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.

 

The Conflict Between Belief And Action


P.S. I got such mixed feedback from this point, I feel the need to not defend myself, but let my experience stand. I have gotten nasty text messages and phone calls of apology. my stance has not changed. I took the post down, and have chosen to put it back up because this is my personal blog. my feelings. my views. my experiences. WHY WOULD I CENSOR THAT BASED ON OTHERS OPINIONS????????

 

I have been given a lot of lip service in my day. People saying they will pray for me asking for the next installment in what has become the soap opera of my life. Saying if I need anything call. Then I ask for help with something and of course they can’t help. Folks saying they will do anything to help and then after you are in the trenches for months, they disappear. It makes you realize how absorbed people are into their own lives and agendas. I find it a terrible way to live. A year ago I had a large group of peers to pull from and most are gone.

yes, were in the throes of a long haul problem. John’s cancer is not a short acting time bomb. It is something we have had to live with and grow accustomed to. It has changed our habits, our lives, and our perspectives. I for one, have decided to deeply question my beliefs in a merciful God. Yeah, I guess that makes me an outcast in my former company. But, I don’t go to church anymore or prescribe to some unwritten code of rules dictated by others.

I see people’s hearts. I know who cares by their actions. I judge by actions. Not by gossip, or what I think their motives are, or by accusation… But by actions. That is how love is shown. I have been very unloved (action wise) by a faction of people who know who they are. Honestly, I know they don’t care. I have had to have conversations with my daughter explaining the difference between saying you care and actually caring…..those are hard conversations. I am not going to get into specifics here.

What I really have to say is that Christianity and Action is not lining up for me. I have walked away from the “church”, not God. I can no longer stand to be a facade to people who present a great front with no action. It is against what I believe to be true Christian relationship.

I will continue with my very limited handful of friends, limited to personal conversation via an undisclosed route,  but trusted few for mentorship and advice. The Christians who do love and help me are still ever present in my life and are where I draw a great amt of strength from. They also know who they are.

What I have seen, is that the greater non-Christian population stand with us in a massive amount of support that our “brothers and sisters” severely lack. I am astounded. I always thought it would be the other way around.

Faith

When your in the in between

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John Marandola-37

There is this place in cancer land that happens between MRIs, it’s the in between. Nothing is real, every possible symptom is the enemy. Can John John’s leg be “therapied” into cooperating again? Is his loss of bladder control because of a met in the spine or developmental? Is he ok? or is he not? The pound that he lost, was it all muscle? Is that what is causing this loss of control of his leg?

As a parent, we just don’t know the answer to these questions. These are the things that run through my head on a daily basis. These are the things I ask myself as I choose underwear or a pull up for my son to wear today. It’s very conflicting…I don’t know how to think anymore or how to act. I work myself into a state of worry only to go to an MRI and find out the cancer in his brain hasn’t spread any further. But, there’s no peace from this information because the Dr. presents the possibility of a tumor in his spine.

I watch my son drag his foot, and I have flashbacks about how this all began. His right foot began to turn inward toward his left foot. That was the first symptom of brain cancer. It was an observation that changed our lives.

I can not help but watch him drag his leg in horror, not knowing what is causing it.

I haven’t been able to pen my thoughts for a while now, because im so confused. I decided to take a mental break from cancer for a while, and try to reset my mind about the whole thing.

here’s what I came up with. John is still here, no one thought he would be. Yes, he is dragging his leg and wetting his pants. There is a possibility that things are worse than they appear. But, I’m not going to live in that reality right now. The reality I am going to choose to live in is, that John is a child struggling in a very real way right now with frontal lobe brain damage. That is more of a challenge than you may realize.

He is hard to keep emotionally stable. He melts down over the simplest things. My greatest victory this week was when I put green beans on his plate and the whole dinner did not dissolve into crying and thrashing about on the floor.

That is more real than the possibility of a tumor in his spine. That is to be categorized as a worry, but not put on the front burner of my mind. I have resolved to focus more on his day-to-day life and helping him to control his emotions.

I feel strongly that cancer will kill him eventually, I have prepared my other children for this. My husband and I are on opposite ends of this debate. He swears The Lord is going to heal my son. I have doubts.

We are in the in between, where nothing defines reality more than your thoughts. We try to be kind to each other and deal with the problems at hand. But, the in between is a very vast landscape that includes doubts and fears.

John is happy, Hope is happy. We’re going to stay right there while we’re in the in between.

With love,

Faith

Soul Splitting

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It has been a long while since I have posted. Christmas has passed, John John had his next mri, we have ripped our hair out, and been up and down at alternating moments. Oh, where to start? Let me start before Christmas.

We had carbon monoxide in our house right before Christmas. (we didn’t know it was in the house) We all experienced different issues. John began to have severe headaches, vomiting, nausea, and quit eating very much. Steve and I felt dizzy and tired. We were lucky we didn’t die because of the problem.

