I can't really write a lot of things on this blog without explaining a little of our history. So here is our epilepsy story- or my version of it as the mother. I will try to make it as short yet up to date as I can.
Kevin and I were high school sweethearts. We were married July 6th of 2002 and had a beautiful baby girl in September of 2003. We named her Halle RaNae. She was too good to be true. An angel baby with thick auburn hair, who slept 14 hour nights from the time we brought her home. Hands down, she was the sweetest, happiest, most beautiful baby I had ever seen. Not biased or anything :)
I remember thinking, "This is it?!? Why does everyone complain about parenthood being hard? This is heaven!"
Ah, the thoughts of the naive.
Two years went by. We built our first home in Eagle Mountain. Kevin started the load of a full time job, full time student, father and hubby. Life got a whole lot busier, but we learned how to juggle. We happily welcomed our second child, our very own handsome Drew Kimball, to our little family in September 2005. He was also an amazingly good baby and wrapped his mom around and around his tiny perfect fingers.
Drew had a rough patch the first year when he stopped growing or developing from 2-8 months. Tests were run and nothing was found. Then one day something clicked and he was better. Over the next few years he grew healthy and strong, catching up in size and development to those his age. We were so grateful and counted our many blessings. In our beautiful home and with our 2 beautiful kids, life was very full.
January 25, 2007 showed up and out of the blue our world turned upside down. Halle started having hundreds of seizures -day and night- and we struggled through loads of unanswered questions. Why? How long will this go on? Is she going to get better? What damage is this doing to her brain? What kind of life is she going to have...
Helpless.
There isn't another word that explains it so well. We helplessly watched as first the seizures, and then the drugs transformed our precious little girl. Six medications later she was still having seizures. She was also sick. Angry. Confused. Traumatized. We had to put her back in diapers. Tics, sometimes several at the same time, began and added to the surreal situation. She became terrified, panicking about things we couldn't understand. Simple things, like getting her in a car seat or getting her dressed became daily battles, often ending with both of us in tears.
Time at the hospital, counting and clocking seizures, afraid to turn my head for a moment became normal. I deeply grieved for my little girl, and her life before she got sick. I missed just playing with her. Enjoying motherhood with her. I felt lost.
I remember looking over one day and seeing my patient baby Drew, realizing I couldn't remember when I'd last had a moment to think about him. I felt like the wind had been knocked out of me. I missed my little boy. Later, during a stay with Halle in the hospital, Kevin's family brought Drew to visit us. When I had left him there he was a baby but when they brought him to me he was walking. I had missed it. Nothing was ever going to make it okay. It was an excruciating time for our little family.
After several months a miracle happened. Our ward family held a special fast for Halle to get well. We have not seen her have a single seizure since that Easter Sunday. The sweetness of that tender mercy from our Heavenly Father leaves me indescribably raw and emotional even now, almost 5 years later. Why we were so blessed, I do not know. I only know it happened.
Life did not just pick up right away, though maybe it could have if I hadn't been so shaken. The fear of it returning, or of it happening to Drew plagued me. I was haunted by memories of the seizures. The look in her eyes as her body seized, the times she got hurt from me not being fast enough to catch her .... Etc. I learned a lot over the next difficult time of my emotional recovery. A lot about faith. Living in the present. Eternal perspective. Definatly a whole lot about myself- good and bad.
We ended up moving to Provo. We needed to be closer to Kevin's work and school. I needed a restart in my life.
Everything changed again in March 2010 when our sweet Dawson Riley born. He was perfect, and the spitting image of Kevin. It was love at first sight for all of us and we couldn't get enough of our new little man. The next several months were tricky however, trying to adjust to having our hands even fuller than before. Kevin continued (and still continues) to be the most dedicated father, employee, and student I know. Leaving first thing in the morning, getting home after midnight each night, helping me catchup at home every weekend, spending every spare minute he has with his kids...year after year. Breaks are too short and rare, stress is way too high, but he just keeps going. I love that man.
November 2010 was the start of another nightmare. Dawson, 8 months old, started seizing every day. Less than 2 weeks later, while recording Dawson's episodes for the doctor, I saw Drew have his first seizure. Since I have written a lot of that experience here in my other blog, all I will say now is the next few months were indescribable.
Drew's seizures were under control with medicine after about 2 months. Two horrible, horrible months. Afterward I was left a different person. The adrenaline that got me through the days wore off. I was left spiritually, socially, emotionally, financially, and physically exhausted. After a few months of severe depression, I decided to focus my life on finding a new normal normal. And that is what I am still trying to find.
Today:
Halle is still SEIZURE FREE! She has struggled with migraines and tics ever since but we are very, very grateful for the miracle she is. This last December she had a follow up EEG which was "normal for her age". What a wonderful blessing for her, and our entire family.
Drew had only one seizure since- in November 2011. It was a different type of seizure than we have seen. He went from being awake to a sleep-walking-awake where he could communicate but didn't know how to do basic things. His eyes had that seizure-glaze, and he didn't know where the bathroom was, how to wash his hands, etc and kept turning in confused circles. After about 5 minutes of this, he "woke up" with NO memory of anything that happened. His kindergarten teacher called me the next day and said he had seemed different at school, was distracted and tapping his chair etc... So We were extra nervous for a while but nothing else happened.
Drew also had an EEG last month. Unfortunately his news wasn't as good as we were expecting. I guess that it showed just as much abnormal activity as his last EEG- which was done in December 2010 when he was having a clusters of 4-8 seizures about every 1 1/2 hours. Very, very discouraging. He also had an MRI, but I have not heard back from his results. His next appointment is February 21 and we will learn more details of both tests then.
Dawson has not yet had a single seizure free day since his started. He is currently trying a third medication. When we change Meds or up a dose, it seems to help or change the seizures intensity for a little while, and then they start building again. Because of his age when it started, and this being the age of so much brain development, it is a huge concern.
The seizures are always changing. Sometimes he has good day where he only has 5 or so. Other times he'll have several episodes an hour. They range in length and strength as well. He also has after-seizure drops (usually around 5). These can be as mild as a nod and slow blink, to fully slamming him to the ground. It is so, so, so heartbreaking to watch.
In June, Dawson stopped being able to use his right hand normally. We stayed in the hospital in August for a 72 hour video monitored EEG. This was so hard because he could not understand, and could not get off the bed... It was a long couple days. He also had an MRI and they found a lesion in his right lobe. Unfortunately, this hasn't given us any answers. Only a whole new load of unanswered questions.
In October he got a protective helmet to prevent TBI (traumatic brain injury) from the constant falls on his head. This has been a huge blessing for us. I am sure I have heard his sweet head crack on floors, the table, the shopping cart, corners of furniture, the stairs etc, thousands of times by now. I can't describe how big of a difference my life is with that helmet. I can turn my head for a moment, and be more than an army's length away, without worrying I won't get there fast enough. I terribly miss his look without that bulky helmet. His handsome hair and head is hard for me to cover. Obviously I know that doesn't really matter... But it has still been hard for me.
Toward the end of November, Dawson started to walk differently. He seems to drag his right side differently than the other. He is much clumsier than before. Sometimes I think he looks like he has only been walking a month or so. It makes me sick to see him going backward. It's such a helpless and horrible feeling.
Then, just last week after he had an episode, he couldn't open his right eyelid. It only lasted maybe 30 seconds and I haven't seen it since, but of course it leaves me asking...what is coming next?!? How is this going to end?????
So, here we are. Hopefully that covers enough so the things I write on this blog make sense. Whew. It sure does feel good to write again.
G'night for now :)
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