Today is the day!!! It’s been a labor of love these past few months, but Patrick and I are finally able to reveal our brand new co-authored blog, “16 Petals of Blue Light.com“, where we can officially share our recovery with you all! We’re both extremely excited to launch this website, and finally have a place where we chronicle our journey with anyone who wants to join us! We hope you will follow along by providing us with your email address in the “subscribe box” at the bottom of the site. This is the absolute best way to stay updated, as you’ll receive an email each time Patrick or I create a blog post.
And yes, you read that last sentence correctly. Patrick and I will BOTH be contributing to this blog! This is what we believe makes 16 Petals of Blue Light so special: TBI topics will be approached from both the perspective of the survivor and the caregiver. The reason for that is this: When Patrick was hurt, I made it my #1 priority to become the most informed, educated and aware advocate that I could be for my boyfriend. Every doctor that I met had an opinion and a prognosis, but rarely did I find that they had any personal experience with the day to day reality of living with TBI. On the other hand, the best resources I found were blogs written about TBI by those who were living with it. Sadly, I was unable to find a blog that approached the injury from the perspective of both the caregiver and survivor. Until now! We have worked very hard to hold onto our love in the aftermath of this tragedy, and feel that couples really need to understand what the other person is going through in order to stay connected. It was from this idea, that 16 Petals of Blue Light was born, and to my knowledge it is the first of its kind!
Patrick and I have always shared a love of writing and music. I was a writer before I was ever a songwriter. And I have played music all my life. Before his accident, Patrick was an Berklee-trained drummer, percussionist and composer. He was also an aspiring writer who had had a few short stories published, and was even working on a novel. We co-produced my third record, “The Giant Unquiet“ together in 2012. And although he is currently unable to play drums, we have big dreams of making another record together! He tirelessly works on restoring his left hand back to full function, so that our dream can one day be reality. In the meantime, we feel that co-blogging is a great way for us both to express ourselves while creating something together once again.
Patrick just recently passed the one-year mark in his recovery, and has made tremendous progress! However, he still has far to go. The journey to recovery is a life-long process, and brain recovery is measured in months and years. He still has left sided weakness, decreased function in his left arm and leg, and very little function in his left hand and fingers. He has swallowing difficulties, and a speech impediment. He has aphasia, and sometimes forgets words. He can walk now with a cane and assistance, but is unable to walk alone. He still needs help dressing himself. He can no longer play drums or piano as he once did. And along with the physical difficulties he faces, Patrick still very much struggles with cognitive impairment in areas such as attention, awareness, problem-solving, emotional incongruence, and concentration.
Today he works extremely hard both at therapy with professionals, and at home with me to get well. But with all that is still to be accomplished, I am hoping to be able to provide Patrick with additional therapies that are far beyond my abilities as a caregiver. That is why today we are launching, along with this blog, a GO-FUND-ME CAMPAIGN to raise donations for Patrick’s recovery. We want to give a shout-out to Glen and Violet over at Cord3Films for being angels and helping us create the beautiful campaign video that you can find on the Homepage of this website. I hope that everyone reading this will take a moment and watch it. They did such a beautiful job of helping me tell our story while marrying together my home videos and pictures of our relationship Pre-TBI, our recovery post TBI, and videos of us in our present-day life.
I am asking that each of you PLEASE, donate $1 to our campaign ( of course you can donate more if you like! ) and share this video on all your social networking sites. We are hoping to make this video go viral! I will of course update all of you here on our blog, on how the funds are changing the life of my amazing boyfriend! We also want to encourage everyone to follow along on Facebook, Twitter, Instagram, and You Tube. I will still be posting updates on my personal FB page, but far less now that we have an official FB page!
Even if you are not a survivor, caregiver, friend or family member to a TBI victim, we still want to encourage you to come along on this journey with us. Though it may not seem like it from the outside, this blog is only secondarily about TBI. It is first and foremost about two people who are striving daily to hold onto love. It is about being human. It is about being broken. And it is about a journey to wholeness. I think there is a universal theme to our love story. Regardless, whomever you are and wherever you come from, we are grateful for your continued love and support.
Happy Holidays to you and yours! And once again, welcome!