Life cruises along and all seems normal and I almost forget that our normal isn’t so normal.
And then we have weeks like this last week that thrust me back into reality.
First, a long-awaited test result from Harper’s new doctor that indicate possible genetic “glitches” that could potentially explain her condition if they knew more, but at this point are inconclusive and just leave more questions than answers.
Then it was the public meltdown she had, although not necessarily the meltdown itself, as those have been coming more frequently lately. Rather it was the realization of the pointing and staring and comments of those around us that hurt my heart… it has been a long while since we have been blatantly scoffed at and mocked over a sensory overload meltdown (which looks like a big kid throwing a massive tantrum in our case), and it truly caught me off-guard. Sometimes the cruelty of this world just baffles me.
And finally it was preparing for an extended hospital stay for EEG monitoring (an EMU admission)… I spent hours printing off reports that didn’t get transferred, finding copies of neuropsych evaluations, and putting it all in order. As I did so, I was struck by the pages and pages of numbers and scores that try to define my child. All of those digits that are used to quantify who she is or what she is capable of, yet they fail to take into account one thing- the God who has created her and who defies all of man’s reasoning and supersedes our understanding!
I packed and repacked and repacked our suitcase, trying to be sure we had all of the comfy clothes, books, games, and snacks we could need for the next week. This will be our third stay for this testing, and each one has been different. The first was at Duke and ended badly with Harps in ICU, and the second was a 9-day stay at Johns Hopkins. This time we will be in Los Angeles, and it will just be Harper and myself for the entire stay for the first time. New city, new hospital, new doctors, new experience…
I’ll do my best to keep everyone posted on what’s happening over the next week, and as far as praying goes, here are some specifics: pray for clear communication with the new doctors, safe travels as we drive to LA, easy IV access, calm nerves and joyful spirit for Harps, slow and easy (and safe) weaning process off of her meds, conclusive data for the doctors, and peace and patience for this mama as I watch these people try to make my baby have seizures!
As always, thank you all for praying and being a part of our journey 💜