How do I say …?


godsfaith:

I can say with a son on the flipside of that coin, we still feel blessed for the time we get to have him.

Originally posted on Robin Luftig:

I sometimes wish I could change my world.

Going through brain surgery to remove a ginormous tumor—and living a blessed life afterward—gives me a glimpse of the realization that not everyone is as fortunate as I am.

Without a doubt, I thank God every morning before my feet hit the floor for the opportunity to live one more day. I understand what it’s like to see the possible end of my life come into focus. I understand what comes with looking out into the “ever after”.

But God showed me favor.

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The Transition From Trauma To Normal


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As I have muddled through this journey of cancer and trauma in my life, it is only recently occurred to me that I don’t have to operate in trauma mode any more. I have scared friends off with scanxiety, which involves the panic we all experience before they tell us whether or not there’s more cancer and how much more. I have gotten surprised by mri’s in the past and have learned to never try to predict the outcome.

I realize much of this cancer of a child has become my identity. I am lost in real life. I actually read a third of a book today. I am trying to remember life before cancer. I cry as I write this, because it has eaten my life, my faith, my trust in relationships. I am tired and need to just stop.

I need to re-evaluate where I am. I am not in crisis mode any more and I am ok. Everyone is ok. We are stable right now and I have other fish to fry.

John needs an iep, public or private I have to learn to navigate the public assessment so the private schools have it and can accommodate John. I can’t hide from the school monster anymore. It will be good for him I say. But I am afraid he will not be dealt with properly or abused because of his brain damage. We pretty much let it slide here.

But, lets just get real for a moment. The school is going to need a one on one for John John. He needs help even writing. Aside from his behavior issues, he can’t physically hold and write with a pencil for very long. He is going to need verbal testing and a lot of side work on neuromuscular control, which will be provided by occupational therapy. I am remiss at not being an observer of his therapies. I am terribly scared that he will be dealt with incorrectly. Not to mention the 4 inch medical records the district is required to read as per the iep laws. I am having to fight to have him evaluated.

This is a new front for me. Mind wise, emotionally wise, and life wise. I am now not a victim, but an advocate. I have a mission, and that is to get John John the education he deserves. The end.

I am thankfully and painfully waking up to my new reality. This is real life again. I haven’t done this in two years and can’t quite make sense of all that has happened translated into real life mode. I know the dishes need doing, the kids need to at least change their clothes, I need to do laundry, etc. But its the mental part that needs to shift. I am not in crisis mode. I am not in danger. I can live normally without fear. I am having trouble transitioning out of that. I can have relationships I don’t question the loyalty of.

I am struggling about how to live and what I need to change in my thought pattern.

That’s enough for now,

Faith

The Day My Eyes Saw The Heart Of Another


Today I saw a video on my Facebook feed that reminded me of the time I saw a man’s real heart of hearts. I won’t say who it is, but he knows who he is. We were traveling downtown dropping someone off in the evening. This particular part of downtown was not exactly a “good” part of town. As we passed buildings winding toward our destination, I commented on a homeless man we passed. I said something to the effect that it could be any of us sitting on that bench. The driver replied to me, I’m really glad to see he is wearing the coat I gave him. I quietly listened as he explained his story about this homeless man. Every day he drove this route to drop someone off, the man was on the same bench. He thought about it for a long time. The man was always alone, and carried very little. He was old and had grey hair and a shaggy grey beard. The driver said to me, “one day I thought to myself, when I needed help someone helped me. Why should I not help this man in obvious need?” So, he went home and pulled out a warm coat, bought a package of socks, a toothbrush, toothpaste, and a bar of soap. He related the story to me. And, I thought of every person I had not helped that I could have. I told the driver, “why don’t we do something else for him tonight?” The driver said, “like what?” I said well there is a reasonably priced restaurant right across the street. So, the driver pulled into the drive through of the restaurant and ordered a hearty meal. As he pulled up to the window to receive the food, he asked to speak to the manager. He said, “There’s a homeless man sitting right across the street from your restaurant every time I pass by. I want to purchase a gift card and give it to him. I also want to make sure he can use it in your establishment and not be given a hard time or treated poorly. The manager assured us the man would have no problem. We drove around the block in order to get back to the bench where the man sat. I asked if I could give him the meal. The driver said, “of course.” He never said, “be careful” or “if you get scared just come back and get me.” He simply said “yes”. It was in that moment that I saw this drivers heart.

