Here is a fun truth, which I can only write because my children don’t read this blog; I would be much healthier if I didn’t have children. Actually, it would be much easier to be healthier if I didn’t have children. So possibly there is another TILTed mother out there who is helping her children navigate the outside world and maintaining her healthy home boundaries and remaining fully committed to a rotation diet such that she is just as healthy with children as without. It’s not me. In fact, if you know her, can you tell her to get in touch with me? I promise to hide my enormous resentment of her success and instead will only ask her very polite but insistent questions along the lines of, “How the @*# do you do it?”
Regardless of our original chemical injury and our chosen treatments, all MCS patients have to commit to reduced exposure as the cornerstone of their health. A clean safe home, a low exposure work environment if you are lucky enough to be able to work, and the rare errands into uncontrolled environments. If you are the only person you are responsible for that whole scenario is much easier. Of course, I know that as their mom I get to choose where they go and what they do. And to that end, I did briefly consider homeschooling, but it just isn’t a good match for us. Still, I could eliminate my job as chauffeur and insist they ride the bus to school and back and let that be the extent of their outside adventures, leaving any social interaction to be playdates at my house and trusting the FL public school system to cover their educational needs. I simply cannot do that. My daughter has needs beyond schooling, like speech therapy and talents that should be encouraged, like music lessons. My son, a child of extremes, has to interact with other children his age beyond school or he will end up being completely anti-social.
I don’t believe that I am caught up in some misguided mindset that makes lifestyle family decisions based on a preconceived image of normal – we do too many things based on our own terms, or my terms really. They have to camp for vacations instead of use airplanes or hotels because of my limitations. They have most of their playdates and sleepovers at our home so that I can participate and still be safe. There are so many examples of times they accommodate me that I think it only fair I compromise some too and ensure that they have access to enriching opportunities outside our home. But there are certainly lots of destinations in our weekly routine I would not go to, if I were only responsible for me.
I don’t compromise very often with my home though. It’s almost as safe as if I were the only one living in it. We’ve always been fairly strict with toys and art supplies and the complicated but useful airing out system does its job. But looking ahead, the kids will be teenagers someday soon, with teenage friends, who use smelly things on their bodies that I cannot tolerate. I can insist that my kids use only body products I approve, but I am not looking forward to the first time I have to tell a visiting prickly teenage friend to leave my house, shower, change clothes, and then come back. I cannot even imagine my child’s mortification. Something to look forward to!
So my home is almost as safe as it would be if I were by myself and I accept the outside exposure’s impact on my health as unavoidable. But the food situation has spiraled into something very messy. During my initial health crisis and very slow recovery of 1996-2000, I was on a strict rare foods rotation diet that was necessary and healing. But the diet slowly crumbled during the glazed over eyeball period of mothering infants and, no exaggerating, my son did not sleep through the night til he was 3 years old at which point my daughter was born. Result-I was sleep deprived for 4 years. I avoided the foods I was truly allergic to, as did my daughter who was allergic to the same things, but rotating was way too complicated for someone who was thinking ten minutes ahead on a good day. And here is the problem with so many chronic illnesses, that kind of leniency was alright for a while. I went years where my food intolerances stayed level. In fact, my daughter outgrew her original gluten allergy and it got easier to feed her voracious appetite. My son has always hated the texture of meat and, like my husband, has ended up a lover of the grilled cheese, which my daughter and I cannot touch, but that seemed ok. Little concessions here and there to get us through the day. But my daughter and I are having major GI issues now. In retrospect, I can see that I should have kept any food that my daughter and I couldn’t eat out of my kitchen. I should have, from the beginning, prepared one meal that was safe and nutritious for everyone. That other imaginary TILTed mom probably did, curse her perfection. So now I am feeding 4 people with wildly different needs and appetites. I, the responsible party, am intolerant of a wide range of foods, my daughter’s intolerances are spreading, and the boys would happily live on pizza, pretzels and carrots. Argh!
If it were just me, I would have the time to make the rotated whole foods vegetable and protein based menu that my body needs. If it were just me, that’s the only food that would be in my house so I couldn’t cheat on the diet. If it were just me, food wouldn’t be such a complicated issue and maybe I wouldn’t harbor such negative feelings towards it. Well, that seems untenable and getting us on a better food journey is my major goal for this year. So look for future exciting posts on “the garden that wouldn’t grow because Florida got really cold this winter” and “introducing new foods by bribery or threats”.
Now, having thoroughly vilified my children in a detailed way, do I resent them? Of course not! I chose to take on parenting, knowing that it would negatively impact my health. The details and extent are still revealing themselves, but I am not surprised by the fact of it. Mainly, it presents some unsolvable vicious cycles. Like…if I could work then the second income would allow me to more aggressively pursue medical options for my daughter but the everyday exposures of parenting keep me TILTed enough to prevent working. Like…if I was only responsible for feeding myself I could probably regain enough strength and clarity to figure out a diet that works for me and my whole family.
But when I was at my sickest, I made a simple list of what I would want to do if I survived. I was an ambitious person before; patents, dance companies, teaching, writing and a love for travel. Those things weren’t even in the top three.
#1 was Be A Mother.