The special needs lifestyle is our normal, but I was happy to have a child who didn't have any "special needs". I was happy to have a child, who was the definition of "normal". However, I took it for granted. I didn't realize it until it was taken away from me, but I took that whole part of my life for granted.
Wednesday night, before Abbie went to bed, she had a seizure. She had been having these for a month before I realized what was happening, but what I witnessed on Wednesday, left nothing to the imagination. I was 100% positive that she was having a seizure. After some quick research on Google,
Disclaimer: I don't ever recommend parents Googling anything medical related, but who am I kidding... it's the first thing I do too.
I realized that Abbie had every symptom of a child suffering from Absence Seizures. I spoke with our on call pediatrician immediately, and he confirmed that what I was describing was an Absence Seizure. He recommended that we see our Primary Pediatrician first thing on Thursday, so I called the minute the office opened. We were able to get an appt at 9:15am, and off we went. At this point, I knew that they would only confirm it, but we still had some hope that this wasn't as bad as it seemed. Our pediatrician ordered an EEG, which he wanted immediately, as he was concerned about the frequency of these seizures. I was a little shocked when we were scheduled for this morning, but was happy to get it over with!!
I began keeping a log of her seizure activity as soon as we got home from the pediatrician, and I was astonished at how many seizures she had on Thursday. While they are brief in reality, those 10-15 seconds feel like a year. It makes me sad every time I see her brain, quite literally, take a break. Especially since 6 weeks ago, this wasn't something that was happening AT ALL.
At 8:30 this morning, we headed for Chippenham Hospital, and by 9:30, she was hooked up to a hundred leads on her head. The EEG was only 20 minutes long, and after only 5 minutes, they managed to trigger a seizure. I fought back tears, just as I am fighting them back now. Watching your child seize, is virtually one of the hardest things I have ever done. Abbie burned her feet severely just over a year ago. 70% of both feet were burned beyond 2nd degree. We jokingly called them 2.5 degree burns, but there was nothing funny about it. That day will haunt my memory forever, and so will today. Watching my daughter hooked to a machine as it monitored her brain activity during a seizure that they forced her to have... NOT FUN.
I have been through a lot of hard times with Brady. He had to be put under for his MRI, and for his ABR test. He is very behind developmentally and cognitively, and his condition is taxing both physically and emotionally. But the worst day we have had in dealing with his condition, was diagnosis day. I haven't watched Brady suffer, like I have Abbie.
This all feels like a bad dream that I can't wake up from. I wish I could make it all better for her, but once again... I am completely helpless. I hear about families whom have special needs children, that have the option of surgical or medicated fixes, and I am envious. Feeling helpless... BITES. My job is to protect my kids, and I am failing, miserably. I never imagined that I would be raising a special needs child, but raising 2... I don't know where to begin. Sometimes, I think that God may have misjudged me!! For some reason, he thinks that I am stronger than I actually am, but I have to keep fighting.
I fight for Brady & now I fight for Abbie.
I have been very blessed by the incredible love and support that I have received from my friends and family. I appreciate every single piece of encouragement, because God knows I need it. Please continue to keep my family in your prayers. Seizures are a game changer, and I am not a big fan of change. I keep trying to remind myself that I am not the one living with these issues. I am simply taking care of the people who are living with them. I'm trying hard to take the "me" out of this, and not have a pity party, but I'm human. I want the very best for my babies, what mom doesn't??
- Jessica
