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?
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