Bumps in the Road

Did you miss reading our story last week? We live in the foothills in Colorado and received three feet of snow. With a strong wind that blew the snow into very deep drifts. We lost our power at 6am Sunday morning. And didn’t get it back until late afternoon on Tuesday. I decided it was a great excuse to take the week off.

Tracy spent the bulk of the week not only digging us out, but many of our neighbors as well. We needed the moisture so it’s all good!

I have often described raising Travis as being on a journey. As time goes on, I am beginning to realize that this journey is taking us to an unknown destination. I say that because we don’t know how far Travis will travel. By that I mean his life is full of opportunities. Travis can go further on his journey, further in his life, if he takes advantage of the opportunities. If he puts in the work.

As his family, we travel with Travis. We are by his side, giving him guidance and support. My hope has always been that he lands at a place where he finds happiness and purpose. Where he finds peace.

Along the way we encounter obstacles. I call them bumps in the road. Covid-19 is the most recent bump. More like a mountain. A mountain that all of has had to scale. The terrain for each of us may be different, but there nonetheless.

Having a disability makes the climb more intense.

Travis is simply unable to process the seriousness of the pandemic, although he is able to sense it. He soaks in the unease in the world and carries the extra weight of it with him.

All of our lives are off kilter. The world is spinning. Travis is unable to find his footing. Now so more than ever.

I worry about him. Excessively. Even though I know it is pointless and stealing my joy. Travis’s physical health is poor. I blame that on his mental health. He sleeps during the daylight hours and is up until late at night. Our bodies are not made to do that. He doesn’t get enough sunlight. He doesn’t eat healthy. And he doesn’t move enough. His favorite thing to do is play Xbox.

These things are all out of my control. He doesn’t live at home. He wants to make his own decisions. He is not good at understanding consequences or cause and effect.

He doesn’t make good decisions around keeping himself safe during the pandemic. He doesn’t wash or sanitize his hands as often as he should. He has friends over, none of them wearing a mask. I wear a mask the entire time I am with him or at his house. For safety, but also to demonstrate the importance.

My worry is that he if were to contract Covid-19, he may end up very ill or worse because of his underlying conditions.

In Colorado, the Covid-19 vaccine is available in phases. Similar to all around the nation I’m sure. Once Travis’s eligibility phase opened up I worked diligently to find him a vaccine appointment.

In Colorado, certain pharmacies were focusing on specific subgroups of the phase. So even though you might be eligible to receive a vaccine, you were not able to sign up unless you confirmed that you were in a particular subgroup. For example, Safeway was focusing on teachers and childcare workers. Walmart was focusing on age and grocery and agriculture workers.

Travis’s doctor is part of UCHealth. They are giving the vaccine as phases permit, in a lottery fashion. They will notify people by email when their name is picked.

Over the course of the last year, Travis lost many of his supports because providers were limiting their exposure. I understood and picked up the slack. Travis lost his job. Recently his job coach contacted us saying that he had received both doses of the vaccine through the agency he worked for and he was ready to take Travis out into the community to find a new job.

But wait. At that time I hadn’t even found Travis his initial dose. Should Travis be out in the community yet? And are we sure the job coach won’t still be able to transmit Covid-19? This is my child. I need to protect him.

And I’m thinking that if the providers of individuals with disabilities held a clinic for staff members, shouldn’t they have included the individuals that they serve? Given that they are in the same phase?

Eventually my efforts paid off and I found Travis a vaccine appointment. He received his first dose on March 12th. I can’t describe the immediate sense of relief that came over me. I know that he isn’t completely protected until a couple of weeks after his second dose. But they did schedule the second dose.

I mentioned that Travis can’t find his footing. He needs his supports now more than ever to keep him stable. But Covid-19 doesn’t allow him to see his therapist in person. Therapy has always been difficult for Travis. He doesn’t want to talk about things that hurt. His therapist is currently conducting his therapy by phone. Travis has his therapy dates and times on his calendar. Every other Wednesday at 2pm. She sends him a text reminder the day before. Even with those supports he forgets.

His therapist calls and he is in his car giving a friend a ride somewhere. Last time he was in the shower. When he called back seventeen minutes later she wasn’t available. She called a person on her waiting list so that she could make use of her time. Travis didn’t understand because she is supposed to keep 2pm - 2:50pm for him. So he became angry. And lashed out at her. And me. That’s one of the things they are working on, anger management.

But then when he lashed out she sent him a message saying to let her know when he was serious about therapy and they could get started again. Oooommm. That’s me trying to meditate past that experience.

He also has his psychiatry appointments by Zoom. I attend all of Travis’s medical appointments. So I bring my laptop and make sure he is with me and we are on time. Zoom from home reminds me of the time the school district thought they would teach Travis in our home for one hour a day. Imagine the distractions. His psychiatrist got to meet his new puppy. Travis gets up and leaves the screen, to get himself a snack. Or answer his phone. Oooommm.

Foothills Gateway, the agency that manages Travis’s care, has been closed to the public for ten months. Case managers have not been allowed to see their clients in person during that time. FaceTime just isn’t the same. Even though Travis struggles with social skills, he craves human connections.

Covid-19 has had an effect on our dispositions. So his friends can be more cranky and self-centered than usual.

We have maneuvered many bumps in the road, and we will get over this one too. I recently received my first vaccine and after much persistence, found an appointment for next week for Tracy as well.

We will be able to begin doing the things that we have put on hold during the pandemic. Seeing the grandkids. Spending time at our cabin with our friends and family. Coffee with friends. Attending a family wedding. We even have a vacation planned for the end of May, we rented a houseboat at Lake Powell.

My bucket is bone dry and could definitely use some refilling!

The sooner I am back on track, the better I can be managing the stress of caregiving.

“Driving through life you’ll encounter bumps in the road and even take the wrong course. Trust that eventually you’ll arrive at your destination.” - Joan Jerkovich

“A bump in the road does not end the journey.” - Author Unknown

“Setbacks are bumps in the road, they are not the end of the road.” - Bob Greene