Ronan had an appointment this morning. It was the fourth appointment scheduled this week. Today’s visit was a follow up for some ankle and leg problems Ronan’s been having. His odd gait, and that he’s taking longer to walk from here to there, prompted the first appointment.
That appointment went mostly well. The doctor could see that, yes, something was off.
Yes! I thought.
My concerns were validated and they would be addressed. But I was frustrated. By the time that appointment was over, we were referred to two more providers and given a few scripts. The first one was for a physical therapy evaluation and the second was for orthotics.
One more thing.
One more appointment to…no, make that two more appointments to schedule.
Ronan’s had gait issues before. He was diagnosed with ataxia many years ago. As he approached his first birthday, Ronan tried to walk. But he was unable to stay on his feet and take any steps. With therapy, the use of a walker and lots of encouragement, Ronan finally walked on his own before his third birthday. But his gait was off. He looked wobbly. He lost confidence and would stop walking. His walking was touch and go, and we couldn’t understand why. So we headed back to the doctor.
The doctor called it intermittent ataxia. Ataxia because of the lack of coordination. Intermittent because it would come and go. We’d hear that term intermittent with other diagnoses Ronan would later receive. Intermittent exotropia. Eye wandering that would come and go. Intermittent seizure activity. Seizures that would come and go. Intermittent constipation. Poop that would come...and then not.
That word intermittent had some of our providers scratching their heads. We’d ask them what does it mean? Why only every now and then? How does that happen? Could it be related to the other issues Ronan has?
For some of our providers, intermittent gave them a pass—well, it’s not happening all of the time, so how about we wait. We can watch and see what happens. They’d say they’d adjust things down the road. I could understand that thinking, but I wanted clear answers and definitive treatment now. The watch and see mindset might work only some of the time. It certainly wouldn't work during episodes when my son was seizing, or when he physically couldn’t walk, and when he couldn’t communicate that he was in pain.
When Ronan is in pain, and I feel it too. I may not feel it physically, but it hurts to watch my son face the struggles he does. My ability to cope is directly affected by each struggle—both his and my own. That’s when I find that I'm dealing with intermittent emotions. From feeling frustrated or downright overwhelmed to feeling grateful and excited, each day is different. Each day could require some sort of adjustment, including how I handle emotions. That's why I haven't perfected how I react to Ronan's seizures or when he's in pain. But I keep my emotions in check during those episodes so that I can focus completely on him. When he's okay, only then do I steal away and break down quietly so as not to overwhelm him. Thankfully we haven’t had a day like that in a while.
We've had a few good days in a row now, including today. This morning's follow up appointment was easy. Even though I’d forgotten the usual bag of tricks I bring for the waiting room (which contains the iPad, a few snacks and some fidget toys), Ronan managed his behavior well. He also did well when it was time for the doctor and I to talk about further treatment and the next steps. It was a long appointment, but it was a good one.
At the end of the appointment, unlike the first one, I walked out of the exam room feeling more confident and had less of a To Do list. That's because adjustments have already been made. Ronan already saw the two new providers that were recommended. He's already gone through the physical therapy evaluation. He’s already been fitted for and is using the orthotics. At the end of the other appointment it was daunting to think about that To Do list and making the changes we needed to make, but being able to cross off those items brought us closer to the next step: starting therapy.
Today I’m feeling optimistic that we’re on a good path. Time will tell if it’s the right path. Ronan is still uncoordinated. He still has ataxia. And he still seems to be in pain every now and then. But we’re hoping that with therapy we can begin to correct some of the slow and awkward movements Ronan makes. In making those changes, and in teaching him how to shift his body this way and that with more ease, we hope it will help him navigate and enjoy his environment better.
Moving through life isn't always a smooth and easy process, but with patience and encouragement I know that both Ronan and I will continue to make whatever adjustments we need to make along the way.