Side by Side

Those that know me personally know that I am not a huge fan of rollercoasters. They make me feel out of control. And I get that sinking feeling in my stomach. I am holding on for dear life. I close my eyes because I don’t want to see what is coming. When I get off I am unsteady on my feet. I have to take several deep breaths.

Plus, I am afraid of heights.

I’m never the person that says, hey, let’s go ride that rollercoaster. I am only there because someone else asked me to be. I didn’t choose it.

Sometimes I describe my life as being on a rollercoaster ride. That is what it is like for me raising a child on the autism spectrum, with an intellectual/developmental disability, and suffering with mental illness.

So many ups, followed by so many downs. I can’t see around the corner, but I am whooshed there just the same. Sometimes I get that sinking feeling in my stomach. Sometimes it’s Tracy that gets it.

The moment you begin to relax and think this isn’t so bad, you’re whipped in a different direction. And off kilter again.

That is my life. Just when I start to feel like things are going smooth, the rollercoaster catches me off guard whips me around.

We got through some stuff this past week or two, I was feeling like a success!

Travis received his Covid booster shot. I have to admit that even though he was fully vaccinated I was still worried. I was thinking that if anyone was going to get a breakthrough case, it would be him. He is around people all the time, and forgets to think about being safe. He thinks all is good because he is vaccinated.

We now know that being vaccinated doesn’t mean we won’t catch Covid. It means that if we do, we likely will not get as sick or die from it. Unless we have underlying conditions. Which Travis does. Travis has had a couple cases of pneumonia before the pandemic was a thing. I feel some relief because he now has the booster. Success.

Travis had his first therapeutic blood draw. The doctor calls it a donation, but it’s really not a donation if they are discarding it. Thankfully, the doctor wrote the prescription for a half unit. One half unit per month for the next six months to see if this does the trick in lowering his high red blood cell count.

While we were in the waiting room Travis went outside to cool off. He was becoming overheated which I have come to know as a sign of extreme stress. I quickly got the attention of the staff and let them know Travis would be a hard draw because he has an extreme aversion to needles. I told them he was on the autism spectrum and that the fluorescent lighting was likely going to be an issue. I told them that the longer things took, the more likely it would not end well.

Travis walked back in and I looked back down at my phone. Hoping that they got the hint. The hint being that we was going to need their calmest, most experienced phlebotomist.

They had trouble getting their thermometer to work. Travis’s forehead was too wet. From sweating. They brought a fan over and had it blow directly on him. I dug headphones out of my purse so he could close his eyes and blast his music.

One half of a unit was a good call because that was about the time Travis had enough. We all cheered. Including the guy donating in the next seat over. Success.

We got Travis a car. I found one on Craigslist that I thought would be a good fit. A used automatic Jeep Compass to replace his manual Jeep Compass. I refreshed the ad daily all week to check and see if it was still there. Tracy was out of town on business and buying a car is definitely something I feel more comfortable doing with his input.

Tracy got home fairly late on Friday afternoon. I had him talk to the seller about the details. The seller wasn’t available to show it to us on Friday. We had planned to go to our cabin and squeeze in one more weekend of lumberjacking before the first major snowfall. Which can happen at any point now, based on our experience.

Tracy asked if we could see it on Sunday afternoon. The seller said yes, if it was still available. He had appointments to show it on Saturday.

Tracy made an appointment to see it Saturday morning at 8am. Meaning we would be the first to see it!

If I’m being honest, my heart was not broken about missing out on a weekend of cutting down trees and loading slash on a trailer.

Before he hung up Tracy asked the seller what is his bottom selling price. Is this a guy thing? I feel like this is a guy thing.

The seller said the advertised price was his best price.

The car is in great shape, at least as far as we can tell. The seller said it was a one family car. He had bought it for his daughter. She moved out of state and needed something bigger, so he let her take his vehicle. Tracy told the seller that we were looking at it for our son. He shared that Travis is on the autism spectrum so needs our support picking and buying a vehicle.

The seller told us that his wife has a business where she supports individuals on the autism spectrum. She is a speech language pathologist. I told him that our daughter, Corey, has a business where she develops curriculum for parents, teachers and speech language pathologists to use with their students, individuals with learning disabilities.

I also told him that I had been watching all week to see if the car was still available.

During our test drive we stopped at our bank to get the cash to buy the car. Only it wasn’t open yet. When we returned we told the seller that we would like to buy the car and would come back with the cash after our bank opened in about thirty minutes.

He took $500 off the price. He said that he felt like this car was meant to be Travis’s. He shared that the only reason it was still available is because the people that test drove it over the week didn’t want it. He said the last person that looked said the clunking sound it was making made him feel uncomfortable. The seller was confused because he had just had the regular maintenance appointment and the garage said everything was good to go.

He brought it back by the garage and they found that the lug nuts on one of the tires hadn’t been tightened properly. Once they did that the noise stopped. The seller was certain that the car would have sold if not for the clunking sound that was easily fixed.

He told us that he thought we were good people, taking care of the needs of our adult son with autism. I gave him the information on Corey’s business for his wife to take a look at. He commented again that selling to us was meant to be and what a small world it is.

My heart was full. Not because of the deal he gave us, but because he wanted to help us help Travis. It reaffirmed my belief that most people are good.

We brought the car to Travis’s. He was happy because 1) it wasn’t a grandpa car and 2) it had a sunroof. Success.

Just like that my phone call volume from Travis resumed it’s regular pace. Back to normal. He was taking a friend on errands and he wanted to stop and get something to eat. Can I transfer some money?

Over the weekend Tracy and I talked about Travis’s emotions and how they seemed to be leveling out. We talked about how we were at the point of the Abilify being out of his system and the fact that he had been on Haldol for about a month. Did we jinx it by commenting on him doing better?

Because as of this morning, the honeymoon was over.

Time and time again the doctors would make a change in Travis’s medications. We would become excited because a new medicine seemed to be doing the trick. Until it wasn’t. Usually about two weeks later. And we would say, the honeymoon is over. The extreme agitation and aggression would be back.

This went on for years. And is apparently still going on. Travis was a mess today. He screamed at me on the phone, on my voicemail, and on texts. He begged me to give him permission to die by suicide.

I reached out to Tracy because he was in town and asked him to go by and check on Travis.

There it is, the sinking feeling in my stomach.

I received a call today from the agency that provides services for Travis. Just an update to let me know that they have still not been able to hire a replacement to help with his care. They asked me if I would like to become an employee so that I can get paid for all that I do to care for Travis. I would need to go through their training program.

I find that funny. That someone they probably have only employed for a short time was going to train me on how to provide care for my son.

I told her, no thank you.

I didn’t choose this. And sometimes I am hanging on for dear life. Sometimes I close my eyes and take some deep breaths.

I cannot tell you how happy I am to have my best friend sitting next to me on this roller coaster ride I call life. He holds me when I am unsteady on my feet.

Our love for our son makes it worth the ride. It’s so much easier because we do it side by side.

“Love is like a roller coaster, when it’s good, you don’t want to stop, and when it’s not…you want to throw up!” - Maxine

“Life is like a roller coaster, it has its ups and downs…but it’s your choice to either scream or enjoy the ride.” - Author Unknown

“Life is a roller coaster…just handle every bump that comes your way, you will survive. Just hold on!!” - Author Unknown