My Journey

Last Entry

2008-03-18T06:23:00.003-04:00

Time has passed so quickly since my darkest hour. I cannot believe it has been over two years now since Josiah departed for Heaven. I find that I cannot "add" anymore to this journal of mine for that season has passed. I only walk with my son's memories engraved in my heart, so this is my last entry to a time in my life where all seemed hopeless. I will allow this site to remain so that maybe when someone else's darkest hour arrives, this can hopefully give hope in their dark hour.

With Love,

~ Maria

An Update

2006-06-03T15:35:00.000-04:00

It's June and that means that six months have gone by since our little Josiah passed. I try everyday to accept this void in me, but it still is too painful to try. I love you Josiah, we miss you incredibly.

Happy Birthday Josiah

2006-03-26T09:48:00.000-05:00

I was dreading today, but God is helping me every second of this day so far. I woke up and the first thought was exactly six years ago today Josiah was born. He was born on a Sunday and today is Sunday. Later on we are celebrating Josiah's birthday with a small get together of friends and family. We will have a spiderman cake and lots of Josiah memories. I miss you Josiah, happy birthday my little guy. Your daddy and I miss you.

This picture was taken exactly a year ago today. Josiah's 5th birthday party.

Snow White

2006-03-21T19:47:00.000-05:00

Today was awesome! Jess and I dressed up as Snow White and Cinderella to visit little Abby at the hospital. It is an incredible feeling bringing joy to a little lady like Abby during her hard journey. Her little face just lit up when we came to see her. I am honored to have been part of a fun memory today:)

Unwritten

2006-03-19T21:51:00.000-05:00

Me

I am unwritten, can't read my mind, I'm undefined
I'm just beginning, the pen's in my hand, ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Wild Horses

2006-03-19T00:03:00.000-05:00

I feel these four walls closing in
My face up against the glass
I'm looking out...
Is this my life I'm wondering
It happened so fast
How do I turn this thing around?
Is this the bed I chose to make?
Its greener pastures I'm thinking about hmm
Wide open spaces far away

All I want is the wind in my hair
To face the fear but, not feel scared

Wild horses I want to be like you
Throwing caution to the wind
I'll run free too
Wish I could recklessly love, like im longing too
Run with the wild horses, run with the wild horses!

I see the girl I wanna be
Riding bare back, care free along the shore
If only that someone was me
Jumpin head first headlong without a thought
To act and not fear
I wish it could be that easy
But fear surrounds me like a fence
I wanna break free

All I want is the wind in my hair
To face the fear but, not feel scared

Wild horses I want to be like you
Throwing caution to the wind
I'll run free too
Wish I could recklessly love, like im longing too
I wanna run with the wild horses, run with the wild horses!

My Heart Hurts

2006-03-12T23:52:00.000-05:00

It's been 3 months now and everyday is weird. I am living a new "normal" and I am not use to yet. Getting Clementine kind of adds some smiles here and there, but I just do not know how to process these past 2 years. I still can't believe I lost Josiah to cancer. I still can't believe that we endured seeing him pass away before our very eyes. I do know all that was reality, but never in a million years would I have ever thought that my first born little boy would die of cancer. I hurt real bad and this empty hole in my heart is aching. I have been having some health concerns with my heart. It's just these palpatations so my doctor is running some tests on me. All this stress just really impacted my heart physically and emotionally.

Outside of missing Josiah, I am looking for a job and have signed up for ballet classes. I will try to continue school in the summer. I still would like to pursue nursing, I just have to finish up my basics.

Please pray for us.

It's a Girl!!!

2006-03-09T19:45:00.000-05:00

This is our first puppy Clementine!!! How cute is she!

It' s My Birthday

2006-02-02T08:13:00.000-05:00

It's hard to believe that I am 29 today. Where has all the time gone? I feel a lot older. I pray for this year to be a year of healing and new beginings.

The First Month

2006-01-08T11:16:00.000-05:00

I can't believe it's been a month since you have been gone. I miss you. I look at the home videos I made of you every morning. I love hearing your voice. I can only imagine the incredible life you are living now. My human mind can't even begin to understand eternity, yet you are living it. Your huge example of faith has left me speechless. I pray everyday that God will help me have your kind of faith......a faith like a child. I love ya and remember I am only a breath away. Love you always Josiah.

12 Days

2005-12-22T09:35:00.000-05:00

It's been 12 days and I can't breathe because I suffer missing you. Ben misses you badly and he tells you hi and blows kisses to you everyday. I pray you receive them from down here. I miss you. Oh to hold you once again, to kiss you, to hear your voice once more. Every moment precious, every memory priceless. Never again will I make light of memories or take anything or anyone for granted.
Love you, Josiah, we desparately miss you.

