It’s Just Wanting To Be Normal

OK, so there have been a few changes lately. We are involved in a high level training soccer program. I have been invited onto the Non-Profit Denkyem Sports Academy team Ministry. Hope has wanted to play soccer as long as I can remember. John wants to play every sport possible. I have taken up a position in blogging/social media/marketing/ non profit sports league. I adore the culmination of all of my skills in a flexible work time. Its an amazing opportunity for my children. It is a new branch of a ministry that has been tried and true. My kiddos get professional training and skills workouts, access to premier leagues and training, for my work online. Fantastic! It is a win win all the way around. For sure. The whole character approach is fantastic! I am totally in with every aspect.

Today was John John’s first 4 hour work out. Accommodation is given to him in consideration that this is a therapy of sorts for him. His brain needs to continue to mend and heal. It is a big part of his recovery. John tends to push way way way past his limits….on a regular basis. I never discourage this. He needs to push and push to achieve his potential. Hell, he has been given the very gift of healing and grace from God Himself!

I just have to learn to facilitate. He has goals. I am in no position to do anything other than to try to make it happen for him. He is DRIVEN to achieve. He is willing to take the pain for the gain. I know this about him. I was hesitant to bring him into this level of training. I count his calories meal by meal, painfully aware of the potential for muscle wasting. Hope has lost a few lbs herself through this first month. I expected that. But, John’s lbs are more preciously coveted.

So, how to strike a balance. His leg hurt (his brace is too small and he just came out of two weeks in a cast). He developed a new blister in his brace today. Ugh…..I am at a point of trying my best to temper his activities with Sams size boxes of protein bars. How can I strike a balance? A new brace is on order. Maybe next week?? So, I stick his legs in a nice episom salts bath after practice.

Then Dad drops a bomb. He is choking and vomiting on food at an increased rate. I tend to walk away from meal times. I have an active bleeding ulcer and am not tolerating food very well. I am allergic to ALL antibiotics and am not sure what to do except feed my family and stay away from food. I’m waiting on a GI consult for myself. But, me aside, the choking issue. It is making John avoid food…this is problematic at its best.

John struggled with this after his brain surgery and relearning how to swollow. It was a long and arduous path. I have made eating as easy as I can for him. I meticulously separate food and try to minimize the varying texture issues that tend to make him choke. Its apparently getting worse. OK. Do I consult OT? PT? GI? I am totally at a loss and in fear of a sugar laden feeding tube formula. So, sigh…….impasse……impasse…….white flag……

Anywhoo, Shout out to Mrs. Alyssa……we were thinking of you today……

With the weight of many worlds on my shoulders,


Hope’s Compassion For Suffering


I started writing this post about 12 times…..I ended up deleting it. My words can not do justice to this little girl’s heart. I really struggled for weeks with letting her do what she wanted. I was afraid it would be traumatic. So much so, I made her wait three weeks. I watched the pre-haircut interview over and over again…I wondered if she would regret it. I questioned her intent. I questioned her passion. She never wavered. We had many conversations about why she was choosing to do what she was……She has only had three “trims” in her short 8 years here on earth. I never understood what was behind the intent.

I think we underestimate the suffering our children endure and bounce back from.

When Hope commented on the video “our cheesy fight song” that it was OUR fight. She said she wanted a “fight song” too. (I’m in process of creating her beautiful and elegant story) It was as if she grabbed on and was part of it. It took a lot of disecting for me to really understand SHE IS IN THIS FIGHT TOO! I had only boiled her struggle down to her own suffering. I had not stopped to think that her looking over my shoulder at other kids with cancer, that she was identifying with their siblings. That she in fact, had grown a beautiful compassion for the suffering of these other children with cancer. She has seen so many family photos with a bald child. She had put herself in their place…….she had considered her own bald head. She had tried to feel what they might be feeling. She is 8……going on 50, with life experience…..

A beautiful heart that deserved to do what she felt was right and Godly. She was offering an act of sacrifice. Who am I to say no to that? I had no idea when I interviewed her, what her heart really was telling her. I know this kid. I was fidgeting while filming, because I had never heard out of her mouth what she was saying verbalized so clearly. She embodied every bit of what she has taken in from this experience….There just are no words I can speak for her.

Her experience counts too……..she has already sacrificed much personally and stuck like glue to her needy brother’s side. She has acquiesced personal space to accommodate his neediness to have someone by his side day and NIGHT. She “visits” her personal space to change clothes or ocassionaly play with her personal toys. She gives way more than she understands. I see it everyday when I put the kids to bed in the firehouse. I know she has commited herself to filling a void of fear for her brother’s sake.

