I wanted for a moment to give up on trusting The Lord. Wondering what would life be like if I let go of faith, so many have long ago. At least it seems that way. Jesus is a single conversation, a quiet prayer with no heart in it. A prayer with no thought of walking it through. Words for many to see Jesus.
I sit next to a boy who cannot express love in any human way, at least I cannot see it all the time. I often wonder if I am imagining that he knows me. Rarely a smile or sigh, just that far off look and his eyes rolling back in his head. Perhaps that is the way of faith. Look hard at God until you see Him clearly. Like looking long into my son's face until I see that He knows me, he loves me, and desires me to speak to him even if he cannot respond.
I do not pretend God is visible to me. I still cannot see him or audibly hear his voice, but in an inhuman way, a supernatural way I know He is here. Directing my thoughts now, possibly your thoughts. I am not in control. I try to be, but it does not work. But I see he who talks to God regularly and as become more aware of his presence, more acquainted with His character and can trust him in a greater way. He has not programmed his brain to believe fairy tales and believe the invented dreams of an ancient man.
He does not ignore reason and science. Somewhere along the way the many have cleverly crafted a plan to make God and faith in Him appear foolish. There was a Great Wall erected between science and faith in the unseen world. Programs, books movies and every device known informed the mind and heart that God was invented. A pleasure tool to bring happiness to weak people. As I look upon a struggling child these thoughts paraded through my mind. It is over they say to, "God has forgotten you. He never was here to begin with. Look about you. So many pencil in Jesus on a card never fulling intending to give EVERYTHING to Him., No! Just the bare minimum to cross the gates of heaven. They believe that is all it takes. God only wanted card carrying Believers but not life altered, radical men and women fully given to Christ." So give up and just parade as a believer in Jesus, no need to sell the farm." But I let go of these lies. If anything this child in bed has been used to drive me closer to God, closer to His holy and purposeful intent for my life. I do not have all I want but I see better that I truly have all I need. Just out taking a walk and I get tired. I grow weary and afraid. I lose my way at times and make mistakes and even willfully turn from Gods perfection for me but I just keep walking toward Jesus. Keep praying I will follow His lead. Keep relying on Him to direct me from the inside through His spirit.
How can God pull back from what He has paid for at such a high price ?
How could I turn away from a God who has held no good gift from me, giving me His own life in exchange for my wretched sinful heart? What the world sees as a problem, a hindrance to my personal happiness I see more now as joy and eternal life. A victory crown I plan to give to God. I can do nothing good, nothing without His grace. It is sufficient for me. I ask that I will be able to keep on walking, keep on trusting Jesus for all.
It is okay to doubt but how long will it dictate your life and pull from you any hope at peace and freedom? Give them to Jesus.
Life. The race of a single day run together as a marathon of months and years.
The defining moment. The first day. Life was there, it was only hidden behind muscle, skin, bones and blood.
That first piercing cry after a long pause of silence and anticipation. Will this little life survive his first seconds? Will the world hear his voice and see glory through him? The long and anticipating pause.
Everyone, nurses and doctor breathed relief when the little boy screamed out.
Besides being a little orange, and an extra day in the hospital, Elijah was a normal healthy boy. All eight pounds and 22 inches of him. His parents wrestled the next few days and weeks. Tired but not frustrated. They were tired, but emerged in joy. This was their beautiful son. He took much, but he gave much more.
His mother and I carried him through the doorway of our home. It seems like a little shack in my mind, but it was one of the finest, happiest days of our life.
It plays like magic in my memory now.
We could only see every day getting more incredible, as we watched him cry and eat. When I brushed his first teeth with foot cream thinking it was toothpaste. When he peed on my face as I gave him a bath.
He crawled across the room, he sat in the tall grass and hid in the leaves. We took him for walks down the street and said hello to the neighbors.
His first steps at the beach.
Never a hint that these would be our memories, they would be all we had left of our son as his life would slip away.
