Yesterday was supposed to be a very central day between the past and the future in our day-to-day lives.
Grace’s Mitrofanoff surgery was the end goal, the prize if you will at the end of two years of working to prevent all to frequent urinary tract infections (UTI). In order to proceed with the surgery we had to prove that cathing would solve the problems. We have found that with regular cathing four times a day (now moving to five times daily) along with a nightly rinse of the bladder and an instillation of an antibiotic would prevent the UTIs. This was further mediated as we have been able to manage her bowel movements through another process that helps reduce the pressure on her bladder.
We did everything we needed to do and it has come with limits on our daily life. With Graham if he has to go the bathroom while out and about you quickly find the nearest and hopefully moderately clean bathroom. With Grace we need a place to lay her down, a private place that is clean and would not present other infection complications. We time activities around her schedule and we have figured out how to squeeze every possible minute to the max to take care of her needs but also provide Grace with a life that does not require her being a prisoner in her own home.
We had dreams of what life would be post-surgery, the hope of freedom and exploring the world, possibly traveling a distance further than the time in between two cathings. While only delayed a month it is a draining hit from what we were prepared for.
Yesterday I went back to work traveling to Cedar Rapids for a meeting that I was originally going to miss. Joy stayed home with Grace and was confronted with the reality of Grace’s day to day cares. I pondered them while she dealt with them.
As I drove I reflected that if the day had gone to plan I would be once again driving on I-35 a drive to “the Cities” a drive I have made countless times. While in college I went to “the Cities” frequently to visit friends, travel to fraternity events, or catch an occasional GB Leighton show. A roommate in college who shall remain nameless (Ben) essentially told me that normal people refer to Minneapolis and St. Paul as the Twin Cities, but not I…to me they are “the Cities.” Little did I know that all of my travels to the Cities and eventual one year stint as a Minnesotan would come in handy navigating to all the places we take Grace to for her medical needs.
I never intended living in the Des Moines area; it wasn’t what I was looking for and I longed for life in a slightly more exciting place, a place with ready access to more, or just the ability to have adventure. It’s the wanderlust in me needing to be exercised. After waiting ten years we were on the cusp of having some freedom and it slipped away albeit for just an additional month. Don’t get me wrong being in Des Moines has presented us with some unique opportunities for Grace and we know that finding a better place to live would be an incredibly difficult task if not impossible.
Recently I was able to exercise my wanderlust on an overnight trip to St. Louis to see Bruce Springsteen & the E-Street Band. I had full intentions of maximizing those two days away but they were cut short in part due to Grace receiving an adapted bike from the Variety Club who asked for us to be on air during their telethon and on the other side an IEP meeting. Both were good things but they came with some sacrifice of which I was happy to comply.
I arrived in St. Louis, parked the car and made a beeline to the general admission lottery area to attempt to gain entry to the pit. There were only 10 minutes left, I got my ticket and waited in line and just a few minutes later my section won and were the first to enter the arena floor. Having driven for six hours I then stood for six hours and was imparted into a 35th anniversary of a cover to cover rendition of “The River”.
The music spoke just as much today as it did when originally written, two times Bruce reflected on the album that I thought of during my time on the road yesterday. “…when you’re young and you’re first startled by your parents humanity and shocked to realize that they have their own desires and their own dreams and their own hopes that may or may not have panned out the way they thought they might. And all you can see when you are young are all the adult compromises that they had to make. And you’re still too young to see the blessings that come with compromise. So all you can see is a world closing in, closing in and all you can think about is getting out and getting away…” This is true even in the present day where I find myself struggling with the blessings of compromise.
He concluded the set with “The River was about time, time slipping away and how once you enter the adult life and you choose your partner and your choose your work, the clock starts ticking. And you walk alongside not just the people you have chosen to live your life with but you walk alongside your own mortality. You’ve got a limited amount of time…do your work to raise your family and try and do something good.”
We learned today that the second urine culture that was collected prior to starting antibiotics came up negative after 48 hours and that the lab was concluding the test after just 48 hours. The test that showed the bacteria was cultured for six days. Talking with a former lab manager I’ve learned that a urine culture would be completed in 48 hours and would not be cultured for six days. So it appears a false positive may be responsible for the delays.
In the meantime my hope is that within our compromise that we are doing something good. Many times it feels like the tank is empty and there should be energy for more, but in reality emptying the tank may have been the something good.