You'll Be In My Heart

2005-12-19T12:48:00.000-05:00

Come stop your crying, Josiah.
It will be all right. Just take my hand hold it tight. I will protect you from all around you. I will be here, don't you cry. For one so small, you seem so strong. My arms will hold you, keep you safe and warm. This bond between us, can't be broken. I will be here, don't you cry
Cause you'll be in my heart, Josiah Yes, you'll be in my heart. From this day on, now and forever more. You'll be in my heart. No matter what they say. You'll be here in my heart, always.

This song I heard while watching Tarzan with Josiah. It's by Phil Collins. I held him while that song played and I sang it to him. Love you Josiah. I am so glad I got that moment with you.

1 Week Mark

2005-12-18T01:13:00.000-05:00

It is 1:14AM Sunday morning. This time last week I was holding Josiah's little body weeping over him. I wept and wept as I bathed him for the last time. He breathed his last breath @ 12:40 AM that Sunday. This feels so surrreal. I miss him. I hate it that time keeps going, it never stops.

Lord,
Please help me. Give me strength through this pain. I love You.

Thank You

2005-12-15T19:19:00.000-05:00

I had to bury my little boy today. I have a hard time separating his body from his spirit. I feel as though a huge hole has made it's home in my heart. But I have to say that we celebrated his life and every detail was beautiful. WE had so many people come and as we made our way to the resting place there were a total of 70 cars behind us. The city police and fire department escorted all of us to Sylvan Abbey. It was amazing. I felt so honored that so many people love my son. We even had people salute us, like the president was coming or something. Josiah how special and valued you are my son. I am humbled and so thankful for all of you who fought with us and for those who ministered to our family in ways I never dreamed. We could of not made without you all!!! I thank you with all my heart, thank you. I can't say it enough, thank you.

Love you all!!!

I Need You

2005-12-13T21:32:00.000-05:00

God,

I ask You if You can wake Josiah up. I agonize over the thought of having to put his little body under ground. I won't be able to ever see him again. I know he is in a better place and tha tI will see him in Heaven but I am human. I want him with me. I want to see him and touch him. Cancer robbed me of my son. I pray for justice. Please give me the grace to carry this horrible burden. I need You.

Info

2005-12-12T21:16:00.000-05:00

Wednesday is the viewing from 5-8PM
Thursday @ 10:00 AM is the service at our church in Clearwater.

First Assembly of God in Clearwater
1739 South Martin Luther King Jr. Ave
Clearwater, FL 33756

Call (727) 585-5468 for details

If you would like to make any contributions, please make them to:

Eightside Records
Master's Commission USA
18409 North Cavecreek Road
Suite 2 PMB #319
Phoenix, AZ 85032

Checks are to be made out to Eightside Records.

Thank you. I know Josiah loves Eightside so much.

Day 2 Without You

2005-12-12T06:49:00.000-05:00

My Josiah:

I love you buddy. I miss you. Your room is still the same. All your clothes are still there. The CD player is still playing "Come Walk With Me" on repeat, just like we do every night. I am so torn and lost wihtout you my little guy. I am so sorry, Josiah. I am so sorry buddy.

Josiah

2005-12-11T04:08:00.000-05:00

I don't even know how to put this into words..............Josiah has passed away at 12:40 AM. I am lost. I am broken. I am pain. I am suffering from missing him. I am frozen. I am shocked. I am consumed by anguish.

How I love you My Josiah

How am I suppose to live without you?
Please wake up, buddy, please wake up.

Hear Me

2005-12-06T23:47:00.000-05:00

This road is lonely does anyone hear me?
Can anyone hear the pain and agony that screams inside of me?
Can you hear my anger?
Can you hear my emptiness?
Can you hear and see what I see?
Can you hear my weariness, my depression, and my broken heart?
Can you hear my son?
Can you hear his battle cries?
Can you hear his heart?
Can you hear his plea?

My Josiah I don't have the words to tell you how much I love you. You are infused in my soul. When I look at your tired eyes I still see you. Even though your little body is broken, I still see you. I can still see you, Josiah. Even though your hands and feet fail you, even though your voice is gone, even though you struggle to eat, I can still see you. I love you and this cancer cannot rob you of you. You are still there and I love looking in your soul. When you sleep I see you, when you are sad I see you. I can see you and not this mallody. There is so much more to you than this disease. It doesn't define you, God does. I love who you are and the person God made you to be.

Beautiful Disaster

2005-12-03T22:06:00.000-05:00

When we sing songs like "I Surrender All" and say stuff like " God I just give You my all" do we really know what we are saying? Here I am in a mother's nightmare. I think about all the times I have sung the songs and have said all the right "spiritual" things, but did I really mean them? Now my little boy is slowly dying of cancer and I think to myself "God do I really give You everything?" In the midst of watching my little boy suffer from a grueling disease I say to myself "Lord, Josiah is Yours and in Your infinite wisdom if You see fit to heal his broken physical body, please I ask that You do, but if You see fit for him to go home then please I beg of You to give me the strength and the grace to live through his departure." " I know if Josiah goes home that he will be in a better place than this harsh and cruel world, but I ask if this is the course which You allow me to walk through please help me."

