Elijah's Victory
Living with Neuronal Ceroid Lipofuscinosis
Type II (Late Infantile Batten Disease)
Type II (Late Infantile Batten Disease)
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.
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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. Aaron 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. Courage... Confidence...Passion 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. Lord 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 miss. 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 The dawn falls across the skies and I fear I will not be able to close my eyes. No sleep will rest upon this home. My child awakes throughout the night. His body seizing, his lungs rattling with secretions. Coughing and seizing, the noises of a body fighting for life. His mother and I do not dream of the end of a day, for the day never seems to end. We get an hour or two, then we must wake again. As my son’s body is tired, our bodies are tired, we see no end in sight.
I watch with great horror as his eyes open, his hand begins to jitter. His eye twitches, next his lips, and last his whole body violently shakes as if an earthquake is upon him. His expression, his eyes lifted and his mouth open wide, seems as if pain is striking him. Soon his body calms and his breathing goes soft. His eyes slowly close and for a moment he rests until it runs its course again. No remedy or cure can stop this madness. None that we can see. We lay him in bed, surround him with melodies of music and love. Whispering often into his ear, “Daddy loves you, Jesus loves you.” For a calm hour or a fleeting moment I close my eyes and forget the suffering and painful night. But with a loud jolt, my body jumps to the menacing beeps from his oxygen machine. His lungs hold back air, while his heart rate races, unable to maintain during the seizure. Another 12 to 15 minutes or more will my mind begin to settle into some kind of sleep, only to be struck down again. It is a continual scream in me, wanting to rest but forced to be awake. I can only pray the good Lord will turn 2 hours into 4 and 3 hours into 6 and miraculously my body, mind, and spirit will be lifted up and restored. I will know deep rest and life again. I will see in each morning sunrise a joy to sustain me, a light to shine upon me to lift the dread of night and replace fear with faith. To rise from a grave and fly among the clouds. Where I sit in this moment, looking at my child, his eyes open and breathing heavy, my heart hurts. I don’t look with comfort at my pillow and my bed. I say, “What is the meaning of sleep? Why even try to lay my head down?” Until my head can hold it no longer and my eyes fill with drowsiness and I fall to the end of myself. Thoughts fade into nothing, slip one by one until the space of my mind is a mist. I meet God in that place. I have seen him often this week, in a form I can know, one unlike images or descriptions colored by men. IT is like a fragrance in the air, joy expressed in a room without people, the cover of an unread book, and the soft living presence of a melody. The touch of a man’s soul where body seems to drift away. No dream or games played in the mind, it is something real. So real it cannot be touched with the hands or grasped with a single thought. Heaven seems to lift me up when all else is taken down by the weight and strife of the world. I imagine my son sees this far greater than I. He is wrapped up in the Father’s Light, never touched by darkness. Set free in a dying body. A reality I know nothing of at this point, but I will know someday. This takes the sting out of the night, the night is not as dark as it was. One glimpse of light, a shimmer of hope. I can rest now and see the peace as if I am holding it in my hands. I know the One who holds me in His hands. The One who commands the darkness to flee, it does, He is doing it in me. It has been a long time since we updated here. Things for Elijah had been calm and stable, we go through our days following our routines without much variation. So much we have written with intention to post, but has been pushed aside by the normal workings of daily life. But Elijah has now been in the hospital for a week. Fighting pneumonia and uncontrolled seizures. We are trying to keep him comfortable and trying to get him home to be comfortable. It's likely we will not gain any control over his seizures and we will just need to do our best to keep him from being in distress through each one.
With a camera in my face I could not really put into words what Noah's run across America meant to my family and I. I needed some time to process all the emotion of it. In a world with so much selfishness, everyone out for themselves, and how to become richer and famous there is a man that inspired us to more than those ideas of success. A true hero Noah is to us. So many will never come into our son Elijah's room. Seeing him struggle in his hospital bed, coughing and seizing. In a very real way Noah has brought some of the world into that room. Letting them know that every life maters to God, every life has value and is worth saving. God has inspired us, given us hope, He has used Noah and the team of people who have come along side him to make a cure seem possible. What seemed impossible now seems more possible. Our son will likely not see that day, but we are comforted, we have hope that other children will have the chance to live. It takes selfless people like Noah to make these things happen. He has done more than just run across America for those who cannot run, God has used him to inspire us to live selfless lives. We thank him for being obedient to that call. When the doctor tells you your son has a terminal disease, no cure and no treatment, everything in your world turns upside down. You accept the reality that hope is not an option. Take him home and make him comfortable. It is very unlikely that a treatment or cure will be available for our son. But today we have hope that someday rare diseases will be wiped out. God bless you Please visit Noah's website at www.run4rare.org See a news clip about Noah with Elijah's dad being interviewed here On March 19th Elijah will turn 9 years old. When he got diagnosed in 2010 he was declining so quickly we thought we wouldn't have another birthday with him, but here we are 5 years later getting ready for another one! In children with Late Infantile Batten Disease death often occurs between the ages of 6 and 12 years old. We cherish every birthday and try to make them special. Elijah currently has 1,886 likes, would you help make it a memorable birthday by sending him a card? We want to find that mailbox stuffed full this year! If you would like to send him a card the address is P.O. Box 924 Clovis, CA 93613 We are running a t-shirt fundraiser to spread awareness of Batten Disease, Elijah's story, and to help offset the cost for our family to attend the annual Batten Disease family conference in Chicago, IL. If you would like to help, please visit https://www.booster.com/elijahbatten2 to purchase a shirt and help out. Thank You for all your support!
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