Hi Everyone,
Corey and I had a great day yesterday! We determined her headache, rise in heart rate, blood pressure and stomach cramping was due to the new medicine that was prescribed by her Urologist. We discontinued the drug and her symptoms subsided. In addition to thanking all of you for your prayers, we also had the help of 2 nurses, 1 Awesome Big Sister, 1 Best Friend and 1 Amazing neighbor + her son help make our day a success.
Sherice and Jamie tag teamed to overlap the morning shift so I could leave by 6am. Caitlin took the day off from work to be Jamie’s ‘distraction’ assistant. At 4pm Caitlin was in charge but had her assistant Selina. Selina, Corey’s girlfriend, is home for spring break from college. Our neighbor Suzanne and her son Connor joined the team bringing dinner for the girls; they stayed until Sherice returned to cover the night shift.
Corey repeatedly asked for me but only “lost it” twice throughout the day. I called when I had breaks between meetings but the biggest surprise of my day was receiving an email from Corey! We established a new email for her to help her practice her communication/journaling skills. Jamie set the laptop on the kitchen table attaching the large key keyboard our High School team loaned us. Corey now types her own letters (Jamie was her space bar reminder). The first note arrived when I was at a briefing. My phone blinked and to my surprise “A Awesome Kid” sent me a note. Prior to the accident, Corey chose that name so she would always be first in my contact directory.
hi mom.
i hope you are coming home soon. i miss you. i hope you are having a good day. but that you are coming home soon. i miss you. come home now. love you marie. sinserely corey
She wrote 15 letters, each sounding a little more urgent than the one before but each one brought me a bigger smile ~ Corey is back online! Corey has asked not to publish her email address but if you write her on the carepage, she will eventually write you back.
In between emails and phone calls, I joined a Board member from the Brain Injury Association of Pennsylvania to meet with several Congressman and Senators. BIA’s agenda was to request budgetary support for the Traumatic Brain Injury population. The financial support needed includes increased funding to preserve and expand TBI rehabilitation research, continued protection and reform for access to Brian Injury care; specifically to protect the expansion of Medicaid, subsidies to individuals and Medicaid/Medicare rehabilitation services from reduction that will impede access to care and to waive the two year waiting period for Medicare benefits for people with TBI who have limited insurance and high out-of-pocket expenditures. In addition, they are requesting support to sustain and bolster the funding for research agencies approved by the TBI ACT. This includes CDC, HRSA State Grant Programs and HRSA Protection and Advocacy Program.
Our final request of the Congressman; we understand they are asked to join, support and become active for multiple causes/committee’s but would they please consider joining the Congressional Brain Injury Task Force to assist in advancing the awareness of brain injury, support funding for basic and applied research, brain injury rehabilitation and the development of a cure. The Task Force can help make life better for individuals with brain injury and their families.
My role in these meetings was to put “Meat back on the Bone”. Its one thing to be handed a flyer with the facts and details of what program assists with which benefit and quite another when an average American can speak to how those programs assist and/or limits our quality of life on a day to day basis.
Corey’s Story is special. She was not at risk for Brain Injury. She represents everyone’s daughter, little sister, niece and/or partner. Accidents happen; even a mile from your home. A traumatic brain injury can hit anyone of us at any moment.
What happens after the car is towed away, after the patient is airlifted, after they are discharged? Her story is important to share because it chronicles what a family must do to fight for the basic services required to give their loved one the opportunity to recover. Her story speaks to what EVERYDAY is like. A TBI is not a bone that will heal in 6 weeks. It is a lifetime recovery one day at a time which can not be experienced without the support of our legislators.
Congressman Scott Perry was deeply moved. Congressman Bill Pascrell and Congressman Joe Pitts asked to meet Corey personally and today we received an email that Mr. Pitts joined the Task Force.
Many of you have asked how you can help. Next week we will publish a letter that you can either copy verbatim or adapt and personalize. We will attach a link for you to find your Federal/State Representatives and Senators. They will typically only read and respond to letters received from their constituents.
During the afternoon briefing, an audience member stood to ask, “Traumatic Brain Injury is the leading cause of death and disability in this country. Why is it still the silent epidemic”?
The answer;
1.Unlike breast cancer, it hasn’t been marketed or advertised. Everyone knows what the Pink ribbon stands for; no one knows what the green ribbon is.
2.Most families are devastated, isolated and overwhelmed with the day to day. It’s difficult to ‘get out’ for a walk or fundraiser. Many don’t have the strength to fight or use their voices to promote the issues.
We can be their advocates. Our letters can be their voice, their strength, their opportunity to bring awareness. We hope you will join us as we embark on this grass roots approach.