A Paradox of Painful Blessings

Preface

When Sara and I started Love Your Buns in 2018, we came up with a million ideas of how a project or organization like Love Your Buns could impact the world. I like to think we’ve achieved some of them. One of the key ideas Sara always wanted to keep central to Love Your Buns, was ‘an inside look into the patient experience’. Although every patient’s experience is unique, providing others with as many details as we could about Sara’s treatment journey could provide insights to others on how to approach a problem with their oncologist, or what questions to ask around clinical trials.

Sara has continued to think about others as she traverses this moment in her life - and in her selflessness, she asked that I provide additional updates to this blog throughout her journey. I hope this entry is a meaningful contribution to her story.

The love of my life is on hospice
Please bear with me as I ramble throughout this post. As I’m sure it is for many of you - I love this woman with all my heart, and I will tend to say a lot about her when I can.

This shit sucks in so many ways. I could write endless paragraphs about the pain this situation brings. The memories that are flooding back of all the struggle she’s faced over the last five years, and the frustration that I have in how it all has turned out,

I won't lie, there's some beauty in it too that I can appreciate. We’ve all been fortunate to have time with her in these weeks. And these moments mean so much to me. But yes, the persistent gut-gnawing of anticipatory grief and the increasing incidents of traumatic grief are just so painfully real right now.

How are you all doing?
The common answer to such a question is that we are ‘hanging in there.’ Sara came home for hospice care on Wednesday, September 29th. As you can imagine, this day and the subsequent couple of days were very emotional - but therapeutic bouts of sobbing, reminiscing, and voicing of our frustrations with life, and expressions of our love for one another.

That first week was filled with a flurry of activities, visits from family and completion of to-do lists. These are the worst kind of to-do lists, but once again here’s that paradox - there’s also something really special about being certain that Sara’s funeral arrangements are being setup according to her wishes, including the musical selections to be performed.

We’ve forged great family memories

One last set of family photos
Shortly after arriving home for hospice care, it was discussed that Sara’s cousin would be around and wanted to stop by. She’s been a wonderful photographer of some of our family photos in the past, so this felt like a very fitting way for us to commemorate this painful but treasured moment in our lives. Thank you Kelsey - we love these photos very much, and are so thankful to have them.

Attended an FM Area Youth Symphony Orchestra Rehearsal
Our son Callum recently auditioned and was accepted into the percussion section for the FM Area Youth Symphony Orchestra - which is a prestigious orchestral group that is primarily inclusive of skilled high school musicians. We are so proud of Callum for auditioning in the first place, then hearing that he nailed his audition and was invited to join was amazing.

Sadly, upon moving to hospice, it was becoming clear to Sara that she would not be able to attend the first concert, coming up on October 24th. So we reached out to Jane Capistran, the conductor to see if we could arrange to attend rehearsal so Sara could hear Cal play with this great group. Mrs. Capistran graciously accepted and setup a spot near the percussion section for us to listen in. Thanks Jane!

They were amazing! It was a rehearsal of course, so we got to watch and listen as they worked on various parts of multiple pieces, but the orchestra sounded really very good. And Cal sounded great! He’s truly a solid snare.

Spent quality time with siblings, niece and nephew
We celebrated our niece and nephew’s 4th and 2nd birthday’s early on. It was a great day, with great family fun, but I suppose also a stress test for Sara. Unfortunately, she has had times of anxiety, where she just couldn’t really tolerate too many people and voices all at once.

But overall, the time she’s been able to spend with the family has been very meaningful for her. Whether it has been just sitting down to talk, or getting her nails painted, this has been meaningful time well spent for her.

Artistic Commemorations

Mother and Child Handprint Art
One activity that the hospice chaplain suggested, and we have loved was a painting and pressing of hand prints for Sara and each of the kids. This was really meaningful, and these pieces will be so close to our hearts as we move forward.

Thumbprint Pendants/Charms
Another really cool idea was to collect Sara’s thumbprint pressed into a sort of clay template, which will then be used to create charms or pendants for a necklace. We loved this idea and I know the kids and I will cherish these.

