I do EVERYTHING in my power to assure my daughters saftey and trying to prevent an unecessary anaphylactic shock and emergency trip to the ER. That is my duty as her mother, as her caregiver, as her person that has everything all under control. I take complete pride in seeing her complete look of trust when she looks at me, for an “ok” in different environments. It means we have taught her to be careful always when it comes to being one step ahead of her allergies.
My daughter, 8 years old, has a passion for figure skating and is well under way to start competing in the Fall of 2015. This past year I think I have resided more in the ice rink venue(not heated) than at home, and I do it with pleasure. I really don’t have complaints about having to be there. Being a mom to an anaphylactic daughter, her surroundings have to be safe, and if they can’t be safe – I will be to be there to keep her safe, until she is old enough to control her environments by herself. I am the mom who hangs out in the locker room, jumping clear across the room when another skater offers her friend some of her snack bag of nuts – great protein energy (even though numerous emails have gone out to parents in regards to my daughters allergy). I know from experience that those routine emails that go out to parents in schools and parents of other children participating in activities that most see these as just “words” not warnings, and by some as a bit of an annoyance that we are trying to regulate what you feed your child. The fact that most don’t want to understand is that my child can die from what you chose to give your child rarely sinks in for anyone not closely related or someone who knows someone with anaphylactic allergies. Most ONLY know that “theres the kid with the Epipen”.
The discussions I have with schools, coaches and other parents not able to go the complete distance in understanding what it is to live with anaphylactic allergies often makes me feel lonely and frustrated. I embrace the internet with all the connections and communities out there geared towards others living with allergies, and wish we all lived in a big gated community :).
But such is not the case, and often I am left being the one staring down the end of the track field trying to see how my daughters breathing is without wanting to be too close to step on the coaches toes, because they know “she’s the one with the allergies” but I often ask myself… what would they do when a anaphylactic allergic reaction occurs? Do they notice her breathing, do they see her rash? I am the one slowly pacing myself behind the group during the endurance building hike in the woods. Doesn’t she have her epipen/adrenaline bag on her at all times? Yes, of course, but do I trust an 8 year old to jab herself in the leg by herself, let alone know the symptoms of an anaphylactic shock when her coaches are way ahead of her? Would you risk your child’s life on hoping she will react as you have taught her in an emergency situation and you just sit back or run errands like the other parents or catching up on social gossip during practice? Think again.
I am the one who joins the teachers on the numerous field trips, because they have their hands full with the “problem kids” instead of having to worry about wiping down the public table the kids will be eating lunch at or worrying about telling them to wash their hands before putting something in their mouths. I am usually the only parent that STAYS at the friends birthday parties, analyzing surroundings, bringing the safe cupcakes for everyone, asking to see every ingredient label a week ahead of time (all so that she can be like everyone else, as much as possible – and not feel excluded). Talking about this usually doesn’t get me anywhere, and I also don’t feel like it is anyone elses responsibility to take on – I definetly don’t want my daughter not being the one invited because the parents on top of usual party planning stress have to worry about the kid that may die – I am not doing that to her or to the other parents. After school playdates other than at our home? Pretty much non-exsistant in the reality of realm of time and planning during a weekday, birthday parties and outings are hard enough. I am the parent who cannot work full-time, because I HAVE to be hands on at all times in assisting in random things that come up that may prevent my daughter from being safe – (but mostly assisting to create an environment like everyone else has – just thoroughly checked by me), and when I say this I don’t mean the accidental fall off the swing at school , the broken leg, etc…. I am there because her everyday envinroment doesn’t allow her to be like other kids, unless I am there to think one step ahead, because unfortunately the other adults responsible for her safety do not think the extra step. This is nothing I am imagine they would, its impossible if you don’t live with that way of thinking from experience, so I am not expecting or asking that of anyone . It would however be nice to be accepted for having to be the type of family we are because we have to – my daughter having anaphylactic allergies is not a choice, this is not an eating trend we are vigilant about – this means life or death for her. So not being treated as the helicopter parent and having eyes rolled at us on a daily basis (its amazing to see it happen right infront of my face sometimes) would ease the loneliness.
So, to most I am accepted everywhere as being the protective(over?)parent. I think 10% of them may understand me, the rest I feel judge me as an overprotective parent. Do I care? No, not really. My daughter is more important to me, and will always be, more than how anyone choses to judge my parenting skills. Is it lonely? Yes, it is.
Again, embracing all the allergy aware and friendly communities online, as well as the adults around us who actually do want to learn and know how to keep her safe, I wouldn’t be as strong and as able of an allergy parent if it weren’t for you! THANK YOU! You know who you are!