Catching a glimpse of Heaven

“If you read history, you will find that the Christians who did most for the present world were just those who thought most of the next.” 
― Randy Alcorn, Heaven


I read a book a few years ago by Randy Alcorn called 'Heaven'. I honestly can't say how much his book helped me SEE and be excited about what awaits us in Heaven. I have mentioned before that having a child in Heaven made me all the more thirsty to know everything I can about it. 

I always thought of Heaven as, I don't know....boring? I mean, I knew I wanted to be there to be with Jesus but I just could not picture it. That is where this book came in, it gave me new perspective based on scripture, we need to know what awaits us so we can be excited and prepared! Who goes to Disney not prepared, after all its the greatest place on Earth right? How much more should we prepare for Heaven?

I rarely ever dream about Jackson, I have dreamed maybe 5 times since he left this Earth and I remember them vividly. But it's been at least a year since my last dream.

 A few weeks ago I found myself alone outside (that never happens) I was lying on the Trampoline just soaking up the sun and the quiet for the moment. I was just talking to God and thanking him for the warmth of the sun and I started wondering what Jackson was doing that moment in Heaven. I got the most beautiful vision of Jackson and Amy (my sister who is also in Heaven). They were very VERY high on a cliff of sorts laughing with several others. I could hear music, but it was not harps, they were jamming! Below them was a body of water so clear that I could see everything in it, every fish, every color. It was more clear than any water I could have ever seen. Then he took off running and jumped head first into the water from that cliff with my sister clapping and laughing while he swam to the bank where a big fat yellow dog was waiting for him and wagging his tail. 
I know it was probably my imagination, but what if it was a little gift from God to say "He is having a blast waiting for you !". That was a more beautiful vision than any dream I have ever had unconsciously, it was perfection. They were beautiful and joyful and having a blast ! 


I have not thought of Heaven as "boring" since I read Randy's book, but I had never had my own revelation of how awesome it will be until I got that little vision. Think about it for a moment, the same God that gave us that craving for adrenaline also created Heaven. Why would He make it boring for us? That feeling you get when you are on space mountain, our God gave an engineer the idea for that ride. Our God gave us the craving for excitement, please don't doubt that He would prepare for us a dull place. Its going to be awesome, beyond what we can comprehend because we are human and full of doubt and limits. Heaven won't hold these boundaries and we just may be able to cliff dive into water so clear we can't fathom it. We may be able to hitch a ride on a dinosaur, why not? My God knows no limits, don't put him in a box. Ask Him to show you and you may be amazed. 

If I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world. ~C. S. Lewis

Five years later

Romans 16:20 
The God of peace will soon crush Satan under your feet. The grace of our Lord Jesus be with you.

I usually really try to refrain from over sharing about my thoughts and what my personal suffering entails. I refrain because its hard for me to write (or say) and I'm sure it would be very hard to read such things for someone who has not been here. That being said, I am going to share some moments that may be a little more in depth and hard to read. I had this all written out and then I thought, "Lord how can my suffering and hard moments bring glory to you, I can't publish that!" Needless to say, He wanted me to share. I can't understand the ways that my words may be used, but he knows.......

The entire month of May is just really hard for me. This May marks 5 years since Jackson went to Heaven, Mothers day, my birthday, and it's the month my sister went to Heaven 19 years ago. This month brings with it lots of darkness and very bad  memories. 
There are some parts of "child loss" ( I HATE THAT PHRASE) that can't be shared with those who are not in this horrendous situation. It's too much, I mean, I live it and it's too much. I will however attempt to soften the feelings into words. If you know me at all you know that is very hard, I am a very raw and honest person so bare with me. 

