Mommy of a Miracle – Faith

kristine & isabellaIn order to survive this journey through brain injury I think you need to have some sort of faith.  Faith is a very personal thing and yet when brain injury occurs it is often questioned more than ever.  Most people question their faith after a brain injury, but for me, it was quite the opposite.  You see before my daughter, Isabella, got sick with sudden acute encephalitis, I already had doubts about my faith.

The two years prior to Isabella’s Acquired Brain Injury (ABI), I had helped care for my Nana who was dying from ALS.  I watched the woman that I called my Nana, who was more like a mother and best friend to me, suffer for about two years.  It was heartbreaking and it made me question my faith.   My Nana was one who always had a strong faith yet she was suffering.  At the same time that my Nana was dying, one of my best friends, Jillana, was losing her battle to an inoperable brain tumor.  Once again my faith was being questioned.  Jillana was a young athletic amazing person and yet she was suffering from this horrible brain tumor.  My Nana died Sept 2009 and Jillana died March 2010.  Within 6 months I had suffered two substantial losses.  I was angry and upset that two great people suffered and died.  I was questioning my faith; I was questioning everything that I had ever believed in.   I found myself searching for a reason to have faith because I no longer believed.  I didn’t believe in prayer because I prayed so much for them both.  I did not believe in people that claimed to have experienced miracles.  In my mind, people that claimed to have miracles were not telling the whole story and clearly something else played a hand in that “miracle”.

When Isabella got sick everything changed.  I found myself in the PICU watching my child dying before my eyes.  I was praying to anyone that was listening to please save my baby.  In that room I didn’t know what else to do so I prayed.  There was family, friends, acquaintances and strangers from all around the country praying for Isabella.  Then in the words of her doctors, a miracle happened.  Prayers were answered.  Not only did Isabella survive but she defied the odds.  Hearing doctors say that there is no medical explanation for her survival and that it is a miracle she is here, well, that gave me something to think about.  I had watched a miracle with my own eyes and there wasn’t more to the story as I had often suspected with others who claimed miracles.

As the hours turned to days then months and eventually years I could feel that my faith was returning.  I had faith to understand that the power of prayer really does work and miracles really do happen.  Not all prayers are answered how I want them to be but I now have faith that somehow some way things will work out.    Ironically that was something that my Nana had told me my whole life that I didn’t understand until Isabella got sick.

On this journey my faith has been tested over and over.  What I have found is that faith comes in all kinds of packages.  There is faith in the power of prayer, and faith in miracles.   I have faith that Nana and Jillana are our guardian angels, both never far from us.  Faith can also be found in doctors, therapists, friends, family, strangers and support groups.  Faith isn’t always this thing that is right in front of you; sometimes you have to really look for it.  Most importantly I have faith in Isabella and myself.  I know that together we can conquer any battle big or small.  After all faith helped us survive the unimaginable.

Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Announcement of “Chicken Soup for the Soul Recovering from Traumatic Brain Injuries” written by Sandra Madden.

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BIA-MA Staff & CSS Authors (Left to Right) Barbara Webster, Helen Stewart, Kelly Buttiglieri, Sandra Madden, and Suzanne D.K. Doswell

 

 

The Brain Injury Association of Massachusetts (BIA-MA) is proud to announce that stories written by five of our staff members, as well as several Massachusetts residents affected by traumatic brain injury (TBI), were selected for inclusion in the new Chicken Soup for the Soul (CSS) book slated to hit bookstores nationwide on June 24th.  This new book is entitled Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work.

Our Executive Director Nicole Godaire beamed with pride when presented with this new book.  “I am proud of my staff, having the courage to tell their stories to the world. I believe this book will become a valuable resource for families dealing with recovery from traumatic brain injury.”

The following are excerpts from our CSS Authors:

“This book is the quintessential book for those who want to step into the world of brain injury and is now a primary resource in the BIA-MA Western Regional office library.  It is easy to read, full of dynamic personal stories and exactly what we have needed as we attempt to explain brain injury to the medical world and general public.  Some readers will shed a few tears as they realize the life altering significance of TBI and others may finally be able to address their patient and client needs with a clearer sense of this silent epidemic from the voices of those who know.” ~ Suzanne Doswell, Western Regional Manager

“I am so very grateful to be a part of this book.  After reading most of the stories, I truly believe that this is the most powerful textbook about Brain Injury ever written.  It has so many different voices in chorus.  The harmony blends survivors, family members, caregivers and professionals into one song.   It is not merely academic jargon, but relates the experience and impact of brain injury through the heart.  It bridges the gap between words and experience.  I do not believe that one can read these stories and not gain a deeper understanding of Traumatic Brain Injury and have more compassion toward the people who live with it, in any capacity, on a daily basis.” ~ Helen Stewart, Western Region Information & Resources Outreach Coordinator

