I don't think that I ever thought I would or even could spend 365 days of crying straight (take or give a few days), but I have accomplished this unfortunate goal. A year of tears in the most literal sense.

Even more so, I didn't know that I cried daily until someone gently and lovingly asked me if I did. It was a weird epiphany to realize that this truly was the case, and I hadn't recognized that it was indeed a daily act until I was asked. Not necessarily sobbing, but just tears of some format.

I am glad I cry. I have always been a crier, ever since I was little (ask my mother), and they flow freely. It's my physical way of releasing all the emotional energy that builds. Like a river and waterfall, it rushes to a point where it falls and crashes so it can gently move onward.

Aaron and I have grieved this year together and differently. We are opposites; my artistic, creative, emotionally ADHD-driven brain rides in stride with his strength, intelligence, and never failing, pragmatic stability, and calm. Without his love and wisdom, I could not have survived these last 4-plus years of Deacon's illness. I am grateful.

A year ago, I sobbed hard every night. I wondered how I could endure a year in the format that I currently felt. How could I do one year, let alone two or a decade… I most certainly could not endure the next 40 years of this heaviness. The overwhelming feeling of grief washed over me. It submerged me with emotion, and I buried a portion of my dreams, hopes, and future, along with a part of myself, metaphorically and physically in the ground with him.

I worked hard to allow myself to feel all my 'feels' this past year, to ride waves of grief and the intensity that came with each grieving tide. We have been surrounded by gracious, loving, patient support that provided us with a safe environment to do so. Thank you to all of you who have given us this grace.

Over this last year, as we adjusted daily, I have had to figure out how to allow myself to cry, be melancholy, remove myself from a situation or invitation, smile and laugh without feeling guilty for feeling joy. Believe me, not feeling shame for being happy is a challenging stage to conquer in grief. I have worked diligently to find the best of each day I have been given, even amid anger or sorrow. It is an intentional act, and it's hard.

The intense isolation and long duration we had taken on to keep Deacon as safe as possible with his fragile state required us to adjust to society. We carefully reintroduced ourselves to civilization and 'life.' Our stride was dictated by the time we needed, each of us at our own pace, mode, and methods to transition to this new living format. The warm welcome and conscientious approach from you all helped ease back into this format.

I will never forget when Everett asked me in February last year if I had missed work, as Aaron had gone back to work that week. I replied that I had taken a little bit more time off and explained there are particular circumstances, a personal situation, family illness, or death, as we experienced, that allow people to take time away from work. He nodded, thought about it carefully, and replied, "how come kids don't have that option with school?" I looked at him and nodded, answering, "I don't know, that is a good question." He has his father's wisdom.

Everett's ability to finish the remainder of school in his virtual setting allowed him to have the time and space needed as adults have with FMLA (Family Medical Leave Act). I believe it has given him the time to succeed this past fall and move forward. He was able to navigate this year gradually and carefully. We are so incredibly proud of him.    

As I revisit this last blur of a year, I realize all the loud and quiet challenges that accompany us, and I hope this new year allows these to be less intense. Unfortunately, with this challenging past year (really years), Aaron and I have physically paid the price with our weight. My weight is officially the heaviest I have ever been in my life. According to both my therapist and doctor, a lot of it is from the intense trauma and survival mode we have been in these last few years; it could be months before our bodies realize we are no longer in a fight or flight mode after being in one for such a long period of time.

Personally, I have been through ups and downs (as expected) mentally, emotionally, and physically, with my hair and skin taking the brunt of the stress. My heart rate and anxiety flared with waves of grief that sometimes could only be combated with medication. And the already socially awkward person that I am (whether you agree or not, it's how I feel) was struggling to be 'normal' as I was trying to come back into ordinary societal functions, sometimes needing a Xanax to assist or, if too much, cancel last minute.

After years and years of working on building and implementing personal systems to help manage my ADHD, everything fell apart like shattered glass crashing around me. The loose stitches that held my systems in place these last few years allowed me to maintain a chaotic functional life, but this year it crumbled. The stitches finally broke on the framework of my system in late spring, which was about when I realized I was beginning to accept Deacon's death. I was a wreck; I had lost my work badge, was constantly misplacing my car keys, put my wallet in a location I couldn't remember within my own home, missed or was late for appointments, forgot to respond to messages (thank you for your continued understanding and patience here), and so on. Feeling failure at epic levels. These were issues I hadn't had climax like this since college, and it was now running rampant and ruling my life.

I finally broke in my therapy session in late May and cried to my therapist. My ADHD, layered on my grief, obliterated my already shattered life. Sobbing, I told my therapist, "All my systems are broken, nothing is working, I am desperately trying to keep up, and I am exhausted." 

She responded calmly and wisely, "Your systems are not broken; they are just overwhelmed." That perspective was tremendous for me and incredibly helpful. I wasn't failing; I was submerged in grief. We then began to work through tactics and strategies to help reduce the internal siege. It continues to be a demanding aspect that I am trying to regain control of and keep the perspective that my systems are still intact. This shift in thinking has allowed me to be patient with myself as I work through this rebuild of life.

Christmas was not easy, but it didn't bulldoze us either. As I mentioned in the post before this, I think that anticipatory grief, fear, and dread were debilitating even though he was still physically with us last year; so, to have the relief from those heavy emotions provided a gentler format of Christmas this year and a different form of sorrow. We visited Deacon in the morning and then spent the day with the Smith family. We had a wonderful Christmas dinner and enjoyed our time together, knowing that Deacon would be smiling ear to ear, looking down at us.

