My two bravest caregiving moments center around life and death.
In December 2015, after my dad’s kidney transplant, he was having pain in his back. This turned out to be Mucor which is an extremely rare fungus found in soil and it had attacked his lungs. He couldn’t fight the infection because of his immunosuppressant drugs for the transplant. He was in surgery at Loma Linda Medical Center to remove the fungus from his lungs. We were waiting in the lobby for the surgeon to finish and come talk to us. I told Karin my prediction is they won’t be able to get it all. I just had a feeling.
We see the surgeon walking towards us and he lowers himself to the chair in front of us.
“I don’t think I can save him.”
The surgeon explained that they removed a few ribs and part of his lung and the fungus had already begun spreading to his chest wall. He said he could have tried to get it all, but it would be a horribly painful recovery if he lived through it. So, he made the decision to stop. He was just sorry that my dad now had a large incision in his back. We told him we were going to tell his transplant team that we wanted to take him home on hospice. He agreed that was a good decision, but we needed to make sure he was stable to leave first.
After a meeting with his entire team of doctors without my dad (he didn’t want to be there), we made the decision. I walked into my dad’s hospital room where he was recovering from the surgery and I was trying not to cry. I saw him and he smiled a big smile and said, “Well?” I said through sobs, “We need to take you home. It doesn’t look good and we just want to get you home.” Honestly, I don’t even remember much after that. I do remember him saying at one point, “Well, it’s been a good run.” That’s my dad – always the optimist.
The infectious disease doctor told us he probably had a few weeks to live and Christmas was a few days away. My mom couldn’t travel to the hospital which was an hour away from home and we wanted to get him home so he could spend as much time with her as possible. He came home on Christmas Day in the middle of the night. Five days later he was gone.
That conversation with my dad haunted me for months. I relived it over and over. I realize now just how brave it was to tell him that he was dying, and we were taking him home. It’s not a conversation you can prepare for and it’s certainly not something you ever want to have to do.
Jump to January 2019…
Karin says she needs to talk to me. Our nephew’s girlfriend had just given birth to a boy who tested positive for methamphetamines at birth. The mom left AMA without ever seeing the baby. Our nephew had given the social worker our names as plan C because the child had been temporarily removed from his custody.
Karin tells me that the social worker wants to do a home visit to clear us just in case we are the assigned temporary guardians for the child. This was a long shot – we were plan C after all. The social worker came and did a thorough visit and basically told us we were it. No pressure but you are the ones that need to bring this baby home as soon as he’s cleared.
Ummm..what??? Oh yeah and we ask for a 6-12 month commitment but you can say no at any time. And he’ll probably be coming home within a week.
Okay wait a second please. Karin and I who have always been awesome aunts but really never wanted kids because we really like our freedom and we already have a lot of caregiving happening in our lives are now bringing home a newborn baby?? With one week notice?? Where’s the hidden camera??
So what did we say? Well of course we said yes like champs. Even though we were terrified. Karin doesn’t even hold babies til they’re at least 3 months old. I knew I was gonna have to step it up quickly. And I did…without ever looking back.
I read books and online articles and our neighbor, Stacey, helped us immensely. We asked our friends with kids what to do. We read more. I signed up for mommy newsletters and downloaded apps. I bought EVERYTHING. Amazon stock went up in February from all our purchases. But really, we just loved the hell out of him. And we cried and loved him some more. And Karin got over her fear of newborns within 2 days. And she managed her anxiety like a pro.
We brought home a 17-day-old baby and we kept him alive. We amazed ourselves.
Oh, I didn’t mention that we began a major home renovation and addition to add a handicapped accessible suite for my mom to move in with us. The plans were approved on February 4th – the day we brought sweet Alex home. Now THAT was brave.
To date, Alex is still with us and we are prepared for one of two scenarios:
1 – he stays with us (our personal choice)
2 – his dad gets custody
It’s really up in the air, and the roller coaster of emotions is just a normal part of our lives right now. If his dad gets custody, there’s a strong chance we won’t ever see him again. That’s a story for another day.
My two bravest caregiving moments centered around life and death.
I helped my dad die with dignity and love around him and I helped my foster son have an amazing first nine months of life despite his rough start. I can’t help but think these two events are connected. Even if it’s just in my mind.