Watch what you say - words can hurt
Before I start my story, let's get one thing straight. I am not a writer. Nor do I love to write. In fact, sometimes I don't even like writing. I am not perfect at grammar and you will more than likely find some errors...but...nobody is perfect...
My name is Ashley. I am a wife, photographer, business woman, do it yourself-er, and many more things. I am also a laundry doing, house cleaning, booger wiping, van driving Mom of two (three if you include my furbaby, Ranger) and when my husband has a man cold I think I would even qualify for four. But above all things, I am a woman of God. And I believe more than anything that I am blessed.
If you think like me, you believe that God does not hand us anything that we cannot overcome. But some things we just simply are not ready for. At least that's what we think. Until we realize that if we put our whole heart into it, anything is possible.
There have been two times in the last 27 years of my life when I thought why me? Why my family? The first was when I was 19, on December 15th 2006, when my father passed away. The second was on June 24th, 2009. My son, Caleb was just a few days shy of 4 months old.
He was running a fever of 103 which landed us in the ER at Langley AFB. While being seen by the nurse in triage she was examining him and all of a sudden her face went blank. She said nothing. She grabbed my baby, my first baby, from my arms and ran him back to the emergency room. My husband and I, in an instant panic, followed quickly behind as I repeatedly asked what was going on. They put him on the hospital bed, hooked him up to an IV and in seconds he was surrounded by nurses and doctors. It was the scariest moment in my life. I'm not sure if any Mom could have held it together at that moment but I sure did not. As one of the nurses tried to calm me down they had explained that the nurse had seen Caleb having a seizure. The doctor had made the decision to transfer him via ambulance to PNMC where they would have proper equipment to run tests. After numerous tests including an MRI, cat scan, spinal tap and what seemed like an inhumane amount of blood tests we sat down with the neurologist. What he had to say would completely change our lives forever.
After 4 nights in the hospital we were finally able to take our baby home, along with the diagnosis of Septo-Optic Dysplasia (SOD) AKA De Morsiers Syndrome. Prior to Caleb's ER visit he had been seen by his primary care doctor and she had diagnosed him with nystagmus (twitching or rotating of the eyes) and had referred him to see the neurologist but that chance came sooner when he was admitted. It turns out his nystagmus was directly linked to his SOD.
Septo-optic dysplasia is a disorder of early brain development. It's traditionally formed into three different characteristics - underdevelopment (hypoplasia) of the optic nerve, abnormal formation of structures along the middle of the brain, and pituitary hypoplasia. In Caleb's case, all three were affected. He was born without a septum pellucidum, which separates the fluids from the left and right side of the brain. While the septum pellucidum doesn't play a major factor, abnormal brain development can lead to mental disability and other neurological problems. Caleb was also born with his left optic nerve 2-3 times smaller than what it should be and his right optic nerve is almost non existent. There is no cure for optic nerve hypoplasia, yet. Caleb is near sighted and legally blind in his right eye. He wears glasses and is very aware of his surroundings as he uses his heightened sense of touch to complete many obstacles throughout the day, such as walking over a change in surface. He was also born with his pituitary 2-3 times smaller than average size. As of now, his pituitary is producing the right amount of hormones but he is monitored yearly with blood tests to make sure everything is on track. At any point he could stop growing. That is when hormone replacement would step in.
Caleb's SOD also makes him prone to seizures. Between the age of 4-8 months he was diagnosed with infantile spasms. He would lose complete control of his body and go limp. This would last anywhere from 10 seconds to 5 minutes on and off. He was prescribed a very strong steroid to manage the seizures. I will never forget the day I had to give him his first injection. It is fresh in my mind as if I just did it yesterday. A daily injection that made him so sleepy, imobile and overweight. But without it the seizures would continue. Every seizure killed brain cells. He became so numb to the injection. As if he had accepted it. At 8 months the spasms had finally stopped. Caleb continued on anti seizure meds up until last year, at the age of four. Though he is currently not taking medication his condition puts him at risk for development of seizures in the future.
|Side effects of steroid was weight gain|
Caleb is monitored yearly by his eye doctor, neurologist and endocrinologist for his SOD. Just this year, he had his first visit to the developmental doctor and left with a diagnosis of Autism.
Caleb has been in therapy since he was 6 months old. He has been seen weekly by his occupational, physical and speech therapists for the past 5 years. He started pre-K when he was 2 years old and also got therapy services there, including vision and orientation and mobility. All of his actions such as toe walking, hand flapping, high pitched screams and bursts of emotion were all ruled out to be a reflection of his vision or a symptom of his SOD. I had always thought that he may be on the autism spectrum and brought it up on more than one occasion to his doctor. It wasn't until his 3rd year of pre- K that I had had enough. I was no longer taking no for an answer. Caleb's vocabulary had widened unbelievably and his behaviors were starting to intensify. Not only was he still doing all of the actions he always had but his behaviors were screaming Autism. His echolalia ("automatic repetition of vocalizations made by another person") was constant, he had outbursts of crying and laughing within minutes of one another and his processing time took anywhere from 2-10 minutes for a simple command or question. His teacher agreed with the diagnosis he had received. She had been seeing all of the behaviors that I saw on a daily basis, in the classroom. Caleb's diagnosis of Autism was more of a clarity than anything. We had finally had an understanding of all of his behaviors - even the ones that didn't make sense with SOD.
SOD and Autism is a daily struggle for Caleb and it will be for the remainder of his life. But guess what? That doesn't define him!
Caleb is the happiest little boy you will ever meet. His smile is contagious. His laugh is infectious. He brings tears of joy to my face every single day. I will never again question "Why? Why me?" because I know why. Because God knew I could handle it. He knew I would do everything in my power to make Caleb's life the best it could possibly be. He is my shining star. He LOVES music and the water. He can probably hold a note longer than me and his pitch is pretty spot on. His favorite show is Mickey Mouse Clubhouse and his day is not complete until he gets an episode in. He can down some PB&J with a chocolate shake to go with it. He adores his baby sister, Bella and his dog Ranger is the ONLY dog he is not terrified of! He doesn't have a mean bone in his body. He loves with every ounce of himself. He has a Disney themed bedroom with a trampoline and a piano mat that he uses daily. He enjoys riding his scooter and shaking his booty. He is perfect, in my eyes. Caleb will be starting at a new private school for Autism this Fall and we could not be more excited. Every day's a new...and there's never a dull one around here.
The words from Dr. Goretzke's mouth that night in the hospital room could have been sugar coated. He could have told me everything is going to be fine. That Caleb would have a completely normal life...but he didn't. He spoke the truth and he told me he didn't know. And I couldn't be more thankful. I am aware that Caleb's life is not normal. I know everything is not going to be fine, all the time. And I don't know what lies in his future. I hear from people on almost a daily basis what good of a job I do with Caleb and how I am such a great Mom. I get told that Caleb is lucky to have me, even though it is absolutely the other way around. Those words mean more than anyone will ever know. They effect our life in a positive way. They heal the wounds that are left behind from the people that don't watch what they say.....
I've had my fair share of ignorant stares, inappropriate questions and fake smiles. I've heard people use the word "retard". I know some people are well aware of how rude they are being and others are the complete opposite. They just have no clue. Be aware. Be aware that there are others different from you. Be aware that there are other children different from your children. BE AWARE of special needs. Watch what you say. It can hurt or it can heal. We don't want sympathy. We want awareness. Our world is not one dimensional.