As we brought in 2023, my anxiousness grew, and I couldn't figure out what was causing it to bubble up. I probably overthink, but I have had systems in place for the last few decades (also part of my ADHD) to navigate my feelings and ensure that I am assessing where the emotion stems from. Was it spending Christmas without him? Is it the upcoming anniversary of his passing? Is it just feeling like he isn't here? Again, it is probably all those things to a point. Still, reading a post on Facebook from another grieving mama provided me with the answer I was unknowingly searching to obtain. It had something to do with the format: "as you bring in the new year and are excited to start new goals, please be kind and remember some people are starting a new year without their loved one."

As I read, it still took a few days to sink in and then surface upward. My blue format stemmed from the fact that I felt like I was officially leaving Deacon behind. Closing out 2022 would mean he would no longer exist in the same year as us. To those of you reading this, it may seem like that is a silly and obvious fact, but to the shattered heart, it's a devastating feeling. There is nothing logical about why I struggle with the fact that time moves forward, but it hurts… a lot. That is grief, completely illogical reasoning with the most emotional responses but always tangible and real feelings.

On the heels of this realization of transitioning into a new year, a buried aspect of my grief resurfaced around his legacy. The year's closing also brought the harsh reminder (maybe more of a realization or acceptance) of the permanent loss of Deacon's physical legacy. There will be no children to pass on his features, the void of his warmth and love as a parent, family traditions with him have ceased, and no cousins to his brother's children; it has come to a full stop. I grieve this future we will never have, and I realize that I will probably grieve with every milestone that his peers or brother achieves. Next year, in 2024, he would have graduated from high school.

I read a book this year that was life-changing for me (thank you, Emily), titled "7 Lessons from Heaven: How Dying Taught Me to Live a Joy-Filled Life," by Dr. Mary C. Neal. I appreciated many things about this book, and I have passed it on to many who have lost someone close to them with the hopes it brings the healing format it has done for me.

Dr. Neal's personal near-death story is impressive, but she also documents the challenges with the passing of her oldest son, who was struck by a car when he was 18. In addition, she details the grief she experienced with her husband and three living children. In one chapter, she describes a situation that has stuck with me. In it, she details how a teacher responded to one of her living children about their brother's death.

As Dr. Neal describes it in the book, "By then, the "novelty" of our loss was gone, and most of the world had moved on. This was made abundantly clear when a teacher at my son's school responded to his metaphorical cry for help by telling him sharply, "Just get over it! That [Willie's death] was a long time ago." For us, the loss was still very fresh and, in some ways, cut more deeply because the reality of our situation had permanently sunk in … We were all so tired of being sad, but we learned that no one ever "gets over" the pain of loss like you get over an illness." (Neal, 179)

I won't lie; this passage has stuck with me and continues to be a fear for me moving forward. The fear that our grief and journey back from the trauma we have endured will be dismissed now that the year mark has occurred. I am exhausted from feeling sad, but it's not something I can toss away and be done with. The novelty of his death may have worn off on the world around us, but there is no cure for our loss. We appreciate it as you continue to be kind and patient with us as we rebuild a life without Deacon. I have learned much about patience with people and their grief process from this, and I hope that I am seen as empathetic and continue to be throughout my life.

In the last few days, we have received beautiful cards and words of love from all of you. In one letter, a friend who had lost her child years ago wrote, "The first year was so difficult, and I didn't know how I was going to make it through, but as the years go on, the grief remains but softens." Thank you. I loved the word softens; the jagged edges that bring so many tears will eventually round off and not be so painful.   

And here we are, 365 days without Deacon. Much of this year left us feeling like we were obliterated and broken and recognizing we have been overwhelmed by cancer, anger, defeat, suffering, caregiving, grief, and death. But we have endured; maybe we could even say we survived.  We have had to take the pieces of our broken lives and pick them up to figure out what to do with them. They won't go back to how they were before, as there are pieces that are forever gone, but we will work together and build them into a similar but new format.

It was a personal goal to see if I could keep writing out here for a year, documenting my first year of grief. It has facilitated a therapeutic outlet for me to document not only Deacon's journey but my personal grief story. This site has become an essential tool for me. I hope when someone reads these posts that, they find companionship, healing, and empathy. I hope it brings awareness to the trials and tribulations of a terminal illness, death, and grief, topics society shies away from and ignores. I hope it helps someone feel relief with mutual grief or loss. Thank you for being gentle with me and allowing me to be vulnerable, as I have written honestly and publicly.

Grief most definitely doesn't end after one year of sorrow or journaling. In the same breath, my journaling on this site will end today. I have decided to take my energy and focus on the projects in my pipeline to bring this topic, our health experiences, and my learnings with friendships and transition into writing books (please keep me accountable).

I have two videos to share because they bring me smiles and joy. One is of toddler Deacon and his giggly amazingness, and the second is when we were in the hospital for his first treatment after relapse waving at me and giving me his pizza order, and looking like the healthy version of himself. 

We have our Deacon of Hope charity that we are building and moving forward with incredible support and excitement that carries his legacy spiritually and emotionally. We have almost $20,000 between our kickstart campaign and swag sales to get our platform a vital and healthy starting point! THANK YOU!

I encourage you to follow us on our website at www.DeaconofHope.org and our Facebook page Deacon of Hope to see all the fantastic things we are planning and accomplishing.

 It's been a year of tears, and while many days contain sorrow, there are days of happy tears too. We have been forever changed, and I am grateful for the impact of our son, my 'Mister,' Deacon Aaron. 

Ending with the quote that helps us carry Deacon's memory and legacy forward with this charity.

"The reality is, you will grieve forever. You will not 'get over' the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole, but you will never be the same again. Nor should you be the same, nor should you want to." 

– Elizabeth Kubler-Ross

*7 Lessons From Heaven: How Dying Taught Me to Live a Joy-Filled Life, Dr. Mary C. Neal