In this whole experience I have found God and my salvation. I may fail, I may be broken, I may make mistakes, but I am experiencing God like I have never before. I am torn into pieces, my heart is striken with anger and much grief, but I know He is with me, and maybe just maybe I will make it. You know I am begining to know what hope is. While my world crumbles before me I am relieved to know God is my hope, my only hope. I am glad I atleast have that. I guess I could call this time in my life a Beautiful Disaster.

Hospice

2005-11-16T20:30:00.000-05:00

Well everyone it's been a while since I have posted and becasue so much has happened since then I will post about the present. Hospice is now visiting us once a week to check up on Josiah. He has a hospital bed in his room. I am glad he gets a more comfortable bed. Josiah is not walking on his own without assistance so I help him walk wherever he wants to go. The steroid's side effects have been very devasting to all of us. This kind of steroid messes with your moods, it makes you gain so much wiehgt due to the water retension and the swelling of your face and belly, it shuts down your adrenal glands temporarily, and your appetite increases. For a child to gain 20lbs is a big deal Josiah now weighs 63lbs. I can hardly lift him. He seems very tired in the afternoon, but in the mornings we go to school. Everyday my energy goes to being happy around Josiah. I figured well it's very easy to be sad and depressed so being happy is what I strive to work for, especially in front of my boys. My little Josiah has gone through a grueling and hard journey. I just pray that I can help make this all a little easier. I don't know how but I ask that God would help me.

Part II 08/17/05

2005-10-27T13:51:00.000-04:00

Eleven hours after surgery Josiah's ventricles were radically smaller. The shunt was doing it's job, praise God. Since Josiah felt better we were discharged and we were glad to get back home. Well little did I know being home would start a whole other drama. Since Josiah had brain surgery and on steroids you can only imagine the horrible fits he had. His behavior was extremely irractic, demanding, and impossible to work with. It was heart wrenching seeing him act this way. The only thing we could do was to ride those times out and boy did we do a lot of riding out. Once the first two weeks passed since surgery Josiah started acting much better. We were so relieved.

Since then Josiah has been able to go to school from 9-1PM Mon.-Fri. He loves it and he really loves his little school friends. His teacher Mrs. Gretchen is amazing. She has made everyone these little gloves with the fingers cut out so that everyone can wear an arm brace like Josiah. The kids loved it. He has to wear one because his left hand is very weak. His school has been incredible to us and a great blessing.

As for me I am just living from day to day. I am extremely sad, but coping. I continue to be there for my boys and that's about it. I place my hope in God and continue to believe. This is a lonely road but God I know You are with me.

August 17, 2005

2005-10-03T22:41:00.000-04:00

Hi everyone. I know I haven't posted in months but life sure gets busy and stressful. I am doing okay. I am pretty devastated by all this. Josiah has come leaps and bounds since Augaust 17th. That day I thought I was going to loose Josiah. That day I will never forget. I called all of our families to come down. The night before i had read to him before bed time and he seemed fine. The next morning he looked tired and he threw up. I recall the doctors telling me that if he throws up and continues to play he is okay, but if he acts lethargic bring him to the hospital. So based on that information we took Josiah to the hospital. When we arrived the nurses were expecting us and so we were admitted pretty fast. The first thing they did was take his vitals, get a catscan,and access his port. Well things would have gone okay if his port hadn't been clogged. The nurse had to access him three times and then with no success they ended up puting in an IV in his arm. We had to hold Josiah down because to access (which means to insert a needle in the port that is right under his skin on his chest) him he had to be still. Well Josiah screamed and wrestled. We had to hold him down as he tried so hard to escape all the chaos. Josiah needed steroids (Decadron) asap and also blood sample. Once they got the IV in and started his steroids he calmed down. I ended up reading to him as I held him. After the steroids took effect Josiah was so much better.

After things calmed down the doctor said that the throwing up was tumor related. He advised a shunt(which is a pump that takes the excess fluid from his brain to his stomach)to be put in so that it can alleviate pressure from all of the fluid back up in his little brain. It was hard decision, but well worth it. Up until the surgery we had quite a difficult journey. Since Josiah was on a high dose of steroids his moods were very intense. He was irrational, you couldn't reason with him, but God sure did help us. We were able to help Josiah process the major events ahead of us. The first one was the MRI (which he did awesome), then waitng for hours for results, and finally for the neurosurgeon to look at the MRI scans to plan the surgery. On the day of surgery Josiah had to go 8 hours with out eating or drinking. It was so hard. Josiah kept incessantly asking for his sleepy medicine (which is his anestetia)literally every minute. The neurosurgeon finally arrived and had looked over Josiah's results. She said that the tumor has grown 40-60%. She then proceeded to tell Dan and I how things would go if Josiah were to pass. She showed the MRI scans and yes his brain stem was swollen and the tumor was bigger. I stood there numb and rejecting that information. AS soon as we finished talking we prepared Josiah for his shunt surgery. He kept saying he wanted his sleepy medicine and he was scared when the nurses were prepping him for surgery. I had to carry Josiah to the operating room and lay him on the operating table. That was an outer body experience for me. I felt like I was in a dream and that none of this was really happening.

