Starting at the beginning

Let’s start at the beginning... on September 8, 2005 a beautiful baby girl came into this world and changed our lives.... a statement most parents make about their children. Sophia Ann, 6lbs 10oz a fireball from birth. She was born screaming, raising hell from first breath. She cried for the first 4 months of life. When she wasn’t crying she was sleeping... and she slept like an angel. She was our gift from God. I hoped our home life would be as beautiful as her life, but it wasn’t... you can imagine the shock to first time parents when you have this image of life and it is nothing you imagined, it was hard. Really hard, she cried, and not small newborn cries... these where loud teenage girl like screams. It was a test of our love as man and wife bringing her into the world and caring for her. Not to mention the medical issues that we would experience. We did get through it and we are a loving family, but it was difficult. Sophia loved being outside, she still does. I would put her bouncy seat outside because it seemed the outside was the only place that brought her peace. My mom said it was the heat and fresh air... I think it was the freedom of the outdoors that she loved. She wasn’t confined indoors. Sophia is our free spirit, our wild horse... funny that the horse is her favorite animal. I want you to know her; I want you to know her beauty, her kindness, her joy, and her hurt.
When she was 9 months old she started having seizures. It was a slow progression but she is now 2 and a half. Sophia is epileptic. This isn't an extreme story, she has no brain damage and has continued to develope normally thus far; there is always that possibility that lingers in our minds; but we place her in God's hands and let him protect her from things that we cannot. She takes Trileptal every 12 hours, Clonezapam when she is running a fever; Diastat is given when a seizure lasts more than 4 minutes. The seizures are “partially controlled” with the medication. We can deal with the seizures as they come. It is the side effects of the medicines that are so difficult to deal with; that is the everyday. Five out of seven days she wakes up complaining of a tummy ache. She has good days and bad ones. Sometimes she can be sad, mad, happy, and enraged in a five-minute span. Sometimes she wants to be alone and sometimes she wants a room full of people around. Some mornings she wants us to come get her out of bed and other mornings if we tell her good mornings it sets off a tailspin. I just pray that I pick the right thing to do. Most days I don’t know how to react. I adore her, she is my favorite girl in the world (as I often tell her), but she completely and totally drains me. I wake up tired and I go to sleep tired. She has a 7 month old little brother (who you will here lots more about later) his name is Troy Anthony. Troy is our rock, totally opposite of his sister; he is even-tempered, calm, quiet, and a real angel boy. Not that Sophia isn’t an angel... but calm, even-tempered, quiet... she is not.
Today was an especially difficult morning. As most toddlers have their days, Sophia woke up on the wrong side of the bed. I guess I should have woke her up singing instead of carrying laundry to the wash... one of those choices, I choose wrong. I took her to the potty; she didn’t like her panties, didn’t want to wear socks, and didn’t want to take off her pajama shirt... well, then it begun... whining, crying, she tells me she is sad, that I make her sad, and she wants to spend the day in her room. We got dressed and I put her back to bed. In hopes that some chocolate milk may cheer her up I filled her cup and returned it... I guess she wanted orange juice. Seems like I can’t do anything right this morning. I said a prayer and went to get her brother dressed. We had a busy morning, Sophia had preschool (she goes twice a week), the dog needed to go to the grooming place, and Troy had swim lessons all by 10am. While I was dressing Troy a shrill scream comes from Sophia’s room... I guess Daddy tried to tell her good morning. Did I mention that Troy was laughing and smiling calling me “DADADADAA....” I believe that God blessed us with Troy’s happiness and health. Maybe Sophia will take some pointers from her brother. I gave Troy a bottle and prayed some more before daring to inform Sophia that it was time to go. Two books and thirty minutes later; Sophia, Troy, Tater Tot (the dog) and myself were in the van. It was on this morning that I decided I needed an outlet. Blog number nine hundred and fifty seven, I have done this before... this one I will keep up with though.
I am hoping to be a support for parents who are dealing with epilepsy. I am hoping for support myself. Sophia is really one of the lucky ones, her epilepsy doesn't keep her from living a fairly normal life... we just deal with the bad days when they happen and pray that we have more good ones than bad. My heart goes out to those who have children who are disabled from epilepsy and I am so greatful for the life that we do get to enjoy with our daughter; however, it still isn't easy and we all have a cross to carry- this is our cross. I am also hoping too reach people with children on medications that alter their personality... the sad side of this is I really don’t know my two year old unless she is on medication. There is no option right now to take her off medicine, just to change her to different medicine, really with the same side effects. So, while I struggle -what can she control and when is she out of control... I’d like to meet other mothers who deal with the same issues. I have spoken with mothers of autistic children, children with ADHD, other parents with epileptic children, children who need medication or children with disorders that alter their personalities and behaviors... what do we do!?
Their are plenty of us out there who deal with difficult children and difficult circumstances... with support and prayer we can get through it.