Yesterday My 3 year old fell asleep at like 5pm. I knew he needed to wake up or he would never be able to sleep later. I literally HATE waking my kids up, I know what it will do to me. Every time I put my hand on my children's chest the first thing I feel is their beautiful hearts beating, that is not my intention, it is part of me now. I touch them to wake them or cuddle them and I feel their hearts and remember touching Jackson and not feeling his heart beat. The memories started flooding in of saying goodbye to Jackson, and it was just the last straw in the month of May landslide. I just got angry. What mother can't touch her other children without thinking of such a horrible moment? In that moment I felt the truth come over me. God knew, He knew I was being pushed and reminded by Satan's attack. He knew that I would not be able to stand against it, so He crushed it. As quickly as the darkness draped me sitting on the couch crying over my sleeping baby man, Jesus stepped in and the light met the dark. He stepped in and crushed Satan's schemes against my family 5 years ago when I asked him to, and He has not left my side since. He continues to show me His love and his presence even when I don't ask. 





He show's me himself through people, prayer, songs and scripture. I can't adequately describe how God has used my friends to combat darkness even 5 years later. There are not words to describe the love given to me from such amazing women. It absolutely matters in this spiritual battle who is in your army. I am fighting in the Lords army along side of some of the most amazing women. Five years ago I made a very conscience choice to surround myself with those who would build me up and point me to the cross. That was the best choice I made. I tell my daughter often that she must "Be a friend to have friends". Choose who you want to be in battle beside, it makes all the difference.  I love you all so much. Thank you for being the hands and feet of Jesus. I am in awe of Him because of you.
***The photos posted on this blog are just SOME of the love I have been shown this month.

The point in me sharing such a private moment is really beyond me, I can't imagine God's ways to use this but I know He will. He presses me to share and I get no rest until I do it. 

 
"He Knows" Jeremy Camp

All the bitter weary ways
Endless striving day by day
You barely have the strength to pray
In the valley low

And how hard your fight has been
How deep the pain within
Wounds that no one else has seen
Hurts too much to show

All the doubt you're standing in between
And all the weight that brings you to your knees

[Chorus:]
He knows
He knows
Every hurt and every sting
He has walked the suffering
He knows
He knows
Let your burdens come undone
Lift your eyes up to the one
Who knows
He knows
He knows

We may faint and we may sink
Feel the pain and near the brink
But the dark begins to shrink
When you find the one who knows

The chains of doubt that held you in between
one by one are starting to break free

[Chorus]

Every time you feel forsaken
Every time that you feel alone
He is near to the brokenhearted
Every tear
He knows
He know

Joyful in the sorrow

Lamentations 3:22-23

The steadfast love of the Lord never ceases;
    his mercies never come to an end;
 they are new every morning;
    great is your faithfulness.

Joyful in the sorrow: 

I have mentioned before that the change in seasons does very dark things to my spirit, and it seems it has an effect of most parents who are living without a child here on Earth. I'm not sure if its just the internal signal that we are marching on without our child (an essential part of our very being), or if it's just the constant reminder that while time is moving, at times we just can't. I think it must be both. At times like these I struggle to remember who I was "before" Jacksons accident. Who was that woman anyway? 

I know I have mentioned that I would love to time travel, knowing what I know now so that I would KNOW how intentional I need to be at loving my sweet boy. I know that will never happen but it does not keep me from wishing. Wishing I could remember every word we said to each other, or even to just know who I was back then. Was I a good mother to Jackson, did he know that he was my world? Oh time machine where are you! I suppose if I can't have a time machine I will just settle for a "timehop" on occasion.  I opened my "timehop" app yesterday knowing it would be a hard one since it was Easter. The photo that came up was from 6 years ago and it looked like strangers staring back at me. It was our family alright, but not our family, if that makes sense. It was Josh and I with Jackson and Jenna Claire. Now obviously our family has gone through tragic changes and it is not and will never be complete on this side of eternity. We now live here while Jackson lives in Heaven and since have been blessed with another child. But that's not the obvious change I'm referring to. This was subtle, not even noticed by anyone else I'm sure. We were all smiling holding Easter baskets. I was smiling with my sweet boy standing in front of me, but something was off. 