I felt like I had something to say to this homeless man. I walked over to the bench and asked if I could sit down. He had no teeth, but looked me in the eye and said a garbled yes. I told him that someone had purchased dinner for him and I wanted to deliver it to him. He smiled a little. I gave him the dinner and he dove right in. I asked the man what his name was, he obviously had some sort of stroke or medical condition in the past because he had a hard time speaking. He said his name was John. I told John that the person I was with had purchased a gift card to the restaurant across the street. It was enough for two decent meals and a drink. He said thank you. I told him that he mattered. I told him we also made sure that no one would give him a hard time at that restaurant, that he would be treated well and served with no problem. He said thank you. His eyes met mine and I said, God bless you. I will pray for you.

The exchange only took a minute or two. As I got back in the car I looked at the man as we pulled away. A wave of emotion struck me. I choked back a lump in my throat. A simple act of kindness from one human being to another had made that man John matter in this world. Even if for him it was just for a moment.

I told the driver of the brief exchange and told him the man’s name was John and that he was very happy to accept what the driver had given to him. The driver simply said, “good.” “I have been praying for him.”

I have spent a lot of time with the driver of this vehicle over the years, and had never seen this side of him so clearly. We had never really spoken about this subject. The driver simply felt that giving back was the right thing to do.

I suppose the point of all this rambling is, people have helped our family tremendously along the way. Sometimes I get so caught up in what is happening with our situation, I forget that there is a lot of people out there that simply want to help. They expect nothing from us in return. They have hearts that I can clearly see, just like the driver of the vehicle I was in that night. Thank you to anyone who has helped us along the way, or put up with all the drama of the last two years. I say thank you all the time, but I want everyone who has helped us to know that I can see your heart.

Much love, Faith

The Wait During Surgery


In the history of this blog, I have never told people about what occurred in that waiting room for almost 10 hours. It has taken me two years to process that day and be able to talk about it.

We were given a private waiting room. I never broke down once, I did not shed a tear. I simply prayed. All 20 of us, with a few pastors popping in and out prayed. We set a timer for every 15 minutes, when it went off, we prayed. We sang worship songs to pass the time. some people were quiet and contemplative, others engaging in conversation to distract us from the fact that a little boy we all knew and loved had his head open in a room with a surgeon, who’s hands I prayed over before he cut into my sons head, and were in my sons brain. Trying to dissect brain from tissue from the tumor and blood vessels could be clipped out without our son bleeding out on the table.

During discussions the day before with the surgeon, Dr. Storm had said that the biggest risk and obstacle were the amount of blood vessels interwoven into the tumor. It had created its own blood network to feed it, and had tapped into major veins in the brain. It was very risky, we were told he had a 50/50 chance of dying during the surgery.

One of the hardest things I had to do was sign the consent form with all of its listed risks for surgery. There was only one complication that jumped out at me, it was death.

At this point we had been told it was possibly cancer, and after the surgery and the preliminary pathology was back, we would know that day if it was benign or malignant. In other words, something that would not kill him as opposed to something that didn’t have the potential to kill.

In that room different people involuntarily cried and we all just kind of tried to stay together and lift each other. We knew it was going to be a long surgery and we had hours to go. None of us ate. Water was passed around, along with coffee.

The nurse was updating us hourly as to the progress of the surgery. The first time she said, Dr. Storm is trying to begin removal of a section of tumor. The second hour she came in and said 5% of the tumor has been removed. The third hour, she came in and gave a very generic answer. Things are progressing. And the 4th hour the same generic answer, and the 5th, and the 6th, and the 7th, and the 8th.

We all knew this could not be good. We knew that there was a reason the nurses updates were so vague. After 8 hours, I took to pacing the floors and staring into the windows on the double doors to the operating room hallway where they transported the patients back to the pediatric intensive care unit to see if I could see my son being wheeled by. I paced. I paced. Several people joined me. We were all waiting for the Dr. to show up and tell us the news of what had happened with our son.

