What’s a Warrior Mom or Dad Anyway?

b88c4ff1ba453f745e54a61d222cc76f 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

Check out my Etsy shoop for VNS Bracelets, Bands and Clips. Awareness decals, and other Special Needs items! http://etsy.com/shop/EWB2

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It’s been so long…

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I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

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Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!