During the surgery, I went downstairs to the cafeteria to see my incredible family. I enjoyed just being there with them. I kept thinking how blessed we are to have family that comes down anytime we need them. When it came time for Josiah's surgery to end I got to see him almost right after leaving the operating room. As I approached the recovery room I heard Josiah screaming and crying. I ran to him and the first thing out of his mouth was "I want my sleepy medicine!!!" I tried to explain to him that he already had it done and that it was over but he was still under the effects of the anesthia. He was drowsy and unsettled. He was confused and pulled out one of his IV's from his foot. I tried to comfort him but nothing seemed to work. I was so angry and just devastated seeing him like that. I wanted to go outside and scream. I had such intense emotions that I just started to cry.

Well I will type later I am tired.

Kat's Song

2005-08-09T12:59:00.000-04:00

I just wanted to share this song that my sister wrote for me. I love it.

Verse 1

A boy is up this morning
With his spiderman suit on
5 yrs old and can't decide
which role he'll play today
Different faces he does make
His imagination so great
In his fight to win the odds
He knows you're still god and says

Chorus

I believe the promise that you spoke to me I believe what you started will be complete I believe in the power of the one who died for me With faith to believe in what I know but don't see I belive

Verse 2
Mom she's doin fine
Takes it one day at a time
Hope in knowing to whom he belongs
And in that she will be strong
But sure she has her days
Wishin all this would go away
With no understanding, no reason she just says

Bridge

Promises were never meant to be broken
And this promise will be kept forever
He is yours, He is yours, He is yours......

Written by Kat Holder
Phoenix Master's Commission
Frontline

You're Still God

2005-08-02T15:03:00.000-04:00

I would like to share with you all my anthem through this devastating time. This song I have inscribed in my heart. It keeps me going when I can't get up.

I know You haven't left me
But I am still fighting
My heart has been struck Lord
It's left my soul crying
But I know that Your promise says You'll prepare a table
And even in the presence of my enemies I know

You're still God
You're still God

I don't understand
why You let this go on so long
All my questions why Lord
I leave them all to You
For I know that your Promise says You'll prepare a table
and even in the presence of my enemies I know
YOU'RE STILL GOD
YOU'RE STILL GOD
I'll let nothing come and separate and take my Love from You
For it's in You is where I rest and where I hide
Let Your freedom reign in me
Let Your freedom reign in me
Let it reign Lord
Let me be free

You're Still God

written by Matt Poole
Frontline
Phoenix Master's Commission

"No matter how much the weight of the problem is
No matter how much the weight of the pressure is
Whether it be small or big
whether the sin is big or small
He's Still God
And the people who are secure in that fact are the people that make it
The people who are secure in the fact that He is still God in every situation are the ones who endure till the end
And the Bible says that those who endure till the end shall be saved
And the people who are going to be saved at the end are gonna be the people who say no matter what the trial or no matter what goes on I refuse to be shaken
My security is in the fact that He is still God"

Nina Poole's intro to You're Still God

No matter what I desparately desire to make it. I want so badly to endure.
James 1:2-4
"Dear brothers and sisters, whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow. So, let it grow for when your endurance is fully developed, you will be strong in character and ready for anything."

He was there

2005-07-18T09:24:00.000-04:00

God was there......when I was in conflict
when I thought that life was not worth living
when I was hurt by others
when I was lonely
when I was depressed
when I cried in agony
when I was confused
when I was angry

God was there November 14, 2004 when the doctors announced my little boy's mallody
He was in that very room going through each dark moment with me

God has suffered with me
God has sustained me
He has kept me living
He is now living and guiding me through this very painful season.
God is with me, He never did leave.
His gentle presence gave me peace last night in the midst of crying and pain.

2005-07-15T16:01:00.000-04:00

My Josiah
I love you and you are an amazing little boy. I do not understand the battle you were forced to fight, but I want you to know that I will continue to do my best in fighting for you. Even though you have this mallody you still have such a peace and joy that can only come from God Himself. I am so proud of your strength, courage , and your hard work in getting through the rough times. I can't begin to describe my love for you for it runs deep in my heart and soul. I want the world to know how incredible you really are.
love you, your mommy

Numb

2005-07-12T09:03:00.000-04:00

Well it's been a quiet couple of days. I have to tell you that I have been enjoying my boys. Ben is soooooooooooooooooooo cute and he loves Josiah so much. I wish you all could see them together. Anyway as for me I have been feeling numb. I don''t know why. It's like my feelings are on hold or something. Even though I feel numb it seems like I discover more and more emotions each day. I wish I could describe them to you , but I can't. Atleast not yet anyway. I don't quite understand this phase, but ironically enough these numb feelings are helping get by. I feel like I can live like nothing is wrong, like there is nothing to threaten my son or my family.

