One thing I will say about Virginia is that you never know how the day is going to go. You cannot predict how well she slept the night before, her level of pain, her tolerance for different experiences, or if all of her equipment will cooperate.
But I know that outings of any sort- from a trip to the park or church to the ultimate challenge of travel- are only going to get harder as Virginia gets bigger, so we try to jump in whenever we get the chance. There are minutes when it feels like we have lost our minds, and we start laughing as we attempt to change a diaper in the car, with Virginia stretched out on the fully-reclined driver's seat of the car, and Wills and Eliza climbing over V's empty wheelchair to make room for Findley and me to work with Virginia. (And there are plenty of times when we aren't able to laugh about any of this at all!)
One truth that I try to keep fresh in my brain is that God's mercies are new and different every day. The manna that God gave the Israelites to eat when they were wandering in the desert spoiled every night. They had to collect new food every morning, and trust that it would be there. This job can feel overwhelming, and it is particularly disheartening when I let myself get mentally stuck in a difficult situation. I have to constantly remind myself that dawn always breaks, literally very good news for me on some of V's sleepless nights. And when the sun comes up, I can find the energy (& usually the joy) to face another day. But I cannot look too far in the future because that's when my brooding gets out of control and the next little task of fixing meds or bathing V feels like it will break me.
There are even times when I need manna every minute because the situation is so painful or complicated. I need to know that there is hope that whatever comes next will be better, and that a fresh start awaits. The truth is I have been given all the arsenal I need to make it through. Sometimes it is something profound that gets me through...like a certain verse from scripture or a nudge from the Holy Spirit. But more often than not, it's the simple graces God gives every day...a fresh cup of coffee, a funny book, or a good laugh with a friend.
This situation will not be solved this side of heaven. There is no way to live this burden out perfectly, although Virginia herself does a pretty fabulous job of it. I have been working hard to remove the check list of care from my brain when times are good, because I can absolutely ruin a good moment thinking about what unpleasant task might come next!
So for now, we continue to take Virginia as many places as we can, and let her experience all the goodness the world has to offer. We just can't have expectations for what it's going to be like, and we cannot get disheartened on the tough days because morning always comes, sometimes multiple times a day!