Sunday, August 17, 2025

Sunday, August 17, 2025

Tonight's picture was taken in August of 2008. Mattie was pictured between Jessie and Jenny (his art therapists). Jessie and Jenny came into our life right from the beginning, and it was through Jenny that we got connected to Linda (Mattie's child life specialist). Honestly I do not know what we would have done without all three of these women. If you have never experienced the power of art and creativity, and how it elicits feelings and conversation, then it is hard to describe what I am about to say.... but art therapy revealed so many deep seated feelings and fears that Mattie had, which he couldn't verbalize. Art also enabled Mattie to work beside other children with cancer and through these interactions, not only did the children bond, but you could tell that they felt understood and not alone. 

Quote of the day: Unspeakable feelings need to find expression in words. However... verbalization of very intense feelings may be a difficult task. ~ James A. Chu

There are many factors in my life that lead to my loneliness. I have the trifecta... 24/7 caregiving, the death of a child, and being abandoned and divorced after a 37 year relationship. Any one of these issues, would be more than enough, all three, make it the perfect storm. 

My grandmother suffered a stroke when I was in college. I saw the impact on my mom and her social life. Our home turned into a hospital and with that, slowly friends stopped visiting and interacting with us. This experience was so traumatic to me. I was in my twenties, and I decided then and there to get my doctorate in mental health counseling, specializing in the mental health care of family caregivers. When I entered graduate school, every research paper and my dissertation focused on the stresses of caregivers. I was desperate to understand what happened to our family and of course what I learned was we were NOT unique.

It is thanks to my personal and professional insights on family caregiving, that I now can normalize my current experience. I know nothing is wrong with me and there are thousands of caregivers all over the USA facing what I do each day. That said, it doesn't mean that at times I do not feel depressed, anxious, and hopeless. Not to mention very angry that my husband signed us up for full time caregiving, but then left me to manage the impossible. 

I share this photo so you have some understanding of what I see on a regular basis. No matter the time of day, my dad is typically sleeping. Even sitting upright in a restaurant. If I did not work hard at getting him up and moving each day, I am quite certain he would not be able to and this would change the trajectory of his life and independence. 

The highlight of our day, is we had a phone call with our cousin Maureen. Maureen is a woman I deeply admire because she has devoted her life to caring for a countless number of people. She has done it without the expectation of positive feedback or any kind of renumeration. It is her calling and her passion, and I say it is a calling because it is very hard to selflessly give of yourself each and every day, without a break, and knowing with each piece you give to someone else, that piece comes out of your own physical and emotional bank account. Which is why Maureen and I understand each other very well.... we speak the same language, and for me it means the world to me when someone understands what I am going through without me having to explain or justify it!

While at the restaurant today, the topic of my marriage came up! Given the devastation that has occurred, this is a daily topic of conversation. When you experience great betrayal and abandonment, it can be all consuming, and it can destroy your life. For me, I feel like my life is over, my life has been destroyed, my history erased, and whatever future I thought I was going to have has vanished. What has happened to me causes me great upset, anger, and sadness, wrapped into one. I was so upset at the table today, that when I put my glass back down on the table, I did not realize the force at which I did this.... because the glass broke in multiple places. I am quite sure that it is easier being on the outside of my horror, and being on the outside enables one to say to me that with time these wounds will heal. But I say..... I highly doubt it. The best I can hope for is to find a way to live with what happened to me, just like I have learned to live with Mattie's diagnosis and death. I have never accepted any of this or gotten over it, but instead, have learned to live with the multitude of thoughts, feelings, and pain associated childhood cancer and Mattie's death.