So, I am your primary narrator, and when I say “I,” I mean me. Currently, upon writing this, I am 34 years old, and I live in Brattleboro, Vermont with Ryan, Marco, and Polo. Important things to know about me: I have had Crohn’s disease my entire life, I was diagnosed officially at nine years old and when I was 23 I had my large intestine, anus rectum, and some other organs you apparently do not need, removed. This necessary organ removal left me with an ileostomy which is essentially a colostomy but on the other side of my stomach and having no colon means that while I am still rollin’ I have to worry about dehydration and things. After the surgery, I had a period of health which ended about when Mom was officially diagnosed with PSP and as time has passed my Crohns has gotten severe again. I work from home so when Mom first started having small troubles I was the one who began to go up to spend a day with her to help her out and that day just continued for years, and of course became longer and then other days got thrown in here and there.
Most of this story will involve Kate. It has seemed like for two years she and I have taken on the world. As of this writing, Kate is 32. Kate lives in Rutland Vermont with her daughter Jazzy and her partner Russel. Before Mom got sick, Kate and I were sisters, but we were not close-close. Since this whole thing, Kate has become one of my best friends. We check in with each other at least once a day and have developed a relationship which I never really thought was possible. This relationship has given me (‘cause it is all about me, remember the “I”) the relationship I have with Jazzy, a confidant, a new-found awareness of unconditional love and acceptance, and genuine admiration of my sister. Kate is one of, if not the strongest woman I know.
As of this writing, Emily is 31. Emily lives in Manhattan with her husband, Steve. As a direct result of living in Manhattan, Emily is a removed party. This has obviously been hard on her, and she feels a lot of guilt for not being here helping and hands on. But, Mom would never want her to give up her life to be here, so we make it work. Emily tries to visit once a month.
As of this writing, Luke is 26. He is currently living at home with Dad (that happened very recently and is a long story I will tell you all about later on), and has in his way become solid support for mom and helper for Dad. Luke has his issues and is working on getting his life and head straight, but, he loves Mom like the rest of us do and despite his gender and age has even done the morning routines and bathroom (which if you read enough of the posts around here you will learn more about later on). He makes mom milkshakes, chills with mom, and is simply put, amazing with her. Luke is also infuriating at times because of his issues. But, he never tries to deny it and keeps on keepin’ on which I can greatly respect.
Debbie is the main character of this story. She is 58, and she is dying a cruel and unfair death. She is our mom, our world, and an amazingly strong woman who raised us all with unconditional love and support. No matter what we did or how much we fucked up we always knew that we would be loved. That I believe is one of the greatest gifts another human being can give to someone else and for that alone, I would be forever grateful. But, my mom gave us all more than that. She was born to be a mom and despite life throwing a shit ton of curve balls at her and Dad and all of us taught us morals and values which have translated into all of us being genuinely good people.
Chuck is my Dad, and this story is the story of my mom and Dad and the kids they raised so he is kinda’ a big deal. Like me, my Dad has Crohn’s disease. His Crohns is relatively stable these days, but this was not always the case. Growing up my Dad was on disability, as he had a surgery which resulted in intestinal perforation and ongoing problems which left him with severe daily pain and incredibly underweight. As a result, when I was in the second grade, Dad spent the majority of a year in the hospital. But, like my mom, Dad was born to parent. For example, while hospitalized He sent us cartoons he drew, and one time we all went to visit Kate, Emily and I, and we ran in and jumped on his hospital bed, and I am sure it had to have killed him with pain, but I just remember he was so happy to see us. My Dad is now off of disability because he never liked being on it in the first place. That is the kind of guy he is. He just keeps fighting to do the best he can. Like Mom, Dad taught us 100%, unconditional love. He played with us growing up, built us massive snow forts, always had time for us, and never gave up on us. My Dad is one of my heroes, and this whole thing is made so much worse because my Dad is losing my Mom.
My Parent’s Love Story
My parents have one of the greatest love stories I have ever been witness to. First, they got married, and five months later they had me. They were in their early twenties. So, you can all do the math! It is rare for marriages that began the way theirs did to last but not only did it last it thrived. When my Mom got pregnant with me, she became sober and was sober for fourteen years before her relapse when I was 14. So, essentially my parents first had to work through my Dad’s unexpected disabling health status and then years of my mom being active in her addiction. We grew up without much, and there were some incredibly hard years where most couples would fall apart, yet, I have no memory of my parents ever yelling at each other. They disagreed, but, they didn’t fight in the way that most couples would. My parents also had to deal with me being fairly sick; my sister having Juvenile Rheumatoid Arthritis and my other sister having severe eczema. My parents remain to this day very much so in love. My Dad always left my mom notes in the morning, and they always did stuff together- camping, music, walks…they have been best friends, partners, and everything. My Dad loves my mom, and we all know it, and I think that for me is one of the saddest things. The year mom was diagnosed things were looking up for them- all four kids were out of the house, Dad was working, and Mom was a nanny. They took their first ever real vacation together to Kansas City and saw Bob Dylan. They had a little bit more money than typical, and they both were finally stable. Dad’s Crohns was stabilizing, and he had one last surgery which had improved his quality of life and Mom was finally sober again. And then boom- God delivered the final blow, PSP and I think it is the cruelest thing in the entire world and my own faith had been shattered by it. My parent’s love story is a character because it has to be. Because their love story is so big, so powerful, so strong that it shapes and informs everything which comes after it.
Ryan is my partner. He spent seven months going back and forth to Mt. Holly with me helping to take care of mom and when he is sober and working a recovery program (oh yeah, fun twist, Ryan like my Mom is an alcoholic) is the most loving, supporting, amazing man I have ever had the privilege of knowing. As of the writing of this story, Ryan is 38 and from time to time might be one of this site’s narrators.
Currently, Jazzy is 3. All Jazzy knows is a grandma who is sick as a result she is perfect with mom she interacts with her like all of this is perfectly normal. But, as she has gotten older, she has become aware more and more that Grandma is not like everyone else. For example, on Halloween she was a doctor, so she could “fix” Grandma. In many ways, Jazzy has saved us all. She gives us a distraction at family events and is 100% part of the tribe.
Russell is Kate’s partner and Jazzy’s Dad.
Steve is Emily’s husband, and they have a solid relationship. They got married about a year and a half after Mom’s official diagnosis.
L.R. is my best friend, and she lives about seven hours from me. I talk to her on the phone and process all of the crap. She is the one who kept telling me to write it down. Her unconditional love, support, and validation have been some of the most important sources of strength I have been honored to receive. Without L.R. in my life, I would be not only less balanced but a lot more insane.