Do not know what to say

2005-07-10T11:48:00.000-04:00

Hi everyone, I know I haven't posted in several days, but I am speechless as of now. I really do not know what to say. So, maybe in a couple of days I will be able to post something. Until then keep us in prayer.

Feeling Emotions

2005-07-05T11:50:00.000-04:00

I read this book called Getting Over the Blues (A Woman's Guide to Fighting Depression) by Leslie Vernick. She is a Christian licensed clinical social worker with a doctorate in Biblical Counseling. I use to think that depression would never happen to me because I am such a "happy person", but that all changed November 2004. Walking in this journey I have and am having emotions I did not know existed. Leslie says that "depression is the body's attempt to protect itself. When depressed, our body starts to shut down and our mind and will power become sluggish, even immobile. This may be our body's defense to protect itself from overwhelming stress and emotions that threaten our well being." I am not at that point yet because I am doing some preventive things so that don't hit rock bottom. My boys need me and I have to take care of myself so I can function. I am going to a wonderful Christian Counselor. She is amazing and has and is an incredible help to me.

I think about the Apostle Paul, Job, and Jeremiah all who dealt with depression. I think about Jesus and His intense emotions like deep sorrow, anger, and undescribable pain. Just thinking of these mighty men and our Savior encourages me to know that all of them can relate above and beyond my pain. Just knowing those things in the spiritual makes me feel like I am not alone.

Well as of now, I am still trying to figure out these intense emotions. I would have never thought in a million years that my little boy would.......have cancer. I am devastated by this and I may make mistakes and fail, but I know through Christ I have hope.

No Words

2005-07-01T23:12:00.000-04:00

No words can describe what I just went through with Josiah. I am speechless.

Poem

2005-06-30T21:52:00.000-04:00

Lonely and confused.
Drained and depressed.
Longing for healing, praying for peace.
Innocent child of mine, what a battle life has brought to you.
So young, so tender ,I cannot bear this injustice.
Desperate cry, emotions high, looking for shelter, in this horrible time.

2005-06-30T19:33:00.000-04:00

Me and my baby

2005-06-30T19:31:00.000-04:00

Cake Time

2005-06-30T19:25:00.000-04:00

Ben's 2nd Birthday

2005-06-30T19:17:00.000-04:00

This is me.

2005-06-28T23:19:00.000-04:00

Soccer Boy

2005-06-28T23:16:00.000-04:00

Benaiah and McKae

2005-06-28T23:14:00.000-04:00

Benaiah and Josiah

2005-06-28T23:10:00.000-04:00

Crystal and Me

Angry

2005-06-26T22:45:00.000-04:00

I am so angry right now. I feel like going to a field and scream at the top of my lungs. I can't believe this is happening to my son. I feel such rage and anger inside of me. I am so angry that I cannot protect my own son from this sickness. I feel so helpless in trying to guard and protect him. I feel like my hands are tied. I abhor that feeling. As a mother I am infuriated that this cancer has touched my son. Jesus I ask You to please help me. I can't do this. I feel like my physical body can't carry the agony that I feel. I need You. You hold the septor of justice, please vinidicate my son. Whether it is in this life or on judgement day I look foward to that day. Please help me calm down, help me, help me please.
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Alone

2005-06-26T10:30:00.000-04:00

I can't help but feel like I am going through this journey alone. Sometimes I feel like people do not understand the seriousness of this disease. There is no human cure for this cancer. If this cancer continues to progress my little boy will go home much earlier than I would of ever expected. If this is the case, if this is what God will allow, I will miss him. There will always be a huge hole in my heart until the day when I am reunited with him. I ask God to help me live through this. Sometimes I feel so overwhelmed that my body gets weak and I feel such a tightness in my chest. I don't write this to make anyone feel bad. I do know of the people that have been so helpful. It's just the loneliness of being in this situation when our family is the one who faces this every minute of everyday. I do thank all who have helped and who continue to help. I am forever grateful. It even helps to know that people are reading my blog.

Well, as I think about other families going through difficult times, I think about the New Jersey Families that lost their children in a tragic accident. I do not know if they know Jesus, but I sure do pray this path leads them to hope in Christ. If not this family will be consumed by this awful tragedy. I now know that living this life without Christ will only lead us to despair with no way out. We may not have a say so in things we cannot control, but I do know that God will bring justice to those things that try very hard to destroy us. I believe that God will pour His wrath on satan and bring justice to His children. I hold on to this verse "God is close to the broken hearted" I look foward to the day that cancer will get what it deserves.