I can see these moments in our history in pictures, and then my brains pulls up images and sounds, smells and aromas. The place in my mind where all these precious moments are held. They are pulled up like old movies, faded and choppy . I close my eyes and watch them over and over again. I rewind them and fast forward hoping to see some detail I missed. I can see him at Church in his grandpa Tim's arms. He is wearing a white outfit. He is getting dedicated. Everyone is smiling but Elijah is sleeping. I can see His first birthday. He was born March 19, 2006 two years after the passing of His grandma Duska. His mom and I saw him as a kind of gift. A March child meant green Saint Patrick cake. And the cake was all over the place. Elijah even wanted to share his mess by extending his cake covered hand to us. He pushed himself around on his little motorcycle his grandpa Keith got him. All the exciting toys a one year old boy can get. Brings joy to a fathers heart. When I walk around a toy store these days it is different for me.
This is a very sad road for me to walk down. I miss that happiness, those days of surprise when my dreams for Elijah were unopened.
I imagined all joy. The kind of joy only a man, a father can see. I never saw this hospital bed in his room. Who dreams that for their son?
Elijah was born full term, the result of a pregnancy with absolutely no problems. He was a hefty weight and length and thrived from the beginning. He was never a good sleeper as a baby, but he grew and met all his milestones. He learned to walk, to run, to talk, to draw, to sing, to kick a ball, to make friends, to swim, to question. When he was 2 years old, he had his first seizure. We were told it was normal, that many children, when sick, will have a seizure as a result of a high fever. Then he got sick again, and he seized repeatedly all night, we couldn't keep his fever down enough to stop them. But when he got well they all stopped. We went on and were just always on alert to cool him off immediately should he get a fever, we were told he would grow out of it by age 5.
A few months later he started falling down. Just out of nowhere he would fall. We were sure he was being a normal sibling, trying to get attention away from his new baby sister. But within just a few weeks he started falling so frequently we couldn't let him walk anywhere on his own, we couldn't let him go outside, in the kitchen, near coffee tables, anywhere with a hard or sharp surface. We were sent immediately to a neurologist.
He was started right away on anti-seizure meds, and they worked. He also went through the normal testing, MRI, EEG, blood draws. Diagnosis was epilepsy, we were told many children grow out of it.
He then began to have behavior problems, worse sleeping problems, and he would get sick often. We just thought we had a "sickly" kid and thought nothing more of it.
We began to notice that he had a hard time learning things like colors or motor skills like riding a tricycle, so we had him evaluated by the school system. We were told he had ADHD and he was behind but once he got in preschool he would catch up.
He started preschool and he DID start to pick up on his skills, he loved going to school so much. But right before Christmas during that year he got the flu, and overnight, literally overnight, he stopped walking and talking.
The neurologist told us he had a virus in his brain and he would get better and get back to normal. The neurologist told us that month after month as he adjusted Elijah's meds, telling us that he just needed the right combination of medication and he would get back to normal. He did regain some of his skills, but it was temporary, and overnight lost them again. The last video we have of him walking on his own is from January 2011, when we were at the beach celebrating Aaron's birthday.
When he started preschool he was "normal", when he graduated preschool he couldn't talk, he couldn't walk unassisted, he had uncontrollable seizures, and if he wanted to play outside he had to wear a hard helmet with a face mask to protect his teeth.
Over that summer we switched neurologists. The new neurologist knew immediately what Elijah had, but of course we had to go through some extensive testing to confirm it. In the meantime Elijah started Kindergarten. He could no longer walk and had to start his school year out in a wheelchair. But he was still very interested in school, he could eat on his own, crawl around and play on the floor. By November that year we finally had our diagnosis and we knew he would never "outgrow" this.
When Elijah finished kindergarten he had a feeding tube, he had lost all his neck control, he couldn't sit up on the floor and play.
When Elijah started First grade, just a few months after graduating kindergarten, he no longer had hand control, he couldn't even hold onto a toy. And somewhere along the line he lost his sight.
Now he has almost no control of his body, besides moving his head side-to-side, his muscles contract into a curled up position constantly, he can't handle the secretions his body produces, he has seizures every day, sometimes he stops breathing. Every single time he leaves the house he needs: a wheelchair, a suction machine and various attachments, oxygen tank, an extra oxygen tank, oximeter, diapers, extra diapers, wipes, emergency seizure meds, comfort meds, formula, syringes, tubing for his feeding tube, nebulizer machine, extra clothes, leg braces, and more. He weighs over 50 lbs, his wheelchair weighs over 50 lbs, there's a lot of heaving lifting around our house.
