Constant Vigilance and Asher's EPIc Adventures

My 7 year old Asher is a child who can eat something one day and the next day it tries to kill him.  He's never not been sick and we didn't know why for the first year of his life. Then at 14 months old, he had an anaphylactic reaction to eggs and after testing we realized that he had food allergies.  Food allergies weren't even on our radar.  We knew no one with food allergies and we felt very alone.  Not only did we have to educate everyone around us, we had to BECOME educated ourselves.  We've made a lot of mistakes, gone through a couple of doctors and then last year found the most amazing allergist in all the land.  It doesn't get easier, but your "normal" changes. I forget that people go out to eat and grab anything they want off of the shelf at the grocery store. I forget that other people don't watch their children as closely as I have to. Our normal is someone else's crazy. Ha! That picture is from the first moments of Asher's last skin test. We do one every year (along with blood work) for certain allergies, just to give us points of reference for the coming years and to warn of us new allergies. He was first diagnosed at 14 months with allergies to peanuts, egg and milk. At age 7, we're still adding food allergies instead of growing out of them.  His allergy list is now: peanut, tree nut, egg, soy, guar gum, sesame, sunflower, chick pea, green pea, lupin/lupine, lima bean, lentils, quinoa, coconut, poppyseed, flax seed, pumpkin, buckwheat, rice, and penicillin.  After watching Ash so closely for 6 years, in 2015 another diagnosis hit us out of nowhere.  Frontal lobe epilepsy. Asher had what we assumed were night terrors for a couple of years until he had a major seizure with full body shaking. He had an EEG and they called us the next night and told us to keep him home from school the next day and bring him to neurology.  You know if they call with results the NEXT NIGHT (I'm talking past 7pm) that it's not good.  Now one of us sleeps with him, we have to keep him well because sickness can induce seizures and a baby monitor has once again become a part of our lives. We soon learned about SUDEP (sudden unexpected death in epilepsy) that can happen to any person who has epilepsy but especially those who have seizures at night, like Ash.  So, we watch for his breathing to stop in two different conditions.  The hard part is being aware of what can happen while not obsessing on it every second of our lives.  We want to take this life and LIVE IT, not allow fear to rule us.  He wears epinephrine around his waist every second he is out of our home and it hangs on a hook on the front door to remind him to put it on as we leave. We have administered epinephrine 6 times (the last time Asher did it himself!) and ridden in ambulances I don't know how many times. He takes Keppra for his epilepsy twice every day. I have alarms for am and pm and we cannot forget or it will induce seizures. We are vigilant about medications, we are vigilant about possible reactions, we are vigilant about impending seizures, we are vigilant about what other people around him have eaten, we are vigilant about chest colds, WE.ARE.VIGILANT.  We HAVE to watch him closely, we have no other option. Constant vigilance sometimes makes me an anxious mess, yet sometimes empowers me. I never know the "right" thing to do for him regarding child care, school, medication, who to trust, how to educate others and not wear them out with information, how to assure people they don't need to feel guilty because they have nuts in their homes and so Ash can't visit, how much to expect from his school, how much I should read on the internet...  It has affected all relationships I have in hard and sometimes good ways. Isaac and I have different opinions about some aspects and so it affects our marriage, while bringing us closer together.  It's hard to keep friends who want "normal" friendships, but we have the MOST AMAZING support system/tribe in place.  From family, to friends, to support from his Facebook page and a church who has kept certain foods completely out of the building in order to keep him safe. I am hyper-aware of everything Zoe and Willow put in their mouths because allergies can manifest at any time, but we definitely eat healthier than before.  I am forced to look at Asher so closely at all times that it sometimes leaks over into other parts of my life. I start looking at my own body so closely that I see medical problems where there are none. Some days, the finances that are choking us become the biggest issue in my mind because it's easier to obsess on those rather than think about my child accidentally ingesting a peanut particle. Isaac takes the brunt of my frustrations because I can't very well yell at food allergies and epilepsy.  I look at Willow and suddenly SEE how yes, she definitely has epilepsy.  OHMYGOSH, how did I miss this?  Other days, I look at those same "symptoms" and think, oh no, she's fine. It just depends on the day and my mood and how much I've let myself google.  While constant vigilance is absolutely required in this life with Asher, sometimes it makes me feel crazy. But I'll take it in order to keep him safe. Life is often like that, just riding the waves. Usually when I write about Asher, I sprinkle equal amounts of positivity because it's good for me, but today...today, I'm just getting it out for the other Mighty warriors out there.   This is my life. Keeping Asher safe, constant vigilance, and my sanity are just a part of it.