Funny Funny God


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So, my day was legitimately defunct today. But, we serve a funny funny God. Sometimes I think my tears of sorrow will never stop only to find myself laughing. You know, I am passionate about feelings. I don’t think people who have never been to the abyss can truly say they know the top. When your at the bottom, the only direction you can look is up, right?

So, in my memories today with my face truly sucked face first into facebook, there was the stark reminder of a day 5 years ago that ended in death and agony. I am a person of paradoxes, I’m from the south after all. I was 22 weeks pregnant (call it nesting) with my husbands friend in the back yard jackhammering fence post holders into the ground for my kids soon to be dream back yard. I’m kinda like bob villa sometimes. Anywhoo…..we came to a point where I had to leave and go to my ob appointment. So, I warned my husbands friend to not let him do anything bob villa-ish and I was off. (my husband and tools DO NOT MIX. I carry the chainsaw in this family).

I knew my baby was a boy, we were going to name him James. I really didn’t think anything of my appointment. It was a routine thing. I knew James was going to be handicapped. I had already found a doctor the previous week to examine him after he was born to see what we could do to help him. His right thigh bone was half the size of his left and he had no hip socket. But, baby #5 I was cool as a cucumber, me and my hydraulic jackhammer.

So, I got to the appointment and the baby was dead. But, that’s not what I want to talk about. I want to talk about the sorrow I experienced today when I saw that memory. I know, I kinda threw you there. Just stick with me.

Today was the kind of pity party you throw when you’re already in a rotten mood. The kids were a hot mess this morning. No one wanted breakfast. The bus matron caught me and made me talk, pre-coffee. My husband woke up in a very normal complaining way. I went back to bed to facebook surf until he left. Great way to start the day. Eh. Then I opened up my memories. James. The photo of the fence. Terry hugging me. Dr. Mama telling me he was dead. The hospital bed. The lady asking me if I wanted to hold him. But, Dr. Mama told me they had to take him out in a “destructive process” so I could possibly have future children. So, the lady asking me if I wanted to hold him left me a sobbing mess. It was all of the memories at once.

I instantly remember Terry’s face. That hug felt like my mom that day. There are just some things that stick out in your memory. I needed that hug like I needed to breathe. The memory made me cry. So, I went back to sleep. I woke up when my husband got home from softball. I grabbed my keys and left.

I was not in a sharing mood. I drove to the school to pick the kids up for John’s last physical therapy apt until summer. I took the kids to I-Hop to eat on the way. I had a kind sweet waiter. Walkie. Yes, my kids called him walkie talkie. That did happen. I sat down and ordered a diet coke and two waters for the kids. Then, as if the convoluted world wasn’t enough of an assault on my day, Rachel Plattens “fight song” came on. My kids errupted, my hands were flying for my camera, and the waiter was approaching to take our order. I’m completely one handing him, “wait, I have to get this photo”. Of course, I have to explain.

There’s this whole undramatic way I tell people my kid has brain cancer but it’s ok because God has that thing….I watch people go through the whole range of emotions and confusion in like 30 seconds…..I kind of feel like I should apologize to them at this point because I am not really feeling it. So, usually I apologize to them and tell them it’s ok and they don’t have to be sorry…just remember God is in control. Just look at my son, he is a miracle right in front of you, made by God himself. It’s ok. Just don’t forget that God writes the stories.

So, as if that wasn’t enough there was a woman eating alone behind me. (I randomly go to restaurants alone to simply have some breathing room). She was totally owning Adele’s “Hello”. So, I looked over my shoulder and told her she was owning it. We struck up a conversation. She was sweet. She asked about my kids owning “fight song”, and in my undramatic way I told her about my son. I told her about my daughter’s sweet heart and donating her hair. I told her that God lives here. I told her God is our God. We ate our food and she left.