When I compared it to the one taken yesterday I would have thought we would look, less whole without Jackson, but we didn't. We looked HOPEFUL, and the realization of that made me feel guilty initially. I know guilt is not the reaction God intended, he showed me himself in the new photo. He showed me his mercy and his sacrifice in my face. He showed me his peace filling our lives with the knowledge that this is not the end of our story. It does not make the void of Jackson in our lives easier, but it gives us renewed hope. Today may be the day, the day we are all reunited. We have that hope in Christ and without His resurrection we would be lost, for eternity. Everyday I pray it will be the day my family will be together again, but without Christ that would not be possible. He alone is my rock, he is not done with me yet and so we press on. As off and as wrong as I feel right now, my story is not over, this is only a pass through. Only Jackson is home, we are still trying to get there. This is NOT our home. 

"In the midst of deep sorrow

I see your light is breaking through

The dark night will not over take me

I am pressing into you

Lord you fight my every battle

And I will not fear"

His glory was evident to me from one photo to the next. He knew I was struggling with the seasons and missing my boy terribly, He knew my heart without me telling Him. He saw me changing the flowers at the cemetery and He felt me fighting the pressing pain in my chest that threatens to open. That kind of pain that comes only with seeing your child's name on a headstone in a cemetery. He was with me. He see's me trying to maintain some type of "normalcy" when I am screaming inside.  You may believe in coincidence but I believe in my Jesus. He used a silly app called"timehop" to show me that He is living in me even when I can't feel him. He wanted to remind me how far we have come, more, how close we are to eternity, how much He loves us and does not want to see us suffer. He showed me himself in my own face and in my husbands face, there is joy where there should be none. There is joy in the midst of the pain. SEE if for yourself below. There is power in the name of Jesus, call on him and see if I am wrong. 

I will continue to seek out Joy in the midst of sorrow. I may not do it well, but I never have to do it alone. As the body we do it together. We have to seek Him or we will never stand in this evil world, we were never made to stand alone and I do NOT. 
Thank you for praying us through these times of deep pain. 

Kari Jobe:  
"When I walk through deep waters

I know that you will be with me
When I'm standing in the fire
I will not be overcome

Through the valley of the shadow
Oh I will not fear

I am not alone
I am not alone
You will go before me
You will never leave me

In the midst of deep sorrow
I see your light is breaking through
The dark night will not over take me
I am pressing into you
Lord you fight my every battle
And I will not fear

You amaze me
Redeem me
You call me as your own

You're my strength
You're my defender
You're my refuge in the storm

Through these trials
You have always been faithful
You bring healing to my soul"

https://www.youtube.com/watch?v=bfveawSAHJA&list=RDbfveawSAHJA#t=0

Dear Nationwide

~James 5:11

We give great honor to those who endure under suffering. For instance, you know about Job, a man of great endurance. You can see how the Lord was kind to him at the end, for the Lord is full of tenderness and mercy. ~

For anyone who has read any of my thoughts in the past, this blog will be a tad different from my others, this is more of a heart felt rant from a broken and offended mother of a child in Heaven. Though Nationwide will never read my words and are oblivious to the pain their thoughtless commercial caused (google nationwide superbowl commercial) , it's TO them, but it's FOR all the parents like me whose child left this world way to soon due to "Accident". 

God bless us all and help us fight the feelings of guilt and live only for the day we SEE what it all meant, the day the Lord holds us and says "you did nothing wrong, my plan is my plan." Please know that He Is the Great "I AM." He has always been and will always will be, he knew our children's names even while we dug through baby books trying to find the perfect name, he knew the hairs on their heads and he loved them like only our maker can love. With God, there are no surprises. He sustains the broken. He sustains me, even now when I'm hurt and angry. 

Lets start by understanding Websters definition of "Accident". 

ac·ci·dent

ˈaksədənt/

noun

noun: accident; plural noun: accidents

1.

an unfortunate incident that happens unexpectedly and unintentionally, typically resulting in damage or injury.

First for those who don't know, we lost a child in a tragic accident (see def above). These are my thoughts on Nationwide Insurance's commercial during the super bowl last night. 

