Holidays and Hospitals

Once again I sit here composing a blog entry from the comfort (??) of a hospital room. Okay, if I’m being honest, this has actually been one of the least comfortable hospital rooms I have ever stayed in (and I’ve been in more than my fair share). Certainly the smallest. Still, you make due, because what other choice is there? And the size of the room or uncomfortable-ness of the sparce furniture has not negated how incredibly grateful I’ve felt being allowed to stay here each night, something I was never permitted to do with Kendall. But I will be more than happy to exchange this hard chair I have been sleeping in the past few nights for my nice comfy bed once we are finally home!

Wednesday A had her second periacetabular osteotomy (PAO) surgery, on her left hip this time. It’s been interesting to be repeating essentially the same surgery, six months after the first one. In many senses we were better prepared this time, knew more what to expect. I would say going in to this that we’ve had more overall confidence in our ability to get through it, less anxiety about how to navigate obstacles at home like stairs and showers, and it’s been evident just how much A learned from her months of intense physical therapy in how she’s able to best move and use her leg, shift her weight, and walk without putting weight on that side. It’s also meant, though, that we better understood and could more accurately anticipate the amount of pain that would be involved, the extensive amount of care she would need, the sleepless nights and grueling work ahead of us. Well, ahead of A mostly. She’s the real trooper in all of this.

So. Being round two still didn’t alleviate all of the anxiety of sending my child into surgery for several hours, or really lessen the fear response when the surgeon informed me that she had lost a lot of blood (and they were only able to transfuse a small amount back into her), or observing how pale and weak she was when I could finally see her, and watching on the screen as her heart struggled with far too low blood pressure and a dangerously high heartrate. Or witness the doctor’s concern when the spinal block didn’t wear off as quickly as it should have, or seeing her put on oxygen, something she hadn’t needed the first time. Of course this brought back flashbacks of Kendall and his body laying in a hospital bed fighting with similar issues.

But. This wasn’t the same thing. At all. Before we left home Jaime and a neighbor had given A a beautiful priesthood blessing, and in it she was given extra assurance that her heart would be able to be strong and perform the duties it needed to. Everything was going to be okay. I trusted that. I still do, even as we had some set backs and a difficult night last night that means we will likely be staying here longer than we’d hoped. Still planning on being home for Christmas, though!

The surgery this time was scheduled in Salt Lake at LDS Hospital, rather than TOSH in Murray like last time. That meant that for the first time in nearly three years, I would need to take that same freeway exit and drive on many of those same roads I’d had to each day going to Huntsman Cancer Hospital. (Jaime drove a separate car so he could return home to the other kids that evening.) I was nervous about how that drive would go, how I might react, and it was hard. I cried. And talked aloud about different memories it evoked. “This was where I got _________ phone call telling me ____________.” “That was the Jamba Juice I would quickly stop at, praying that I would be able to coax Kendall to drink a portion of his favorite smoothie and get some calories in him that day.” And so on. A was a good listener, and encouraged me to talk. It was good for me to process through all of that, get it out.

I decided to really take advantage of this trip and go all out with that exposure therapy. Yesterday I went back to Huntsman. By myself. For hours. I went to every single corner of that building, every floor. It was eerie how familiar things were, the same paintings I remembered, same smells, the elevators, the view from the windows…

There was my “favorite bathroom,” or vending machine (the one with the chewy Smarties that for some reason I have only ever eaten at Huntsman), or my favorite coveted parking spot. There was the couch I would sometimes sleep on between appointments. This was the route I would walk over and over trying to get some exercise in between so much sitting. The infusion lab. Radiology. Acute care. The financial office. The gift shop and cafeteria. Outpatient labs. Doctor’s offices. The BMT floor. Waiting lobbies.

I even got permission to go into the HICU (Huntsman ICU), even though I was not there visiting a specific patient. I saw the different rooms where Kendall had been, including the one where he died. I went in to the family consultation room where I had permission to be once a week to attend my virtual caregiver support group (because that room somehow had internet and cell service, where Kendall’s room did not), as well as where I told my children that their dad was going to die and they needed to come one at a time to say their final good-byes. The desk where I sat in on doctor’s rounds day after day. All of it.

Then I went into the chapel and just cried. A lot. Let it all out. Read some scriptures. Sat with and simply let myself feel my feelings. All of them. There was a small display where people were encouraged to write a word or two down on a piece of paper representing some of the hard things they had been holding on to, and then they could drop the paper into a bowl of water (?? some kind of clear liquid) and watch it slowly dissolve away. I chose to write down “Trauma.” And you know what, it was cathartic. Freeing. The whole process, and the tears, really were cleansing. I was proud of myself for finally facing this nameless “thing” that has haunted my dreams for so long. I don’t know if I quite realized how much power I had mentally given to a building, albeit one that did hold a lot of terror and difficult memories and experiences for me.

But at the end of the day, it was just that. A building. One filled with compassionate individuals trying to do everything in their power to facilitate the care and alleviate the suffering of the patients and families under their care. One of the places I visited was the support center, where I looked through books and brochures and learned all about the many programs for patients, caregivers, and families that should have been but were not available for us during our cancer experience in the heart of a pandemic. While it did make me a bit sad for all of the support that my children were unable to have, I wasn’t resentful. Rather, I felt reawakened admiration that we got through some really, really hard things, and all things considered, did come out relatively okay on the other end. And not just okay, stronger even, better. I also felt some renewed compassion that it’s alright there are still things we’re working through, healing that still needs to happen but that I can recognize is happening.

We’re right at holiday crunch time now, and I’m not really ready for Christmas. Mostly I suppose, or at least “good enough.” The wrapping will happen sometime, somehow. Santa always manages to pull it together in time for that magical Christmas morning. I’m trying not to wistfully think of past Christmases when I was finished with shopping and planning by October (or maybe November by the latest). The truth is, even without miscarriages and concussions, surgeries and Covid, I am still a bit blah about holidays. I no longer feel like the same person who would go over the top (yes, I admit it now that I sometimes did) with decorations and so many family traditions for every little holiday. No more Dr. Seuss Day or elaborate St. Patrick’s Day surprises. The yard didn’t even get decorated this year for Halloween, we didn’t carve pumpkins, and even doing the ward trunk or treat felt like a chore. It’s hard for me to muster up much excitement about things like decorations or other traditions. It’s like I no longer have any interest or energy in trying to go through the motions of things that once brought me so much joy and excitement. The holidays feel like a shadow of what they used to be, and mostly I’m just tired when I think of them.

Things naturally change as our children get older, but I have to think that I will someday regain some of that holiday enthusiasm. Mom’s death still feels so recent, and she was such an integral part of our family’s holiday celebrations. Grief seems to pop up more this time of year, and I’m trying to have patience with that and not be too disappointed that our first holidays with Jaime as a part of our family haven’t been as seamless and jolly as I would have liked. Christmas will be wonderful, especially if we are able to all be home and together as a family (although still missing the family members in Chile).

Because around all of our craziness lately, we have been having fun and creating new memories and making new traditions for our new family unit.

The holidays may still feel a bit blah and griefy for me, but I’m not depressed. Really. I can look back on this last year and I’m overwhelmed with how many blessings and positive experiences we have had. We are so blessed, and rich in family and friends. Maybe next year I will be able to “reconnect” back to holiday happy Suzanne. Merry Christmas, all!