Walkie came over and explained to us that our family of three that ate like five (the kids ordered a second meal, every calorie counts!) ‘s meal was paid for by the woman owning Adele’s “Hello”. I broke down into tears and the waiter did too. We cried and hugged.

I thought about how God showed up in my day and wanted desperately to leave Walkie a hefty tip. When I went to the register, he was there. I told him I wanted to talk to the manager. He wouldn’t let me. He wouldn’t even let me leave a tip. I had no cash and wanted to leave him a tip on my credit card. He told me everything was taken care of and I could just be ok with that. OMG….

I walked out of the doors of I HOP and literally ran into a girl wearing a hoodie that said, “just pray”. I stopped her and told her and her boyfriend about what had happened and asked them to please bless someone if they felt lead. They replied “God put us in the right place”.

You just can’t make this stuff up.

Faith

 

 

 

A New Chapter In Life


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When I started writing again almost 3 years ago, I never thought it would be about anything but updates on John John’s diagnosis. I lived, breathed, and died to cancer. My life crumbled around my feet like a sad trail of ritz crackers behind a toddler…… I am so happy to say that I was wrong.

I have spent the last several months investing  back into God’s vision for my life and where I have been called to serve. A lot of my creative brainpower has been spent in redefining my understanding of the reality of my circumstance. My son is deemed “terminal”, he’s not dying anytime soon. My role as caretaker is decreased, he is in school full time. He is more normal than I ever imagined he would be, even in my wildest dreams. I no longer surrender to panic at the onset of a weird symptom. I have come to take changes in stride and adjust accordingly.

I feel freer, if that’s a real word. I have sat and thought where I, as an adult, want to sew my seeds of love. My children is a given, my housekeeping duties are minimal and a given, but my passion for giving back is HUGE right now. I look back at every moment people have taken out of their personal lives to enter into my personal hell, and I am thankful. The people who sat for days at a time. Just to be there, so we weren’t alone. The way that God weeded out the helpers in promise only. The way God revealed where our spiritual home really existed in a lasting way. The way God divided out the people driven by the wrong intentions……It has left me with the here and now.

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I have a few precious memories of acts of love that will forever stand out to me. They will not mean a thing to you unless you were the person who gave me the gift of love. 36 hours awake, tears awash with ramblings of faith in an almighty merciful God. $75 dollars worth of parking fees. Shoes to pace concrete floors in with no back pain. Hours at the gym digesting the world’s problems. Calls late into the night reminding me to breathe. Trips to onco appointments and MRI’s. A ride across the bridge into Philly because I am terrified to drive. The dinner date the night before an MRI even if my company is distant and I’m not really hungry. The words, “let us carry you.” The prayers on a time clock for 9 hours straight. Drive by prayer that opened up conversations. Sermons on healing and why? Click to hear that sermon. Wrestling with how to pray without knowing the answer. Dancing in a prayer and worship on the beach with a kid who can’t walk by himself. Being part of a basketball team. Finding a dream as a fireman to inspire healing. Pressing the siren for the first time and feeling like you control SOMETHING in your life. Having a firehouse as a playground. Smiling at a firehouse of your very own. Crying tears of joy seeing your child happy in a dream fulfilled……Having every accomplishment I have ever achieved dwarfed by the sheer will of a small child’s drive to win a battle he does not even understand.

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When I say I want to give back, I am trying to thank you for all I have learned in the last several years. I have learned humility in the face of adversity. I have learned to say yes to help. I have learned to celebrate the small victories in a HUGE way. I have learned to say thank you to the very smallest gifts. I have seen hearts opened and wounds healed.

This place I now stand is what I could have never dreamed of. It is normal again. Homework and baths are issues. Choices of clothing leave me laughing at my children’s sense of style. It is all how I imagined parenthood to be. I feel like I have a different child when we leave the hair salon. Target dollar isle always wins. I buy cheese sticks in bulk. I promise my child new soccer cleats once the season begins.

