My dad and brother both were amazed at Jordan. Dad went on and on about how Jordan would run up to him and look him straight in the eye as he was running around playing and how he repeatedly did that and kept coming back and “checking” and to see what Dad was up to, where he was, etc. Haahum, Grandpa is known to be playful and to be there one minute and hiding around the corner waiting to startle you as you come looking for him the next minute! Dad talked about how you could look into Jordan’s eyes and see him thinking and processing everything, but instantaneously, no pausing needing to think about it or work to figure things out. Just looking at one thing, got it, and on to the next, no pause, no confusion, just alert understanding. It only took Jordan a couple minutes to warm up to him when they arrived – it used to take a couple of days, and even then he would be reserved, shy, fearful, look at his cousins out of the corner of his eye and he certainly still wanted, “Mommmyyyyyyy.” Not anymore! Jordan was all about playing with his Grandpa, uncle and cousins, no reservation, no fear – Mommy, where was she anyway? Who knows? Who cares? We have a very playful, silly, loving Grandpa visiting!
Some days I wonder, “Is it worth it?” It seems like everyday I wake up to do battle. A battle for the well-being of my son. Every meal, every snack, every grocery trip, specialty food stores, supplements, vitamins, everytime I clean or wash something I work to keep things as toxin free as possible and the food allergen free, nutritious, and healing snacks and meals – and that means from scratch with unusual ingredients! And that’s routine, then there are the other battles – the insurance company (they still haven’t paid a penny for his treatments, even mainstream allergy and GI issue treatment), the doctors, friends and society and the perception of what we are doing. Many who think I’m wrong. Battling to find or create a treatment plan that will work for him. Most days it feels like uncharted territory and for us to discover it is the only way to move forward.
The sacrifice of a social life and friends. We don’t often get together with others. Food is usually involved. Most people don’t get excited about dairy free, yeast free, gluten free, color free…do I really need to keep going? And, well, I’ve lived in a cave for 2 years – a cave called allergies, developmental delay, autism, toxins, neurotoxicity, nutrition, health, and recovery. My every waking moment dedicated to the care of my boys and research. Not exactly uplifting topics for casual conversation. Yet, I don’t have much else to talk about. I can listen. But, I nearly go insane as I listen to new mothers go on and on about how awful their life is with their colicky 6 week old baby and how they can’t sleep through the night and they are so exhausted. Yet, who don’t want any real help – just a pill to cure it.
I’ve become a conspiracy theory person (the kind I use to look at cross-eyed because I thought they were crazy, yup, that’s me now)- Big Pharma (the pharmaceutical companies) having the power to control gov’t, the CDC (Centers for Disease Control) vaccine recommendations, the AAP (American Academy of Pediatrics) who still won’t acknowledge that Autism is treatable, and the FDA (Food and Drug Administration) and what they do or don’t approve as safe, and of course the media. Yes, I’ve completely lost my trust in much of the information from these sources. Yet, this is who everyone else listens to so I feel like it’s a battle against all of them (gov’t, it’s agencies, media, pharma, mainstream medicine) plus against all of the misinformation everyone else around me believes from them and hits me with (as if I haven’t heard it and looked into it already). I try to look at these as educational opportunities the problems is – who would you believe? A mom with a kid with developmental problems or the CDC, AAP, FDA, the media, and your doctor? I know who I used to believe and lets just say, I thought the mom was craaazy. So, most people don’t really want to be educated. They like their comfortable bubble with their misinformation. Who can blame them. I’m exhausted fighting this fight and if it wasn’t absolutely necessary, if I had had any other option, I would have taken it. My options were let my child starve, feed him foods he was allergic to and watch him vomit, scream, writhe in pain, and not develop mentally, or find another way – one nobody knew about. But since I didn’t have any other option I stand and I fight not just for my son but for all those who currently have other options (reflux meds, ear tubes, nebulizers, allergy meds, seizure meds, speech therapy, occupational therapy, physical therapy, etc) and keep trying to take them, but many of their kids aren’t getting better – for the few who will seek other solutions, I fight.
A WORD OF ENCOURAGEMENT
Is it worth it? So often, I just get tired. Just plain tired. But also tired of fighting the system and seemingly everyone and everything (except my husband, of course – he’s an incredible warrior too!). Some days I just want to give up and give in – let’s go to McD’s and get chicken nuggets, fries, and some fruit punch! Let’s stop on a great summer day and get an ice cream cone! Ah, the relief not to have to pack all meals and snacks ahead of time, to stop and get a treat that wasn’t specially planned for, prepared, and saved for the occation.
My family visited a week ago – my parents and my brother and his family. The last time we had seen them (except Mom, she was down for a visit in between) was for one week around the 1st of January, so it has been just over 4 months. Other than the diet, which we have done all along, we started his new treatments in December - cranial sacral, supplementation, and a little detox (started in April).
My brother noticed the difference in Jordan too. He commented that it seemed like Jordan had grown a year’s worth in the 4 months since they had seen him last! Ahhh, all words that do a warring mommy’s heart good – and I have to agree with his assessment. Jordan does seem like a 2 year old now.
Is it worth it? Oh to stop and enjoy that summer ice cream cone or see cookie crumbles on the edges of his mouth :) But, then I remember where we’ve been and how far he has come, and the blueberry coconut milk smoothie mustache – made at home (with some supplements added in it too) - is just great!