It is often said that how we deal with challenges defines us. The interview that follows, with Ted Brown, Mountain Shadows Foundation Board of Directors, shares his family’s story of the challenges they faced during the pandemic and demonstrates that truly, love is an action.
Let’s go back to the beginning of the pandemic. Can you tell me what was happening in your family during the first days and weeks?
If you go back to that weekend, in March 2020, when the world changed dramatically, my oldest son, Austin, was living in Chicago and we thought, “It might be good if you come to San Diego given the circumstances.” So, he came to San Diego, and within a day or two, we realized that things were pretty serious.
Our other son, Parker, lives at Pine house under normal circumstances. The way to think about Parker is, all of the daily things that you and I take for granted – the ability to dress ourselves, the ability to bathe and feed ourselves – these are things that Parker has challenges with. So, someone has to help him, every day, for many, many hours a day, with all of these daily things.
In March of 2020, everything about COVID-19 was still an unknown. My wife, Jessica, and I wanted to minimize the risk of exposure for Parker, because in addition to his challenges with daily living, he has medical issues, and if he were to catch COVID, it could be very serious for him. So, we decided Parker should come home too, and we thought, “Oh, this might last a month and we’ll be fine.” But it didn’t last a month.
So, all of a sudden, we’re living in a small condominium, and we have our two adult sons living at home with us. It was very tight quarters. It was, obviously, a change for everyone, and I would say that most of us in the household were doom scrolling the internet that first week, and it was just terrible news after terrible news.
You mentioned Parker’s challenges in terms of daily living. Can you give us an idea of what a typical day would be like in terms of caring for him?
Our daily routine started in the morning at 7 am. First, we needed to get Parker out of bed. He weighs about 120 pounds, so we couldn’t just carry him and pop him into a wheelchair. We needed a Hoyer lift to help with that. Then there was dressing him, brushing his teeth, administration of medications – not just a couple, but many medications. Then breakfast. Parker can maybe drink something on his own, but he really needs help with feeding.
After breakfast, Parker took classes on Zoom, which was not ideal. I would say that it’s especially challenging for special needs students to attend school in a Zoom environment, because there are lots of distracting noises in the background and you’re fiddling with cameras and microphones, and many of the special needs students have short attention spans in the first place. So, it’s very challenging.
That would usually last for a couple of hours a day. Then he would have speech therapy through the school and that was a separate Zoom session. In addition to the Zoom school, of course, there was lunch. And then, most of the time in the afternoons, Parker would have some follow-up appointments with the urologist, with his hip surgeon, and from time to time, he gets some injections to help with the tightness that he has in his muscles. Eventually, once it was allowed, he received physical therapy and massage therapy, each of those about once a week.
Then there was dinner and after that, bathing Parker. To bathe him, you have to transfer Parker from his regular wheelchair over to his bath chair and that goes into a roll-in shower. After the shower, there was the bedtime routine. So, by the end of the day, although we were sharing some of the effort around his caregiving, we were all pretty tired.
In years past when Parker was living with us, we had some outside support caregivers. They would come to our home and help with Parker’s care. That really helped us out quite a bit. But under this circumstance, we did not feel comfortable with having outsiders in our home because of the COVID exposure risk. So, although it was wonderful having our family close by, it was very consuming. I would say we kind of went into survival mode to some extent at first, but like I said earlier, it was also great to have our family there. We knew everyone was safe and we enjoyed spending time with each other.
Then, as you said, the pandemic didn’t just last a month. What was it like for your family as the months went on?
After a month turned into more than a month, we realized, “Wow, this could really go on for some time.”
To add to the normal daily caregiving, Parker has cerebral palsy and it’s very common with kids and adults with cerebral palsy to get dislocated hips – and both of his hips were dislocated. He was originally scheduled to have surgery in May of 2020, but, if you remember, there was a deferral of elective surgeries. So, we had to defer that surgery to August.
We knew ahead of time the surgical recovery was going to be fairly long and challenging. He was in a cast with both hips, basically, in a kind of lower body cast. And so not only were we dealing with his feeding and bathing and all of those things that I mentioned earlier, now, he’s in a body cast.
He was in that cast five or six weeks. And he was in a lot of pain. He was supposed to be going through physical therapy at that time, but that was challenging to accomplish.
Then there were some issues that arose during his recovery. First, he got kidney stones and had to be hospitalized, and then during the hospitalization, he had sepsis, which is very serious and very scary. Sepsis can be deadly. It’s very serious stuff.
Then we found out his left hip was dislocated again. So, he had to have a second hip surgery on the left hip and ended up back in the lower body cast for another period of four or five weeks.
So, we’re living in this tiny condo and dealing with all of these challenges. My wife and I decided, “Oh, my gosh. We have to get a bigger place.”
One of the other challenges with a family member who’s in a wheelchair was finding something to fit our criteria. The real estate market was very tight back then. There was nothing on the market that fit our criteria hardly at all. We wanted to have something that was a single story on a relatively flat lot with some accessibility. That was very challenging to find. But eventually, we found something, and we ended up moving in December, and we really have enjoyed our new home.
Is Parker still living at home with you?
Parker was vaccinated in February or March, and all of us, as family members, were vaccinated as well. So that was a sense of relief when that happened.
Parker returned to Mountain Shadows in March of 2021. Initially, visitation was allowed outdoors, and that was wonderful. And we would go see him a couple of times a week and have dinner with him, or what have you. And then maybe a month or two after that, things opened back up again, where we could get back into our normal routine, which was, he lived in Mountain Shadows, and he attended school at the Escondido High School District. And then he would come to visit mom and dad’s house on the weekend, usually for one night on the weekend.
And that works out wonderfully for Parker. He still has his independence and he actually asked to return to Mountain Shadows. He wanted to go back and see his buddies and that’s wonderful, but we also get to keep close tabs on him and enjoy time together with him. So overall, things are way better than they were. It was a challenging time.
Looking back now, would you do the same thing? Would you make the same decision again to move your sons back home with you?
Absolutely. My wife and I have discussed that. We are very much at peace with the decision we made. It was a huge challenge, a huge challenge. We are so grateful that Mountain Shadows exists for the long haul, but yes, for the short term of the pandemic, that was the right decision for us.
How was the transition back to Mountain Shadows for Parker?
Really very smooth. Kudos to the staff and the regional center and his school. Everybody was on the same page for his transition. And there were a lot of moving parts.
Parker did a wonderful job with the transition. He really was looking forward to going back to Mountain Shadows, to seeing his roommate, to spending time with his buddies and the staff who he missed. He would tell us about that. So, it was a very successful transition in my opinion.
Would you say your feelings about Mountain Shadows changed due to all that has happened?
I would say my feelings about Mountain Shadows have intensified. I just am so thankful that Mountain Shadows exists and it really made very concrete that we need a place like Mountain Shadows for so many different reasons – for the day-to-day living support, and also for that sense of community and the ability for people like Parker to be as independent as they possibly can be. We as parents, of course, we want to love on him and we see him once a week or maybe more than once a week, but we also want him to be his own man and Mountain Shadows enables that.
I know that the staff at Mountain Shadows, they’ve been through fire and there are some incredible human beings who work at Mountain Shadows and we should all be grateful for them. I, as a parent, am grateful for them.
Looking back, what do you think you’ve learned as result of all of this?
I think back to before my wife and I were married. I was in the Navy at the time and we were being married by a chaplain, Chaplain Rubino. We went through some pre-marriage counseling, and Chaplain Rubino emphasized, with my wife and I, that love is an action. I think during the pandemic year, we learned that love was an action.