Letting Go


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I never fathomed the season of letting go. I have been the “keeper of John” for 2 years and 3 months. God has seen fit to change that prediction from 3-9 months. I saw him off to his first day of school, I observed the first day. There was one meltdown. As is to be expected to happen with frontal lobe brain damage. It was overall a good experience. I sat through 1 full day so far, 6 just for the last hour of the day. There have been some tweaks and he is going to do well.

I witnesses acts of compassion by his teacher that would never happen in a public school. One little boy at the end of the day had just had enough. The teacher addressed his behavior and then decided it was an emotional meltdown. She took the child onto her lap and reassured him that the day was almost over, she addressed the class in their afternoon meeting. She asked questions about what the children had observed and learned. That little boy didn’t leave her lap until he felt ok.

I almost cried at that moment. The compassion exhibited was nothing John would ever experience in public school. I knew God had his hand on my children’s placement in this school. The compassion that a teacher is allowed to exhibit is a rare thing in today’s society.

There were hiccups along the way, but nothing unmanageable.

John has three National Honor Students coming in a day to help him physically and to stay on task. This is a God send, given the state abolished personal aides for specific students through public funding.

But, onward to letting go. I have every shred of John’s medical and testing burned into my brain. I know my child inside and out. I know how to handle every situation. In every setting.

Letting go is hard. Really hard. I know when he needs additional physical therapy. I know when he is not quite right. I know when he has headaches and lethargy. I know when he needs a new leg brace. I know every stat, figure, percentage, and number you could possibly ask me. I have been his keeper of information physically for 2 years and 3 months.

Letting go of being the eyes and ears of that is hard. I know where every bruise, bump, scratch, and owiie comes from. I know how to handle his meltdowns. I have to give all of this up.

It has consumed my identity. I don’t know who I am anymore. I feel like my life is keeping track of the progress of another’s life.

I have had very many successful meetings with his current school. It is an outstanding place for him to be. They are willing to learn from him and be progressive in their offerings to our son. It is a God Send straight from Heaven. It is what i have prayed for all year.

Today I was told, “we wanted your children here, from day one.” “we wanted to educate and help him, and we knew your daughter was a perfect fit, and we dedicated ourselves to wanting your son to land right here.”

Do you know how rare it is for someone to say your wanted? I don’t think I have ever heard that in my life. My children are wanted. God made a way.

I feel the peace of God settling over me, and letting go will be a process. I know this. John is in good hands, I have had all the meetings and observation i need to know this is fact. God is good.

This is the testimony I have for now, Faith

September is Childhood Cancer Awareness Month


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I was the person that wasn’t THAT person. I had two perfect children and life was a bit rough, but do able. I had it all under control, until that day where you see the four children gathering together for strawberry picking. It was a horrific day. But you can read about that here.

What I want to focus on is the fact that I was never THAT parent. And I never planned to be. We all take for granted the fact that our children are supposed to be healthy and ready to meet the world. Their personalities are formed and it is a beautiful thing.

Many will stop reading here. It is a scary place to go. But 2 years and 3 months ago, I was you. Idyllic in my life and parenting. Ever so on the mark with milestones. Growing into potty training and leap frog phonics. I was on course to produce baby smarty pants. They were going to be ahead of the curve and so smart.

Then one day, all that changed. When I saw the picture of the tumor invading my son’s brain space. I said, no wonder he was so clingy. He wanted comfort. No wonder he was so needy, he was hurting. No wonder he seemed to be degrading physically. It was a low moment for me. I could never make up for any of it. No matter what I did.

The next 36 hours were spent awake. Laying in a sleeping child’s bed, with my arms around him. And, His father on the other side. Both of us totally unaware of time. Just trying to say as many goodbyes and prayers as we could while he was still here. Making promises to help him live life to the fullest. We promised the world to this three-year old lying sleeping, with our hands falling over his skin, kissing our favorite spots. Memorizing our favorite details of his body, and the curvature of his face. We knew the next morning he would be wheeled away to surgery. It was a massive surgery with a higher than average chance of death. We knew that.

My mind went from having a child that possibly had cerebral palsy to a child with a brain tumor, just like we had thought. The thought of cancer hadn’t even been discussed at that point.