I honestly only watched the commercial one time. One time is all it took to make my blood boil. Honestly, I don't know what was worse, the commercial or all the comments and shares I have seen by all those perfect parents who feel like these "things" would not happen if we would WATCH OUR KIDS. "Raise awareness" they say. Awareness. Of what? that cars speed and kids get in the way?  Maybe one day I'll get the honor of meeting such parents, perfection must be hard to maintain in a fallen world but kudos to you for having your kids here due to your amazing parenting skills. Too bad i can't turn back the clock and take some pointers. 

After the anger and "how dare they!" wore off, the sadness hit me like a tidal wave. People think that we are bad parents, they do. Is that not what you saw on the commercial and on the shares of people praising the commercial? They think that we, who have kids in Heaven via Accidents were not watching our kids and an accident took their life because we are bad parents.

Nationwide says they are trying to raise awareness and give out a wake up call, I can't help but ponder a few things. Do you think the "bad" parents took notice and made like an immediate and  considerable change to their parenting style due to that commercial? Maybe, but I doubt it. Mostly that commercial just slapped the grief stricken parent in the face. Hard.

What qualifies someone as good parent anyway, those who have super power and can literally keep their kids safe 24/7? Those are the good ones, they have to be, you know why? Because their kids are still here, their kids get to catch cooties and grow up ! Wish I had been more like that.......a good parent. One who watched my child. 

Truth is None of us are perfect. NOT ONE OF US, and accidents happen ( again, see definition of "accident provided above). All kids make bad choices and yes we need to be there to guide those choices, but we can't be there 100% of the time. Its just not possible. Kids are curious, they are mischievous, they dis obey when we tell them not to run, they do. They are KIDS. Most kids have zero ability to make a "good" decision until they are like, what, 25? They will run into the street after a ball and even if you are watching and yelling they can still be hit by a car. It happens that fast, trust me. Kids hide when they are told not too and get themselves into a hard spot causing an accidental death, you can't SEE a hiding child, hence why its called HIDING and how is causes an ACCIDENT. Mischievous, remember? Kids take baths, they are dirty and parents are trying to do 4745950584 things and bathe them, they can drown in an inch of water, in literally the blink of eye that's all it takes to drown people. Did you know an adult can drown even when they can swim, what about a child then? Yep, its true. Can your child swim fully clothed in case they fall into a pool ?  Count with me 1,2,3,4,5 an accident can happen that fast. Did you blink? 

Fellow mom's and dad's who have kids in Heaven due to accidents. I'm talking to myself as much as I'm talking to you, I'm refusing to believe the lie Satan and society will have me believe, that I'm a bad parent because of our son's accident. These ACCIDENTS do not make us bad parents, judgmental people make bad parents. I love my son more than the air I breathe, obviously I would change the moment he went to Heaven, but I can't. I would gladly take his place but I can't. None of us can. While Nationwide spent millions of dollars making a commercial that  has slapped parents who have lost children in the face.  Countless other judgmental and hopefully well meaning parents have shared it with snarky heading's such as "watch your kids people!" and "Its great awareness to save a child!" yea, or not. Again, see the definition of "Accident" see the words "unexpected" and "unintentional". Those are key words. Are there no better choices to make commercials about? How about one concerning parents who intentionally hurt a child, abuse and neglect their child, smoking crack while pregnant, etc?? Or better yet, stick to selling insurance and not kicking heartbroken parents when they are already down.

We are NOT bad parents. Love to you all tonight and prayers for all the tidal waves of judgement passed either intentionally or non intentionally. Words hurt, no matter how much we don't want them too, we will always be tender. We are, after all, living without our child.

Joining the unthinkable "Grief Journey"

Galatians 6:2 Bear one another’s burdens, and so fulfill the law of Christ.

This verse rings more true for those who have suffered and have somehow managed to see the light of day again. Not only are we instructed to bear one another's burdens, I believe that when we have battled pure evil and lived in that pit fighting for air, we are changed. If we allow it, God changes us. We not only want to help other's in bearing their burdens, but we also FEEL their burdens as our own to a point. The ability for us is not only to sympathize, but we now empathize, like it or not, we are one in our suffering. For some of us the hurt for them runs so deep that it causes us to flash back to our own time of brokenness. This is never more true than when another parent joins this awful club of parents living without their child, waiting for answers that will never come. We understand that gut wrenching sorrow and we remember it all to well. We remember it and at times our own sorrow and grief threaten to swell again as we grieve so hard for those just starting this journey. 