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I don’t watch him sleep and cry over his peaceful body anymore. I kiss him goodnight exhausted of the busy day of activity. It’s just a good place to be. I discipline him for his arrogant assumption that he is always correct because he says he is. It is a good place to be. I am a parent. Of a normal kid. I am living the life I thought cancer robbed me of. And it makes me so happy to get angry over stupid things. I am free to just be a normal mom. The occasional interruption to normal is fine. An MRI here or Onco appt there. It is all relative. I will revel in the mundane and smile at how normal everything really is.

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Thanks for all the gifts….each and every one of you…..you know who you are…..

All of my heart, Faith

 

An Intense Struggle Every January


I went to bed feeling quite accomplished last night. I woke up and felt immediately like the biggest yutz on the planet. This time of year is so weird for me. I find more problems with scattered thoughts and emotions….its a litter of a traumatized history. Constantly thinking back to what I might have  been doing this day 14 years ago. How I was about to get back my life. How the things that happened to us play out over the years. It’s P.T.S.D. cropping up like mad. It’s in the way a baby at church looks at me with her sweet blue eyes, or a photo that pops up on my timeline, subconsciously reminding me of what this week 14 years ago brought about. It is what the locusts have stolen from me. It invades my dreams and leaves me awake at 3 am praying my way to my morning alarm….my intent is to be focused and productive. I find myself incapable. Its an intense struggle.

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Evidence number 02-00414. The last moments where he smiled, slept, and God only knows what else. My heart bleeds into tears during church…I just can not help it. I don’t even know where it comes from. I try hard to be steady and hide my roller coaster. It always comes out in short comings and tears. Someday, it would just be nice if someone would join me in my tears and not kill me for my shortcomings. Not likes it magically becomes fixed the 14th. Its this weird process of transition from trauma to normal. It takes a lot to go from 1 to 2. Normal isn’t even normal even now. I have a kid with cancer. As much as I trust God, I still flash back to my first sons funeral. noah 040Touching cold plastic pipes surrounded with plastic bags, to keep the fluid in his corpse…..it kinda struck me as surreal. My tear dripped onto Noah’s face, and his makeup dripped from his cheek. I do not think anything can replace that private “viewing” when all I wanted to do was scoop him up into my arms and give him one last kiss………But instead, i watched what I thought was his face drip into a facade of fakeness………I gently stepped away from him understanding he was just a shell of what i wanted to remember.

At the end of the funeral, i threw every last memento out of my son’s casket. Where were these people when I needed help caring for him? NOWHERE. And yet, they showed up in droves for his funeral.

I will never forget sitting there, barely able to catch breath. Blowing through box after box of Kleenex not able to contain my sobs. I was loud and unsettling, i’m sure. My grief so deep. It penetrated every bone in my body. I was so grieved by my son’s death that it changed my being. It changed my very constitution. I will never forget that unforgiving line of fake sorry sayers. Where were they when community mattered to prevent this kind of tragedy? Uh, nowhere.

There was the whole “going through the D.a.’s evidence box” that landed on my doorstep after the man plead guilty to 1st deg murder to avoid the death penalty. He was a capitol offender. He had previously harmed my son, and escalated to intentional murder. He never aired a grievance to my knowledge. Never asked for help or said he needed a break. I never knew it was him watching my son.

I can count on my hands three people who where there when it mattered the most. And, one of them wasn’t really FOR me. the end. Welcome to my annual Jan.

Welcome to the bottomless pit,

Faith

Sometimes, God Says Yes


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So, first off….Great news! John John’s MRI, although eventful was stable from the last. NO NEW CANCER IN THE BRAIN OR SPINE! Thank You Lord! The recent new symptoms are likely due to a new developmental milestone being met and the brain damage manifesting itself in new or different ways. That is OK. We can get him hooked up with the right therapists to overcome these problems.

Now, I really want to talk about something I have come to intimately understand. It is a simple passage from the bible that I have struggled with for years without even understanding it.

