A new destination...

Roxanne. Sweet, Sweet, Roxanne.
I hate to admit that I don’t remember the first few months of her life all that well. I was so consumed with grief from the loss of Austin, that I was just going through the motions most of the time. I never admitted this, but I was angry. Angry that Austin died and she survived. I didn’t ignore her, but it was very hard for me to bond with her initially. It passed, but I hate myself for feeling that way. It wasn’t her fault. She was the sweetest, most gentle soul. She was patient with me. She lost her brother. I believe she was grieving, too. The little brother that kept her company for so long was no longer there. Although I do believe he is with her. He is her guardian angel.
Roxanne was a very quiet baby. Not fussy. She didn’t cry very often. She did love to be held, which I was happy to oblige. When we were alone together, I would sit for long periods of time, and hold her. I would sing to her. I would talk to her. I would hold her while doing chores. What bonding we didn’t do in the first few days, we more than made up for. Having a child with seizures and Autism was not at all what I bargained for. It isn’t the vision I had for our life. In the same way you plan a vacation, select the destination, buy all the books, clothing, and necessities for that particular destination, only to wind up arriving in a completely different place, it left me mad, unprepared, frustrated, looking for a way to get back on track, and go to my original destination.
Once you learn and accept that isn’t going to happen, you have a choice. You either decide to try to enjoy where you are, and make the best of it, or you remain bitter, resentful, and even jealous. I admit, I often teeter between the two. So much of how I feel depends on how Roxy is doing. If she has a good day, I feel good. If she has a bad day, I feel sad. I have heard it said that “parents are only as happy as their least happiest child”. It seems to be a universal truth. To any parent that has overcome that, I am in awe.
I truly don’t mean to be pessimistic. I really struggle with this. Only someone living with a child with seizures could possibly understand. The daily uncertainty. Never knowing what to expect from one minute to the next. Plans made. Plans canceled. No rhyme or reason. One day she is fine. The next day is a whirlwind.  Hope seems so distant. Bubbles of joy bursted. Living with constant disappointment, not wanting to get too excited when another hour passes without a seizure. Bowed shoulders tell all.
When a day goes by it almost makes it harder. Why? Because you experience how life ‘could be like’. But you are never really able to allow your guard down. You are always living in alert mode. Waiting for the ball to drop. And, it does. It always does.
I watch my pink, bubbly, vivacious child, go from a smile to a grimace. Her body stiffening so hard it ridged. If no one is there to catch her, she falls to the ground with a hard thud. Her body jerking and shaking with such intensity. Eyes bulging, rolling back, watering from not blinking. Pink to Blue. Hands clenched. Mouth clenched, often biting down on the inside of her cheek, or tongue. Unconscious. Not breathing. Once the electric storm in her brain passes, she expels air, goes limp, and struggles to breath again. Struggles to fill her lungs with air. Such abuse.
After the seizure, she sleeps. Her little body tries to rest. To restore. To heal. To rest after what it just endured. She will be disoriented, unsteady. Over, and over. The most frustrating thing, is that she is unable to communicate with us how she feels. She can not tell me in words what it feels like, what she experiences, what she sees, or feels prior to a seizure. Only her eyes talk to me. I know Roxanne. Mommy understands. It is cruel.
Hospitals, doctors, tests, medication after medication. Failure after failure. The side effects sometimes worse than the seizures. Awake or asleep they still come. They are relentless. No rest. No time. Tired of questioning, “Dear Lord, will this be the one?”
Well intentioned people say, “Have a life in spite of”….I say, “Walk one day in my shoes.” I am sure they will never say another word. I used to get angry, but now I accept that they just don’t understand. They speak out of ignorance. Only wanting to help.
Oh just give us one more day seizure free! Please! Trying to have an as semblance of normal. Normal. I don’t even know what that means anymore. Consumed. Exhausted. Wanting time for myself. Faith waning. Faith tested. Angry at God. Again, questioning, “Why!” Is it me? Did I do something? Believing somehow my behavior dictates how bad or good she will be. If I am real good Lord, will you stop this? No.
Some days, all I want to do is cry. Cry and sleep. Cry, cry, cry, and cry some more. Cry until I can’t cry another tear. I feel as though there is nothing left in me. Sleep walking through life. A coma. Going through the motions. Doing the least of what is expected. But, that is all I have some days. I hear, I see, I am aware of what is around me, but I still can’t do anything. Anything that is, but cry....