I was recently asked the dreaded question that every mom beginning this journey wants to know...."How long will I feel this way?" there is no answer for that. There is absolutely no correct way to grieve your child. It breaks my heart to not be able to give a time frame or directions for such intense pain, its the worst, most unpredictable pain in this world. For a broken bone or any physical wound there is medication and a time frame such as "If all goes well we can remove the cast in 6 weeks." With spiritual pain, there is no medication and no time frame to look forward to the pain letting up. I have been amazed on this journey at how different we all grieve. I have seen parents do and say things that I could not do in the midst of my own grief. I have seen parents seem to grasp very early that God is with them and they seem to never really drown in the pain, like I did. I have seen others farther than us into their own grief journey who seem so lost and angry. Grief is not a one size fits all and it would be great if we could all try to grasp that, myself included. 

Our small town has suffered another loss, the loss of a child who had to say goodbye way before his family was ready. A beautiful little boy whose short life will leave an eternal imprint on the hearts of all who grieve him. A child who ran through the gates of Heaven with the speed of lightening, and with an all knowing spirit. A child who would not change a thing about his short life even that it ended too soon. There is not a soul in Heaven who would come back, not one. That does not make our time here without them any easier, but for me, knowing my son would never choose this broken world over the Heaven he now calls home makes me more eager to get there too. My prayer is that this family be comforted with the peace that only God can give, no words can bring comfort like the Holy Spirit. The spirit is all knowing, only He knows how to comfort us as individually as our grief is. 

Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.

When you pray for others, and you can't find the words, pray this scripture. I know I will, and for all of us who have traveled this journey before this family may we share the words the Lord gives us to build them up. May we not stay down to long in our own grief flashbacks and may we always come back stronger from our grief "flashbacks" I love you all more than words. This life won't last forever, we must keep our focus on Jesus, we must be sure of our salvation and we must keep chasing Jesus until He returns.
Please know that when I write these blogs, its more to myself than to anyone else. I always pray that not my own words be used but that the Lord Himself use me to comfort others as He has comforted me, He WILL use our prayers so please keep sending them up. 

To the Caubble family, I hate that you are traveling this road, but you have many warriors interceding in prayer for you. We who have traveled before you are praying as only we who FEEL your pain can. 

Hebrews 10:23-25 Let us hold fast the confession of our hope without wavering, for he who promised is faithful. And let us consider how to stir up one another to love and good works, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near.

Unfortunately our town has many parents who understand this pain all to well, we are all praying for you as only we can. Here is a little tribute to some our sweet hometown babies who now live in Heaven and to their parents. May we as parents left behind be a living testament to how prayer works to sustain a broken heart. Until we meet again sweet babies, you are missed every minute of everyday.  

                                                                             Jackson Orman

Maddox Yarbrough 

 

                                                         







                                                                Tatum Caubble

                                                                 Shelby Ratilff

Lawson Lovell

  

                                                               

 Wes and Wilson

Todd Nix 

John Hayden

 Samuel Cox

Painful "approvals"

John 20:29 

Jesus said to him, "Because you have seen Me, have you believed? Blessed are they who did not see, and yet believed."

There are a few phrases or things people say that bring them and others comfort regarding God's interaction with our lives. Sometimes when something really bad happens to us personally, these words are more painful than helpful. 

Today during conversation a friend of mine said "nothing happens to us without God's say so." This statement is absolutely true, I believe that with my whole heart. While my friend found great comfort knowing that our God controls everything and He either: a.) allows them or b.) does not allow them. I could not help feeling a little prick to my own heart. 

