by Sally and David
Today was a long day. It’s actually been a long week, truth be told. David is dealing with a new electronic medical record at work, which is proving to be quite challenging for everyone involved. David has the pleasure of being a “superuser” which means everyone can go to him with questions and problems about the new system. And let’s just say there are a lot of questions and problems. For Sally summer season has hit again. She oversees over 70 literary youth camps and she is now in final the weeks before the launch of the camps. Thursday is her usual day off. However, today she went in just to clean off her desk that looks like a tidal wave hit it. But there were too many camp details to deal with. The desk is still a hazard zone.
In a couple weeks we head to Minneapolis for the FSMA Conference where we’ll be presenting “Tapping into Creativity: Tools for Personal Healing,” a workshop on using creativity to cope with the challenging emotions of being a parent of a child with SMA. So we are trying to pull together all the details that go along with air travel and a power chair, chair battery charger, cough assist, nebulizer, and figuring out if we need to bring the booster seat, the stroller, the car seat, not to mention all the other items that go along with traveling with a kid. We’re also in the throes of pulling together the last details of our presentation and resource packet for the conference.
Then there are the complications of scheduling band practice among three incredibly busy fathers for two shows in July that will be here before we know it. The complications of scheduling writing time when Sally has to work during her usual writing time most of this month. (Don’t deprive creatives of their creative time: the results are ugly). Then there’s the half acre of lawn and landscaping that’s slowly turning into a wilderness area, Oscar’s daily regimen of PT activities and respiratory therapies—not to mention his appointments with various therapists and providers. Nevermind putting three meals a day on the table, laundry, keeping the house from turning into a war zone.
Needless to say, we were both a little frazzled as we sat down to dinner tonight. Oscar is pretty intuitive and asked, “Dada, are you okay?”
“I’m just a little frustrated because it’s been a couple of chaotic and busy days.”
Oscar answers with, “It’s okay, Dada. Days just go on.”
And then he proudly put his rigatoni on his fingers and waved it about. Just the tonic we both needed. Days just go on.