My Child

Just how, how did it come to be?
My child...tainted by the horror that is epilepsy.
My child...damaged, delayed and wading through drug imposed delirium from day to day. Recently I've asked myself:
Who IS this child? There are moments, maybe hours where I see my darling Izabelle shine through, other times she's lost somewhere in one symptom or another. I look at other children happily playing while
My child...is too scared that she will have a seizure to stray too far away from me. I see toddlers string together sentences more easily then
My child can find words to express herself. The joy they say, you know parenting, has become a thankless chore,
a burden,
a disappointment...
Is it wrong that after days of time secluded within the intensive care of
My child... I yearn for the ease of connecting with a neuro typical child? This year has been so draining,
part of me has turned cold,
part of me has lost hope,
Part of me has emotionally disconnected and won't allow myself to be fully disappointed again.
I expect the worst...
Not to be grim, but that's the only true pattern with
My child's condition; that it's fucking worsening; that nothing fucking seems to work. Five years ago, it seemed like she was a typical child. I miss those sweet easy days when she was cheerful, happy, seemingly healthy and as plump as can one can be. Where did it all go wrong? Was it the vaccines? Were the seizures there the whole time? If so, how did I miss them?
I just want to go back there.
I don't want to be where we are today.
The most desperate thoughts flood my mind lately. I mentally and physically labor trying to find help for her, for me, so I can have a somewhat normal life too... Some days giving up seems to be the wisest answer. I'm lost now too, trying to help her.  I just want to be a happy, loving mom... not the nurse, the social worker, the pharmacist, the behaviorist... Just the loving mom. Is that too much to ask?

They are to blame.

The pharmaceutical companies have ruined my child. They have her system hooked. The answer to side effects and withdrawal is more pill pushing. We are forced to continue med-ing her more and more. I think back to the early days of her seizure disorder and how easy her seizures were to manage. These pharmas have harmed her more then she ever would have been without them. 

Dogmatic proclamations of a cure can kiss my round ass. 

My brain always goes back to: "You can quit your job, then you can take her off of all the pharmas and nurse her back to health." 

I dream of a safe detox center where we can go to be done buying into this facade. 

I never feel like I can do enough. 

I want her back.

Part of me is broken. 

I numb myself to get through each day. 

I detach to stay sane. 

I hate the fucking neurologists we have been forced to see by default. Only trying to do their jobs but their methods make matters worse. 

Drones put to work by hierarchies to synthetically remedy seemingly abnormal biological manifestations. 

I question that the blame belongs to the same group of medical professionals for causing this retched disorder in the first place! Using the guise of healing to beef up the pharmaceutical industry. You prescribe on a whim but you aren't there for the aftermath.

Your pitocin that so unnaturally set her birth into action...

Your delay to come to her aide when she was in distress in my fluidless and  constricting womb. 

Your medicating the pain I faced after you cut me wide open to get her 'out'. 

Your convincing tone when you told me it was time to vaccinate. 

Your recommended schedule....

I want her back. 

As a society, we have been taught to blindly trust these doctors. What they say goes. 

All those years in medical school and yet they have no clue know what's right for my child. 

She's delayed. 

She's changed. 

Slowly becoming more damaged. 

She's always getting worse. 

That's the only constant I've found. 

And a note to the believers: 

Yes!!! I've prayed for her health and healing!!! 

She's on every prayer list. She's loved. 

Yet, this experience slowly makes one loose faith. 

I pray for her comfort now... 

The healing part... more sure that it can't be done based on multitudes of real life accounts of the exact opposite. 

When will she actually be able to be a kid? She's walks around in fear of the next seizure event. She lacks language skills to seek help, instead she's acting out big time and can't comprehend how to stop acting that way. 

I want her back. 

Oh yes. 

Positive thinking. 

I've been trying so hard to be positive. 

You see my smile right? Well it's real. I AM happy about so many elements of my life. 

This part... this is tragic really. 

One year ago she seemed better. 

I look at old pictures and see a healthier, more bright child. 

Her skinny body :(. 

I see ribs. 

The huge bulge on her frail chest! 