The 36 hours before surgery were excruciating. Jimmy, Luke, Steve, and I kept present and mostly awake. It was full of discussions of faith and where we stood at that exact moment. I have to say, those were some of the most in-depth discussions I have ever had in my life. My heart was raw and exposed.

Then, he was wheeled away. I had cried my last tear, kissed his head the last time. I had felt the contour or his nose and neck the last time. I had memorized his fingers the last time. I had said goodbye. I knew there was a chance i would never see my child alive again.

Regular people just don’t know what we go through. They try. They help where they can. I just think its something you don’t understand until it happens to you.

And, it might. Here are some of the hard facts. In 2014, 15,780 children were diagnosed with cancer. It is the leading cause of death in children under the age of 18. Our children are more than a stastic. Only 4% of the National Cancer Research Fund for Cancer Research budged per year is alloted to studying childhood cancer. Adult research and trials get the other 96%.

Are you disturbed by this? Can you look at your child and think he or she is worth more than 4%?

Enough for now, Faith

The Day I Gave Up Control


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I have held on to my children like the treasures they are, reluctant to give them up to be molded by strangers. But, especially John John. Hope was easy, I wanted a life for just her outside of cancer land. She was smart, and such a sweet spirit. I knew she could spread her wings and fly. And, she did. She ended up with A honor roll for her first grade year.

John John is another story. First off, Hope’s former school could not accommodate an Independent Education Plan (IEP) for John. This is significant. I won’t get into the technicalities of that. Many of you out there already know what that is all about.

John John going to school is hard for me, because I have always been the eyes and ears on the ground for symptoms of his cancer returning. Even though the last 8 months, the scans have been stable….I was always the one to watch every movement of every limb. I knew when it was time for more physical therapy. I knew when he needed adjustments in his schedule. I know how to handle his meltdowns. I know what frontal lobe brain
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That cheesy “fight song”

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I know, that if you follow my blog, you have all seen my video with “The Fight Song”. At first I was embarrassed that I had put out a video to that particular song. But, as my kids made me play it over and over again, I understand it was both of their songs.

We were at chucky cheese, and the song came on….both of my kids belted it out from the skiball area like it was the gospel. I thought about it and googled the lyrics. You know, its been two years. Things have gone way to fast, I am sure my son has wrecking balls within his brain. The new normal, is always that, new. And, I know he sends big waves that cause people’s hearts to open. I know he has more to say……..He wants to scream his struggle, he wants to reclaim what is his. He has loss, and he has had a hard time adjusting to the brain damage, because he has no control over it. He wants and fights just to be normal. He is a fighter. He is. I have watched, as countless other therapists and drs. Have tried to make him whole again. He has the firemen, and they rally behind him. He wants to prove himself, that he IS GOOD ENOUGH! He doesn’t care, He will fight to the finish on his end. He is not done. At all.

Life went from 3-9 months after surgery to 2 years 3 months! He is fighting and succeeding! And, he could care less what people say. I think I take that way more personally than he does. I DO STILL BELIEVE THOUGH!

I know that God’s hand is on this child’s cancer. I know this. I know it in my heart of hearts. He is like a small boat on the ocean, sending large waves into motion. And, he HAS made a huge impact in many many lives. And, I think EVERYONE believes.

Hope has had to join this Fight Song, and has a huge voice in how this situation has taken away from her life. She is a ROCKSTAR! She has taken the good with the bad and everyone was worried about her as well. She is thriving. I never knew what to expect from her. I thought she would be lost in all of this. I never knew how she would embrace this situation and help her brother thrive. She has been instrumental in normalizing his life.

IT IS HER FIGHT SONG TOO!

She is a warrior too! She has had to take a lot of flack from John John. I admire her ability to maintain a separate identity from the situation. I think she is the strongest person I know. She was lost in the fray for a while, but always showed up with a smile on her face. I have heard her VOICE.

I love my babies and their joint fight to this horrible cancer. It has grown us all up a bit. We have all come to grips with the temporary fight we all live to stay on this earth.

My son may have more stacked against him, but it is not insurmantibale. I know we can beat this long past what these Dr.s have given him for a life expectancy. We will continue to monitor his brain cancer
Love, a Hopeful Mother…….Faith
Clickhttps://youtu.be/5x-ozTxT7_I

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

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