At some point we went back into the private waiting room and I sat down. Now, I needed to be practical in this moment. When the Dr. came in, I needed to have my questions answered. I knew in the emotion of the moment there was no way I would remember what to ask. So I bounced off everyone in the room and created a list of questions to ask Dr. Storm.

We paced a little while longer and sat back down again. Then Dr. Storm walked into the room.

He said John was alive. Clapping all over the room ensued. The Dr. said, not so fast and shook his head. There was more.

John lost more blood than his body held and almost died several times during the surgery. He said at that point that our son really only had a 20% chance of coming out of that surgery alive. And there was a lot of bleeding, we needed to be prepared. I pounded out my questions and found out every spec of information I wanted. I asked about the pathology of the tumor. He shook his head and dropped his chin. He said the tumor was definitely malignant and the final pathology report would take a month to know exactly what kind of cancer he had.

The room was silent. No one said a word. there were silent tears. there were hugs. there were promises that they would be there for us.

If you would like to hear the sermon after one of the pastors present, please click here.

It was hard to walk out of that waiting room and into the new nightmare of cancer. I will never forget that those hours of waiting were my last hours of peace to this day.

That day changed me. I saw what community should look like. what Church should look like.

That day broke me in so many ways. It is life shattering and emotionally shattering and spiritually shattering.

I don’t think I can be unbroken from that day.

I have never looked at life the same.

Enough for now, Faith

Two Years Ago Today John Underwent Surgery To Remove His Brain Tumor


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He was such a beautiful young child, but something was off from almost the beginning. I could sensce his neediness and yet never satisfy it….

Two years ago today, my son underwent an 8 hour surgery that saved his life, for now.

I would like to tell you what that day was like….We knew he had a brain tumor on memorial day 1013, that day it was officially diagnosed after a trip to the emergency room.

I insisted on an imaging of his head, because we already figured out it was a brain tumor. After a bit of conversation, the Dr. Liner at the CHOP Voorhees ER Agreed. We went back for the cat scan. It only took a few minutes. I was sitting in my sons room when I saw the Dr. looking at some images, as soon as she walked away coming towards us, I saw the screen. I knew instantly that what I was looking at was Johns tumor. IT WAS MASSIVE.

Dr. Liner came to grab me from the room with John and pulled me and my best friend from the room to talk. I already knew what it was and instantly felt out of control. So I did what anyone else would do and asked the Dr. to pray with us.

I first called my husband, who was at a softball tournament at mercer county park. My daughter was with a dear friend that I trust implicitly. I call her the child whisperer. John was taken by ambulance to CHOP main in Philly….. We got there and I made a flurry of phone calls. Jimmy came right away, as did Luke, and Mark a pastor who is a wonderful friend.

We stayed awake together for 36 hours. While we waited for scans and determinations from the surgeon as to what he could do as far as removing the tumor. At this point our son was on heavy pain killers to help with the agony of hydrocephalus associated with his tumor. essentially his brain tumor was so big it was blocking the fluid from coming out of his skull.

We waited through the scans, and waited for the surgeon to say he could try to take the tumor out. It was 10 inches by 10 inches, over half the size of John’s head. It was massive. The surgeon went through the MRI with me and showed me how intricate the blood vessels were that was feeding this tumor. It was scary. He was not entirely optimistic. Dr. Storm said he had a 50/50 chance of surviving the surgery, IF he was able to get it out at all. He said He might open up his skull and it might be too extensive to remove…….after that second day in the PICU, we were delt this scary blow. Our baby, our Son, our little child was slated for surgery the next morning.

We spent the night completely awake. I must have cried for hours over his sleeping body. I must have bargained with God a hundred times. I must say that I involuntarily cried at points throughout the night with the fear that this would be the last time I would hold my son in my arms. That the next morning I could be kissing a dead child’s head. It was such a hard night. We had been up for 36 hours straight. It was so hard to describe my Faith In God at that point, that I began to dig really deep and find that part of me that believes that God is Good and that He means for the best. I think I was so in shock that I nothing else to draw from.