Tributes to a Mother
Our son Callum is one heck of a young musician. As mentioned earlier, he is a skilled percussionist, who plays in the Liberty Middle School 8th Grade Band, the LMS Jazz Band, and the Salty Penguins band at Elevate, in addition to the youth symphony orchestra. But he’s also an aspiring composer - in a lot of ways already surpassing his dear old dad.

Immediately upon Sara’s transition to hospice, he started work on a new piece in her honor, which I believe is a therapeutic process for him. He completed this composition for her within the first seven days. It is a beautiful piece in many ways. One way that it is immediately beautiful to me is that it a journey. I feel it represents Callum’s reaction to this journey that Sara is on, and is a unique manifestation of his emotions.

Saying Goodbyes

October 6th was the first night we all truly 'felt' like it was the night we'd lose Sara. It was so hard, and what an understatement that is. That night and that experience. We all, I think including Sara, believed she would pass that Wednesday night. So much so, that I asked Callum to immediate play his work in progress composition for her right away after coming home from school. Despite her being on hospice, the feeling of this day still felt sudden. Were we really ready for this?

The kids and I, along with Sara’s parents and siblings all took turns saying heartfelt goodbyes. We were all wrecked. But Sara seemed peaceful and resolved that all of us should take the time for a proper goodbye to prepare to let her go. I don’t know if she truly believed she would die that night, or if she just felt in that moment that it was still a needed aspect of closure,

Bailey’s and Crab Legs
Going along with this feeling that it was a final night, Sara asked for some Bailey's Irish Cream and we also got her some crab legs - some of her favorites. She'd been craving Bailey's for a couple years there, where she would abstain otherwise as she was trying to protect her liver. But now, if she is dying, then why shouldn't she have some Bailey's? And the crab legs - we had previously discussed that we would try to get to Red Lobster for her birthday on November 1st. But of course when the move to hospice happened, that didn't seem like a possibility. She ended up not eating that much of the crab legs. but she loved it - and I’ll never forget Sara’s brother Nick’s act of kindness here to go to Red Lobster to get Sara those crab legs in that emotional moment.

In her calmness, Sara also appeared to be visibly shutting down. The words she'd say were slurred and barely audible. Movements were slow and weak. This was very alarming to observe, and only furthered our feeling that 'tonight was the night'. (I’ll note - I’ve since realized these behaviors were simply the effects of stronger opioids and sedation than she was used to)

But despite the palpable fear, I also just wasn't seeing the physical reason that she should be dying. As in, I could observe that her body continued to function, and her skin color looked good. But the mood in the room for much of the evening was still somber - and that her time may have still been upon us. So we all tearfully listened to Sara's favorite worship songs, hymns and reminisced on good times.

Jerry!
Later, while helping her take a few drinks, she expressed annoyance that I kept trying to take away her cup - 'Jerry!' From a tone of voice that I clearly recognized - there was a sentiment in that one word that was both frustrated and also very endearing to me at the same time. And I loved it. I thanked God for the chance to have her be annoyed by me just one more time, and every word she would utter to me over the next 12 hours brought me to tears (oh and yeah she’s been annoyed by me plenty since then - by the way ☺).

Heart wrenching yet profoundly beautiful moments

By the next morning it was clear to all of us that we weren't going to lose her just yet, and at the same time I think Sara was finding a new stride with pain management that showed her a way where we could all relish a little more time together, and yet hopefully not feel like she would need to lean in on aggressive comfort care. The serenity I felt when I understood we still had more time was very significant. I knew it wasn’t months, but it was time.

Since then I wanted to believe October 6th was just a setback in her final chapter, with lots of extra time yet to come for memories and time with family. It hasn't exactly worked out quite like that. Every day Sara is facing new challenges, and she’s getting closer to going home with God. But we have also continued to have many profoundly meaningful moments with expressions of grief, love and gratitude. And I continue to cherish every moment.

In closing, please know that Sara has been so appreciative of all of the kind words, prayers, and love coming from you all. She likely won’t be able to read any of your messages directly anymore, but I promise to read them to her as they continue to warm her heart.

Much love to you all,
Jarod

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Update 10-15-2021 — Our beloved Sara passed away the very next morning after this entry was posted. Again, thank you all for showing her love and support over the years.