One thing he does still have control over is his emotions, and he can show them to us through his eyes, through his lopsided smile, a grimace, or a moan.
Batten Disease is a fatal disease, it is always fatal, there is no cure. For more information about Batten Disease you can visit www.bdsra.org
I saw him today, Elijah.He came walking around the corner of where I was sitting and studying. He sat down across from me in a chair that was placed there for him. The open chair to come any time. He was tall and skinny like I was at his age. But always he walked taller and with confidence, not like I remember myself. I measured my appearance and abilities to those around me. Not Elijah. He had a confident humility and a spirit of victory glowing off him. He brought a presence of grace to the rooms he entered. The people around him could not tell him who he was, for he knew God had already declared it. Elijah embraced it fully, with no hesitation, with no doubt. Not as I remember myself. This day Elijah sat there with his head down low. I knew right away he was feeling bad about something. I said, "What's up sport?" That is how I called him before he got sick. Then I sort of set that name aside because I was not sure I wanted to call him that and more. He has lost his ability to grip a ball but not his desire. No power in his body but such a force kills in his eyes. He would run a marathon and back if his body could keep up with his soul. It seems a waste almost to put such love in a body that cannot express it in ways all people could see. Then most are not able to comprehend true love. Good enough to settle for desire and emotions that parade as love. Not God’s love. It is a ride of the wind and flight across stars and then that is only skimming the night glow of the ocean. There is a whole depth we would dare to see.
Elijah came into this world on a Sunday morning. One of the first calls I made was to our Pastor at Church. He announced Elijah's arrival to the congregation that Sunday morning. We always hear people say things like, “that man or woman touched a lot of people's lives.” I think after Elijah’s Birthday party I have a better understanding of what that means. How one little boy can touch so many lives. He can inspire people to live, he can point people to trust Jesus Christ.
I looked at Nicki a few days before Elijah’s party and said, “you are going all out with this party.” I saw Nicki spend several weeks making robot decorations and buying party foods. Her sister Alanna made a cool party invitation that we handed out to friends, family, and neighbors. We knew people would ask, “what should we get for Elijah.” He can’t play with toys like other seven year old boys. We knew he would enjoy a swing, so we asked for one. Elijah has so many friends, many of whom he has never met. Many of them we have never met. The day of the party it was awesome to see many of them in one place. His school teachers showed up while he was outside in his chair. He heard their voices and we could tell in his face, and in his eyes, that a familiar person was there. Like a boy running around playing with his friends making fighting sounds and hitting things with sticks, Elijah in the back and forth movements of his eyes and his head was overjoyed by the excitement of that day and all the sound from the people. I can see him laying on the floor as his sister Grace opens her Birthday presents. Their Birthday's are only a week apart. I guess it is a blessing to have birthdays so close to each other. Grace can help Elijah blow out the birthday candles and open his presents. Elijah did not care for cake and presents, he knows birthdays are not about presents. The presents would not be that special without the people who celebrate with you. Elijah had so many people celebrate with him that day.
The amazing people at Elijah's school saw his invitation and our request for a swing and many individuals took it upon themselves to gather all the funds needed to purchase the swing. On behalf of his friends at school Elijah’s two teachers presented the gift. It was almost enough to cover the entire cost of the swing. The rest of the gifts we were able to put in his account to put toward a wheelchair van. It was a moment of joy. I was overwhelmed. I wanted to hug every person who gave their money for Elijah but more than that they all showed real love. What a treasure to be Elijah’s Father.
At the end of the day we put Elijah down to sleep. No sleeping medication was needed that day. The excitement was enough. When I asked Nicki about the effort she was putting into this party she said, “We don’t know how many birthday parties we will have to give him.”
It may sound sad, and I guess it is, but does anyone know how many birthdays they have? I guess it makes you think about how you look at each day of your life. A birthday is not celebrating just another year, but another year God has given you to live.
I know every day cannot be a party with balloons and cake and cool Robot music but we can cherish our son, like he is a priceless diamond we traveled thousands of miles to find. Look at every little child in that way. Life is a precious gift not to be wasted.
