Crossroads

Dear Christian,

I fumble over my words thinking of you. I woke up yesterday to you sick with some diarrhea. I was a little frustrated because it was 5am and that meant I had to sit with you, and watch just so I could circumvent you making a huge mess. I sat on the toilet and just stared into your eyes as your head rocked back and forth. You brought your hand out and said mommy. Christian, you repeated it about 30 times before it was time to get off the commode. I helped you clean up, wash hands, and back to bed we went. I sat quietly on your bed and rubbed your head just wondering what thoughts go through there. How could it possibly feel to seize every day… all day… mercilessly.

I mean if I get bothered … how must you feel at 13 having your mom wipe up after you. How independent you have shown you wanted to be… by all the no’s you express. How you circle back to me quietly when you are scared or hurting. How could I be so selfish at times to not constantly consider your plight. I see you struggling to maintain eye contact. I have caught you mid fall during an episode. I watch you foam and moan out of you mouth… how can I forget the toll that ONE seizure has on you. How can I pretend the seizures do not affect every single subsequent action you have during the day… Then to remember you my love seize more than 20 times a day… over a span of 10 years…

I am sorry my love.

Sigh.

But today is a new day, I am sitting on my couch sort of numb. We went to the neurologist yesterday and they told us he MIGHT be a good candidate for epilepsy surgery. I know it is something I considered in the past, but the reality it might come true scared me. I have been planning for changing his diet to the ketogenic diet. I was not prepared for the news he may need to undergo brain surgery.

Yesterday’s Recap

Well, the neurologist called with an update today after speaking with the team… and they want to proceed with the surgical route. We want to see if this may be a good option for him.

I am scared.

I am so very scared.

I am selfish.

I do not want anything bad to happen to my baby.

I know this could help him greatly. I know we have a long time between a consultation, a PET scan, more EEG monitoring… just more. I just had to get it out… that this entire process scares me. I do not know much about this and I will be diving head first into all the information I can find.

Say a prayer for my baby if you find the time.

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Christian & Mommy – Letter A

In these 6 minutes you will witness a raw and unedited account of Christian before and after a seizure. He and I embarked on a new journey. I set out to capture a few minutes at the end in order for me to set baseline.

Recently, he has been showing interest in writing so I wanted to teach him. We are starting with the letter “A”. Never thought I would capture a seizure in the same sitting.

History: Chris is almost 13. He has autism and epilepsy. He is on daily medication but still experiences seizures on a daily basis. This breaks my heart, but it is simply the reality of our last 10 years. I had no idea he would seize while filming this… but I am grateful we were able to capture the moment. Being able to capture this daily occurrence will help his doctors in assisting him. This also brings transparency to our household… to loved ones.. strangers on our journey. Not everyone knows that there are multiple types of seizures.

Not everyone understands the toll it takes on the brain for those who experience a seizure. Not everyone gets why he drops in the middle of the store only to get back up and walk. Not everyone will even care. But to those who do… to those who would like to share the ups and downs with us…

We look forward to hearing from you.

Until next time,

LaGloria