2 PANS kids fighting lyme and coinfections, our journey to healing

Things I learned in MA

Things I Learned in MA…

Thinking this trip through before we left I knew there were going to be additional challenges over and above managing the kid’s behaviors and treatment compliance. First of all, I am scared of the dark, secondly, I am afraid to be alone at night while I sleep! Two major obstacles especially for someone who was considering living on a campsite, away from landline phones, 24/7 alarm monitoring, solo with two kids who require 24/7 management. The whole idea had my imagination in overdrive. Not to the point where I considered not coming, but I knew it was going to be a real test of my own strength and determination during the three months we would be here. Honestly, with less than 2 weeks to go, I am pleasantly surprised and a little impressed with my ability to buckle down and just make the best of what we have done. Weirdly it has also been far easier than I envisioned and certainly not even close to as scary as I initially imagined.

While it is true the cooking al fresco and the laundromat situation drive me insane, conversely, the simplicity and small space make any house related stress impossible. It also turns out I do know how to change gas bottles, light pilot lights, replenish toilet enzymes, and even remember to purchase biodegradable washing soap. To my credit, I have fixed beds, hung tarps, taken care of copious rain related issues, made campfires and even chosen to re-caulk the bathroom fittings – a job poorly executed by the fabricators of our little Jayco. I have totally proven to myself that I can clean, cook and live quite easily in this tiny space all while taking care of these two whirling littles by myself. Plus my neighbors are awesome. Being so close to the beach, the campsite is full of “seasonal” campers, these folks come every year and stay for the summer. Most are long time residents here and there is a real community of friendly, fun and hospitable folks, which makes it all a little more enjoyable.

… but honestly, I hate it. I don’t mean I hate parenting solo or taking care of everyday challenges, or even camping, I mean I just hate being away from my husband. For sure, I already knew that I relied on him for plenty at home. He thankfully takes care of things I can’t while I take care of the kids and sometimes that’s a lot because my health is not as optimal as it should be. Being away from him this long, after never really being apart since we met 18 years ago, I realize I am not missing “what” he does for me, i’m actually missing “why” he does what he does because truthfully that’s what I miss the most.

Like so many biomed husbands – mine not only takes care of funding this three ring circus we call life, he also picks up a lot of my slack at home. He will do laundry, cook, do the dishes, mow the lawn, paint, clean, make coffee all just because it needs doing. He doesn’t do any of this to “help me.” and that’s why I miss him, he doesn’t do any of it because he is obligated, he does it because he loves me. He sees what needs to be done and he does it to make my day a little easier. He is a true, no arguments, fully fledged, 50/50 partner and I have never been more grateful for anything in my life as I am for God sending him to cross paths with me. This man sees our family as a unit and sees his role completely linear to mine. I miss him because I swear he gets up every day and asks himself “what can I do to make my family’s life a little easier today.” There is always something he does that helps us all. So in the end, it hasn’t been the dark or the safety that has gotten to me, it’s been the “missing my other half” that has been the toughest part of this whole summer.

Thankfully we just rolled into day 59, and the kids and I are anxiously counting the days until we can get back home – it’s 12 if you are counting along with us. It has been hard seeing so little progress from the program because we know eventually, it will prove successful. We committed to being apart for what we knew would be a difficult few months, and secretly we both keep praying for the change that will make it all seem worthwhile, tonight we had a little epiphany. During a phone call, it dawned on us that B has been willingly going to bed around 10.30/11 pm for several nights. I thought he was playing on his phone, taking advantage of the peace and quiet in his tent but as we talked, we realized neither of us had seen him online later than 11 pm. I asked B about it and apparently for the last 3-4 nights he has been going into his tent and actually going to sleep. He is asleep well before midnight and has been able to get up around 8. While 3-4 nights of what is obviously a late-ish bedtime will seem insignificant to most, this represents a turn of events for us. This child has literally outpaced every single person in the house with his ability to run on limited to no sleep – for as long as we can remember. Even when he was a baby, no sleep. We have had periods where he may sleep for 1, 2 even 3 nights during a treatment phase but his last sleep study was the same as we have typically seen, continual waking approximately 15-18 times an hour, no restful/restorative sleep ever comes for him, until apparently this week. So a glimmer, a tiny glimmer of something working perhaps? Added to this new sleep schedule, (yeah we are calling it that even after just 4 days) at the clinic today on what is typically an off day (catch up treatments before we leave) B was disappointed that there was no oxygen treatment scheduled. Last week he had said in passing, “I feel really good about myself for some reason while I am on the machine and using oxygen” and today he was disappointed about it not being part of his routine reiterating what he had said before. We have yet to replicate that feeling for him outside of an oxygen mask but is this another tiny glimmer of hope in the healing process? Regardless, I am taking both of these things as good signs. Certainly, the sleep is to be celebrated, as sleep just does not come easily for him. The internal dialogue quietening while on oxygen is something we may have to explore later when we have time, but for now, there are only 12 days to go. We are ready to go home. I am ready for my sleep-number to be 30 instead of particle board, I am ready for a dog door so I don’t have to walk at 6 am and I am really ready for a fridge that holds more than 6 eggs and 2 packets of bacon but most of all, I am ready to live back with my husband, my awesome, amazing, you know he loves me the mostest, husband. Get the kettle on, I am coming home …

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