John 15:13Good News Translation (GNT)

13 The greatest love you can have for your friends is to give your life for them.

She has given her personal space, friendships, normalcy, innocence, freedom, and passions away for her brother. I don’t know many people who will willingly give that away for another’s good. She is the gracious embodiment of this verse. She doesn’t complain that she can’s sleep alone, or have alone time. She is John John’s constant companion.

So, yes, His fight has become Hers. She has given that to her brother.

I can not find anything more beautiful on the face of this earth. So, I let her cut her hair.

Her response was one of victory. I think that is to be honored.

My mind is again blown by my beautiful little gifts from God,


Everything Has Become Weirdly Normal


Hi there, I know most of you who read about my son John John don’t have a face to put to the author. So, here I am. Faith

It’s been a quiet season of contemplation lately around here. School for our son is a dream of mine realized. I never thought I would have the luxury of struggling to let him go. Every doctor told us he would never be here this long. But, you have been coming here for a while, you already know this. May 29th, 2013 is a day I will not soon forget. Today marks 2 years and 6 months since John John was diagnosed with anaplastic ganglioglioma a.k.a. aggressive stage 4 terminal brain cancer with no treatment. He was given 3-9 months to live. I never thought that I would be able to take a photo of myself smiling this week, if you had asked me 2 years and 6 months ago………But, look……we are all still here. And, everyone is ok.

I freak people out, I noticed. I have gone so up and down with every mri over the last couple of years, and yes, we have metastasis of his cancer. But, its been dormant for a year. That is not what freaks people out. It’s the part where I talk frankly about my son’s medical condition as though I have become detached. No, I’m not detached. I do have emotions. But, I realized somewhere along the way that I am not called to walk in fear. That roller coaster left the station. (it’s a long story, I got a wake up call from some “friends”)

Look. It is what it is. We embrace life, and recently, normalcy. Somewhere along the way, I realized I did not have to stay on this roller coaster all the time. I emailed his oncologist last month and asked her what the plan was. It had been 4 or 5 months since I heard from her. She said at the 6 month mark (since the last mri), he needs an mri to just check and make sure we know where he’s at.

The Dr. just kinda throws her hands in the air….she is no help in setting expectations. We are trained monkeys, we simply wait for the next mri. Well, in the last 6 months we have become so normal. It is weird. After all, John John is doing well. Hope is doing well. Steve and I are doing normal too.

So, when I received the email from the oncologist with the request that we schedule an mri for November, I paused. Wait, how am I going to do this?? Am I going to board the roller coaster of emotion again? I am invested. But, I know I do not have to be invested in a freaking out kinda way. Should I wait until Jan instead of Nov so we can do what we did last year? Get in ONE LAST Christmas? That was a horrific wait. Christmas was drama filled and the anticipation climbed to a scary level. I became panic-stricken and scared as hell. I don’t want to do that again.

I really began to think about the last couple of years. We were told terminal brain cancer. 3-9 months. Go. Live out John John’s last days. Take a Make a Wish Trip. Then he will die.

That is the reality of my mindset since May 29th, 2013. Freak out mode. Take that set of facts and run with it. That is what cancer gave to us. I think I went about it gracefully for about the first year, then I started to go nuts. When mom goes nuts, the whole world is nuts. Seriously nuts. But, the hard “facts” were very ugly. I never knew facts could be subjective. Seems contradictory.

I don’t think any parent can really wrap their brains around terminally ill when it comes to their children. That is like imminent death, right? Apparently not. I am not unhappy that the Dr.s were wrong. I’m actually 100% thrilled about that. What I am not happy with is the fear these subjective “facts” lead life to look like. I think I finally hit a breaking point. I am not angry at God anymore. My fall from gracefully handling this situation has passed. I feel like the more I think about things I know the end of our son is not near. What is terminal anyway? Aren’t we ALL terminal upon birth??

It took on meaning and I gave it power because it is my son. John John is a deeply imbedded part of my life that will never not be part of me. We place proper value on life and when we hear “facts” about the fact that this beautiful wonderfully made baby God gave us will imminently die, we don’t know how to handle that. Especially when the situation seems to linger, you count the days, the months, the years, and then wonder…Why am I still counting?????????????

Well, I won’t commit to not counting my blessings day by day. But, I think the context has changed.

Yes, terminal brain cancer, death, physical decline, therapy, IEP, struggle, and fight are all part of what makes John John himself….so are happy, energetic, healthy (aside from cancer), funny, smart, imaginative, a bit spoiled, sweet, loving, gift from God.