So, the focus is always John…what is he experiencing that would be red flags on the brain tumor list. We had three solid checks. Nausea, vomiting, and headache. Classic brain tumor symptoms. We simply were beside ourselves. Steve praying and rebuking it. Me taking stock trying to decide when the right time to call the dr. was. Always the doubter in the “miracles” that God is going to bestow on us. I say this not in mockery, but in reality. we have a child who had stage 3 brain cancer, it has since spread to stage 4. Next comes all the complications from stage 4 and what inevitably comes after.

We knew the mri was coming. We waited it out through Christmas, determined to get another Christmas under our belt before any potential bad news. We worried constantly about the nausea, the weight loss, the vomiting….not knowing what was causing it. Steve brushed it off most of the times. We had a few “come to Jesus” meetings over the course of the Christmas break about what could be happening. I let him know where I was, he let me know where he was. It was very scary. We all were hanging on and waiting for the dreaded mri.

I squirreled myself away in my office for weeks with the kids. We watched movies, read books, played games, and just hung out. Steve went to every church he could. I quit going to church. I couldn’t handle the questions, the repetitive story of our reality when I was so worried, the answers of, were praying for you. Normally this is a welcomed response. But, I wrestled with God. In every way a person could. to my tired mind and heart, prayer is always happening…I am always talking to God, but I don’t know to what end lately. I have fasted, I have prayed, I have pleaded, I have begged, I have strayed….all with the same results. It has split my soul, so to speak. I am fractured and my identity blurred.

I don’t know any longer what I am to hope for. Life or death? I don’t even know which is greater. Earlier this month I saw my son dying…with all the red flag symptoms of brain cancer….I resigned myself to his dying….is that so wrong? I certainly couldn’t share it with anyone. I’m afraid of judgement. Would it be so bad for my son to forbear pain and suffering to die quickly? Simply to be put into the arms of God? Or should I wish more time for myself to grow him up in this god forsaken world. Only to worry if he is going to make the right choices and end up with a long life in the arms of God…..

I know my thought pattern is fractured. I am well aware of that. I haven’t blogged in so long because I am struggling with many of my views.

so, anyway…the MRI…it was horrible. we had a nurse that couldn’t land an iv into a 5 mile wide pond. After the second stick, John’s frontal lobe brain damage kicked in and he lost control and couldn’t regain it. The nurses wouldn’t listen and stuck him twice more, he blew both iv’s because he has frontal lobe brain damage and it causes a serious lack of impulse control. if you stick a 5-year-old 4 times with a needle and tell him he is supposed to be ok with it, it’s already a lie. You stick a 5-year-old with frontal lobe brain damage with a needle 4 times and he will tell you he is going to kill you and try to rip off your shirt, kick you, scratch you, and head butt you. I got lots of looks, like….your the mom of this horrid kid. smh….yep, I am….

f.f. spare you the rest of the horrid details. The mri was very close to the last one three months ago. results wise. not much growth. the kicker is…john is dragging his right foot and has lost his urinary control. the dr says this could be a metastasis in the spine causing this.

Again we have half an answer and have to live on the edge of worry. I just don’t have any more to say for now. Perhaps I will post some photos in the next few days.

full of contradictions,

faith

Cancer And Christmas

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There is a bittersweet feel to Christmas this year…I’m not very confident about the next mri coming up on Jan 8th. I am haunted by it actually…I find it very hard to put my feelings into words right now.

I feel a mix of trepidation and fear….this is the great not knowing…

we wait…..we wait…..

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with love,

Faith

To Gather My Thoughts

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There has been so much going on this Christmas Season that I am finding myself in a whirlwind of activity and emotion. Let me see if I can break this down a bit and give you a window into our world.

Thanksgiving was wonderful…we had two. One with just family and one with a few of the UPenn basketball players. It was a sweet week filled with lots of conversation and food. John was the master of activities of course and the center of attention. The fellowship was unparalleled. We had Darnell, Greg, Jamal, and Mike over from UPenn. We played pool, ate, talked about every topic known to man and enjoyed each other’s company. In January when UPenn plays Villanova, John will be inducted into the UPenn basketball team as an honorary team member. So, be on the look out for that.

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With Christmas upon us, the usual activity has ensued. Shopping, parties, Christmas light looking, cookie delivering, and the usual holiday cheer. This year we have something more going on. Fireman Jim nominated John John for a dream bedroom makeover. We are preparing for the Corner Kingdom Project to give John’s room a dream room makeover. They have amazing plans (no spoilers) to create a fire truck kingdom for John to retreat to when the world is more than he can bear, and to just enjoy on a daily basis. They are going to tear apart our playroom and create a bedroom for John John and Hope to enjoy, with elements to accommodate his special needs and make his life easier to live. The fireman will be doing most of the work, and the UPenn basketball team will be helping with demo.

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We have been struggling a bit as well. John is struggling with some issues that have raised red flags on our radar. He is experiencing headaches, vomiting, night terrors lasting for more than an hour where we can’t wake him up (this is terrifying), and extreme fear. He won’t go to the bathroom alone, he won’t sleep in his own bed for the whole night, and He is just in general very fearful of being alone.  We are not sure why all of these things are showing up at once, but it begs the question. Is the cancer spreading? We don’t know. We worry, we debate, we quietly think about these things when they happen while keeping our grown up faces on.