Proverbs 13:12 ESV

12 Hope deferred makes the heart sick,
    but a desire fulfilled is a tree of life.

I have been afraid for so long to believe in this hope everyone speaks of. My struggle is, my hope is placed in The Lord. Not in an outcome. This is both right and wrong for various reasons. Why it is wrong for me, is simple. If I do not hope for a miracle, simply pray for one….God never shows up in His full glory. Don’t get me wrong, I have been praying for a miracle from day 1. Its not the  same as placing my Hope in God’s hands. In not placing my hope in God’s hands for an outcome, I avoid God’s power all together.

All the ladies in my Fri prayer group know how I struggle to know how to pray for John John’s brain cancer. I prayed expecting full healing for a long time. Then unexpectedly, his brain cancer spread. It broke my hope. Let me be more succinct, I let circumstance dictate my state of hope. And, thus the struggle of the heart began. I would pray for a miracle, but in a sorrowful begging way that held no hope. Panic would overtake me when I saw things that were not normal happening. I would begin to beg for a positive outcome, but bury him in my mind.

If you do not place your hope for an outcome in God’s hands and let Him decide how it is to be dealt with, you set yourself up for the enemy to swoop in and kill, steal, and destroy.

Prayer is a funny thing. It can become a mind game of sorts. If I pray for a miracle and don’t get one, was my faith not deep enough? If I pray for healing and don’t get an all clear report, is John John healed? If I place my hope in a miracle and he dies, was I in denial the whole time? I have seen varying examples of each of these circumstances.

Look, God is NOT Santa Clause…..If you just believe in the magic. Uh No.

There is a difference between placing an expectation on God and submitting your hope to His mercy. It is not something I have ever heard a preacher or teacher explain to me. I know that hope deferred for so long made my heart sick, because hope is to be placed gently into the hands of The Trusted One. Understanding that He knows what He has in store for me. It is not to be quantified or predicted by man. He already showed me that was not truth. If it was, John would have been dead for possibly 2 years by now. No, that’s not how God wants us to think. We can hear the predictions, grieve the loss, and place the hope in God’s trusted hands. And, in that pray healing, miracles, and tears. Invest Hope in life and God’s plan for our hope.

As this season of my life has gone from bitterness into walking through the doors I prayed for God to open, I see changes occurring. In me.

I act in faith, bring my son for anointing, prayer from the elders. I sometimes sob through my hope. Hope does not always look like flowers and butterflies. Sometimes it comes through tears of fighting with yourself. Sometimes, God says yes. I used to always say, sometimes God says no. It was a rebuttal for those who told me to pray in Faith that God would answer my prayers. But, entering into this different season of my life. I can respectfully say, God can say yes and no. And, it does not have to be one or the other as a finality. That horrific day eating lunch with my family 19 months ago, listening to John John’s Oncologist tell me the cancer had spread….tears streaming down my face in front of my family. They all knew who had called. Steve’s head pressed hard against mine in an effort to hear the Dr’s words so he could find a reason they weren’t correct.

We have spent so much time fighting each other over God’s plan, I think we forgot we are not in control of it. I am going to walk differently now.

Sometimes, God says yes. And yesterday, He did.

Merry Christmas,

Faith

You Tell Me I Am So Strong


Once upon a time, in 1995 I was enrolled in an elite High School on my way to being a Dr. Against all the discouragement of my mother that this was an unattainable position. Against all the odds of having an abusive, ugly, horrific early childhood. I was there, a freshman trying to make the grade and perform. I could absorb information and formulate it into test scores nearly perfect. I was quiet and shy. I never was really a social person. Bullying, abuse, and timidity had held me back. I had read books that college people still debate about today. I had an pre-education in upper-education. I was a walking encyclopedia of information and ability to perform.

