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!

 

 

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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…

 

 

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.