I’ve been meaning to sit down and plug in for a while now. Sometimes I have so many words but I’m just not ready to let them flow. Today I felt defeated after talking to Lucas’ doctor, so it seemed like a good day to document my feelings. This is what blogging looks like for me. I’ve got my laptop, water, coffee, breakfast my husband made, and a view of the lovely sticks across the street. We are surrounded by trees out here. Sometimes it’s pretty to look at, but it makes isolation a bit more… I dunno, isolated? I stare at this picture above my laptop of Lucas before he was diagnosed. It was a good day. We took him to the beach. He had just turned one, and we had no idea he had a genetic disease. My days were worry free for the most part. Although he did have many feeding issues, much like Harrison does now. Anyways, back to today…
Here we are, at home. We are always at home. We almost never go out, and sometimes it drives us a little stir crazy. All of us. All seven of us. Sometimes we go for rides to hit up a drive-thru or we shop for groceries late at night, but even then we have to be careful. Germs are everywhere. This is not the kind of life that we should have to live, but it’s the one we’ve been living. It’s our reality, and so many folks don’t understand it. They question it. Family members think we lie, friends just don’t understand. It is confusing, as we have people who come in to our home to work with Lucas, and Harrison. What’s the difference? What it comes down to is risk vs. benefit.
Lucas and Harrison have autism. Lucas needs a tutor for school, behavioral techs to help him learn coping skills, and how to wipe himself, etc. Harrison is nonverbal and needs to learn how to communicate, how to ask for help, and how to show his needs. He also needs to learn how to interact with us, and his siblings. He also has a home based preschool teacher once a week. So yes, we have many people coming in and out of our home. We have been told to control what we can, which means family & friends. We hate it just as much as you do. Why would we lie? Don’t you think we would love to go out to eat, or go see a movie? You know, normal everyday things that you may take for granted.
We have to think about everything that we do, and what we could be bringing home to Lucas. As any upper respiratory virus can cause him fatal pneumonia. Let’s not even talk about the flu. Any illness that is a virus cannot be treated with antibiotics, because it’s viral. Therefore he cannot fight it. The Rituximab infusions that he recently had, has further killed off his immune system. Which means our isolation protocols just became even more strict. Once flu season is over, we still have to worry about sinus infections, and stomach bugs. Healthy people can get over them. Lucas can’t do that easily. It would be a hospital admission for him. Those types of things spread like wildfire, and if any one of us got a bug, we’d basically be putting him in the hospital.
The people that come into our home have to follow strict protocols set by Lucas’ oncologist. They can’t come over if they have the sniffles, or if anyone is sick in their homes. They must wash their hands, and use Purell quite often. We don’t expect you to fully understand, and we shouldn’t feel the need to explain this to anyone. However we do want you to understand how serious it is. We want you to know that we want to see you, and we want to spend time with our family members. We just simply can’t. I did reach out to Lucas’ oncologist recently to ask if us adults can do anything. I inquired about myself playing an open mic night, or seeing a movie with my Dad. We also asked if we could go to a restaurant during the day if it wasn’t busy, without Lucas. As much as I didn’t like his response, I have to accept it. Whatever we do could essentially harm Lucas, and we are not that selfish. However, we had to ask because it’s been over a year and us adults deserve some kind of normalcy too. Don’t we?
“Tough questions — there are no right answers because there are not data. It comes down to risk and benefit.” – Lucas’ Doctor.
So here we are, still at home. Totally irrevocably… Isolated.