I am 34, I envy your letters behind your name and how you rose above. I can barely keep my head above water anymore as far as learning comes. I think I doubt myself greatly. I get excited, but never had the experience of perseverance in anything but survival. Survival. That is deep. I am experienced in survival. Not educated traditionally with numbers of hours, or jobs, or other impressive stats and experience.

My resume includes leaving home at 15, graduating 5th in my class after skipping my last semester in H.S., Marrying my high school sweet heart after he impregnated two other women without my knowing, him doing drugs and walking out on me pregnant and our first child (to do drugs and have threesomes), dropping out of upper-education, falling on my face, asking for help from the wrong people, (including “Christians”) murder of a child, losing my other child in probate court??, Facing the man who brutally murdered my son while watching porn, in court, Recounting how I would never know how to be a real person again with any type of confidence, followed by a wonderful man I loved dying in a car accident, followed by running away to New York. Sure, I was able to accomplish things and career moves along the way. But, things were always shaky. How’s my resume so far????? Shall I get into the today and now? I think my past speaks for itself.

I judge myself incapable of being normal. I embody the confidence, yet not the ability to do what I used to. I am smart and intelligent. I just don’t think I know how to navigate crap anymore. I simply have too much real life stuff behind me to not see things for what they are. I call it as I see it. That doesn’t work in real life. People are too busy being fake or putting up a front. I can not stand that.

Oh, God, I pray……..make me understand who and what I am today. Give me the patience to endure and come out of circumstances wiser, more informed, and practical, than I am today. Strong words…..Strong history…..anticipatory nature of my present.

So my title, Faith Moon, Caldwell, Marandola, P.O.M.C., Momcologist, Professional Emphatic, Professional Grief Processor, Professional Anticipator of Disaster..?m

Wise as a serpent, Innocent as a dove

I can not take you further down my rabbit trail,

Faith

 

 

It’s Christmas!!!! So, Here We Are Again…


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This week was such an up and a down. The kids had their school Christmas play, it was a smash hit! I can not wait to get the videos uploaded to youtube! John was nothing less than a show stealer, even though he was just in the singing portions of the show. He showed up, larger than life! I videoed the singing portions and I laughed so hard I actually snorted. I don’t think I can edit that out. It has been a week of reconnecting with friends we consider family and some problems.

Fireman Kevin showed up even on last minute notice to see the kids Christmas play. Christine was home on a break from exams and came to see her little man too! I was so grateful! I have been very disjointed this year. We haven’t been by the firehouse much. Life just kinda got real busy once John started school. Its intense trying to keep up his schedule of therapy, drs apts, school work, volunteering at the school, and working with the non-profit. It has me burning the candle at both ends. But, I think it leaves me personally in a better place.

Im happier and more relaxed. The last 18 months have taught me how to get out of trauma mode and back into a relaxed life with balanced priorities. Not easy with a child who has been diagnosed with terminal brain cancer. But, its been a good good good year.

So, last year right before Christmas we had a scare. We came to found out it was carbon monoxide poisoning, not cancer like we thought. This year, as luck would have it, we have another scare.

I’m not going into too much detail on purpose. I want to focus on the CELEBRATION aspect of the holidays. Anticipation building for the children. Remembering others and how important the relationships are to us. I want to focus in on family and friends.

Tonight was special.

Please remember us Christmas Eve. We will be getting a phone call that tells us if the cancer has spread or not. We will not be disclosing this to anyone until after Christmas. The brain/spine MRI is on the 23rd. Next wed. It was ordered in an expedited fashion. So, were praying again for one more miracle. Just a crumb from Jesus’ crust of bread. Just a touch to the hem of his robe. Just what the dog’s lick off the floor. That is all it takes to turn Faith into Action. So, you can pray for a crumb to fall on our floor.

We are happy and celebrating. I am not really telling John unless he asks that he is having an MRI. I know he knows he is struggling a bit physically, but I will not hamper his determination. I want for him what he wants more than his little heart can ever understand. My Hope is placed in God.

Thats as much as I can say for now,

Faith