Not a day after I wrote that “hooray, summer!” post, things turned topsy-turvy again, as they are want to do. Josiah’s home health nursing completely fell apart, which eventually resulted in an emergency room visit so the surgeon could re-assess and a new plan of action be put in place. I caught the cold James and the girls had, which didn’t help things at all. The same day of the emergency room visit, Ellianna had an appointment with a new specialist, where we discovered that her Peds had failed to communicate with the rest of her specialist team (and the error probably would not have been caught for a while longer had she not had a new specialist appointment). It was maddening. That Friday was the longest, hardest day I’ve experienced in the last few months. It “just weren’t pretty”, as my husband likes to say in the vernacular. I sent up a battle call to all of my prayer warriors, and then signed out of the online world, the need for quiet absolute. I only recently returned to the online space in the last few days, and I am finding more and more that I balance better with very little social media in my life and that regular breaks from it for days or weeks at a time is a very healthy thing to do.
Saturday brought a break and relaxation (including a much, much, much needed massage). By Sunday, the illness had fully taken hold. I spent most of the next few days curled in bed fighting it off and catching up on desperately needed sleep.
It pretty much took a full week to find solid ground. We continued in our plan to just relax and let the chores go well into last week, and then by Wednesday or Thursday, we began to straighten and clean. Somewhat as an aside, we found it easy to discern where the problem spots were after this stay-cation of sorts- because after two weeks of using the house but not really cleaning the house, the hot spots were pretty obvious. They were any place that I or the children had to ‘think’ too hard- where the place or solution wasn’t obvious or clear. We simplified those spots quite a bit, either by getting rid of things or more clearly identifying homes for things. It worked very well, and we all seem to be finding it much easier to keep up with the chores and needs this way. I hope to write a bit more about it in the coming weeks.
After what has seemed like an epoch, we were all able to make it to Church this weekend, healthy and whole. What a blessing the time was in Liturgy and fellowship with the parish, catching up with friends after this crazy roller-coaster ride we’ve been on. It truly feels as if the winds of healing are bringing our family into calmer waters.
Yesterday, my husband and I celebrated thirteen years together- and this year, that fact alone has felt like a tremendous gift given the storms we’ve had to endure. He is my anchor, my safe refuge.
Our new normal is definitely defined by the childrens’ chronic illness. The structure of our days now follows medication schedules, and that is a change that will probably feel familar to those who remember the newborn and early month stages of infanthood if you sub nursing times for medication times. Again, our two with chronic illness define when it is okay to be out and active and when it is better to stay home, just as young babies do. Our bedtime routine has changed to reflect Josiah’s needs. It is an adjustment to be sure, but because it feels so familiar to when they were younger, I feel like it’s not such a brutal, abrupt change as it might have been. I noted that I traded in a diaper bag a few months ago for what is now a basket of syringes, saline, and other things related to Josiah’s cecostemy tube. A ‘same but different’ sort of thing. All in all, it feels like a normal we can handle as we move forward. It just feels good to be together again. To see the kids, to spend time with them, to not be two ships passing in the night with my Beloved. I’m so grateful.