Monday, August 26, 2013
Friday, May 24, 2013
Saturday, May 4, 2013
I am a single father to a 15 year old daughter with Tuberous Sclerosis Complex, a genetic disease that affects the brain, skin, heart and kidneys. In her case she is mentally disabled in the Autistic Spectrum and has seizures that are usually kept under control with medication. She loves attention but often does things on her own like your average stubborn teenager.
She is tall, beautiful and until she spoke, you would never know she had a problem. But when she does, she speaks in a monotone voice, refers to herself in third person and describes events in metaphor.
Her mother lost all custody in 2005 and the last time she saw her mother was in 2009. Over the past eight years it has been primarily her and I.
The mental disability has been an issue that has taught me patience and to remove expectations. However her seizures are what has made me feel the most helpless.
She currently has suffered every type of seizure. Her seizures have landed her in the hospital multiple times. She cannot take a shower or bath unattended for fear she'll have a seizure and drown or hit her head on the faucet or bath. There is a plastic sheet over her mattress for when she looses bladder control and there has been no medicine yet that has managed to get them under control.
Early this week she began having Tonic Seizures that were occurring every couple of minutes. I rushed her to emergency room where she was given Lorazepam and a loader of phenobarbital that has knocked her out for the past 4 days. To this day, she's still a little loopy and wants to constantly sleep. The seizures are no longer happening every few minutes bit she is still plagued with tonic and emotional seizures every day.
These past few days I've felt the most helpless and frightened. There is no physical clue to why these seizures have suddenly begun happening. There are new stressers in her life, with the remodel and my parents moving in, the only thing that may be causing stress would be the change in her daily routines, which I don't think would cause seizures like this. Now all I can do is wait for her next neurological appointment.
I don't mind the input from others. But some of them insist that they have better experience in parenting my daughter. I understand they may be parents themselves but none of them have gone through this on a daily level. The intentions are good, but it's insulting when I hear people comparing their experience with mine. You don't understand and please listen when I tell you that. To me it feels like you're questioning my parenting more than helpful advice and I have enough stress with the fear and helplessness of dealing with my daughter's condition.
Sunday, April 28, 2013
The past three weeks my home has had its major changes. My roommate Erin moving out, which given the circumstances was welcomed by all. My parents moving in, which has caused changes in the family dynamic as well as me giving up the Master Bedroom for the next 6 months. New carpet throughout the house. New ceramic tile flooring in the dining room, entry and kitchen. Refaced cabinets that made this house smell like solvent for the past few days, my front door restored from dog damage and finally new furniture for the living room and dining room. When it's finally finished with the counters and sink, this place will look nothing like it did before.
What I've learned in the past few weeks is that given the economy, haggling has never been so easy and everyone is offering a better deal than the previous guy. This has made the remodel reach it's completion sooner and under budget.
And for the first time, my place feels like home. It has been given its own personal touch of beauty far from the as is look of when we first bought it. And in addition, its managed to wash away some of the memories of the past 4 years. Gone are the damaged doors and baseboards from my former roommate's evil Chihuahua, my former lover's first dog and my dog's mischief. Gone is the line on my wall from a chinchilla cage placed there during a long Holiday season. Gone now is the ugly green leather sofas we'd waste the day or have discussions on. Gone is the old fence where my roommate's now deceased tweeker boyfriend broke a panel in a fit of anger. Gone is the carpet that I would have to constantly clean after bouts of my aunt's incontinence and finally, gone is the bed that is filled with as too many memories and regrets that only seedy motels see.
My life has taken on many personal changes these past few months. It's about time that my home reflect those changes and let go of the past. On to new beginnings.