To say I have been disappointed with people since my boys were diagnosed would be a huge understatement and I know there are many in the rare disease community that can agree. It boggles my mind how some people can simply not care, not check in with how you’re doing. I tell myself, they are busy or they don’t know what to say. But really how much effort does it take to send a quick message to let them know you are thinking of them or suggest to grab a coffee together.
I think what makes it harder is that I have always tried to be a good friend and being there for my friends and I guess expected the same in return. Now perhaps I should have lowered my expectations of others; don’t expect anything and you won’t be disappointed, right? But the day we can’t expect some sign of support from our friends when we are going through a tough time is disappointing in itself. I have learned a hard lesson about people (friends) during this time since diagnosis; still I am blindsided because I know if the situation were reversed how much I would be willing to do for them.
While disappointment overshadows many other feelings I have I focus on being thankful. I feel that people are meant to enter and exit your life for a reason. I am thankful for my real friends I still have, as well as new friends that have come into my life. Thank you for making an effort to show me you care however small it may be.
Time heals all wounds is a saying many have heard. Time also makes people forget or move on. When the boys were first diagnosed many were by our side offering their sympathy and support but 7 years into this journey the novelty has worn off, especially as the boys age.
In all the planning we do to help our children with their disease; we fail to prepare ourselves for the journey. We don’t realize how life altering the diagnosis and this disease will be. The isolation can be almost bigger battle than the disease.
The hard part of this isolation is that it’s no one’s fault, it’s just the natural
progression. While our lives revolve around doctors, and therapies everyone else is pouring their time into sports, theatre, dance, and music; the “normal” activities. Our paths no longer cross and they can’t relate to me. The truth is is that it is hard and takes effort to be friends with a mom of children with a rare disease; easier to be friends with moms you can relate to.
Sometimes I feel like I am frozen in time; other families are growing, laughing and enjoying life and we are standing still; this is isolation.
Our life is very different but just because our life is different doesn’t mean we are. We have good days and bad days, we have limitations as to what we can do. Please don’t be frustrated with us as we are already frustrated enough with our new reality. We accept it but we are not okay with this disease and never will be but we are going to create our own sunshine.
CRD Community Engagement
Kirsten Parisi has devoted her 20-year career to serving as a social worker in the disabilities community, helping people with physical and mental disabilities cope with the challenges of their daily lives. She didn’t realize how her professional life in the disabilities community would foreshadow her personal life until 2013, when her two young sons were diagnosed with Duchenne muscular dystrophy, and she was identified as a carrier. Since then, she has worked tirelessly to heighten awareness and understanding of Duchenne muscular dystrophy. At Cure Rare Disease, Kirsten is dedicated to strengthening relationships within the rare disease community to foster collaboration and research strategies for curing genetic disorders. She holds a Bachelors from Northeastern University, and a Masters from Assumption College in Rehabilitation Counseling.