I am sure that there are a lot of various opinions of what it means to be a Warrior Mom or Warrior Dad. The past week has brought many different emotions for me, all familiar for any parent who has a child with special needs. FRUSTRATION/ANGER: Angry that I cannot get the right treatments for Brett concerning his ankles, legs and pain problems. Angry that we yet again have landed in a place that does not have more than one neurologist close by who is willing to see Brynn and Brett because “They have complex care needs.” Angry that I have to make all these phone calls just to get the prescriptions every month, it’s not supposed to be this complicated. The list goes on, but you get the point. SADNESS/GRIEF: Going through facebook photos looking at how great Brett looks compared to a few years ago, I saw artwork he had done back in 2012. Paintings that he is not capable of today. It’s a painful sting to the heart, to remember my beautiful little boy that was to be, that is not anymore. When your child regresses and looses skills, years of development, there is a grieving process that you must go through. At some point, you realize what the physicians are not telling you, that your child will never become the child that he/she was born to be. This monster has stolen that child and now, the child that you are left with is and will be only a shell of that child. Ultimate sadness yet again as I read that another precious child was taken by seizures. No matter how many times we read those statistics, or hear about SUDEP or even tell others about the risk of death that seizures bring, it will never change the sadness that our community feels when we loose another precious child, mother, father, sister, brother, anyone to epilepsy. One seizure is all it takes, ONE.
So, what is a Warrior Mom/Dad to me? A Warrior Mom or Dad to me is a Parent who becomes involved in their child’s epilepsy journey to such a degree that they don’t often have time for pity parties. They don’t post on social media every time they get sick, have a seizure, visit a doctor, get new glasses or go to the park. They would rather spend that time advocating for epilepsy awareness, researching treatments and options for their own child and as many others as possible, helping support the overall epilepsy community as well as other epilepsy families and especially those newly diagnosed.
I’m going to say this in the nicest way possible, and I do mean this in love. If you have a child who has been diagnosed with epilepsy for 5+ years and you cannot answer these basic questions you need to learn the answers to begin advocating for your child effectively.
1. What type/types of seizures does he/she have? 2. Are they Partial or Generalized? 3. What medications is he/she currently taking? 4. Has Genetic test been done? If so was a gene identified? Which one/ones? 5. What part/parts of the brain are the seizures coming from? 6. Does he/she have a VNS? Why/Why not? 7. What’s the longest period of time since diagnoses that he/she has been seizure free? 8. How many seizures per week or month that you see on average? 9. When was the last EEG and what were the results? 10. What is your child’s seizure plan for a seizure over 3 minutes, 5 minutes? Do you have medication at home to use in the vent of a seizure that goes over the time that is safe? Why/why not?
Frankly speaking, I see so many parents in the epilepsy community and I worry about so many of you. Especially when it’s been in that 5-10 year since diagnosis range and your still there, posting the same things or worse just like a diary of your child’s life in a support group but you never seem to mature in your journey to the level of advocate that you begin to reach out and help others the same way that you were helped. THAT is what makes a WARRIOR MOM/DAD so great. I mean who else can, right?
~Denise
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I am a Home School Mom. It shouldn’t have come as such a surprise, I knew, I guess I just refused to admit it. I knew how terribly Brynn still struggles to read at a second-grade level. I knew too that Brett still struggles to work on the level he mastered 5 years ago. Somehow, it did come as a shock and caused great sadness to read in black and white that I have two children who are now diagnosed as being “Moderately Intellectually Disabled.” Perhaps deep down 
inside I had hoped that the testing would provide clues to reach them, I hoped that I was missing. Surely there was something that would magically make what is taught stick in the brain for later use.
think Brynn would make a great, fix it all mechanic and Brett would surely be a wonderful, caring and compassionate doctor. You have all these hopes and dreams of your children’s future and you want them to achieve great things. You hope that they will have even more happiness than you have and if at all possible that they will grow into successful and God fearing people, with a great deal of moral responsibility and grace that they will accomplish many great things.
I feel like I embraced Holland, which in our case is Epilepsy. I learned all I could about it and I learned to appreciate our family life in Holland. I joined all the groups, found others like us. I advocated I researched thousands of hours and I read more than the tour guides most refer to as physicians likely do about how we ended up here on the genetic map. I made the best out of Holland and did my very best to help all the other parents who ended up in Holland unexpectedly like we did. Now I have been told that I am not really in Holland, I am in France as we are not just dealing with epilepsy, it is moderate intellectual disability as well. I knew Brynn had been diagnosed with Cognitive Disorder 
NOS and Cognitive Disability, but I assumed that when his seizures were better controlled that it was likely that his cognitive difficulties would be better. His seizures are so much better controlled than they were 5 years ago when he completed his first neuropsychological evaluation. He has been on the same medication for over two years with no adjustments at all, so this is truly who Brynn is and where he likely will stay for life. Never in a million years would I have been prepared for his full-scale IQ to be 17 points lower. We saw an immediate 3-year regression with his second status Tonic Clonic seizure. It took a few years to even get almost back to where he was and he was already behind in all areas. I can only presume that this is what caused the IQ 
level to drop, I have written before about brain damage from seizures. I couldn’t have imagined that Brett’s scores across the board would be so low either. Both boys score highest in Verbal Intelligence which I have read is usually the case in Moderate disability. I suppose this is a blessing, as they are both able to speak and understand a broad variety of words. So, I guess I need to explore all I can now about France. We will have to find more tour guides, join more groups and find out all we can about this place that we have been placed. I have to wonder, if it would have made a difference had someone told us when they were born that this journey would be different.
Epilepsy Warrior Boys, Mom and Little Sister too... 