My daughter once wrote an article entitled “Living with the Unexpected”. At the time I thought to myself that life is full of “unexpected” events, and it is how you deal with the unimaginable unexpected events that defines you and your life. My daughter was 23 when she wrote that article. She was writing about the “unexpected” road that her life was taking. I don’t think too many people can say that they truly admire how their 23-year old daughter has handled their life, but I can truly say that I did and continue to do so. At 23 most young adults in America are still muddling through late adolescence to adulthood, feeling the world out, and trying to navigate their way. When events are so pivotal that you are no longer muddling but coping and handling and handling with a stoic maturity that is beyond your years, then that is truly admirable.
When Cate was diagnosed with UC, it was no surprise however much I would have liked to pretend otherwise. I had been diagnosed when I was 16 and my grandmother before me. Cate was well past 16 so I thought she would escape the legacy. Her symptoms came on fast and furious. When physicians recommended removing her colon I wanted to hear nothing about it. It was her decision to make but in mind I was thinking:“how can she even imagine how this will impact her life?” living with an ostomy while dating? What if the plan for having the J-pouch doesn’t come to fruition (it didn’t)? And yet…… She can’t continue to live in pain or have her life ruled by a disease if she doesn’t have to.
Five years later my daughter is living with the ostomy. It has impacted her life. She continues to psychologically deal with some of the challenges of body image and how it’ll impact her as she goes forward in her life. I admit to some sadness when I see my beautiful daughter with a slightly different body than she had 5 years ago. BUT, and it’s a big but, I am enormously proud of her. She is living her life free of immunosuppressive and other drugs needed to control symptoms, free of pain, and free of being stalked by colon cancer. Her life was profoundly impacted by this “unexpected” event, but for the most part I think that most of the impact has been a positive one. She is empowered by her knowledge and life experience as a person who lives with a chronic disease, she is empathetic to others in the same or similar position, she is a strong and courageous young woman who has chosen to be a medical social worker and be in a position to assist others while they navigate the world of “unexpected” life challenges.
Writing from the perspective of a parent who has gone through this journey with my daughter and who also lives with UC, I struggle between some feelings of “why us?” and “how lucky we are”. This experience was no walk in the park for any of us. My husband and I were fortunate in that she still lived with us so we had close proximity as does our older son. There were many sleepless nights – at home and in the hospital during 7 operations and countless days inpatient. We had to be assertive when things didn’t go as they should. We had to be cheerleaders for our daughter when we weren’t feeling very cheerful, we needed to help provide advice regarding her employment (employment equaled insurance coverage), we helped with countless insurance issues (always, always prevail when insurance companies deny something – a well spelled-out letter of explanation can go a long way to change the outcome), we had many “make Cate happy days” (usually mom and daughter days) where we would just go do something to take our minds off failed pouch studies or other “bad” news. My husband and I tagged-team it a lot. Just when I hit the peak of exhaustion he stepped in and vice-versa. Her brother was there for her as well to fill in when we both needed a break. We gratefully accepted meals from friends and welcomed visits from people in our lives who stepped in to do so.
Overwhelmingly it’s not so much “why her?” but “how lucky we are!”. My heart aches for the “why her?” moments. Moms don’t like to see their children struggle. The “how lucky we are!” for having her in our lives, for knowing that she’ll be able to live a full life free of pain and being able to do just about anything she’d like. Having an ostomy has given her a freedom to do many things that many people who live with UC and Crohn’s are unable to do or struggle to do on a daily basis.
“Living with the unexpected” is all about your attitude and your outlook on life. I have a very courageous daughter. As her mother I am very proud to have walked beside her as she marched full speed ahead down this unexpected road. It’s been extremely difficult on many levels, and but there have been so many positive outcomes as well.