For the first few months of Kendall’s illness I felt very alone, so isolated from others. It wasn’t just the physical isolation that was forced upon us because of the pandemic, which was incredibly difficult. It was also knowing that literally no one else had ever gone through what our family was going through. No one else in the world had ever had Kendall’s EXACT diagnoses (especially after we learned about some of his unique chromosome mutations), certainly hadn’t gone through all of this in a global pandemic when so many sources of support or funding or physical assistance simply weren’t available to us.
When Kendall came home from his first hospitalization I was not given a lot of warning. With the current COVID restrictions at the time I was not allowed to be in the hospital with him, meaning I was not trained by any of the staff there on the exact care he would need at home (although they did send him home with 60 pages of care instructions and potentially life-threatening symptoms to be on the lookout for, many of which he did end up developing). Due to an error at the hospital I didn’t even know he was coming home the day he did until I got a call from them saying he was ready to be discharged. I was in the middle of a painting project when the call came, our home wasn’t fully ready for Kendall to safely be there (and I couldn’t have anyone else come in the house and help), and I had to drop everything to drive the hour up to Salt Lake to get him. It felt like so much. I was thrilled he was able to come home. Of course. But once Kendall was finally situated in the car (not a simple thing) and we were ready to head home, I sat and burst into tears at the enormity of what our next steps were, not feeling up to the task that was being placed on me. (You may not believe me, but I really wasn’t a huge crier before the last eighteen months. Now….wow.) Just trying to get Kendall safely up the three steps into our home, and then down the flight of stairs of our split-level to get him to our bedroom, felt like such a scary and monumental task to be tackling on my own (couldn’t have outside help, remember – darn COVID).
I remember going to my first (virtual) Huntsman caregiver support group. I was the only one there who still had children living at home. Near the end I worked up the courage to ask how others had handled giving the type of care I needed to be doing for Kendall, and I listed a few examples. Everyone got wide-eyed and stared at me, saying they hadn’t ever had to do things like that. Then the social worker who was facilitating the group came on and said, “Um, no one has to do that at home. A person who needed that kind of care would still be in a hospital.” I felt completely invalidated, and so very, very alone in what I was facing.
I was expressing similar feelings to a friend of mine (who also conveniently happens to be a neuropsychologist), and she shared some thoughts with me about how a person can develop self-compassion. I was surprised when she said that one important aspect was learning to connect with others on a human level. I hadn’t ever thought of it that way. Other people might not have had the same experiences I was having, but certainly people could relate to feelings of fear, loss, inadequacy, or being overwhelmed.
That moment was such a critical turning point for me in the whole experience of Kendall’s illness, and with everything that has come afterward. I realized that EVERY person’s situation is unique to them, but that it didn’t really matter. Only Jesus has suffered all pains and can understand EVERYTHING we might be going through. I may not share the exact same life circumstances as someone else (none of us do, really), but I could still connect with them on a human level. I started looking for ways that I COULD relate to the people around me, even ways that maybe I could get out of myself and offer support. My entire attitude shifted that day, and I consciously changed how I interacted with people at Huntsman, how aware I was of others, and I can also now recognize a shift in how I wrote Meal Train posts. I did indeed feel connected to other people, despite the physical isolation we were living through.
That ability to feel connected to other people on a human level, those feelings of compassion I have cultivated, is probably one of the most impactful and lasting lessons I have learned from the past year and a half. I really can’t think of anyone I know whom I do not like. I know I use the term “friends” quite liberally. If I know you on any kind of personal level, I probably would refer to you as a friend (although I’m sure there are plenty of those same people who wouldn’t think to call me a friend). Maybe acquaintance would be a more accurate term, but I feel friendly toward others and so in my mind think of them as friends. So many people in this world are genuinely good, and generous, and I do feel connected to them as humans.
I generally believe that people are trying their best, acknowledging that everyone is fighting demons and carrying burdens we can’t see. Everyone has a story. Every single person is loved equally by our Father in Heaven. I know there have been times in the past when I have been judgmental of others, comparing them to standards I had set for myself and sometimes finding them lacking or not measuring up to my preconceived ideas. I don’t think I do that anymore (or at least much less often, because there are trying parenting moments…). It’s made such a difference especially because I have stopped doing it to myself, or at least am trying really hard not to. There are so many things that simply don’t seem to bother me anymore. I just love others, in a way and to a level that I don’t know that I ever felt this fully before. I want to help them, want them to feel my love toward them, and hopefully then feel the Lord’s perfect love for them. So if you’re reading this, I do genuinely love you. I hope you know that.