Those of us who suffer trials that are truly crippling either spiritually or physically (or both) have a hard time knowing that not one single thing happens without God's stamp of approval. Knowing this and believing it in our very bones can cause some serious pain. Would your parents stand by and watch you be physically hurt and do nothing to stop it? Would you do that to your own child? In my heart, at that time that's just how I felt.......abandoned really.  He allowed the unthinkable to happen in my life. My mom would gladly take on any illness that may plague me or my family to save me from pain and most parents would do the same, given that choice. Unfortunately, that's not how it works. Our God has a master plan, we don't have to agree with it, but we do have to trust it. He does not ask us to trust it with a smile on our face, He knows. He came to Earth and suffered pain I can not bare to think about. He knew no sin and yet He took on the sin and pain of EVERY human who calls on His name. I can't bear my own pain, let alone everyone's else's.  I have to tell myself "Perspective sister, eyes on the cross", if I were not able to keep perspective in those questionable moments, well, I can't say where I would be, but it would not be here. It certainly would not be sharing my life in hopes that I can help one person, just one person stay focused while they face such pain and loss. I could not shake the lyrics of a song, I have come to know that Jesus speaks to me through lyrics. Even while all these thoughts were racing through my head (and I wonder why I have insomnia) these lyrics kept coming to mind:

In the silence, in the waiting
Still we can know You are good
All Your plans are for Your glory
Yes, we can know You are good
Yes, we can know You are good

Lord we trust you, Lord we trust you.

We can know....we do know. I need to say that my life is broken in certain aspects that will never be whole again while there is breath in my body, I will never ever be who I was before Jackson left this Earth. I also need to say that when I came to the most critical point in my life that I made the right choice, I chose to trust Jesus.

 Now when I look back to the moment I felt so abandoned by God I SEE Him there. I don't know why he allowed this to happen to us, but I know He did. I also know He cried with me, and He carried me, and He still does. He does because I trust and I know this is not how it ends. 

John 11:35 Jesus wept.

Its possible that when people point out that God controls all things or that they are very "blessed"  I may always feel that gnawing pain to my heart. I don't try to hide from God that it hurts me that He allowed me such pain, I tried that. Now I try so hard to never stop trusting His plan, even when I'm so mad I can't even stand to be around myself (yes, I am aware that I am very unpleasant at times, especially when I'm hurting).I think The Lord wanted me to share this because He knows that we are mad. He knows that we question "What happened Lord, where were you?". I think He wants us to tell Him, He already knows. 

Maybe I will look back on this blog one day and it will help to remind me to keep my eyes on the cross, Lord knows I may need the reminder tomorrow. 

The song in my heart this afternoon is: 

Passion - The Lord Our God (feat. Kristian Stanfill) Lyrics

Promise maker, promise keeper
You finish what You begin
Our provision through the desert 
You see it through ‘til the end 
You see it through ‘til the end

(Chorus)
The Lord our God is ever faithful
Never changing through the ages
From this darkness
You will lead us 
And forever we will say 
You're the Lord our God 

(Verse)
In the silence, in the waiting
Still we can know You are good
All Your plans are for Your glory
Yes, we can know You are good
Yes, we can know You are good 

(Chorus)
The Lord our God is ever faithful
Never changing through the ages
From this darkness
You will lead us 
And forever we will say 
You're the Lord our God 

We trust You, we trust You

So we won’t move without You
We won’t move without You
You’re the light of all and all that we need, Lord to everything
We won’t move without You
We won’t move without You
You’re the light of all and all that we need,
We trust You, God

We won’t move without You
We won’t move without You
You’re the light of all and all that we need, You will in Your hands
We won’t move without You
We won’t move without You

He has blessed me IN the storm's of life, He has never waited for the sun shine again to bless me, nor did he wait until I was able to SEE the sun again. he blessed me in the darkness. He blessed me over and over and continues to bless me. How I love my savior. 

