I know this is long but it so typifies Henna's outlook on life. We could all learn something from our special children and how they embrace life. Enjoy!
GOD LIVES UNDER THE BED
I envy Kevin. My brother, Kevin, thinks God lives under his bed. At least that's what I heard him say one night.
He was praying out loud in his dark bedroom, and I stopped to listen, 'Are you there, God?' he said. 'Where are you? Oh, I see. Under the bed....'
I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.
He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult.
He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.
I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?
Up before dawn each day, off to work at a workshop for the disabled, home to walk our Cocker Spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed.
The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.
He does not seem dissatisfied.
He lopes out to the bus every morning at 7:05, eager for a day of simple work.
He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores.
And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. 'That one's goin' to Chi-car-go! Kevin shouts as he claps his hands.
His anticipation is so great he can hardly sleep on Friday nights.
And so goes his world of daily rituals and weekend field trips.
He doesn't know what it means to be discontent.
His life is simple.
He will never know the entanglements of wealth or power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.
His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it.
He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax.
He is not obsessed with his work or the work of others. His heart is pure.
He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.
Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.
Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that is difficult for an 'educated' person to grasp. God seems like his closest companion.
In my moments of doubt and frustrations with my Christianity, I envy the security Kevin has in his simple faith.
It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.
It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances - they all become disabilities when I do not trust them to God's care.
Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.
And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed.
Kevin won't be surprised at all!
A MIRACLE!
Henna was 2 years old when she was admitted to the hospital with a traumatic brain injury. She had been thrown against a concrete wall by her biological father for crying too long. She had two depressed skull fractures, old blood on the brain from previous abuse, a lacerated liver, collapsed lung, suspected sexual abuse, and shaken baby syndrome. Henna coded while on the way to the hospital via helicopter and was brought back to life only to go into surgery to relieve pressure on her brain. She was not expected to live through the night. Henna was in a coma for one month hanging on to life. Then the miracle happened! Henna woke up and was able to move all her limbs and speak, shocking all of the medical professionals. We took Henna into our home and shortly after her arrival she started having seizures.
Henna's journey continues as we try to control her seizures. She received the Vagus Nerve Stimulator (VNS) on Feb. 4, 2011 at Children's Hospital in Washington, DC. The VNS will send an electrical impulse to Henna's brain every 3 minutes for 30 seconds to interrupt her seizures. Over two months we have increased the electrical current and we have seen no change in her seizure activity. It looks as though Henna is in the third of children who receive a VNS that sees no relief from the VNS. We are very disappointed! We have started her on a new medication in addition to her current medications. Maybe it will help.
Henna's journey continues as we try to control her seizures. She received the Vagus Nerve Stimulator (VNS) on Feb. 4, 2011 at Children's Hospital in Washington, DC. The VNS will send an electrical impulse to Henna's brain every 3 minutes for 30 seconds to interrupt her seizures. Over two months we have increased the electrical current and we have seen no change in her seizure activity. It looks as though Henna is in the third of children who receive a VNS that sees no relief from the VNS. We are very disappointed! We have started her on a new medication in addition to her current medications. Maybe it will help.
On August 6th, 2012, Henna had a full corpus callosotomy. This surgery is for people who have generalized seizures with no focal point. The corpus callosum is a band of nerve fibers located deep in the brain that connects the two halves (hemispheres) of the brain. It helps the hemispheres share information, but it also contributes to the spread of seizure impulses from one side of the brain to the other. A corpus callosotomy is an operation that severs (cuts) the corpus callosum, interrupting the spread of seizures from hemisphere to hemisphere. Seizures generally do not completely stop after this procedure (they continue on the side of the brain in which they originate). However, the seizures usually become less severe, as they cannot spread to the opposite side of the brain.
Henna received a white Labradoodle, Leo, from 4 Paws for Ability in Oct. 2010. We sent 4 Paws 2 shirts a week to help train her dog. One shirt was when Henna had a seizure and they used it for her dog to smell the chemical change during her seizure. The other shirt was when Henna had NOT had a seizure. This helped her dog differentiate between the two scents. It's a fascinating process. We trained for 10 day in Ohio with Leo and a trainer before bringing Leo home.
Leo had been going to school with Henna but started to bark and growl at different people when they came into her classroom. We worked with Leo's barking and growling when people would knock on the door and for a while he seemed better. He is very protective at home also. He then barked and growled at some boys who came into Henna's classroom and had to be removed from school. The trainer at 4 Paws said that some dogs bond so closely with their child that they become protective. Leo took on Henna's classroom as another home and felt he had to protect her. Sadly, because of his aggressive behavior, Leo can no longer be a service dog. The trainer said Leo would behave lthat way with any child he bonded to. Just his nature. We will keep Leo as a pet. Leo LOVES being just a pet. He still alerts to Henna's seizures and lives to get his hot dog reward!
Henna now has Snoball, a beautiful Golden Retriever. Snoball was born June 3, 2011. She is so sweet and a bundle of energy! Sno is doing an excellent job alerting to Henna's seizures BEFORE she has them! She is alerting up to one hour before Henna has a seizure. Sno goes to school with Henna and proudly wears her school ID badge. Snoball will be a great seizure alert dog and will serve Henna well.
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