Tags: brain injury, Living with Hypothalamic Hamartoma
The Fourth of July is always such a fun day of celebration in the US. It represents so much for our country and the sacrifices that were made for a chance at a new life. It is celebrated with barbeques, family gatherings and fireworks!
Independence can have a very different meaning for many families touched by HH. It is not as easily defined and can seem to change in a moment. It might be for the better, through surgical intervention or a medication that works, or it can be less positive like a new seizure type or the sudden increase in seizure activity. Perhaps as a community we can change the conversation a bit and focus on what independence can be and how we can collectively influence the outcomes for all.
The definition of independence for our son CJ is finding opportunities to help him function as independently as possible in the community and one day have a job that both fulfills him and helps him become financially independent.
CJ has had 4 HH surgeries and struggles with memory, endocrine issues and critical thinking. However, CJ is also an incredibly kind young man, an amazing photographer, and is creative beyond my wildest imagination! CJ also turns 21 in a week and the world has many expectations of a young man his age. Unfortunately, his challenges aren’t often recognized let alone understood by the people he interacts with day to day.
Fortunately for us, just about a year ago, we found an incredible resource called “The Center for Transitional Neurorehabilitation at Barrow Neurological Institute
” in Phoenix, AZ. It is an amazing center for individuals with Traumatic Brain Injury
. They focus on intensive cognitive and physical rehabilitation at all levels.
While I am not exactly sure why we were never told of the center before now, I am forever grateful that we are here. My instincts tell me that too many medical professionals we approached were of the opinion that HH is rare and not many professionals would know about it as a complex condition – let alone understand how to treat the challenges that arise from both the lesion and the sometimes negative impacts of surgery.
My thoughts for those of you who are also struggling with independence for your loved ones – no matter what their age, are these:
- You know your loved one best – help them define what independence may look like for them and you!
- Always set the bar high! So many professionals lower expectations and then limit options. Don’t let them force you to compromise.
- Be creative. There are businesses out there that are motivated to help individuals with disabilities. Millennials are also helping to redefine the workforce and what employment looks like today.
- Be inspired by some of the new “Founding Fathers” of business – Steve Jobs (Apple), Richard Branson (Virgin Airways), and many other leaders in their respective fields.
- Do your research – there are other resources for individuals with the conditions we struggle with the most. Look within your community for those helping Traumatic Brain Injury (TBI) patients, Brain Tumor Support, Alzheimer’s and Dementia, and alternative medicine and diet therapy.
- Perhaps most importantly – share your stories of independence with other HH families! As a community, we can help each other find new opportunities, explore options that have proven successful, and push the boundaries of current thinking about what individuals with HH are capable of doing!
Searching outside the box for answers, not settling for a life of compromise, and striving to set their own destiny are definitely characteristics the Founding Fathers of this country had to maximize. I think we all can take a lesson from them on this Independence Day!