Broken Hope and Seizures

I have not been writing or updating you all and for that I am sorry. It was always my intention to be as honest as possible here and open our story up so that everyone could get an honest look at what its like to parent a child with severe and complex disabilities. I kind of feel like a fraud, like I've been lying by omission. But honestly its not until recently that I have been able to see things clearly. To get back on the uncharted track that is our journey.

You see last July my family was hit with yet another rare diagnosis. This makes super rare disorder number three rested upon sophia's small shoulders. The weight of it broke a piece of my heart that I honestly didn't know could be broken. My hope.

It all started just shy of two years ago, when luis and I were playing with sophia tickling her and trying to get her to interact with some stuffed toys. One moment she was laughing, deep joyful belly laughs. The kind that are naturally contagious, you can't hear it without laughing yourself. Then out of no where she had a very sharp and deep intake of breath. Her facial expression changed for just a split second from joy to panic, then it was over. But only for a moment, because for the next three minutes she would repeat the process every ten seconds or so. With each sharp breath getting deeper and eventually it began to cause whole body muscle tone changes. With each intake her muscles would tense drastically, her left eye would water and her skin felt sticky with sweat. Up until that day I had never seen her sweat. Up until that day I have never felt that kind of deep uncertainty. Once it was over it was like it never happened. She sat in her fathers lap like nothing had occurred at all.

After seeing this pattern emerge a few more times we made an appointment with her nuro-genetacist and like the little rock star that she is sophia had an " episode" right in the doctors office during the consult. Her doctor immediately scheduled us for a three day inpatient video EEG and my heart sank. This would be Sophia's first real hospital stay.

I had always really prided myself on being able to keep her out of the hospital. So I felt a little bit like I had failed her. As absurd as that is, I just wanted to be able to protect her and take this away. When you have a child with a rare and complex diagnosis you become sort of afraid of the hospital. Rather then it being a beacon of hope or help it becomes a symbol of struggle and terrifying possibilities. I have more friends then i'd like to that have checked in for something minuet and due to a tragic chain of events never got to take their babies home again. So even a routine test had me in tears, fearing for the second foot to drop on our family. I could almost feel everything about to change. Deep in my bones, in the place where a mothers intuition is born, I could FEEL that something was wrong. I just knew this would be another marker in our life of before and after.

The three day, two night hospital stay was much harder then I had expected it to be. Its like being in a jail cell of your worst fears. Its impossible not to race through all of the worst case scenarios while you watch your baby get 20 some odd wires glued to their head and body. Its impossible not to curse at the heavens for your hardship when your child wants to be able to get up and stretch her legs, but can't because she confined to her bed. Most of all its impossible not to sit up and cry as you watch your child sleep wrapped in gauze and attached to blinking machines. Knowing that in her mind she is likely dreaming of a place far from the confines of that bed. Wishing you could take it all away, give them a less complicated life, a life free from all of this.

Sophia's father had no real place to sleep as they only give you one chair to sleep in, but he couldn't be away from us. He laid on the hard wooden window seat covered with just a bed sheet at night, getting up before the sun to slip out for work. I know he fears and feels just as I do. I'm always so thankful for his constant, steady and reassuring presence. Every time I would let a tear slip he would remind me that there is nothing we can't face together.

After two days in the hospital room waiting for sophia to have an "episode" Luis could tell I really needed a break. So after I laid sophia down to sleep and he told me to take the car, go home and shower, eat a hot meal and come back when I was ready. He would hold down the fort a while I was gone. I got out of the hospitals parking garage and less then a quarter mile down the road when my cell phone rang. Luis was on the other end and sounded panicked."Its happening now!" was all he said. I told him to push the button and I would be right there. Hung up and did a U-turn. Then laughed to myself and cursed outloud... Because OF COURSE she would have a "main event" as they called it, as soon as I left the room! (insert eye roll here )

I parked in a handicapped space tossed up our permit and literally ran, full clip into the hospital, past security and to the elevators. Which seemed to be crawling of course. By the time I got back up to her room Sophia was cradeled in her fathers lap while nurses and a doctor stood over and around her. Luis' teary eyes met mine and at the sight of his pain I started to cry. Its not easy to see your child be the feature of one of those everyone crashes into the room events at a hospital. This episode appeared to be more severe then the ones she had been having and there were talks of giving her an emergency med to snap her body out of it of it didn't subside. Thankfully within a few moments it began to wane and she slowly came back to her normal self. I was told a seizure specialist would examine the video tape and the brain patterns and someone would be here to talk with us the next morning.

The following day luis had to work so I waited for our news alone. When the doctor finally came in they told me "The good news is we got good data from last evening, the hard new is what we saw does not fit the typical patterns for any known form of seizures. It most closely resembles Infantile Spasms due to epilepsy, so that will be what we diagnose her with. Unfortunatly Infantile spasms are the hardest form of seizure to treat and given her advanced age and brain condition its unclear to us exactly how to proceed. You will need to follow up with her doctor to discuss treatment options. We'll start her discharge papers now "

That was it . They just came in dropped a bomb in the middle of my life and walked out. I was officially in the after stage of this life changing experience. I was just thankful to see then unhooking my baby, to be packing my bags and to be preparing to carry her out of that hospital. I would deal with the rest later.

After a year we have still not found an effective treatment for Sophia's condition. It has had horrible impacts on her sleep patterns. She can no longer nap without being woken by a seizure. She is on TWO sleeping medications and TWO seizure medications just to be able to get a good nights rest. Even still she will have nights when she is woken by seizures. I no longer sleep well because I'm always in fight or flight mode waiting for her body to betray her. Her epilepsy could potentially get worse and her seizure could evolve into more severe life threatening forms. It threatens her physical and intelectual progress. We have cycled through four different seizure medications and each one was as useless as the one before it. Each medication carries side effects that have the potential to change her personality and her physical stamina. In order to treat one issue we end up causing more.

It has been a very difficult year for us all in terms of her condition and her treatment. Honestly I have struggled a lot to not feel defeated, like a failure. No doctors seem to want to do more then throw more medicine at her. The side effects seem to be reduced to nothing more then inevitable colllateral damage. Long gone are the days when all I had to deal with was a child with an extremely severe delay. Now we fight for her, observe behavior, research and rally for more natural courses of treatment such as medical marajuana. Which we hope will be our next step, in the form of CBD oil, now that it has been approved for use in our state. This road will be long and hard . It could steal her progress. It could morph into a stronger uglier beast and if that happens it could even possibly kill her, god forbid. The condition 'sudden death in epilepsy' is now my singular biggest fear.

All we can do is exactly what we have always done. Stick together, try our best, advocate for her and most importantly... LOVE HER just as she is. Make each day of her life as much as it can be. Help her learn and grow. Pray to god for his guidance, strength, and mercy. Fill her days with love and appreciate what we do have. Which is the chance to make tomorrow brighter then yesterday.

Together there is nothing we cannot endure. Together we are. Together we will stay.

Thanks for reading .