There are no excuses for this.

I want her back. 

Fighting the Guilt

Feeing torn. Yet I need to place my needs first. It's my turn again. I detach (with love). I've succumbed to allowing others to care for my daughter. The primal need to be present for every single seizure is subsiding. I can walk away but more than likely, it's always going to be just plain fucking hard! Each and every time, it's an inward battle. Society tells me I'm selfish, yet the stamina needed to keep placing one foot in front of the other makes it a god damn requirement!!! I'm numb. Desensitized to a certain degree... Medicated to keep my emotions level so I can function. I need to be that last tree standing. Rooted, strong...firmly planted, in the eye of the storm; on the very edge or fully submerged. Do I wait until it's too late to indulge in my dreams, or do I do it... Now, think now. 

What the '=#%&'?

Is some kind of spiritual obstacle course or some type of mean trick!?! Do I really need to run marathons as a mom on a day to day basis! Can someone clone me so I can be a nurse, a caseworker, a pharmacist, a doctor, a playmate, a psychiatrist, a entertainer, a friend...? I wear too many hats. Over and over I'm left with questions like: 'Why would God do this to us?' It's plain cruel and unfair!!!  This hard work can't be all for nothing either! We can't just live and die. There must be a reason, some direction, some bigger plan, some chance of enlightenment!' I'm loosing the people I love to darkness, to the unknown for hours, days, weeks, months, years... I just can't accept so much of the world's suffering. Why are some of the sweetest souls tortured while others appear to be left unscathed? Or does everyone have their own version of misery?

Over the past week I've been kicked, bit, head butted, had objects hurled at my head, I've been growled at... I've had to clean urine out of my child's clothes and bedding because of these damn seizures (Diapers/depends are waiting for us at the pharmacy)! I've had to hold my child in safety holds to keep us safe. Belongings have been destroyed. I've made hundreds of phone calls for both neurological and mental health like a phean. Hell, I've even considered hospitalization. Like the kind where she's in a ward with paid professionals who know how to ease medication transitions. Tonight she refused her meds from me after a seizure. It's so hard working my ass off trying to help this little being then have her snub me! What a thankless job this can be but yet... Somehow so rewarding. Life can be full of so much joy but also so, so, SO much pain. 

Trust mothers over doctors

It's that crazed maternal roar that comes blazing through like a storm; pushed into survival mode, I shout, I WILL NOT LET MY DAUGHTER SUFFER ANY LONGER!!! My poor baby has suffered for way too long! You saw the vomiting, the Nystagma, the slouch, but you did nothing!!! You don't listen enough! Mothers are in the front lines. All you have is a online database fill of COLD statistics. GUESS WHAT YOU NUMBSKULLS!?! IF YOU HAVENT FIGURED IT OUT YET, YOU WILL NOT FIND ANYTHING TO HELP YOU HELP MY DAUGHTER IN NUMBERS, STATISTICS AND QUOTAS... You will have to be creative, analytical and an outside the box thinker for that. Like Albert Einstein smart. Yea, that kinda smart... 

I knew it was the Banzel, my close friend Jill knew it also, FIRST HAND. We have other mothers too who would vouch that post-anesthesia, banzel becomes harder to metabolize in one's system!!! This was the cause for all the vomiting and Nysgagma! She was fine 12 hours after lowering the Banzel dose... But you aloof and stuck up doctors won't even acknowledge why that is... What!? Because it's not in your medical journal yet!? Please stop trying to fit her heart-shaped peg into your boring SQUARE HOLE! My instincts are so spot on. Are you intuitive like me? Have you watched her every move like a predator stalks his 'prey'? With first hand life experience and the ambition of a warrior, these mothers know not just as much, but often times MORE than you! Yea, without a Ph.D. from Havard, Yale or whatever other name you call your hoity toity Ivy League school. We have blazed right by you. Don't act like you are superior, wise, all-knowing. You are NOT above me. Just like as a teacher, I'm not above my students and their parents. Please, I beg you, just be my partner in this. Respect my opinion. Empower me even more to help my child! Connect me with others who may be able to help her. Can you live with yourself at the end of the day when you think you've done it all, and just quit. I never quit... You are supposed to be saving lives here, YOU DONT GET TO QUIT!!!

