Savor the bite-sized victories and joys

Amuse-bouches for the soul.

“Tell them no. They should get the information themselves.” So said Dr. G, my long-ago therapist. I’d been venting about my latest drama in the world of special needs parenting.

Jack had been 5 at the time. Back then, he suffered from various ailments. So we hit up many different departments at our children’s hospital. We wanted answers.

Before any group would see him, I had to fill out a ton of paperwork to bring to the first appointment. And those packets were no joke. Often they’d take me an hour to complete. At least. The information detailed Jack’s medical journey from pregnancy to present day. Each department had its own forms and many questions were similar but not identical.

The day of an appointment would come. I’d get asked by a nurse many of the same questions I’d already answered. Yet the packet sitting on the counter was ignored.

Then a resident might come in and do the same questions. Perhaps a high level exam would follow.

Finally, the specialist would come into the room and, you guessed it, ask me stuff the other two medical professionals had already covered.

No one glanced at those painstakingly filled out packets during the visit, though they were added to Jack’s ever-expanding file.

Back in my car, I’d question the point of it all. Each visit produced more questions than answers, as well as a referral to a different, unrelated department in the hospital. And another monstrous packet to fill out. I couldn’t see an end to it all. I was developing writer’s cramp.

It was in my therapist’s office that I hit rock bottom. I couldn’t take anymore. This relatively minor issue suddenly took on epic proportions. I felt weighted down by the piles of paperwork I had filled out, and knew there was even more to come. Forever.

I couldn’t escape this task. It was part of the special needs parent’s job, a role I never thought I’d have to play. Yet it was all just too much. I wept bitter tears in Dr. G’s office, feeling utterly powerless.

And that’s when he told me to just say no. That whenever a department called to confirm my appointment, I just tell them I’m not filling out the new patient paperwork. He said I should just refer them to another department in the hospital for the necessary information.

I gaped back at him, feeling ridiculous. It hadn’t occurred to me to do this.

Long story short, the next confirmation call came and I took his advice. Incredibly, it worked.

I hung up the phone, spun around and high-fived my husband Mike, giddy with my newfound veto power. He grinned at me and said, “This is huge. Let’s order pizza to celebrate.”

And so we did.

When I look to my own life, it’s easy to revel in the big stuff–marrying Mike, having our kids, finally getting Jack’s diagnosis after 15 years. But really, those larger than life cinematic moments are the rarity, right?

More common are the small victories and joys. In my life they often revolve around resolving administrative issues. Following up with the pediatrician’s office to get the referrals I need to help Jack. Correctly filling out confusing annual forms for his state services renewal. Getting him registered for summer camp. And yes, refusing to take on any extraneous medical forms whenever necessary.

I thought of small joys and victories last week when Jack and I met with his physical therapist. She hadn’t seen him in almost a year. In that time, he began a medication the doctors hope will help him in many different ways.

This therapist determined that Jack’s gait, flexibility and weakened hamstring muscle had significantly improved since she last saw him. While this doesn’t mean he walks perfectly, his movements look looser and more relaxed. Most importantly, he appears to have no discomfort.

We don’t know this for a fact, but Mike and I believe his progress came from the medicine. Nothing else had changed.

We had been trying to contain the medicine’s one undesirable side effect (which I wrote about here), and preparing to meet with multiple sleep specialists. In the coming months there will be more tests. And more appointments. And of course, plenty of forms. But we got a small win. Jack’s mobility has gotten a little bit better.

So yes, we partied. And pizza was involved.

Let’s make sure to always keep looking for those bite-sized pieces of happiness that are easy to overlook in the chaos of life. So when a small victory or joy like mine happens to you, try to take note. I urge you to savor the moment. Might I even suggest you celebrate? If you do, I know the phone number of a good pizza place. They even deliver.

Photo by Alexandra Gorn on Unsplash