Brother Abe: The Endless Song and a series of Unfortunate Events.

The family enjoying some laundromat time.

Usually I try to keep the stories for Brother Abe and my fiction writing work separate. The “Endless Song” is a work of fiction that I am working on and hoping to sell. The “Brother Abe” series so far has been my best way of sharing the tales of the experience of care-giving and shared living for an adult with needs.

And yet in this rare instance both these stories are so interconnected that it would be impossible to truly keep the two apart.

To say that the months of May and June were chaotic would be an understatement. All of it starting after a wonderful trip to Los Angeles with my business partners, Phil Ivanusic and Peter Ricq. I had left Jessie alone with Abe for three days as I visited “Deadshack’s” production partners and pitched several projects to interested buyers. It was wild, wonderful and really cool.

Jessie picked me up at the airport in Boston with Abe and he was so incredibly happy to see me that he pulled me in for a big hug. Abe is tactile defensive, so it is always a big deal when he volunteers physical contact. I was happy to see him and we made the long trip back to our old home in Northport Maine. The operative word in that sentence being “old home”.

Not one day after my return we were given the news by our landlord that he had sold the house and that the new owners wanted to rent the place to their family, Jessie and I had to scramble really quickly to find a new place. This is always a challenge because not only is the renter’s market in Maine pretty spotty when it comes to finding houses, but Abe’s needs really do require a lot of specialization when it comes to housing.

Two weeks of searching, two weeks of looking at dingy, incomplete or just plain too expensive places later and we were finally able to find ourselves a place that was not only available in July but that was also a match for Abe.

We signed the lease on a Saturday afternoon. Jessie and I were finally able to relax, sure the move would be difficult but at the very least we had a place and that was the important part.

Then something happened that confirmed with us that it was indeed a good thing that we would be leaving the Northport house. That very Saturday night, not an hour after having signed the lease, Abe slipped out of my grasp as he was walking down the stairs and fell straight onto his foot. At the time we did not know this, but he had fractured his toes. Abe is so incredibly resilient to pain that we didn’t notice anything was wrong until later that evening when we saw that he was wincing and limping heavily.

Abe’s bruised and swollen foot two days after the incident.

When we examined his right foot, the one he had fallen on, we saw that it was swollen. There was no if and or buts about it. We all rushed to the emergency room, at ten pm on a Saturday, to get x-rays done. At the hospital they put Abe’s foot in a walking cast and told us to keep him off his feet for the next two weeks. Something much easier said than done when dealing with an autistic adult who literally ALWAYS wants to be on his feet.

What followed was fourteen straight days of watching Abe around the clock. No day program, we couldn’t send him because of his injury, no respite and very little rest time. Almost every minute of every day was spent either trying to helping Abe keep off his feet or bringing him on therapy rides, which also had the added benefit of keeping him off his feet.

The boot on his foot also acted as a constant menace not only to him, as Abe would get his foot caught in corners, beneath the couch or heaters but also to the rest of us. While trying to change his pants, Abe once pump kicked me (by accident) into my chest and knocked me on the ground.

Walmart mobility made for one of Abe’s favorite rides.

We counted down the days until Abe would no longer need his boot and we could send him back to day program and get the move and packing underway. Two, very long and very exhausting weeks went by and two Saturdays later, on the FIRST day we could finally take off his cast, we were treated to yet another emergency.

That Saturday morning we woke up and made our way down stairs to Abe’s room. The plan being that we would remove his giant plastic walking boot and finally take him out on a walk to a park. However Jessie noticed something that would change those plans.

Abe’s right jaw was swollen, and in pain if we were to go by Abe’s inward drawn breaths and refusals to let us touch him or examine him. It was ten AM on a Saturday. To our credit we were at the emergency room by eleven. This time the stay would be longer, four days.

A nice afternoon stroll during Abe’s stay at the hospital.

After being examined by doctors, it was determined that Abe had some sort of infection in his jawline. Abe was admitted into the hospital and immediately put on an intravenous treatment of antibiotics. Four days of watching Abe in the hospital, four days of keeping him in bed, so that he couldn’t tear out his IV.