The Cross

2005-06-23T23:07:00.000-04:00

I use to think I knew "some things" about life, but now I feel like I am starting over. All of my perceptions and "opinions" on things have dramatically changed. The only thing I am left with is this: Christ died and rose again so that when life hands you devastation, through Christ, you can survive. I say "survive" because as a mom seeing my little boy go through something like this it's a matter of survival. When I think about the Cross it gives me hope in a hopeless situation. Every other opinion or belief is rubbish. Being in this circumstance ,I can understand why people, who live without Christ, use drugs and alcohol to escape life's harsh journey. As for me, I think about Job a lot. He had everything taken away from him. Yet he held onto God and that's me, I am holding on. Even though Job had it worse than me, he sure did leave an incredible example. It has taken me time to come to this realization, that regardless of the outcome God still has my heart. Even if I suffer and lose everything, He still has my heart.

The Six Weeks

2005-06-22T08:54:00.000-04:00

To be honest, I do not have the emotional energy to really go in depth tonight. Looking back just really hurts, but it also helps to let it out.

Typical Week - Mon -Fri Radiation/Anesthia & Sun - Sun Chemo

Radiation - The sun has not risen yet. I still see the big dipper in the moonlight sky. It is 5:00 AM and I have to give Josiah his anti nausea medicine called, Zofran. As I walk in his room, I see how peacefully he sleeps. I stare at his little face and grieve. I feel so sad that he has to walk down a path that I would have never ever chosen for him to walk through. At times I feel so much pain that I start to hyperventalate. After I gather myself, I proceed to wake him. I say "Hey buddy, good morning, it's time to go get your sleepy medicine (which is the anesthia), so take your Zofran (this medicine prevents him from vomiting due to the radiation). Josiah wakes up and he takes his pill without any hesitation. Once he finishes he gets out of bed and tells me "Mom I am ready for my sleepy medicine." So, he walks to the living room and waits patiently for Dan and I to get ready.

We leave the house at 6:15 AM so we can be at Bayfront Hospital for his radiation by 7:00 AM. Radiation goes like this: It is waves that destroy or "burn" cancer cells as well as healthy cells. Because Josiah has to lay perfectly still at all times, the doctor puts him under anesthia every time he gets radiation. Once he lays on the "bed" thing, his little face is covered with a hole covered mask that marks where the radiation is to go. The procedure only takes about 5 minutes, but because of the anesthia there is a pre and post process. Dan and I go to the waiting area and we just talk or sit quietly. When the procedure is finished, Josiah is taken out of the room and back to his normal hospital bed. There the nurse and the sleepy medicine doctor wait for him to wake up. When Josiah comes out of the anesthia he gets out of it very mad. So, they staff always makes sure Dan and I are in the room before Josiah wakes up.

Steroids - Well the steroids made Josiah gain 21 pounds which is a huge deal for a little kid. He went from 39 lbs to 60 lbs. His little face was perfectly round and his stomach was big. Even though these steroids have such awful side effects, it is a blessing in disguise. This medicine prevents his brain from swelling. You see, the tumor puts pressure on the surrounding areas and the brain has no room to swell at all. Anyway because of the weight gain Josiah could not move around much. I had to treat him almost like a baby. Giving him a bath I would lay a towel in the bath tub and gently lay him on it. I would have to sponge bath him because his port could not get wet (port is a device they put in his heart so they can give him any IV meds, transfusions, or just be able to take blood. It has two tubes that go in the arteries and the tubes are connected to a ball like device that is just under the skin. That is where the nurses insert the needles, which are connected to an outside tube, where the meds go through, to get into his body.) This port was high maintnance, you could not get that area wet, period! Not only was the weight a hard issue but his mood swings were terrible. He would be so angry and he would scream and scream with anger. I had to tell myself "it's just the meds". To be honest those fits really got the best of me. I would just cry and cry.

Okay, I can't finish this, but I will go ahead and post it anyway. It hurts remembering all this.

A Good Night Prayer

2005-06-19T22:01:00.000-04:00

Dan and I just finished putting Josiah to bed. Josiah is learning to pray. He is a little shy, but he prays if he repeats after Dan or myself. Tonight Josiah prayed for the following people: Benaiah, Zach, Jess, Nikki, Nana, Pepi, Hailey, Mamita, Papito, tia Vicki, tia Kat, and Pastor Lloyd. He also asked God to heal him. All Josiah knows is that he has a yucky ball in his little brain. Even with that knowledge he continues to live life like nothing is wrong. He plays, throws fits, loves Ben, likes to "poot", and plays XBOX. Just looking at him you wouldn't be able to tell. As I was hearing Josiah pray, I thought "Even though he has this life threatening disease he is praying for others." He prayed with a child like faith, the faith God longs for us to have in Him. He is so innocent and he loves people. I am learning so much from him.

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The Next Day

2005-06-16T18:47:00.000-04:00

Tuesday - When morning came, I got up thinking about what the doctors could possibly say. My sisters, Kat and Vicki, roomed with me at the Ronald McDonald House (if you are not familiar with RMH it is a place parents can stay while their child is in the hospital. So, the next time you go to McDonalds' please make a donation to the Ronald McDonald House). Since I did not get a chance to unpack I had Josiah's suitcase with me. I walked over, grabbed his clothes, held them to my chest sobbing, and I kept saying " I am so sorry my son, I am so sorry." I just kept repeating it over and over. I was hunched over in pure despair and pain. Kat just held me trying to comfort me but I could not be consoled. Once I was able to regain some strength I showered. As I showered I just stood there wanting to just wake up from this nightmare. Even to this very day I feel like its all a horrible dream.

