.

Imagine that.

Imagine all of that.

And all of these feelings. Or should I say…happenings going on inside your head. Constantly. Day after day. Night after night. Moment after moment. Trying so hard to stay positive and to live for the joy of what you are experiencing NOW, instead of worrying about the tragedy of what could be the future. Worrying…thinking…what if.

What if! What if? WHAT IF?!

I guess if I imagined what it was like. This would all be a part of it.

And, as the years go on. I’m sure there will be more. More obstacles we have to face. More storms we’ll have to survive. More ships that will sail. More maybes and maybe not’s. More should I’s and why did I’s. More what ifs.

So, for now. To those who care enough to try to imagine….we say this:

There are other things we imagine. Things that we sometimes can’t imagine. But, things that we hope for. That we dream of.

We imagine a day where we can walk into a room without looking someone straight in the eyes and not seeing them. At all. Until later when we’re embarrassed at how rude we might have been. Consumed by the thoughts in our head. A day when we can lighten the load we carry on our chest. The garbage that fills our head. A day that we can breathe. Maybe even relax a little.

I imagine a day without pacing and checking and listening and checking again. An entire day filled with happy moments and happy moments only. No worry. No guilt. No what ifs. And maybe a little bit a sleep at the end. In the present. No nightmares of the past. No dreams about the future. Just. Right. Now.

A better day. Just one better day.

But until that day may come, we wait. Not knowing what to say to each other. Not quite understanding how the other feels or how they are coping. Or not coping, for that matter. Not knowing how to help. Not knowing how to accept. Not knowing how to be. Not knowing…well…

Not knowing anything. I guess that’s what it really comes down to at the end doesn’t it. Not knowing anything. Yet desperately wanting to know something. ANY THING.

So, until then. Until that day comes, we pray. We raise awareness. We fund research. We throw in our everything to hope that it can find something. Anything to help.

Until that day, we share our story so that others know they are not alone. So that parents can find comfort and doctors can find answers and patients can find an end to their suffering.

Until that day, we find hope. Hope in the “knowing nothings” of the past that turned into “knowing somethings” of the future and ended with “knowing EVERYTHING” today to find a cure.

Until then, I’ll fight for that day. And, no matter how hard it may be. Even if it kills me. I’ll keep fighting.

For him.

I’ll fight for him so someday he can say “look at me!” So at one point he can say, one day they knew nothing. But, that didn’t stop me. I was strong. And I fought ONE more time. And because of that one more time, they knew something.

I’ll fight so my son can look back and say “my hardship made a difference.” So he knows that it was not wasted.

So he can say “I fell victim to a demon that attacked my brain one too many times. But, I always got up. I always fought. I was always brave and strong and filled with faith and hope. And…you know what, it worked.”

And I look forward to the day I can look back at his struggle and respond..

There was never anything “normal” about you Anthony. In fact, from the moment I saw you smile, I knew you were different. And…with each battle you overcame, I knew you were extraordinary. And, all my overwhelming desires for you to be normal suddenly went away. And were replaced with pride. A different sense of pride.

Some days I couldn’t believe it myself and some days I lost hope. But, someday…

We’ll sit there together. Sit there looking back. Sit there and think…

Wow!

That’s your story.

Imagine that…

 

 

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!