It had been quite a summer. Multiple trips to the hospital to adjust oxygen settings, to resize the trach cannula, and to inflate and dry out tiny damaged lungs. From that early morning in May when Sarah's permanent trach had been placed, she continued to baffle the doctors. Her outward appearance often looked good, yet blood draws, monitoring machines and nurse vitals suggested otherwise. It was at times discouraging and mentally draining to continue to advocate on her behalf.
We learned quickly that ambulance rides to the nearest emergency room were often met with over zealous residents who wished to perform procedures that were most certain to jeopardize the progress that had been made and maybe even her life itself. Articulating our position was at times not easy. So we started transporting her in the car when emergency struck. At least we knew if we could get to the Cleveland Clinic there would be doctors who knew of her complicated medical history.
I had used every last minute of my earned vacation time on these hospital junkets. So as September arrived, I was so looking forward to the long Labor Day weekend.
We all woke up a bit later than usual. Sarah was doing much better and that felt good. After several months, we were finally getting into a groove. John was staying home with the kids, while I went off to work each morning. It was a new role for both of us and we needed time to figure out how it was to work. There had been a few tense nights for sure. We were no doubt dealing with a difficult set of circumstances and plagued by a few people who were not particularly supportive of the situation. Yet, we were managing.
We determined night time air was better for Sarah's respiratory system, so that is when we would take her for walks and bike rides (please know I too am cringing at the lack of a bike helmet-it was 1990-before helmet safety and law enactment). She loved riding on the back of John's bike.
TJ liked to tag along too. He most always just went with the flow of life. Never a complaint, never a tantrum. (well there was that one at Sea World:) It's funny how when looking back, you remember strange little things. Like the creaking noise of those colorful things on the spokes of his bike. One of the many fads of his lifetime. A must have purchase at the moment. Today, few remember them without a picture to remind their memory. A funny memory I am grateful for. Tough years, yet I would not change much about them.
History does have a way of repeating itself. Twenty years later, again we look forward to this long weekend. All summer we have been on high speed. This time a good running though, as we prepared for the opening of our quilt store. For Sarah's 21st birthday. A day we certainly never anticipated seeing back in 1990. TJ is still going with the flow of life. Still rarely a complaint. And likely too old for a tantrum.