As soon as she was home and we checked out the rash I became pretty concerned. Her father is not much on doctors, or paying for them, and had decided she would be fine with just Benadryl which sadly wasn’t so much the case – and our valley’s 103 degree day certainly did the rash no favors.

After a trip to the E.R. (Saturday afternoon, no doctors) we luckily discovered the rash itself doesn’t appear to be serious… …it is not related to any worse disorder or disease like meningitis or measles and as far as we can tell is a non-communicable “mysterious allergic reaction to something non-food based” — so anything from the chemicals Vector control spreads to keep the bugs down to a new detergent at her fathers that escaped notice. There is an equal possibility it could be something growing in the area or a new pet flea dip on a neighbor dog.

Doctors orders are to keep her cool and resting the next few days while the temperatures outside soar, give her the Benadryl and wait for it to disappear. Should it return we will have to back track and try to find the cause.

All and all for a normal, healthy family this would probably be where the story ends, unfortunately as a mother who sports a dozen invisible chronic illnesses, it’s hard for me to just chalk it up to “stuff happens with kids”. There is that inner part of my brain that is flipping quickly through the Rolodex of memories trying to recall if I ever had a rash that looked like that, thinking she’s had nose bleeds this summer, a few more headaches… … is it all related? Is it all normal childhood stuff or is there something darker lurking just under the surface, waiting to rob my baby of her apparently perfect health?

The sane, sensible part of me recognizes that kids get sick, have headaches, break bones and all the other potential traumas of childhood. I know they exist, are normal, and sometimes even healthy since getting sick is part of how we build our immune systems up. However, that other part, still needs to run through the rank and file of disorders and syndromes that could possibly be related.

She and I had a long talk, one of many that have happened before and will always happen. I explained even more about reading ingredients, about my own multiple chemical sensitivities (bleach, glycols,artificial scents), as well as things I know the family to be allergic to – like my mothers allergy to yellow dye number 5.

As chronically ill parents I think many of us walk a fine line between wanting to protect our children and educating them about their own bodies, family histories and potential health problems – from diabetes and heart disease to Mono and Lyme disease. It can be a challenge to keep their attention, for starters, and to give them the right amount of information to help them — without causing them fear or creating unhealthy levels of concern, which can backfire by creating anxiety in otherwise perfectly healthy children.

The conversation of offspring comes up a lot among my ICI peers, we all have our concerns about our children developing our illnesses, the mental wear and tear it may put on them, do we spend enough time with them are we “there” enough for them? I am growing to believe that in many ways, for my own child at least, having a chronically ill parent has not been a completely negative experience.

My daughter is compassionate of others, aware of her own body and is pretty good at “sucking it up” now and then when it comes to pain or discomfort – which  certainly seems an advantage for her in sports. She played on an aggressive mixed grade (4th/5th/6th) basketball team last year – her first year of basketball – and was one of two girls who never cried all season (Tom Hanks said there was no crying in baseball, he spoke nothing of Jr. Girls Basketball). I’ve additionally seen her easily brush off little discomforts in order to keep having fun when some of her contemporaries are causing a fuss over a little rain, a splinter or falling on their bums one to many times while skateboarding.

I like to think that while she obviously sees the negative side of chronic illness she will also continue to see we all have hurdles to jump and that doing so with a smile and some determination gets you a lot further along in life than sniveling and a passive aggressive attitude.

Today her hurdles aren’t that bad, the rash is still uncomfortable, but she has accepted the “miserable fate” that has brought her to being told her assignment for the next two days is to stay cool, stay hydrated, eat well and watch as much Netflix as she would like. I think she’ll jump this particular hurdle just fine… at least for the first 24 hours.

This time of year tends to mean different things to different people; for some it’s a time to reflect on where this nation is going, for others a time gather family closer and push away the 9-5 grind (although, does anyone really work 9-5 anymore?).

For me this is a time of mixed feelings. My grandmother’s birthday was the 1st and she is deeply missed, my daughter spends this holiday with her father as she has done since birth — it makes sense, he’s a pyrotechnic and who wouldn’t wanna hang out where the big fireworks are? So she is missed as well.

My illnesses do not tolerate heat well and trying to celebrate with friends on this day in the past has not gone well; I always felt like I brought too much stuff with me, was high maintenance, or couldn’t help out enough. Luckily time, education and perspective has taught me that none of this is true and that with proper planning and preparation on my part I can do anything I choose…and that with a positive attitude and a smile in place my friends don’t care if I’m a little high maintenance or not.

The first step is always to make sure I give myself enough rest the day and night before. From there I write myself a list of what I will need to do or bring and get everything packed and staged as soon as I can. For instance, my ‘beach’ bag has been packed for more than a week with fresh towels, a bottle of witch hazel (to sooth the skin from scratches or bug bites) natural bug repellent, sun block, a spare hat, a few extra dollars in a waterproof bag, some healthy snacks like nuts and crackers and a paperback book.

If I’m taking a dish to potluck,  I have the recipe pinned to my list and I do all the shopping ahead so I can prepare the dish a day in advance and have it ready in the fridge. A post-it on the front door reminds me to bring it along.

All of my medications get separated out into easy-carry containers that go in my purse the night before and I load bottles of water into my car so that hydration is never a problem….even if I forget my bottle of cold tea when I head out.

With all of my lists and tools in place it’s easy and not at all stressful to get ready for whatever the day has to throw at me.

You can make your adventures easier too by making up master lists for each time you travel, pre-packing certain bags and collecting easy to make recipes, summer reading books, travel pillows, beach blankets, chairs or whatever else will make you more comfortable so that you can get out and enjoy all that this amazing season has to offer.

With that in mind — the sun is calling and I smell BBQ.

Until next time,

Coach Dusty