In recognition of epilepsy awareness month I wanted to tell our journey with Zaki and epilepsy… I originally typed (his) epilepsy – and although he is the one with epilepsy, it is not HIS only. And with it being the eve of Thanksgiving I would also like to focus on the lessons that I have learned and things that I am thankful for.Zaki started having seizures when he was only four months old. The first type of seizure that he had was myoclonic. This is a very quick jerk. Zaki was not sitting up yet, and I did not recognize it as a seizure, it looked like a startle response to me. I told my husband that I would mention it at the six month well baby check up. By this time, he was having over a dozen of these a day, and was beginning to sit up. They now looked like head nods, and he would often tip over. If he was holding a rattle in his hand he would drop it. He had one in the doctor’s office during his 6 month check up and he said that we needed to get him in for an EEG an Electroencephalogram. Wow!? A What? Little did I know this would be the beginning of my honorary neurology degree, and all of the medical terminology that would accompany it.
LESSON 1: One can not beat themselves up wishing they did something when they didn’t! I always wondered if I would have gotten him in right away – if that would have made a difference? The truth is that I will never know, and there is not room for regret when you are in the fight of your life! Staying in the past often disables you from moving forward and doing all you can for the present. This is why runners never look back, not if they plan on winning! It would slow them down.
We got him in quickly for an EEG. Because we were not able to get in as swiftly with the neurologist, the pediatrician called. You always know it’s bad when the doctor calls and not the nurse. He asked me to pick up a prescription for depakote, and that my son had epilepsy. He actually thought that was the end of that phone call? Baffling! I began to ask a lot of questions, that he could not answer deferring to the neurologist – yes the one that we would not be able to see for months. The next morning I went to pick up the prescription for depakote. I had ‘googled’ it the night before. Something about hepatic failure, which I also ‘googled’ – more medical terminology! And not being okay for children under 2 years old? I was definitely becoming a cyber-chondriac quickly! I asked another slew of questions when picking up the script. He again deferred me to the neurologist. Hmmmmm…. Okay, I was catching on. I did not fill the prescription, and began to call daily to the neurologist’s office for cancellations. So after testing the squeaky wheel theory, I discovered that it worked! We were in within the week.
I could go on and on about the many many doctor’s appointments that we went to, specialists seen, tests done, tears cried, Dr’s fired, medications that failed, therapy sessions attended, and prayers answered. We have even tried pretty dramatic measures to help him. Weighing the cost/benefit scenario took it’s tole on us as a family. Zaki has cataracts due to the long term use of one medication, and is unable to sweat and regulate his body temperature due to his current medication. Another causing him debilitating body cramping and insomnia. To date Zaki has had well over 500,000 seizures. There was a long period of time that Zaki had in excess of 250 seizures a day - I would stop counting. He has had just about every seizure type there is including status. This is when the seizure activity does not cease. The brain does not relieve from the excited seizure state requiring emergency measures. In fact to this date I do not travel without his emergency meds to administer in case the seizure does not stop.
Lesson 2: Always give God the glory when He pulls through for you!
What a time for this lesson right? After saying how bad things were, I come with “Thank God for it!” Let me explain. We have had many many opportunities to request prayers from our church family and see God come through. We have had to become completely reliant on Him in this situation! It is out of our hands, and the doctors are baffled. After over 6 years, they are still not able to give my son relief from daily seizures. I can not depend on them. After 6 years, my tireless research has not paid off with a silver bullet to kill the beast. So I can not depend on myself either. We have seen every specialist including random alternative treatments like an herbalist, iridologist, acupuncturist, chiropractic, cranio-sacral therapy. You name it, we have tried it. Some helped, but none worked. Our son’s prognosis is not good. It is of such that he qualifies for a special waiver program in the state of CO called the pediatric hospice waiver aka the hopeful waiver. We receive palliative services through Pikes Peak Hospice, and he qualifies for the full time care of a CNA. To qualify for the waiver, the child "May not live into adulthood" So back to Lesson 2, and how I can say Thank God and give Him the glory? Our son IS still alive! He has pulled through with the help of God so far! We are thankful for the time that we have had with him. And I fully intend to have many many more years with him making me laugh, and teaching me lessons.
Epilepsy is a thief . It does not even have the decency to steal in the night without anyone for a witness. It comes during the broad daylight boldly taking my son’s development and quality of life! I have never seen such a criminal. If I could catch him, I would hand cuff him, and beat the life out of him! But he is illusive. He has left my son with autistic tendency’s, major sensory issues, and the development of a big two year old. He is still in pull-ups, is struggling to learn and retain what he is being taught. But he is ALSO the most forgiving, loving, compassionate, and hardest fighting person I know. When you think of the qualities that mean something in a person - he is rich! In what really matters – he is miles ahead of most adults I know! If I cry, he will burst into tears. I know people who will not even comfort you, much less empathize with you! He often has the resolve to keep going when I don’t! Often only communicating that by a smile,giggle, or a "press on!" He has given my life a new perspective, and forced my life to reflect my priorities. He has helped me to learn life lessons that without him I know that I would not have gained.
Lesson 3: Life is 99% perspective! Feelings aren’t facts! I get to make a choice everyday how to perceive any given situation. And, I get the opportunity daily to teach my children that as well. Circumstances do not dictate my joy! And just because I may be feeling like throwing in the towel and giving up, does not mean we are in a hopeless situation. You may say, “That lady is just the eternal optimist, or crazy.” And to those accusations I say – “Okay” :) Maybe, no - probably! But I would rather focus on what I have than don’t have. I would rather help my son to hold in his thoughts the good things, and the things that we are thankful for. And we can ALWAYS be thankful for SOMETHING. Those things are not tangible~ they never will be! This life can be challenging! But I am glad that this is not my final resting place. I am thankful everyday that this world is not my home, or my Zaki’s. Zaki fluctuates between a dozen to 50 seizures a day right now. You are probably gasping. When I type that it really is staggering, because I view him in a pretty good place right now… and compared to where we were, he is!
Thankful!
And when I think of my brave bold son, I am so thankful that he is going somewhere!