When I got to Josiah's room Dan and Josiah were just waking up. Dan told me nurses were in and out checking Josiah and giving him his meds. His meds consisted of the following:
Decadron (steroid) - to prevent swelling of the brain
Zantac - to protect his tummy from the steroids that could irritate his stomach lining
IV fluids - to keep him well hydrated
Now, the steroids alter your moods and make the person extremely moody. So, Josiah had moments where he was, what I call, Mr. Hulk. He would scream and get so mad at everyone. Those definitely were moments that came amd went. I recall one moment where he got upset at something and he screamed for what seemed forever. I carried him down the hall to get him out of his room, but nothing seemed to help, so I just continued to hold him and love him through it.

Well, when it came time to meet with the doctors, Dan and I had Wayne(Dan's dad), Pastor Steve, my mom, and my friend Heather in the conference room. We all got seated and the doctors were all together in front of us. Dr. Tuitt spoke most of the time. He started to tell us that Josiah's situation is nonoperable. Due to the tumor being inside his brainstem performing surgery would end his life. You see the brainstem is in charge of keeping our hearts beating, our lungs functioning, and it controls the nerves in our faces. When I heard this, I could not believe what I was hearing. He gave us statistics: 30% chance to live the first year and a 5% chance of living the second year. This tumor tends to grow regardless of treatment. In that moment, Dan did a brave thing in my eyes. He told the doctors that we will hold on to the 5% and regardless of what you are telling us we are people of faith. We will believe God for Josiah's healing. As for me, I was unable to speak. My whole body was weak.

From that meeting, I decided to ignore my emotions and go into adrelanine mode. I said to myself, "God give me the supernatural strength to be all I can be for Josiah and Benaiah." I was fervent in that I was not going to allow this report to rob my sons of their mom. My frame of thinking changed into just tell me what I need to do and I'll do it. I will deal with my sadness another time because the road ahead was going to be very difficult. Josiah's immediate treatment was this: 6 weeks of chemo that came in capsules and 30 sessions of radiation Monday through Friday. He also had his other meds the steroids, zantac, and fluvocane. Those six weeks was tough for all of us. I will post about that another time.

The Best Good Night Hug

2005-06-15T12:00:00.000-04:00

Last night, I just finished putting Josiah to bed, when he called me back into his room and just hugged me for atleast five minutes. I was alittle caught off guard because he normally does not do that atleast not that long. I asked him a couple of questions like are you okay, what are you thinking, and do you have any questions? He just said no. I responded and asked "Why are you hugging me so long?" He said "Because I love you". I had to withhold from sobbing right in front of him. Just for that moment it was like nothing was wrong. I just enjoyed his little arms wrapped around me. I felt like time had stayed still for that moment. I kissed his forehead and I told him," love you good night ", he repeated the same thing and went to sleep.

Finding Out

2005-06-14T15:10:00.000-04:00

On November 8th - 13th went to Puerto Rico to visit my family and for a youth convention that Pastor Lloyd and Frontline (from Phoenix Master's Commission) were helping out with. Here is a day by day document of how we came to find out about Josiah's mallody.

Monday - We flew to Puerto Rico and Josiah was fine. At that point I did not notice anything different, other than him being a little tired due to waking up so early. We landed and met my parents there and went straight to my grandmother's house. We had a great Puerto Rican dinner. From there we went to our hotel and Josiah was still acting fine.

Tuesday - We went to my grandma again and spent most of the day there. One event that sticks out to me is when Dan went to run an errand Josiah got so upset that he left. I mean Josiah was out of control mad. I knew he pitched fits like a normal 4 year old, but this was like the incredible hulk of all fits. Well after calming him down and soothing him he remained real quiet. I thought it was because he must of been tired from his fit. My grandmother watched him closely and paid close attention to Josiah's facial expression. She felt in her spirit that something was wrong neurologically. It was something in the way he was staring. I did not know this at that time because she did not tell me until my mom mentioned it to me at the airport when we were to fly home. So I continued to think that he was okay and that he was just tired.

Wednesday - We went to El Morro, which is a huge Spanish fort. It is absolutely gorgeous there. It requires a lot of walking going from place to place and plus it's hot. Josiah was acting a little different. This time I noticed. He was asking me to carry him and that he was to tired to walk. He seemed like he had a virus or something. After El Morro we went to my parent's resort and Josiah was feeling a little better.

Thursday - We spent the day at my parent's resort. Josiah enjoyed the pool and hanging out with his grandpa. It really was a good day. Later that night Dan and I went out to eat and my parents watched the boys for us. Everything was fine.

