There was a television show, “Life Goes On,” that ran in the 80s. It was about the atypical struggles of a mixed family which included a teenage boy with Down syndrome.
How fitting the phrase life goes on.
Fitting for many of the things which happen in our lives that are hard and heart-stopping. We are swept up in the moments of the grief and the pain. All around us seems to slow down. Uncleaned bathrooms and deciding what we want for dinner are all but irrelevant, but eventually life goes on.
Fitting for the celebratory seasons too. When circumstances have aligned or there is something good in our lives to enjoy. Everything is new and fresh and ordinary is out, until eventually life goes on.
Fitting for families dealing with ongoing medical complications and special needs. The normalcy of life falls away when you have a life affected by disability. But eventually life goes on. Groceries need to be bought, beds made, and bills paid.
I heard that phrase ringing through my head during the hard hospital days of Nathan’s diagnosis and now again with the fun and excitement of our recent move. And always with Nathan’s ongoing complications.
This move has been a good thing for our family. A celebration. I walk through the halls of my new house and in my head and heart say, Thank you God. It is with incredible gratitude that I discover just how well this home works for our family. I’ve been having lots of fun. It’s like a new start. I’ve been splashing fresh colors on our walls, hanging our family pictures in new configurations, organizing cupboards and pantries that seem to have unending space. I’ve even indulged in shopping trips to buy new decor and furniture. Yet in all the celebration and gratitude for this new house I firmly believe God provided, it has been ever so slightly tainted by the ongoing complications of Nathan’s health–the part of my life that fits the saying life goes on.
I’ve tried to embrace this move wholeheartedly, while trying to manage Nathan’s issues. It’s involved triaging his needs. We treated strep throat, a nasty UTI, took him for his six month renal ultrasound and lab work all in the middle of the move. These were the parts that we put up with and took care of. But Nathan’s more mysterious problems–his episodes of unconsciousness and severe reflux–were on hold for later. Then two weeks ago we spent a couple of hours in Aerodigestive clinic and started making some real grown-up decisions.
Over the last year we’ve done a lot of researching, logging symptoms, and trialing of different meds. For one solid year we’ve been pleading for all sorts of alternative therapies in attempt to avoid surgery. Last week the doctor said, “it’s time.” This surgery, a Nissen Fundoplication, will involve wrapping the top of Nathan’s stomach around his esophagus so that nothing can reflux back up.
This surgery is a big deal because–with the exception of rare cases–it is not reversible. So if we do it and he gets worse we’re even further wedged in that little corner we can’t seem to escape. It is also an especially scary choice for us because we still don’t fully understand what is causing his tachycardia and episodes of unconsciousness.
There is a side effect to each and every medical intervention. In the end life goes on, and we have to figure out how to deal with our decisions.
In preparation for surgery we did one more test last week. A gastric emptying test which reveal that his stomach is emptying within a normal range–though it has slowed from last time. We have an appointment with Nathan’s surgeon next week. Then we’ll know if all things are indeed lining up for the surgery.
Life goes on. I’m still enjoying the reorganizing of a home. The discovering new household routines. Waking up in a new bedroom. But with Nathan’s medical mysteries life goes on and we are continually trying to navigate his complications and figure out how to help him best we can.
Also, it’s harder to wait with him in the waiting room than it used to be. Trouble, right there…and life goes on.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” – Psalm 91:4
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!