The next morning, he was taken from us. We cried as his bed left the room. We did not know if we would ever see him alive again. It was life shattering. I will never forget the image burned into my mind of my son going down the hall, and the impression on my memory of trying to say to myself, you have said as many goodbyes as you could.

I want to leave you here, I think its important to let you into the world of what uncertainty looks like and let you experience the magnitude of emotions that we all felt that day. It was horrific. And, traumatic. And, life impacting……

That’s what I have to share for now…..Faith

If I Just Lay Here, Would you Lay Here With Me And Forget


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Can we just lay in bed hand in hand and pretend to be friends? Can we just go back to the months after our daughter was born? Where it seemed the dream was unfolding for both of us. We had expectations of a new beginning and a life of children and helping each other through life. Can we just remember the times of our son up till age three? Before things shifted into this horrible abyss? Can we go back to big bbq’s and friends and softball games? Can we go back to that place we were where life had not battered us to death? Can we forget about the loss of our 2nd son at 21 weeks gestation. I never want to hear the name Baby James again. Cant we just hold hands and lay here and forget. Can we forget cancer for just a while. Can we share the carefree joy of a baby learning to turn over. Can we delight in the stupidest of things, like putting together a playhouse for our kids and cherishing a bountiful garden. Can we forget how barren our lives have become.

The loss and the tragedy that has surrounded us for the last three years runs deep in our souls, it burns a path that has created a harshness between us and a division of understanding. I just want to lay together and dream like we used to. To forget. cancer. still birth. brain damage. lack of income. the struggle to live. I just want to dream with you again.

I see us on opposite sides of a river. One filled with faith in healing, judgment, and criticism. I wish I could span that gap and be friends again. Its lonely over here. No one really understands the gravity of what I have totally taken over with my sons medical care. Its lonely here. there aren’t many survivors.

I feel like a causality of war. I don’t know what to do next and I certainly don’t know how to handle now. I feel a failure. I feel sad and lonely. Im sorry life gave us this crap. I just want to lay with you and forget all of the problems, to dream together. To laugh together, its been so long. I really just want to learn how to live under pressure. I want to feel that the doom isn’t overpowering the life we live. Im sad. Im lonely. I want back what we had.

Your wife, Faith

For The Mighty

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The brain tumor in my three year old baby, 2 years ago……

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This is what is left today of his tumor free brain…..But, we had no idea what the deficits he would experience were, or how extensive the brain damage was. We spent 6 weeks in the Children’s Hospital after the brain surgery. John had to learn how to walk again, how to eat, how to swallow, how to grip things with his significantly weakened right hand. A custom brace was made for his right leg. It was a LONG six weeks. Loving friends purchased a special stroller for us to replace his wheel chair. They purchased a therapy bike to strengthen his leg muscles that was modified to hold his feet in place while he rode the bike. This was critical for him to be able to walk alone again. He was a hot mess when we went home. He had a 4 in by 4 in plate in his skull and was wobbling around with a walker. I had to walk behind him 10 hours a day to allow him to practice but not fall and injure his skull.

After being home for a few weeks, my best friend told me…John has 3-9 months to live. Its time to start living. Lets take the kids to a nature reserve and enjoy the end of summer a bit. We walked and looked at the animals and all of the rescued creatures. John used his special stroller and binoculars to enjoy the views.

After our excursion with the children, we decided to try out a restaurant that served local healthy food.

This would be a game changer for me, where I found my voice and advocated for my sons rights as a battle weary cancer survivor.

We were seated by a waitress and made orders for ourselves and our children. John was excited to be with his friends after two months of lonesome absence of friends. He was a bit louder than the other kids, but not by much. The manager repeatedly came to our table and asked if everything was ok. Repeatedly. Over and over. I became painfully aware of the manager’s greater message. Your child doesn’t fit in here, are you finished already??

I slowly absorbed it. I asked my best friend if she would start my car and carry my son to his seat. I was going to pay the bill and would be out in a few minutes.

I then walked toward the register, credit card in hand. The manager was running the register. I said to her, “did my son make you uncomfortable?” “you asked us if everything was ok about 7 times in the last hour?” She replies with a smile everything was fine.

But, I wasn’t going to let her off that easy.

