Reflections: Looking back on 6 months without Lyss, Her 30th Birthday, and Summer

On the morning of March 4th, I FaceTimed my sister. Or, more aptly, she FaceTimed me. Knowing me, if I didn’t reject the first call and text her “in the middle of something, I’ll call you back in a bit,” I probably audibly groaned and started walking upstairs to find Harley. See, when she was in the hospital, Lyss didn’t care to annoy me if she knew that she could see Harley for just a second. She’d obviously ask me what I was doing or what Duncan was doing afterwards, but I could never be mad at her for wanting to see Harley, even if I made a bigger deal about being inconvenienced than I should have. Since I can remember, Bo bear, then Coco, then Duncan, and finally Harley have been members of our nuclear family. The dogs were always more family members than pets, so we’ve always loved them like so, with all of us probably being more excited to see our dogs when we got home than each other (I think most people adore the full-body wag of an excited dog more than the excitement any human can show).

I didn’t know it then, but that would be the last fully coherent conversation I would have with my sister. Later that night, things turned for the worst and I received a call late from my dad hinting I should either come down then or in the morning. As it turned out, Alyssa would end up being in what was effectively a comfort coma for the following eight days until she quietly and peacefully took her final breaths as we surrounded her. Those eight days were hectic, vacillating from me wanting to return to a life of normalcy and routine and Alyssa finally being at peace, to a state of what felt like lucid dreaming, knowing that my life was torturously moving rapidly – achingly – towards a world where my sister would no longer be with us. During these days, I tried to display what I regard as the most special qualities of both my parents, with the ultimate goal to be the support they both needed, while also balancing the understanding from the special relationship I have with my sister to provide them with a sense of comfort in knowing this was the best we could hope for after the traumatic life Lyss experienced. 

Recently, that final conversation I had with Lyss and the letter she left, have weighed on my heart heavily. Her birthday falling a few weeks after the six month mark with the first day of fall happening in between felt poetic. My sister shined during every season – her clothes in the fall and winter were certainly on point – but summer was a LaRosa tradition. It was the season we spent the most time together, even if that time was spent around a pool. This was typically characterized by me, Lyss, and my mom being envious of the tan my dad always seemed to keep the best. Lyss died a couple of months before summer started. I intentionally didn’t write about experiencing an entire summer without Alyssa’s pictures and videos around the pool, or of her putting bathing suits on Harley, or her tagging her pictures at the “LaRosa Grand” as she named it. I wanted to wait until this month to use this season without Lyss to reflect.

I knew Alyssa didn’t have much time the day we FaceTimed. I thought maybe she had a couple of more months, but I have to be honest: as much as I desperately hoped she would, I did not expect her to make it until her thirtieth birthday. Thirtieth birthdays seem to hold a disproportionate amount of importance in the CF community. Even though the life expectancy for people born with CF is in the forties now, I’d surmise that the turn of a decade is a bigger milestone than 29 or 31, so that feeling of hitting 30, of almost reaching what most people consider middle-age is an important milestone for us adults with CF. Lyss had expressed on a couple of occasions, particularly in her final months, that her thirtieth birthday and our cousin Jenn’s wedding in October – as a matter of fact, a couple of weeks before she died, she ordered her bridesmaid’s dress for the wedding – were the future events she was most looking forward to.

Thursday, September 27th is Alyssa’s thirtieth birthday. It will also be six months and 23 days since our last conversation and six months and 15 days since her death. A few days later, September 30th, is my dad’s birthday. I expect these upcoming couple of months to be increasingly difficult. Thanksgiving and Christmas are going to remind me and my parents of how much we’re missing without my sister. My mom and Alyssa were the best Christmas-ers of all time; they were the best gift-givers and they adored it. They excelled during this time of year. I’m heartbroken for my mom because I know how hard this will be for her. Once Christmastime is over, this is the time of year I struggle the most. The winter months are particularly hard for me, as this is when my depression is at its worst. I’m trying to take that into account now so I can plan to try to prevent my usual slump. 

Writing during these turbulent last six months has been valuable for me in more ways than one. Writing through the grief has made me realize that I will always have more lessons to learn. When I go back and read my piece marking one month, I wrote almost confidently in my grip on my grieving process. It’s funny to read that now because I wonder who that person was because I sometimes feel more lost than ever now. Then a day or two later, I find myself laughing and looking forward to the future, wondering how I could not feel like life is worth living, recognizing that during those final minutes with my sister, I wouldn’t have believed being capable of laughing without her around. But this is both the grieving process and life at large; progress is not linear. Through everything, there will be good days and bad days. I’ve written a lot about this, even before Alyssa died, even before my own struggles with depression. What this confirms to me is that I know that even with everything I’ve been through, I’ve developed grit. I am proud of my willingness to admit that I feel emotionally broken and lost sometimes and that I openly share that through platforms like Facebook, Twitter, and writing on my blog or new column. 

I’ve always been reflective and introspective. Before I even knew I wanted to be a writer, I would evaluate, re-evaluate, reflect, and spend time thinking about my actions, my beliefs, and the world around me. I have a fear of being self-righteous and if I’m a good enough person which probably implies that, at my core, I’m neither self-righteous nor a bad person. Reflecting and introspection lends itself to good fodder for writing, but also a potent fuel for depression, anxiety, and guilt. I’ve spent a lot of time wondering if I was a good brother to my sister, while being simultaneously aware of how much I loved Alyssa and, by all accounts, how much she loved me and was aware of how I felt. Writing through these feelings provides a blanket of comfort more often than not, mostly because honesty in my writing is one of my core values, so when I write this and publish it, I feel I’m more honest than ever. 

I’ve learned quite a bit about myself, about what I want to do with my life, and processing grief in the last half a year. One of the most important parts of coping with grief that I’ve learned is the importance in finding how to navigate that line of moving forward versus moving on. I feel like moving forward is the path you walk when you recognize that person is gone, but that you’ve found a way to walk that path with them in spirit. Moving on implies to me more of a sense of forgetting or abandonment. Finding whatever you need that allows you to cope and grieve in a healthy way is the critical part of all this.

When Alyssa died, I know she was proud of me. In the six and a half months since she died, I know she would be even prouder of me. I know she would be excited about my new writing column and a lot of other things happening behind the scenes that I’m working on. Truthfully, realizing that what I’m going through is something that not many people can understand that well has been crucial in my efforts to pursue some projects that I deeply believe in. Something I’ve learned lately: there will be people that may doubt what you’re doing or question your motives, but the people that do matter will support you in whatever way they can. That’s not really that profound of advice, but it feels profound when you start living by that mindset. 

So Lyss, to celebrate your thirtieth birthday, I am making a promise to you that I will make that project we talked about a reality and I assure you you’ll be proud. I promise I will continue living for you and taking care of mom, dad, and Harley. Thank you for being the sister you were for so many years and supporting me in everything. I hope you’re resting peacefully. You deserve it more than anybody I know. Do me a favor and tease Bo bear and Coco for me a bit. I’ll see you eventually, but not soon.