October 14th at Grantland Baptist Church a dream came true. It brought me and many others great joy and inspiration. Along with my brother Ben, we baptized my son Elijah. Several months ago I had a dream that I baptized Elijah, it was so vivid and clear. Though Elijah cannot verbally express his love for Jesus, it is evident through his expressions. He needed my help to preach his sermon, and it was an honor to do so. Baptism is an outward expression of an inward heart transformation, and only God knows what is in Elijah’s heart and mind. God wanted me to understand His heart. I have many videos and memories of Elijah talking about Jesus. Elijah would often sit in his room looking at his picture Bible and say, “Jesus die. Jesus is in the Bible. He is in heaven.” God says, “Truly I say to you, whoever does not receive the kingdom of God like a child will not enter it at all.” NASB
When did I get here? To this point where I stand calmly in a hot parking lot and watch my son's body convulse? His limbs go stiff, stick out, then begin to jerk rhythmically. His eyes look somewhere beyond us. The color drains out of his face, but his lips turn an ugly shade of blue. His 4 year old sister remains calm as well. She asks, "What's wrong with Elijah?" I tell her, "A seizure." I don't have to explain to her, she's seen it before, she's been through this drill, she knows what to do. She gently puts her hand on his arm, gets close to his ear and says, "It's okay Elijah, we're here buddy." I know exactly where his rescue meds are, despite the months and months we have gone without needing them. The pills in one bottle turned to dust because we carried it around for so long. That dust gave me hope, maybe the boy will never need it again. Four seizures today, after so long without any. I convinced myself after the first one it was just because he's tired, he's been coughing. But he hasn't been coughing that much, really. By the time I found myself in the parking lot watching his lips turn blue, slipped that pill into his dry mouth, I knew it wasn't the cough, it's this ugly disease. When he wakes up tomorrow what will be missing? He doesn't have very much left to give. I hope it's not his smile, hope it will never be his smile.
Here in the grass with Elijah looking into his eyes. Heaven seems so close. Though he has not lived long his eyes are dim. There is not much to see in the world around him for he can't envision it. Only smells and sounds and the touch of wind if there is any. The grass between his fingers and my hand on his head is the worlds touch. The music and sounds of life around him is his sight. He once ran through it all. A child being as he was made to be. Exploring life, exploring God with the sense, the gifts he was given. He was a thing of beauty, to watch a life see and touch a caterpillar. To see as a picture breaking from the frame and crawling every place it can dream. There were few boundaries and even fewer inner thoughts that told him no.
Legs, arms and a contagious smile that moved with great speed in every direction. I wonder if that same mysterious mind of a child still runs in him but with out the gift of movement and sight? A man sits on a couch for 30 years and stares ahead. The mystery and adventure burned out.
Elijah climb a hundred mountain and swam across a thousand lakes and streams before this man lifted his hand. Other men have walked and sailed oceans but their minds and hearts were missing the presence of that which gives them life, God. In his frail body Elijah has what mighty men lack. The Spirit of the living God. In their prime and at the last breathe they missed the chance to truly live and breath.
I ask Elijah what he is thinking. What is he understanding. What does he see that no one else does? Is heaven real to him now because he can't see this world like a billion people do? The land on the other side of our heart. My invincible and invisible spirit alive and more real then any physical pleasure and gold my hands can touch.
I dream of Elijah seeing this world. A place many can not see for the screen in front of them is so large and so loud. But around everyone and in every breath is God. If they would say with only simple faith and a whispered cry, "I want to see you" they would see Him. The noise and screen would shatter and life would begin. The sky would scream out the majesty and glory of the maker and the breath of life would be a gift
Love would not be a nice concept for other people but a reality to be explored and practiced. Things that were impossible would be destroyed. A God who formed the vast and infinite universe would be as near as your heart beat. You would feel him in every breath.
I am eager to see this work in myself. Elijah is here. His broken body lay in my arms, his spirit roams freely with joy. Like the little child I saw run in green fields. This cannot be caged by a body or the words of man. God goes where He pleases and His children go there with Him.
Elijah runs with Him and has no limitations. His spirit, his imagination are utterly free.
Love is like magic to those who have never known it for what it truly is. A mystery they can not comprehend.
Here is something Aaron wrote:
Though the Lord gave you adversity for food
and suffering for drink,
he will still be with you to teach you.
You will see your teacher with your own eyes. (Isaiah 30:20 NLT)
God has allowed this.