Personally, my heart is breaking. I see my child transforming into a fearful, clingy, tearful little boy. It is mixed with perfectly normal afternoons here and there. He is eating less lately. My mom radar sends up red flags there too. I can’t bring myself to move the next mri up any sooner than the first week of January. I just want Christmas. Call me selfish, what does it matter if there is a new tumor or not. I want an unblemished holiday with my whole family. An untouched memory of Joy. I want surprises and surprised faces as they open gifts and we go to church to celebrate Christ’s Birth. Then we can deal with whatever this is.

As I shop, make cookies with the kiddos, and create memories…there is a weary part of me that says with cynicism, this could be it Faith. This could be the last one. And yet, it is a beautiful commotion of love and giving. Just as it should be.

John can not tolerate a lot of the homeopathic treatments we have been using in the last couple of weeks. Its nothing harsh, just supplements and tinctures. But, the vomiting is stopping him from taking them. It is a huge source or sorrow and frustration for my husband. He is intent that these remedies are the answer. And, I don’t disagree…I just wish I had a window into my sons brain to know what is going on.

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So, it boils down to a lesson in Joy. Joy often comes mixed with sorrow. Expectation mixed with trepidation. Fear mixed with hope. It is a conflicted world we live in and there is Joy to be had. We grab for that. We hang on to it. There is hope to be had. We grab and hold on to that. We are intent on enjoying this Christmas and dealing with the MRI the 8th of Jan. We should know the results the same day. I sure hope I find time to connect with you in between.

Filled with HOPE,

Faith

 

Today Is My Favorite Day

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today

Today I talked to Mike Lintulahti, assistant coach, University of Pennsylvania Basketball Team. It was a funny conversation in a way. I needed something today, and he needed something today. We filled each other’s needs.

I was feeling despair and longing for a purpose. He was having a down day.

I answered the phone and was very happy to hear from him. We invited the U Penn Basketball team over for Thanksgiving. I had been waiting for a call. I am usually upbeat even when I am struggling. So, I answered happily. The conversation that ensued was epic!

I was reminded of John John’s purpose on this earth. “Every day is a day to celebrate life. There are no promises of tomorrow”. And it struck me how inviting the team over for Thanksgiving was a sign that I still live in this mentality.

I know John’s cancer is in hiatus, and we are so grateful to God for Him giving us the holidays with our son again. Every day is not guaranteed. Tomorrow is borrowed. But, to really LIVE every day is a purposeful way of thinking. We must remember to embrace celebration and BLOW IT UP! Which is why I invited the team to dinner. When we celebrate, it should be a CELEBRATION! Life is good! We are gifted with every breath. We should seek to celebrate and share our joy.

Joy is a gift from God. Joy is what most of us seek through this holiday season, and I have it! I am joyous that cancer is not killing my son today. I am joyous that I have a beautiful family and home! I am joyous that I have people to invite into our world to celebrate joy with!

Were going to have a fantastic time! Thanksgiving is going to be wonderful! And, moreover, I was asked to share John’s message with the U Penn Basketball team. His message of Hope, Joy, Living in the moment, Loving every day as it comes…..I think it is an honor to speak into the young lives of the basketball team. And to serve them as well.

So, back to the phone call. I encouraged Mike and He reminded me of my purpose. I am here to spread John’s message of hope to the people around me. He is LIVING with brain cancer. Living………Not dying….But living as a vibrant, beautiful, happy, fun-loving, hard-working boy.

Mike walked away encouraged, and I encouraged as well. Today is my favorite day. This quote hangs on Mike’s office wall. It is true if you choose that it is for every day. I just thought I’d share.

With Great Love,

Faith

Encouragement For The Journey

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I saw a request last week out there in facebook land for people to send emails to Aiden, the little boy battling cancer featured with John John in this news clip last year. He is terminal and fighting out his last precious days on this earth.

I yearn so much to give an open heart to other parents in my situation. I know the support given to me are like gold nuggets….I stick them in my pocket and pull them out when I need encouragement for this hard journey.

So, I wrote a short email to Aiden. I told him he is a fireFIGHTER. And that they know how to put out life’s fires. I put a small note at the end for him to tell his mother that my heart was with her. I don’t usually do this, but I put my phone number at the end. I don’t know why, I just wanted her to know she could reach out if she needed or wanted to.

I know there are times when I NEED to reach out. When I have hit my breaking point and all is not well. I just need to be heard. I prayed for this mother and her children. I have been for a year off and on again.

I received a phone call last night. It was Aiden’s aunt. His mothers sister in law. They were fielding all of the communication for the family. She expressed how much Aiden’s mother appreciated that email I sent. That it struck her as especially touching and she wanted to say thank you to me, but her son was dying.

My heart is breaking in a million ways for this family. I know what it is to have a child with cancer. I also know what it is to lose a child. What was expressed to me, was I encouraged this family. I gave them a little gold nugget to put in their pocket for later or whenever they need it.

Go drop a pebble into someone’s pond….see what happens…

With Sorrowful Love,

Faith

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