I said, “my son had a 7 inch by 7 inch tumor and a 3 in by 3 in tumor removed from his brain 8 weeks ago.” “he has brain damage and malignant cancer” “He only has 3-9 months to live”

Her breath caught in her throat and I began to see a welling of tears in her eyes.

I said, “today we were trying to make happy memories, this is our first time out of the house in two months.” “you made us uncomfortable and we felt judged by your hovering over our table asking if everything was ok, while gazing at my son.”

I signed the bill and walked away with a bitter taste in my mouth. That lady stuck in my brain from there on out. I was jaded by her being put off by my warrior. My son who almost died on the operating table. My son who’s cancer there was no treatment for because it is so rare. My son who fought hard to be physically half the kid he used to be. My little HERO, John.

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When A Pebble Is Dropped Into A Pond It Makes A Ripple, What Happens When Hundreds Of People Drop Their Pebbles All At Once? Part 2


If you would love to see John John’s new Fire Department Room, just click right here. Princess Hopes room is on the same page. If you find yourself moved for what this foundation did for our family, please donate. A little bit can go a long way. I would love nothing more than for you to invest in this foundation because of what they did for this boy.

John Marandola-37

Much gratefulness and love!

Faith

When A Pebble Is Dropped Into A Pond It Makes A Ripple, What Happens When Hundreds Of People Drop Their Pebbles All At Once? Part 1

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I am going to tell you a story of hundreds of people throwing their pebble into the ponds of our lives all at once. The outer rings of each ripple intersecting with the next, creating a beautiful tapestry of interwoven love and support. This will be the longest post I ever write, so hold on folks….Its about to get real in here.

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This handmade Leather Fire Helmet shield was made by Brent Barlo, who had brain surgery at age 9 and is a retired volunteer firefighter. He felt connected to John’s struggles because of his own. This shield has John’s official induction date into Evesham’s Fire Rescue and embodies his company’s number. 22. I have never met Brent, and probably never will. But, his hours of love poured into this fire shield embody John John’s journey with the Evesham Fire Rescue. I think I will ask them to replace his leather on his Evesham Helmet with this one.

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This Is the Fireman’s Prayer Donated by the Willingboro Township Station on Sunset Rd that closed. It is found in almost every Firefighters home, I’m told.

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This is one of two butterflies to remember a dear friends daughter Alexa, who spent her time on this world suffering with children just like John. Her legacy will live on in this house. Her story is close to my heart, as is her mother….You can read Alexa’s story here. If you read her story you will understand what those of us in the cancer world are really up against. It is a fast, scary, no promises world. But, we find ways to rise above. Alexa’s battle did not die with her, she lives on….and especially in my home.

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This Glass Axe along with a ton of pins, hats, shirts and patches came from Key Largo and Palm County Fl. The axe head is signed with all of the local Fire Chief’s signatures. It was an amazing addition to John John’s Firehouse. As I told John, every name is another person who loves him and cares that he is happy and successful.

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Here we have The Corner Kingdom Project <~~~ Click there. Her name is Tiffany Gagnon, amazing interior designer! She is the mastermind behind what you see in all of the photos. The creative drive that inspired companies to create beds and dreamscapes for my children to live in. She chooses the finest detail to focus on and makes her rooms come together in a magical fashion. My children certainly think so, and so do I. I am amazed at how she can bring diversity into harmony with its surroundings with small touches of thought, inspiration, and detail. She is a master at what she endeavors and sets out to accomplish. I would strongly urge you to follow her projects and spread the word that she can change lives and has. Her foundation is noteworthy and I would be proud to donate to any endeavor she takes on, because I know her WHOLE heart is in it.

Her sidekick is Fireman Jim Heisler with the Evesham Fire Rescue here in our home area. He was a contractor before he became Fireman Jim, and was the hands and feet of this project on so many levels. He was hands on the entire time. From start to finish. This man is a prodigy. There is nothing I can say to him except, thank you Jim.

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When I read this, I cried. Because they really did make dreams come true in our house. Hands down. Tears. I’m still crying just reading the note.

