Today was a long day for all of us. My precious little angel "Diva" had a full seizure and 2 partials. Now I know most of you are going "Come on Jen and woman up." These particular seizures hit me as if I was driving 85 mph and slammed straight into a brick wall that didn't budge! You see "diva" started having seizures at the age of 14 months! They followed a hard 14 months. She died not once but 3 times before she turned 6 months.
She never hit the milestones the other babies or her siblings had hit by 6 months. She was 13 months before she pulled herself up. Looking at her you would never had guessed that. She was smiling and always happy. The night she had her very first gut wrenching seizure she smiled within 2 seconds of coming out of it. This was the day she had her tongue clipped due to being tongue tied. (Mommy was a big ball of mess!)
She went on for the next 4 years having seizures despite the medication. At the age of four they found her ear canals were blocked. She was 85% deaf. They unblocked the ears and placed tubes. Her hearing became perfect. Within weeks she was uttering words. She started singing. We discovered her love of music had increased.
We were told then that it would be a miracle if our angel was with us at her sixth birthday. That birthday came and went. The seizures stopped and her learning was taking off. She had started down the road that appeared to lead her to being on track for her age. Over the course of the past year we have noticed her short term memory loss. She was forgetting what she learned 3 weeks prior. As of last week we found out in fact she is now back at a first grade level. She is 9!
As I sat in her meeting at school and listened to those teachers go over everything my heart sank. We couldn't understand how this could have happened. Well, the answer hit me at 7 this morning when I walked in her room and found her having a seizure. Suddenly everything was clear. The seizures were back and they were back with a fury.
She had one on the way to the hospital and one in the waiting room. With each seizure I saw the lines on her face, the draw on her mouth on the right side, and the terror in her eyes. My poor baby smiled through it all. It never phased her, but took years off me. Her EEG was severely abnormal. So bad to the point where the Neuro Doc was questioning the reading. After 7 hours we left with a seizure medication to start, a Genetic counseling appointment, a date for hospitalization, and ton of stuff to process.
Most of all questions! How can this happen? What did I do wrong? Why would such an angel be cursed with something else? How can God have this kind of plan for such a strong little girl who has already suffered so much? It's not fair. I can't help but think of something a wise friend said to me, "God doesn't give you something you can't handle."
My little girl is so caring, so happy, so strong, and always sees the good in everything and everyone! I am so mad that I can't take this from her! To take the pain away and know she will be alright. The hardest thing to swallow is the fear of not knowing. The fear of listening to yet another doctor mutter, "You have to understand that this could be fatal. She could end up with irreversible damage. "Diva" could have an underlying condition that could result in a not so great outcome."
What is a mother to do? Right now I want to scream, hug the crap out of her, and wrap her in bubble wrap all at the same time! I am lost!
"Diva" at a week old
"Diva" at a year
I refuse to believe we can't beat this! I will not give up. My baby girl will be alright!