I don't know what I am doing. He does.
I had a plan... He had a better one.
I decided I wanted a health boy. But I got a sick one.
A clinched gripe on what you want, expect life to be. All the world around you has built in your mind a idea. This is what happiness looks like. And you strive many many years to obtain it. And you never quite get there.
What are you deciding, what plans are you making?
How sure are you about them? Is it you and you leave God out?
Real joy this week Elijah was saying a lot of words this week. But the last couple of days has not said much.
I was feeling real down at John's birthday party today.
Watching all the other kids playing. Eman could not play with them.
Joy came when I realized something.
Eternity.... is a long time. Life is short. We hang on to ever minute and second. With such a firm grip we hang on to life, this world. It seems all our human emotion drive us to see only the here and now. Like this is all there is. But God's eternal home is permanent, it is the reality. This life is a vapor, a dust.
I can say these words now. But soon the emotions the prison will confine me.
No Lord. I feel so trapped. I just want a healthy, strong boy. I want him to be well.
What does true health and strength look like. The world has an idea that misses the mark.
God say what power really is.
I am a small dot in a vast ocean. Drowning in this wise world. A world that tells me, that try's to define me and my thought.
Here a ant that can not see past it's own little hill. A galaxy exists and the ant claim all that is, is before him.
This is the world's mind. I breath and think and that is life.
What is an infinite system of stars and universe to a mind that will not and can not see past a square block of concrete.
God, I love you.
Help me understand these feelings, help me cling to Truth.
Some moments this is like a prison to me. I can't stop it. I can't get out of it. I can't run away. I can't cry enough. And I can't cry if I tired.
I am losing my arm. Losing my heart here.
I can't move this mountain.
I am down on my knew.. ready to give up. Not even able to look at this mountain. I am so scared. I am human.
Then God shows me something to pull my head up.
How does it come?
I see Elijah laying there. The thought crosses me that he is just healthy boy asleep. From a long day at school, playing, all the thing healthy boys do. Now he sleeps in the fort in his room. He fell asleep to a story I made up. He helped me tell it. Now I watch him sleep. My healthy boy. He dreams. he is resting for another day ahead of him. He sleeps with his whole life in front of him. Tomorrow after school we will go to the park and play baseball, but right now he sleeps. No sign of any problems. He is strong and smart. So much wisdom in him. His kindness and his smile draw others to him. They know he is a man who loves. Lord we taught him that. Well you did but you used me. Thank you.
All the people he will draw to you. He will speak and live what you made him to be. He is your boy, given to me, I will take care of him.
I love you.
Seeing my boy as God see him. He sees perfection.
I miss my son. I miss they way he was. His voice and the way he would walk down the hall to our room at night because he did want to go to bed. I miss how he would run away from us. He ran so fast. He had a run where he would looking down and it was almost like he was shaking his hips. I miss kicking the soccer ball to him. I miss how he would climb. I miss his high pitch voice.
I know he is here with us. He still has that smile. But i am fearful that it will go too.
He still laughs. He had a pleasant look on his face while I put him to sleep. He was real quite and he did not have his mouth open. It was as if for a moment I was looking at a health Elijah. It was as if he was thinking some deep thought and he was about ready to tell me all about it.
Lord I pray that you would give us Elijah to us. Like he was.
I miss how he would prayer for people that came to his mind. I miss how he would look at books an get animated with his voice. I miss his expressions and energy.
I can ask Lord. But while do I doubt this. I don't know what is happening. I just want it to stop. I want this pain to go away. I want my son back. Lord if I am thinking or doing anything wrong please show me.
My emotions are so strong I am having such a hard time seeing truth. Such a hard time feeling love. Is something wrong with me. I feel so lost. I still feel so lonely. The event of the day seem to mask my thoughts. But I lay here and they come flooding bake. Please help me Lord. Please help my wife. Please help my son. My family.
Thank you Lord
I love you.
Good intension to share the gospel are not good enough. Help me Lord to love to speak about my great savior. Invite many to come to you. You power at work in me. I would be overjoyed to have the chance to speak of you.
So i ask.. What is my excuse?
Praying for a miracle.
Praying, praying, seeking.. On my knees.. Crying.. Weeping...
2 Samuel 12:16-23