Joe Scialabbo

Joe Scialabbo from Venus Electrical <~~~~~~click here, so this guy….this guy….he is amazing. His claim to fame is his electrical work, and he did an amazing job. But, His youngest son was diagnosed with an inoperable brain tumor 15 years ago. The tumor wrapped around an artery in his brain, so the doctors couldn’t even biopsy it. He is still hanging out in blue on the end. In his early 20’s and he’s not going anywhere anytime soon. His son is what I hope John will be at this age, a walking miracle. I can not imagine my son as a 20 something, but I know after meeting this family, that it is possible.

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The University Of Pennsylvania Basketball team. Pictured here are Darnell Foreman and Greg Louis and (not pictured) Camryn Crocker, in the fire helmet is the infamous Jim Heisler. These wonderful students have adopted John onto the U Penn Basketball team last season. They came to join in the dream room effort. And we thank them for their hard work. They got the dirty demo job, and rocked it!

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This seal and another not pictured here were hand etched by Scott Seal. He is in the Air Force , and decided to put his leather carving talents to use for our son. He carved from leather an Evesham Fire Rescue patch, and painted it by hand. I keep the ribbon he carved with my sons face and his fire dog etched into it, in my wallet. It is a gift that touched some of the deepest parts of my heart. I promise to post a pic of it soon. He captured the likeness of my son so closely, that when I touch it I can feel my son in it. When he gave it to me, I could barely look him in the eye because I knew if I did I would cry. I just keep looking at every detail of these folks hard work and touching them. Thinking of the love that went into creating each it.

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Belfor, 7 Belfor family members signed our photo of John and Hope. They all volunteered long hours and a desire to provide our children with every beautiful furnishing they could. From a custom fire truck bed for John to a princess bed for Hope to sleep in. They looked at detail and did their best to really bring out the magical quality of the rooms. They are extremely dedicated in their endeavors and have a non-profit they work through called “Kots for Kids” can find the generous company here <~~~~click here for amazing home remodel and with big hearts and attention to detail. These folks gave us their cell phone numbers in case anything needed touching up or tightening, and gave a general offer for us to call them for anything. They would love to help. Thank You For Everything You Did For Us!

Here is where I really get to say what I NEED to say. There were so many more people, hundreds involved in some level on this project for my son and daughter.

I imagine the pebble in the pond that started this community of support with Fireman Kevin. You can read about that pebble here. The ripples almost 18 months later are astounding and life changing. Kevin was the genesis of a relationship with a community of unconditional love and support. Our family has a safety net of love. Especially John. If things should become difficult for him, or things should progress or change, we know for a fact that none of us would be alone. But, back to that pebble. When you drop a pebble into a pond, the concentric circles ripple toward the shore until the water becomes still again. The pebble sits under the water, ever-present and solid as it was when it was dropped. This is Fireman Kevin. The genesis. An act of love and generosity with no expectation of return.

The people who did this remodel, Jim, Tiffany, Belfor, Joe, Brent, Scott, Kevin, and many hundreds of volunteers and donors. Its like hundreds of people dropping pebbles into our pond of life. They are rippling everywhere and intersecting, and creating a beautiful tapestry of the safety net that our family has in people willing to love and give with no expectation of return.

You are blessed if you can take without forgetting and give without remembering.

I am blessed, because I will never for a moment fail to bring to mind the countless faces that are in the photos of this project. Or how it made me feel. I feel as though my heart has been poured into and I can do this for a while longer again. The path we are on is hard, and unforgiving. We endure day in and day out. We try to not inflict more pain on each other than we already experience. But, This filled our hearts again.

We were in a low spot when this remodel went down. I can say for a fact, that these folks changed everything about our perspective. We are humbled and grateful. We remind our children everyday that so many people love them, they couldn’t count if they tried.

Jim and Tiffany gave John a homework assignment when the remodel was finished. It was to count the number of patches sent in (and are still coming in) from all over the us, and world. We made it to 200 before I began to cry. It is overwhelming to know that many people cared enough to take a moment of their day to say, “hey, we are here for you too. Even if it’s just in a piece of fabric, we are here”.

All I can say is Thank You to every last person involved.

With an overflowing heart, and many tears,

Faith

P.S. here is a link to the photos of the build process if you are interested. there are over 200, so these are the folks that made real magic happen.

 

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