Friday - We had to drive down south to Ponce where the youth convention was held. It was a grueling drive. We had go through the jungle and over small mountains. Josiah slept the entire time. Ben on the other hand got car sick and threw up oreo cookies. It was so messy and smelly! Anyway Josiah continued to sleep. When we arrived we checked in to our resort and we got settled. Josiah was fine he seemed to be having a good time. When it came time to sleep he and Benaiah did great.

Saturday - This was going home day. We had to pack up and leave to San Juan which would be a 3 hour drive. Josiah and Ben did fine. I did not recall anything unusual. Once we got to the airport my parents met us there and we unloaded all of our stuff. My mom then told me what my grandmother said on Tuesday. I kind of looked at my mom like what are you crazy? There is nothing wrong with his brain, I thought it was just a virus or something. I told my mom that I had already planned to take him to his doctor the next morning. So after we said our goodbyes Benaiah and I headed for our gate and Dan took Josiah with him to return the rental car. When Josiah and Dan got to the gate he was carrying Josiah. He did not want to walk and he seemed a little week. Once we got on the plane and seated, Josiah said he was going to throw up and he did. I definitely thought yeah he has some kind of stomach virus. Once we landed at Orlando Airport and we had already gotten our bags, Josiah threw up again. I was glad we were outdside and yet that is when I felt like something more was going on. I thought to myself "Could my grandma be right?"

On the road, Josiah slept and we arrived home at 10:30 PM. When we came inside our house Josiah went straight to bed along with Benaiah. Before Dan and I went to bed, I checked on Josiah and it seemed like he was sleeping fine. Midnight rooled around and I hear this thump. I go to see and it was Josiah who fell in the bath tub trying to throw up in the toilet. When I saw him I picked him up and he still needed to throw up. When he did it was a clear yellow liquid. He was so weak and couldn't walk. He wanted to go back to sleep so I allowed him to do so. I heard in my spirit that Josiah was being attacked. I went to bed praying in the spirit.

Sunday - I woke up at 6:00 AM and immediatley called the doctor and made an appointment for 7:45 AM. Dan woke up a little later and started to get ready for church. I called one of the MC girls to come and watch Ben while I took Josiah to the doctor. I remember telling Dan not to be surprised if Dr. Kelly tells us we need to take Josiah to the hospital. With that in mind I got a bag ready just incase. When we got to the doctors' we saw Dr. Kelly and I told her the symptoms and she told me it was either two things: 1) He could have fluid build up behind his ears causing the dizziness and vomiting or 2) He is showing signs of a stroke.

When I heard that I was shocked and numb. From that point on I felt like I was in the twilight zone. I called Dan and told him the news. He was speechless. I drove by the church picked him up and headed to the hospital. On the way there Josiah was horribly weak and I kept asking him how many fingers do I have up Josiah and he would answer me correctly. that brought some comfort to me. Once we got there they immediately took him in for a cat scan. Then they had to put an IV in and it took them 5 times to get one in. We spent an hour or two in the room with Josiah. He was calm and watching TV. Then Dr. Kausey came in the room and he said "We looked over Josiah's scans and..........we found something." When I heard that I felt like I was having an outer body experience. I felt like this is not happening it is a dream a nightmare.

I started to call my family. I was frozen in shock and despair. My mom fell on her knees in complete and utter shock and disbelief. I heard her cry out. I called my brother and I said "Nick they found something" and hearing that he tried to comfort me. I couldn't cry for some reason. I felt like I did not have time to cry or go in a rage. I had to be there for my son I will deal with my reaction later. So they admitted Josiah and we stayed.

Monday - Josiah had been on medication all night. Nurses were in and out checking him. They started him on steroids to prevent swelling in his brain. When the sun came up he seemed to be better. This day was the day we were to find out exactly what Josiah has. We preped him for an MRI. They had to put him under anesthetia. Once that was over with we got back to our room. My mom and I were there and Dr. Barbosa (the cancer doctor) came in without any warning and pretty much told me the worst news of my life. I was bitter on how unprofessional he was in telling me because Dan was not in the room. He told me that this is a brain tumor called Brain Stem Glioma or pontine glioma. He said it is the size of an egg and that Josiah has eighteen months to live. I collasped into my mother's arms. I felt my body go weak and numb. I could not walk. I started hyperventalating and I managed to get up from my mother's arms. I walked out of the room and I faced the doctor and told him I wanted to see it for myself. He showed me the MRI scans and there it was, the tumor. It truly was the size of an egg. I kept asking him if he was sure and if there was anything they could do. He just looked at me and told me no. Now bythis point, Dan was coming back and I saw him coming up the hall. I looked at him and he could see it on my face that there was something terribly wrong. When he found out Dan went into this shocked non reactive mode. He was stunned. After that some other doctors came in the room to look at him. They were nuero surgeons. One doctor Dr. Tuitt said we were to meet tomorrow to talk further detail.

Well I will end it hear. I will post another time.