Face's of Juvenile Rheumatoid Arthritis part 2

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  John 16.33

I finally decided that if our son had any chance of recovery I was going to have to advocate for my baby and get myself educated. So I started documenting EVERYTHING. I took photo's of the rash and documented exactly when it came in relation to the fever and what other symptoms he had. I documented how his fever would not break even with Motrin or Tylenol until it was good and ready, and then it would rapidly drop to 94.0 and he would shake violently for hours. I knew in my soul this was not a bone issue, but a systemic (whole body)problem so I pushed. For 2 weeks, I pushed. I had to push against my own family at times because they felt like the Doctors knew better than me, they were wrong. Never underestimate a mothers instinct!  I was about to have our 2nd child any minute and Jackson was not getting better. The Infectious disease doc made the decision to let us go home on IV antibiotics and return for more testing in 3 days. I was blessed enough to have an OBGYN agree to induce me in so I could have the baby and get back to figuring out what was happening. 
On January 19th we welcomed our beautiful baby girl Jenna Claire, as I have posted before, she was born to be content and that she was. The next few visits consisted of bone marrow tests, spinal taps, and everything else under the sun. When Infectious disease finally decided they had ruled out any freak disease they referred us to the one who saved our son's mobility. His pediatric Rheumatologist at ACH, her name is Dr.Morris and she was a hard lady. She came in, looked at my journal and plainly said ( I know because I wrote this down as well, Lord knows I would not remember) , "Mrs.Orman, your son has Juvenile Rheumatoid Arthritis with a Systemic Onset, meaning his whole body is being affected. Joints, blood cells, platelets, all of it. JA is cannot be cured, but WILL control it if you can handle what has to be done." SAY WHAT? I knew I was not crazy (yea I didn't know that, that would be a lie, I have always been a little off), so she sent us home with a prescription for daily immune suppressant injections that costed approx $1500 a month. Thank you JESUS we had insurance that didn't argue too much. We started the daily shots and it immediately (seriously after like 2 shots) it killed the rash and fever. The problem was that it was not helping his pain.....at all. Praise the Lord, again, I found an online site for parents of kids with arthritis. Those ladies saved what little sanity I had left. They encouraged me to push hard for steroids for Jackson, they told me the steroids are not ideal but they would get him mobile. So I called I started begging his Rheumatologist, calling I know 6 times every day until she finally caved in and gave us the steroids. She has seen lots of damage done to children by over use of steroids when that's the only drug we had. 

After 3 doses of Prednisone at a grown mans dose Jackson was riding his bike again! The steroids gave his body a jump on getting the inflammation down and the injections maintained it. Over the course of about 3-4 months Jackson went from having swollen knees that looked like baseballs and hip pain that had him walking like at 95 year old, to a sweet, round faced little chipmunk that could run like the wind again.

I don't know how Jackson's JA journey would have ended because he left this Earth way too soon, but I can say he successfully weaned off the steroids and one of his weekly injections.  WE were down to one shot daily and no meds by mouth. The summer that Jackson went to Heaven we planned to start trying to wean the immunosuppressant to see if he would "flare" and what his body could do after approx 3 years of daily shots. I was scared and so was he. I remember him asking me "If we stop my shots, I won't be able to run as fast will I ? " I remember being so sad that my baby was dependent at 5 years old on a daily shot, but hey it was working and he stronger for it. He learned to Cowboy up from all the pain he suffered, he learned to smile through pain. He taught me that if I want something bad enough, I have to be willing to grit my teeth and go for it.

I can also say that though we don't know how his journey with JA would end, and while JA did not take Jackson's life, I rest knowing that Jackson David no longer gives a hoot that he ever fought JA. He could be riding a horse with wings this very moment for all we know, pain free with nothing holding him back now. I will tell you how I KNOW he is not held down by any pain, I was given a promise and I repeat it everyday at some point to myself. I need this promise like air and I live my life and I breath by this promise. I wear this promise on me at all times on my necklace or bracelet, I need to be reminded that the pain I live with daily being here on Earth without my son will end. Here is God's promise to me and to all who know Jesus. Amen.

Revelation 21:4 He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever."

I have gained many amazing friends through Jackson's journey with JA, and honestly I doubt they know the impact they had on our journey. To all my JA mom's I love you and I pray for your kids and all they endure. Thank you for making that journey bearable and for cheering us on. And to anyone else who read this story, I pray that now you SEE and understand that Arthritis is not just some old people "thing" it is debilitating and it cripples kids as well as adults everyday.