At the end of the stay, a Tuesday morning, we were told we would need to bring Abe to a dentist who would examine his mouth and pull out any infected teeth. He would also have to be put on antibiotics for the next fourteen days. The good news when we visited the dentist, was that they would not need to pull out any of his teeth. A cavity had gotten infected and that was what had caused the swelling.

Guess who just found out he won’t need a restricted diet because he wont’ be getting a tooth pulled out?

When we got that news, Abe was so incredibly happy. He had not been looking forward to the prospect of being put under and having teeth pulled out.

And so the fourteen day marathon of struggling with Abe to give him his antibiotics began. It would not be easy.

Abe has a right to refuse any medications. And while he may be non-verbal, Abe does have very clear prompts that can only be interpreted as refusals. Fortunately when we explained to him why we had to give him the antibiotics Abe would usually allow us to give his medicine (it also helped that we gave him a spoonful of maple syrup between each dose of antibiotics).

Throughout all the ordeals of hospitals, examinations, and emergency room visits, Abe showed so much courage. He inspired everyone he met and our little family inspired everyone who saw us. The hospital staff were touched by the fact that we stayed the entire four days by Abe’s bedside. That we fed, changed and took him for walks. They were so impressed to see how cooperative Abe was whenever they came to run their tests on him.

At the dentist’s office, the anesthesiologist, a former marine, told us she had never seen a person as tough as Abe, he hadn’t so much as flinched when she put a needle in him.

For our part Jessie and I did our best to not let the complex cocktail of emotions we were feeling get the best of us. I felt horrible that Abe had slipped on my watch. I was angered at the lack of support, I looked for someone or something to blame for all this mis-fortune.

I felt horrible and guilty that he had been hurt on our watch. And what I came to realize was that it was nobody’s fault. This was an accident. There was no blame to be had and as I dealt with all this Abe was always there, smiling at me and happy that I was there with him.

We chilled and every day I would remind him that he was going to get better. That this was the same trial and fear any parent in any family would have felt and gone through. I was upset that Abe had hurt himself, but as the days went by, I learned to appreciate just how good of a job Jessie and I had done handling the whole situation.

Somewhere between Abe’s broken foot and mouth infection, my computer decided to crash. I woke up one night to hear its fan running and when I picked it up my computer was scorching hot. I was lucky enough to have saved all my data the night before. Because if I hadn’t, there wouldn’t even be a draft of the Endless Song for me to work on in the first place.

I freaked out when this happened. Both Jessie and thought that we had been cursed but there was little time to dwell on it. We would have to take care of moving everything in our old home into our new home and we have less than a week to do it. I thought to myself that once the move was over I would finally be able get back to my writing.

Now, finally settled into our new house, I can finally deliver on that promise I made to myself.

The poster for Deadshack from the ever talented Peter Ricq

July is coming to an end and as the chaos of the move, the injuries and lost computer are done, I prepare to return to Canada, with Abe and Jessie, for the premier of my first film Deadshack. This has been beyond a doubt the wildest of times our small family has ever been through. I cannot help but feel like the past three months have changed the three of us. For the better. Abe sleeps peacefully in his new room. Jessie and I work side by side in our new home office. We take evening strolls with Abe to help him sleep and fates willing he will be able to participate in the upcoming Special Olympics.

Jessie, Abe, and I went to a healing ritual held on Penobscot land this past weekend (that will be for the next article no worries). The Elders there told us that Abe was a blessing and that we were blessed for taking care of him. They called our unit a family. And that truly touched me, because since Jessie and I have been married it has been hard to get people to see that while we are being paid to care for him, that this is not a job. We are being paid to take care of our family, to make sure Abe has the life he deserves to live.

Our happy family.

He now lives in a home built with love.

In a place of respect, love and light.

Love guided us through this storm. Love will keep us together. Now and forever, now and forever.

Until the next article.

In love, light and laughter.

Be well

DaV