They told me ...

Some days, I just don't know how I'm still standing. 

These seizure full days play with my ability to stay balanced, whole and healthy... They interrupt work, play and our basic needs. 

The society we live in is not set up to support a family in crisis like this. The fragile human faculty can only carry so much load at once before collapsing. Life in America for middle class workers is a pressure cooker, let alone throw in a incurable illness. 

They told me I make too much money for food stamps or free health ins. 

They told me I make too much money to draw from Izabelle's social security.

I proved to the state that Izabelle's condition was so bad that we needed secondary insurance. 

I proved to the state that Izabelle deserves both nursing and behavioral services. 

What happens? The govenor cuts funding that helps children like mine. No one wants split shifts before and afterschool so we pay out of pocket.

We prove we need more help and get respite care services just to find out no one can service us in the rural area in which we live.

What am I learning...

I know just how little income i need to make in order to get state assistance... $23,500 or less.

If you live somewhere rural, you don't get help... So move to a city. 

Being a single mom is impossible in this situation so find someone to live with fast... 

Family should come first but my own biological family is too busy and caught up in their own lives to help. My new family is my community. 

I'm done with the idea of the American Dream. Fuck that shit. 

Exhausted all my sick time. Again.

Letter to my supervisors:

Rough seizure morning again. I hope she will snap out of it. I need to call out: I was to teach at Whitefield, take my child to a new psychiatrist in Rockland then retrieve her new medication in Auburn... All in one day, and we are moving into a new apartment tomorrow (I have sold my house to have more time and money to take care of my child). I gave Izabelle emergency seizure medication to stop any more from coming. This happened Wednesday except my mother in law retrieved her so I could teach and finish a formal observation at Windsor. Seizures come unannounced and knock us out for the count. Leaving her like this goes against all of my motherly instincts. I'm sorry my child's illness interrupts my ability to be a consistently present employee. There is no cure and the doctors say her condition is worsening as she grows. Dr. Morrison, Maine Med Neurology, will be faxing a doctor's note. I know I'm out of sick time and cannot take any more until March 24th 2015. Until then, I will need permission to take leave with out pay when necessary. 

I'm waiting for solace. 

The animals all know to lay with her now when she's in recovery. 

The beginning of our medical marihuana journey

Izabelle has been on medical merijuana for over a month now. She started on a tincture from the Wellness Connection of Maine. The tincture was given 4-5 times a day. We did see a mild decrease of seizure activity even with the level of Treleptal being left at a much lower dosing when we started. Mild decrease and 3/4s of the medication was a good start. 

Now the one problem with the medicine provided by the Wellness Connection is the fact that they have not been tested. There is no way to tell how much THC and CBD there is in each dose, or even in each bottle. 

We next were led to the Remedy Compassion Center where not only do they have tested product by a very high CBD strain very similar to the one developed in Colorodo. The only difference is CBD in Colorodo has about 10grams more CBD per ml then they do at this dispensary. For us, this is a good start because believe me that if this doesn't work, I would most definitely relocate our family to Colorodo to cure her of these horrible seizures. 

This is a picture of Izabelle with the co founder of the Remedy Compassion Center, Jenna. 

We've barely made it a week and Izabelle's seizures have increased. I had a phone conversation yesterday about tincture versus edibles... Edibles stay in the system longer but not at the same levels and it takes about 30minutes to 1 hour to become effective. The tincture is effective within minutes but only stays in the system for up to two hours. I am going to give it about two weeks but I'm beginning to believe that tinctures given at the most frequent seizure times will prove to be more effective. 

Time will tell. 

Mama breakdown number two

I cannot even begin to describe how taxing 2014 was on me not only emotionally but physically. 

About two months ago, Izabelle began waking up to three times in one night seizing. I have a baby monitor in Izabelle's room to alert me... These new seizures start with a shrill high pitched SCREAM. Which startles me abruptly into rescue mode. I run and flip Izabelle from her belly to her side as she convulses so she doesn't suffocate. I realize that shortly after the start of these events that I began to wake up more in the middle of the night. I couldn't fall asleep. I became more and more tired and continued to compensate for the lack of energy with caffeinated drinks throughout each day. My trip to New York to see family and the pressure to perform as well as advocate for Izabelle's new needs within a new environment and the added pressure of friends, family, work and basic life expectations basically made me collapse and break down emotionally. I had such a hard time making the decision to go back to work full time again. I wanted to stay home and take care of Izabelle myself. Because of the house not selling, I had to maintain the same income, work even harder and find more help at home. I have done all these things but not without harm to myself. I neglect my own needs all the time. I over extend and burn out. I ended up having to take a week off. I saw my doctor numerous times. My blood pressure was so high and I was In emotional and physical distress. My doctors told me to take the week off to take care of myself so I had the strength to keep caring for my sweet high needs child. I couldn't keep burning at both ends. I'm hoping to develop new routines in selfcare so I don't end up in these dark caotic places again.

Wish Granted

After a doctors visit in Wiscasset on Thursday last week, I decided to stop at the local animal shelter to fill out a wish list for a new dog. At the top of my list was pug and number seven was beagle. I handed in my paperwork to Peggy, the woman at the counter, and said that she had just the dog I had described and brought out Pearl, a beautiful 3 year old, spayed female. It was love at first sight. 

I adopted her on Saturday with the hope of training her to be not only a therapy dog but also a seizure alert dog!!!

This was Izabelle's first time meeting Pearl!!!

This is my adoption picture!

She is wonderful with Izabelle.

We have already started to work toward some of our goals. 

We have all been sleeping together so Pearl can become accustomed to sleeping with Izabelle. 

Next I will train Pearl to sleep in Izabelle's bed. 

So far, during Izabelle's most recent seizure at my house, I called Pearl over to sit with us so she could smell Izabelle. When the seizure seiced, Pearl and Izabelle sat on the couch together for the postictal period. I was impressed by how well Pearl did. I was also grateful for the soothing act of petting a dog during this hard time. 

Many wishes have been coming true. 

Our new fur baby has completed our little family!