Friday, May 24, 2013

My House is Now My Home

                 I have had a constant fear of permanence that has led to the ‘Three Year Periods” of my life. I have never attended school for more than three years. I have never lived anywhere in my adult life longer than three years. No job longer than three years and the only relationship that lasted more than three years was with C. and I spent a good portion of those years trying to destroy that. In short, I fear permanence.
I lived in my house for three years before I finally treated this as my home. Maybe it was the fact that I was content with being here past the three year mark that I decided to shape the rest of the place outside my bedroom to something that belonged to me. That simple step was done by adding family pictures to the place. Now this place is my home. This place has been remodeled and it’s still my home. The carpet is what I chose, the kitchen counters are my pick as well. Nothing here simple came with the place. Nothing here is a remainder of the former owners. This is my home.
This is the place where I’m supposed to go to when I feel frightened or lost. This is where my family lives. It is where I raise my daughter full time and keep her on a routine so she can feel safe and loved. This is a place I bring people I want to let into my life more than the average, casual acquaintance. This is a place I come to after a long trip or stressful event that I can take a deep breath or crash in my bed and know all my creature comforts are here when I need them. I have lived in this house longer than three years and I have the right to call it my home.  
I write this because the past two weeks I have spent wondering what is going to happen next. Will there be a battle for me to keep it? Will I spend the next few months feeling like a prisoner in my own home? Will my life be turned upside down because of this place? I don’t know what to expect and for that my stress levels are at an all time high.  Little by little, my home is turning back into a house I currently live in. The aura of permanence is fading and I will not stand for that. I intend to fight for this place. Preferably in a peaceful way where all parties can agree to original ideal and life can quickly return to its scheduled normalcy. But if it can’t I will fight tooth and nail for my home. I will exhaust every legal avenue and lay waist to bridges formed to keep my home. This is not just an address anymore. This isn't just walls, floors, a roof and furniture. This is a place I intend to put in roots and raise my family and I will not give it up gracefully.

These are my terms that I open the door for a peace agreement. This is my declaration of independence. 

Saturday, May 4, 2013

Helpless and Scares

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.