Before The Dawn (Seizures No More – Part 9)
At this point in our care Justice seemed to be more aware of what was going on in her body. She would sometimes verbally warn us of an oncoming seizure. These symptoms included her heart rate increasing and beating weird. She would say ” Mom my heart is beating” and almost immediately enter into a seizure.
After the one week intensive was done we went back to our regular schedule, which was 3x a week. Justice remained seizure free during the days and only having them during the night. A lot of shifting was going on in her body. We had never experienced any bed time struggles up until this point. Bedtime suddenly became SO hard. She could not settle down. Her brain was too busy. We’d get the kids down for the night around 7:30/8 and Justice would still be awake, struggling to wind down and fall asleep. The only way she’d fall asleep was after her first night time seizure.
I specifically remember one night she kept coming in and out of our home office. All the kids had been sleeping for 3 hours already and Justice was wide awake. She sat on my husbands lap and began to tell him that she just couldn’t fall asleep. Moments later she had a seizure and shortly after fell asleep. We placed her in our bed where she had been sleeping for the past couple of months, so that we could monitor her and keep her safe throughout the night. This had now become a daily thing and lasted for a little over a week. This was a major change and we were just hoping and praying for no serious regressions.
Enjoying The Days
Now that Justice was no longer having seizures during the day I felt comfortable going out and having some fun with the kiddos. I decided to take them to the Zoo and I invited some of Justice’s favorite people, her cousins. She was so happy! Justice got to hang out with some of her cousins! That was a great day! It was the first time in a long time where I had felt happy and absolutely no paranoia.
As the sun started to set, I began to dread nightfall. I knew a seizure was coming soon. On our car ride home while all the kids were sleeping, Justice had a seizure. It was very mild. However, I can’t tell you the anxiety I would get while driving and anticipating a seizure. Trying to operate an SUV and help your child while they are seizing was one of the hardest things I’ve done.
What’s Going On
Justice’s behavior began to change again. Symptoms had subsided and now they were returning. We did some scans and the scans confirmed that her body was working through some changes. She was regressing again. Why? Why was she regressing after such amazing progress? We decided to do another one week intensive. At this point things were pretty bad again but her scans were showing improvement at the same time.
Full discouragement set in when her day time seizures returned with a vengeance. We thought things were getting better and now we were experiencing regression after so much progression had taken place. The chiropractors tried to help me understand that Justice’s nervous system had been overstressed for a long time. And that meant that her body had become so used to the stress and tension. In order for he to get better, she needed the stress to full leave her body. To my understanding that meant that her symptoms were bound to increase outwardly as her body gets them out of the inside. So that meant more seizures and behavioral challenges.
Mayday
7 months into our care and we felt like we were back at square one. However, we persisted. We kept praying. We kept believing. We kept going to our appointments. Justice’s seizures were at all all time high. My depression and anxiety was other worldly at this point. Looking back it was only by the grace of God that I was able to function.
Justice’s 8th birthday was approaching. My due date was approaching. I had no idea how I was going to have a homebirth with all of this going on. I had no idea how I was going to have a newborn while simultaneously being helicopter mom to Justice. I felt completely overwhelmed! During this entire season I had been diligently and fervently praying over my precious girl. I had never prayed so hard, specifically and faithfully for anything in my life. I so desperately wanted God to heal her. I have an entire post dedicated to the spiritual side of this season.
A specific prayer of mine during this time was for her seizures to stop completely by her 8th birthday and before welcoming my 5th child. I was truly believing God for this! The weight of it all was becoming too much to bear. This was completely overwhelming me and it was becoming much bigger than the capacity I had to handle it. I was barely keeping my head above water. I felt like I was going to lose it. Lose what exactly? My ever loving mind.
Little did I know what we were in for the following week. Justice began having seizures almost every two hours throughout the night. Justice was sleeping in between my husband and I. I’ll never forget the fear we’d wake up with all night to find our daughter seizing.
After that week was over we entered another week full of tonic- clonic (grand mal) seizures. Justice had over 20 grand mal seizures in the span of 5 days. WHAT WAS GOING ON?
The Week Of
The last week of May was the absolute worst. How could things get any worse than they already were. Justice was just having seizures left and right. I remember a specific day where we went to Best Buy to purchase something and while we were paying Justice looked over to me and said “I feel like i’m going to have a seizure” Instantly she fell into my arms and we both fell to the floor. I was on the floor holding her as she worked through her seizure. My husband carried her to the car and she knocked out. We felt so defeated.
Later that same day Justice was running up the stairs to tell me that her heart was beating weird and before she finished her sentence she went into a seizure and fell all the way down a flight of steps. I was in the middle of the upstairs hallway while she was running up to me. I ran as fast as I could but I didn’t get to her on time. She fell down the stairs and banged her head, all while having a seizure. I was hysterical and slid my pregnant self down the stairs desperately trying to get to her. I felt terrible.I immediately began assessing her to make sure she was ok. Thankfully she was ok!
Happy Birthday
It was the morning of our birthday (yes were birthday twins). We were so excited to celebrate her and do all the things that she wanted to do. Every birthday we decorate, make a cake and open gifts. The kids wait upstairs until we call them down for the big reveal. Moments before calling them down Justice went into a seizure and was too tired to participate in her traditional morning birthday celebration. We let her sleep a while and then woke her up so we can resume the festivities. When she had woken up she seemed completely out of it. I was devastated. I pictured our day going much differently. She was happy but her body was just exhausted. Exhausted from the week of grand mal seizures. Exhausted of it all essentially.
I just remember her face and how she seemed so dazed. After we did all the fun stuff, like eating cake and opening presents we left and headed to The Crayola Experience. Justice had been wanting to go for such a long time. We arrived and she was so excited. She was having so much fun and 45 mins into all the fun she had a seizure, fell over and hit her head. I’ll never forget the stares and the way my husband and I felt in that moment. I laid her in my sons stroller and allowed her to sleep for a bit. She was no longer interested in staying at The Crayola Experience and wanted to go home. My other children were having a blast while the birthday girl was laying in a stroller not wanting to be there.
We let the others play for a bit and then we decided to leave. We got home and it wasn’t even bed time yet but we told the kids to go to bed because we just couldn’t deal with anything. My husband and I locked our bedroom door and wept. It was a very dark night for us, as hopelessness settled in yet again.
We woke up the next day and Justice was very chipper and excited to play with her new toys. She went that entire day without a seizure and didn’t have any in the night either. Then the next day she went without a seizure as well.