You see, I guess what I am trying to say is, the context is no longer black and white. It is somewhere in the grey. Ironic, grey. Grey matter, that comprises the brain. I can be every level of freaked out and it does not change the situation. I think acceptance has finally come to me. I have no answers, only God does. I don’t have the road map. Surrender, white flag going up…… I don’t have to take the scary fast roller coaster to get there. I can walk, jog, at my own pace.

It is what it is. And, I am alright with that. So, tomorrow I will call and make the appointment for November for John John’s next mri. And, I will put it away for now. He is happy. And every other wonderful descriptive word I can come up with to describe my son.

Was I just rambling or did that make sense? You tell me,


Evesham Fall Festival And Bomberjam

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When John John’s dream room was being rebuilt, there was an angel who ran the electric through his room for the various details. His name is Joe Scialabbo Sr . He also has a son. His son was at the reveal of the dream bedroom. He shared a story of hope with me. When his son was a child, he was diagnosed with an inoperable brain tumor wrapped around an artery.  They couldn’t treat it and didn’t know what it was. He is now 22 and alive and well. Tumor and all. Every year Joe puts on an event called Bomber Jam. It is a live music event with all the food and trimmings you can think of. Plus plenty of things for the kids. I asked Joe if I could purchase a ticket and he never got back to me. A week later  I received a ticket in the mail for my family to attend the event, that stinker.

Now Bomberjam benefits the National Brain Tumor Association. It is an event that was close to my heart. It was a blast! Hay rides, bouncy houses, music, food, raffles, and the song my children requested.

I am shameless about this one. My kids asked if they wanted them to sing Rachel Platten’s “Fight Song”. Of course they said yes. I wrote on a piece of paper ” My name is John, I have brain cancer. Will you please play my favorite song?” The Bands performing didn’t know the song. But, the man coordinating the music said, “I will find it, and play it for you soon.” The kids sat quietly on the picnic table to see when the song would play.

When it started i began to videotape. The kids were timid and didn’t know what to do, because there were people watching. So Joe came up and put them on his lap and let the song play. He introduced John and Hope. He explained John was part of the reason they do these things.

It was a sweet moment. I love to see people loving on my kids. Joe made them feel safe and like they could enjoy the anthem John has adopted. I love these kind of stories.

This was the last video we took of John John before he went into surgery. It was our goodbye to our son. It is what moves us to do what we do today to support Brain cancer awareness and it is what makes Joe so special to us.

Every day is a gift from God, don’t ever forget to love the people around you.

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Now, I know you wish you could repel upside down from a 65ft ladder on nothing but a rope. (he had a safety harness). This was so cool! What I regret is I didn’t get a shot with fireman Kevin! He was working his other job that day, so we visited him at work. We had a wonderful time. Of course John came decked out in his turn out gear with the custom leather made by Brent! The kids bought bow and arrows, I bought a hand scrolled cross for my husband and a tiny manger. We ate pizza and watched the jaws of life presentation. Which is way cool, btw……It was chill this year.

Still, I went home that night and went back through old photos of the last two years. I watched the videos I have taken of the kids. I remembered all the moments of joy, the blessings, and the hard times too. These are the days we were told we would never get the pleasure of having. These were supposed to be ghost days filled with unspoken grief. I never imagined I would be walking the same walk, two years and 4 months later, at the Evesham Fall Festival. It has become a marker in time, a tradition of taking back what this disease has robbed our son of. He Is A Fireman. He Knows His Goals. He Will Overcome Every Obstacle, He Will, Out Of Sheer Determination Defy All Odds. This festival each year, helps me remember to embrace the present and not to dwell on the unknown. It is hard. But, it is a refreshing reminder to wander through life picking out the gems and walking by the half-hearted things.

There has been a lot of people standing in the gap for me prayer wise. I thought to myself, God has seen fit to put this cancer at bay. How can I not believe more is possible? I think of two years and 4 months ago, saying goodbye to my baby as he was wheeled away into uncertainty. I trusted God implicitly in that moment. And for a year afterward.

It wasn’t until the cancer returned that I began to lose footing in my Faith. As I read backward through my blog posts I can see it happening. But, I have received letters from faithful friends and faithfilled Christians at moments when I just needed someone to help me make sense of it all. The joy and the pain. God has always been there, even when I could not talk to Him. He placed the right people along the way to encourage me. I am inspired by people I meet. The Evesham Fire Rescue, Joe, and the many other moms’ I talk to on a daily basis about our experiences walking this road……

With much on my mind and not enough words,


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


Steve click here

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