2015 Medical investigations/advocacy for Izabelle Hamlin: 

Medical Merjiuana - CBD THC THCA daily, THC for rescue dose trailed up to 25mg with no change - used two dispensaries and two caregivers before finding the right one 

Get a Service Animal - Pearl

Meet with Dr. Sulak - start vitamin D, Omega 3 fish oil and multivitamins 

Letter to the senator

Fight with DHHS for behavioral health  and nursing servicing 

Neuro psych evaluation 

Psychiatric evaluation - ADHD, anxiety 

Epilepsy foundation visits Izabelle's school

Start Reiki treatments

Metabolic and Extensive genetic testing 

Med trial with Banzel

Emergency med trials with lorazepam and medazolam 

Lumbar puncture for neurotransmitter level 

Third MRI - Boston Childrens 

Dr Pearl and dr Sanchez at Boston Childrens 

Visit Dartmouth Hitchcock's neurology department for Neuro consult 

Visit Long Island Childrens Hospital for Neuro consult 

VNS surgery 

Some kick ass letters: 

Tuesday morning message to Maine Med Neurology:

I'm wondering if the Onfi comes in 1mg tablets. I think some of her behavior changes are related to new side effects from Onfi, not a withdrawal from diasapam. 

She's irritable and becoming aggressive. I never saw aggressiveness with the diasapam withdrawl. Can we split her dose over am/pm 2.5 am and 2.5 pm? Or if the tablets come in 1mg we could try 2mg 2x a day?

I am also interested in what Dr. Henninger has to say as well. 

No seizures so far. She's sleeping so soundly it's a bit alarming!!! 

His reply today: 

Not a common side effect of Onfi. We could try stopping for one week and a retrial or decrease to 2.5 

My immediate reply: 

Yesterday, Izabelle become so violent and unreasonable that I had to pull over at a friends house while on the way to Portland to unhook her eeg. She was in a rage and threw every object at me from the back seat. She was also pulling my hair from her seat. This is very out of character of my daughter. She has only behaved this way with Felbamate. THIS IS NOT A PART OF THE DIASAPAM WITHDRAWL. She is merely playful and ADD with that. 

I have taken her off of Onfi myself. I will keep you posted on how she does today, but I have passed her off to her father as I have reached my limit with behavior and care taking. It's his turn. 

"Not a common side effect" means absolutely nothing to me. My daughter is not common!

If her seizures return full force, I may consider 2.5mg, but at this point, she could have very well been admitted to a psychiatric hospital if she continued at 5mg and I will NOT allow that to happen.

Embracing the moment

She lives each day in the moment. 

In pure joy and innocence as she moves through each experience. She is a symbol of strength and hope. She is pure love and creativity. 

I've learned from experiencing my child, that I too need to slow down and savor every minute. I was blessed with an angel child. I honor and am grateful that. She is my blessing from the Gods. 

She seized today. 

The educational team at school handled it. And you know what, we are both ok. It's ok to allow others to care for her to. She had one full week without a grand mal. She's been so alert, aware and age appropriate!!! It's been glorious. 

This time, she bounced back faster. We are weaning one Med at a time; in hopes of more cognitive brightening.

I live for each moment spent with her. My separation from her father is a healthy boundary that someday she will learn from. My life choices will hopefully inspire her to be authentically herself and to make good choices in who she chooses to surround herself with.

"All my prior romantic relationships; each of them happened for a reason. They were each a part of my process. 

I learned to love myself and to set healthy boundaries one day at a time. 

That was not modeled for me as a young child. 

Please don't judge 'my process'. I'm certainly not judging you by yours."

My alone time on the weekends gives me the chance to recharge so I can be fully present and in the moment for my crystal child. 

It's ok to take care of myself! It's ok for me to even have fun. It's ok for me to fall in love and focus on other relationships. It's ok to ask for help. 

This child is surrounded IN LOVE!!!