You Are a “Shero”- And You Need Support
What does is it like to receive a diagnosis and enter into a whole new reality with many unknowns, a lack of information, as well as a lack of treatment? It is overwhelming. As a raregiver, you are doing it all and being it all for your Rare child and everyone in your family. You are Shero, a superwoman and you need support.
Being a Pioneer
You are a pioneer, researching late into the night to find anything that might help your Rare child. You might even be willing to try experimental treatments as long as they are not harmful, even if they might not help your own Rare child, but may help someone else's down the line. You might encounter different obstacles as your Rare child ages. When you take them to the doctor, they are not the cute little kid that they once were that everyone wants to help. You may end up feeling stuck and doing more digging. Many Raregivers lose trust in the medical professionals because they drive long distances for doctor’s appointments and nothing comes out of it except data collection. This can be very disheartening.
Finding Advocates
As a Raregiver, you need to both advocate for your child and find others who will advocate for your child. You may feel like the system was not designed with your child's best interest in mind. Often Raregivers talk about needing to prepare for meetings with the powers that be or how much paperwork needs to be done to get a simple part for a wheelchair. There are many hoops to jump through, including authentications to get insurances and more. The people employed in the health industry may not be thinking creatively. So it becomes your job to invite them to do so.
Having Hard Conversations
Raregivers have to have conversations with professionals who often are unable to do much for them. Sometimes education is what is needed. You share your lived experience and you learn about a case manager's limitations, which takes time away from precious moments you might spend with your Rare child. You learn how to ask questions like "how can we make this happen?" And would you be willing to…? The life of a Raregiver is complex and requires you to do many, many things as well as take small moments to care for yourself and this is why you are a true Shero.
