Those moments when you are running as fast as you can from a sense of engulfing panic that things could go so very wrong.
For Abby's entire life we knew even at the best of times that something was very wrong. We weren't always able to pinpoint what it was, or how to treat it, cure it, stop it, move ahead of it. Often the Specialists "saw it" "felt it" and they too could not pinpoint beyond that something was "wrong."
Each time I felt that panic nipping at our heels we ran faster, or we watched Abby's body catch up and balance out and we could again breath deeply. We were blessed with the ability to shut it out and move forward with our lives without putting her health first.
Over the years during the rough periods Derek would always say " she will be fine. ".
He was right(he generally is), yet despite knowing that again and again she bounces and overcomes, that stupid sense of impending doom nips at my heels.
"Mitochondrial Depletion Syndrome", FSGS, and other medical terms I search daily to see what is new within the field brings it all smacking me in the face at how very fortunate she has been, we have been. It also often triggers those troubling thoughts of I might not be able to hold the dam forever. Maybe the balance we have seen is that we are closing our eyes and hiding to avoid reality or is it just a fluke.
Today is one of those days I feel like we hover between two different realities. 1 reality includes the Depletion and all the potential horror that comes with it and the other reality is the one we have been chasing, working for and cementing which is that while she may have those diseases the "cause" can be removed or at least the aggravating factors that trigger progression we can remove.
The wild card is that on many levels the reality is that we have made massive changes in her environment/food and the progression slows to a trickle. Same thing happened as a toddler. I sure wish we could pat ourselves on the back and say "we figured it out!" But is that "wild card" dumb luck or real?
The problem is, it could be a fluke. A coincidence.. random foolish luck. Those baby toddler years are very hard biologically speaking because of the rapid growth, it is expected to see more symptoms and progression. Same can be said for the teen years, remarkable and stressful changes occur to the body that can and often do trigger progression. Her disease process could simply be mild and or unique, even the Specialists admit they don't know the half of it yet.
Are we simply enjoying a lull in the storm? Or have we leashed this journey and it is our unified and outlandish efforts and not her biology that has allowed for this stability.
The self doubt, the worry, the lack of confidence in these times are warranted. We are opting for a path that at least to us, seems to be making all the difference in the world, but is one that very few medical professionals would ever recommend for someone like Abby. There are hints of research, a zillion threads that have yet to be woven together by science that make it clear that we did not just randomly chose this path, but there are also the same amount of threads that can be combined that argue just as articulately against the path we are on.
There are days I wake up and really think I have lost my mind, that we have collectively lost our minds. I think about our "old lives", walking on the treadmill, schools buses rolling through the burbs day and night, running out for dinner or lunch multiple times a week, opening up a box for dinner,shopping and buying the latest greatest cleaner, smelly to make the house more welcoming, food without ever reading past the calories, going to the Dr and giving her whatever was prescribed without even reading the insert.. was that life really, truly adding to her poor health? What was it exactly that caused us to run from that life, what event triggered this radical change in our lives?
Or when it is 20 degree's outside and I am picking up chicken poo, filling ice cold waterer's in the pouring rain... or in 100 degree heat and humidity pulling weeds or butchering a turkey or a chicken, sweating like this old body has never experienced before. Scrubbing my feet after a day of dirt, poo, scratches and bites.. staring at fire ant hills as far as the eye can see..trying to figure out what welt on my body came from what bug and how many bites can my body take? Trying every trick to move ants and bugs from pouring giant heavy kettles of boiling water over the mounds to rubbing my shovel with cinnamon oil in hopes of discouraging them from attacking up the shovel handle.. that moment when I have to take the life of a bird that I have nurtured and loved in order to nurture and love my family. Plucking feathers? How many in my generation or daughters generation have ever plucked feathers from their food. Have we lost our minds? The 5 am grinding of teff grains for flour, the yogurt maker on the counter culturing homemade coconut milk- really have we lost our minds?
Even on the best of days when I have found a new food Abby tolerates, when I drink a glass of water from the well feeling good knowing it is safer then city water, when Abby is smiling and up to brushing her hair or helping fold laundry, there is that tickle of doubt in the back of mind.
In the patient population there are very few who have opted for a journey like Abby's. That doesn't help my self doubts.
Without a doubt Derek and I have been fearless in following our own destinies and are kind of proud at this point of how many doubt us or felt we had lost our minds for going against current trends or expectations. There have been huge rewards for our free thinking and a huge price as well.
This isn't gambling on a job across the country, or a gamble on which housing market will improve or fail,or following my gut that the girls needed more academics then the public schools provide, this is gambling on life. Abby's life.
Is that dramatic? Probably and probably not. Is it reality 1 or reality 2? Not sure today.
I woke up today wishing for the comfort of Specialists telling her, us what medical intervention we should do. I woke up wanting their reassurances that food, medications, environment in no way what so ever could make her worse. I wanted someone other then myself to make potentially life saving decisions, or at least life extending decisions, heck even simple quality of life decisions. But, I also had a moment of clarity.
She is more stable today then yesterday, then 6 years ago.
She is smiling more.
She is happy.
I am getting more exercise.
We have followed the Drs. creed of " First, do no harm."
So for today we will stick with reality number two- this journey is our reality and worth continuing.