“It takes a long time to heal and rehabilitate from a brain injury, typically continuing long after your insurance coverage has ended.  It is the hardest work I have ever done but it led me to the most fulfilling work I have ever done, working with other survivors.  My mission is to let other survivors know they are not alone in their struggles and to encourage them to think about “How” they can do something instead of “I can’t”.   It is a journey, not a destination.  Never give up hope.” ~ Barbara Webster, Support Group Leader Liaison

“A few years after my accident, I ran into my neurologist on a plane, we were both going to St. Lucia for a vacation. I felt such pride and satisfaction in telling her I had graduated law school and was practicing law. I wanted her to know she should encourage patients to take small steps to accomplish their former, pre-TBI goals. She initially discouraged me from pursuing mine.” ~ Kelly Buttiglieri, Ambassador Program Coordinator

“Keeping a positive outlook has been key (for me) to not succumbing to the frustrating and painful consequences of TBI. Many amazing and inspirational people have come into my life since my accidents and I keep focus on this, the comfort and joy of these relationships.” ~ Sandra Madden, Administrative Assistant

Chicken Soup for the Soul was named by USA Today in 2007 as “one of the five most memorable books in the last quarter-century” and after 21 years of publishing, have sold over 100 million books in the United States and Canada alone. You now have the opportunity to bump that number past 100 million books by purchasing your copy of Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work directly from the Brain Injury Association of Massachusetts. We are selling the book for $12.50 (this is lower than the retail price and includes the cost of shipping and handling) and proceeds from the sale of each book will help support our mission: to create a better future for brain injury survivors and their families through brain injury prevention, education, advocacy and support.

To order online, visit www.biama.org. If you are unable to order online, please contact our offices and speak to Sandra Madden, she can be reached at (508) 475-0032 or toll-free (in state) at (800) 242-0030.

When you receive your book, look for BIA-MA colleagues’ stories on pages 64, 86, 177, 310, and 361.  Stories written by other Massachusetts residents affected by TBI appear on pages 15, 80, 128, 195, 212 and 307.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Mommy of a Miracle – The Truth

kristine & isabellaWhen Isabella was born I made a promise to her that I would always tell her the truth no matter what.  It hasn’t always been easy but I have kept my word.  When Isabella was originally in the hospital with encephalitis I took pictures of her every day.  If she was going to die, I still wanted pictures of her last days.  Thankfully Isabella survived and when we made it home I made a picture book for her.  It is called Isabella’s Journey.  In this book are all the pictures that I had taken of the hospital and inpatient rehab.  I wrote the book from my experience to her.  It was my heartfelt emotions, fears and everything else included.

When I wrote this book and others found out they discouraged me from telling Isabella about her brain injury.  They didn’t feel it was appropriate to show her the pictures or tell her the truth.  To me that was a crazy thought given that this happened to HER.  In my opinion Isabella had every right to know the truth.  I also knew that this book would help answer questions that could come up later in life.

The book is on Isabella’s book shelf and she likes to look at it.  We do not read the words as they are not appropriate for her to hear right now.  That said, she knows the gist of what happened.  We talk about the boo-boo in her brain every day.  After all Isabella’s brain injury has severely impacted every aspect of her life.  Isabella and I refer to the book when she asks questions such as what the scar on her arm is from (the PICC line).

Last week, Isabella was in the shower and she was not being safe.  Out of desperation I told her that I knew a little girl who got a boo-boo in their brain from falling in the shower.  It briefly stopped Isabella for that moment.  A few days later I had to remind her again about being safe in the shower.  Isabella responded something but I couldn’t understand her.  I asked her to repeat it and she said it again but I still couldn’t figure it out.  Finally she yelled, “How did I get a boo-boo in my brain”.  I froze for a minute because the question caught me off guard.  The moment I have waited for had arrived.  Prior to that moment I knew that Isabella understood she had a boo-boo in her brain but I also knew she hadn’t put all the pieces together yet.  Isabella had never asked how she got a boo-boo in her brain.  I explained to Isabella in very simple terms that she had gotten very sick and she slept for a long time.  I told her that the boo-boo in her brain happened because she was so sick.  As soon as Isabella was out of the shower, she grabbed the book so we could talk about it more.

While others may not understand why I made the book for Isabella, I know that it has been a very important tool in helping her understand what has happened.  I have always answered her questions with enough information to satisfy the question.  As Isabella gets older and can handle more info I will provide it.

How have you explained the brain injury to your survivor?

Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Mommy of a Miracle – What I wish I knew

kristine & isabellaWhen Isabella was discharged from inpatient rehab we left on such a high.  I was thinking that the worst was behind us.  I was told that in six weeks life would be back to “normal”.  While I didn’t not fully believe that in six weeks all would be fine, I definitely did not imagine us to be over three years out and still so far away from the life we once had.  I didn’t fully understand that this journey was really just beginning.  Here are the top five things that I wish I knew when we left inpatient rehab:

1.)    This journey of recovering from a brain injury is just that, a journey.  It is not a race or a marathon because that implies that there is an end in sight.  With brain injury there isn’t a finish line where you can cheer that you made it to the end.  Brain injuries are lifelong injuries that forever change not only the survivor but it will also change you.

2.)    Many of us are told that recovering from a brain injury only happens in the first 12 months.  We are told that after 12 months you are stuck in that state for life.  This is absolutely false.  Isabella made the most recovery AFTER the 12 month mark.  There is no time limit or expiration on how long any survivor can improve.

3.)    There are so many great alternative treatments to look into.  I will admit that I never believed in alternative medicine.   That was until Hyperbaric Oxygen Treatment changed Isabella’s life.   It greatly improved her sleep, seizures, quality of life and much more.  Keep an open mind and know that you have options outside of traditional medicine.

4.)    It is ok to change medical providers and therapists.  As you go along this journey, you may find that your goals and those of a medical provider/therapist may not match.  Changing care is absolutely ok to do.  I actually encourage you to change therapists from time to time.  I have found that when Isabella plateau’s with one therapist that changing can make all the difference.

5.)    Find a support group that can help YOU through this journey.  In the beginning family and friends promise to stand by you.  As time goes on they will slowly fall to the wayside.  While our life has come to a screeching halt other’s lives move on and we lose that common ground.  Having support from a group of other’s on this journey is invaluable.

There are times on this journey where you can feel so alone.  Know that you are not alone.  There are many others just like you on this same journey.  To help those just beginning, what would you add to my list?

Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Mommy of a Miracle – Regression

kristine & isabellaIsabella’s brain injury journey began over three years ago. I have learned that recovering from a brain injury is not the steady climb forward as often found with other illness or injury.  This journey is a series of really high highs and really low lows.  In our experience it is filled with one step forward and three steps back.  Regression is the hardest part.

Regression often times has a trigger.  That trigger could be a sudden change in care, medication side effects or an additional stressor such as work or school.  Regression with a known trigger is stressful enough but regression without a known trigger is terrifying.  Isabella has been regressing for quite some time.  Initially, the regression was triggered by the start of public school.  Isabella has since begun home school; however, she never recovered from that initial set back.  Our silver lining is how well Isabella has done academically since the start of home school.  That said, every single part of Isabella is starting to be affected by this regression; physically, emotionally, behaviorally, cognitively, psychiatrically, etc.  Isabella’s migraines and headaches have dramatically increased to every single day.  Her tics and anxiety have also increased significantly.  The regression continues.  It really accelerated once HyperBaric Oxygen Treatment stopped. HyperBaric Oxygen Treatment is the medical use of oxygen in a pressurized chamber.  I hope that someday Isabella can return to that treatment.

As Isabella’s symptoms worsen and more skills are lost, further medical tests are performed.  With each test result I find myself in a catch 22.  I don’t want a test to reveal anything new is wrong and yet not having answers on how to stop this regression is terrifying.  I think about the parents I know whose child with a brain injury regressed (due to varying reasons) and their child still hasn’t regained what they lost.  My biggest fear is losing the Isabella that I do have.  I have recently started taking some video of Isabella laughing and talking just so I have it.  It is devastating to think that without answers anything is possible, will she continue to regress and eventually stop talking or laughing?  Will she lose her physical ability to walk?  Will she….?  At this point, I have more questions than I do answers.

The other day, Isabella fell asleep in the car right before we got home.  I decided to sit in the car and let her sleep for a bit.   As I sat there watching Isabella sleep so peacefully, I just started crying.  I am not a crier and yet here I was crying my eyes out.   As a parent to a child with a brain injury, this journey has been one of the most rewarding yet most devastating experiences I have ever had.  It is heart breaking and gut wrenching watching your child make progress only to regress without reason.  Isabella has worked so hard to get where she is and to watch that slip away is devastating.  I am her Mommy.  I am supposed to be able to make it better and I can’t.

As I wait for an MRI, I pray not for a specific outcome but instead I pray that somehow some way things work out so that we can best help Isabella.  In the meantime, I continue to cherish every laugh and every smile.   When I see glimpses of my Isabella, she reminds me that she is in there and she is fighting like hell to get out.  That helps me fight like hell for her.

“Nobody said it’d be easy they just promised it would be worth it” Anonymous

Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

The “Look-Up Line™” Preventative Measures Potentially Making Hockey Safer for our Young Athletes

Thomas E. SmithI am sure some of you might be Bruins fans and although the Winter Season is over we are fortunate enough in the Boston area to have our Spring spotted with Black and Gold.

Every day hundreds of thousands of young athletes head out to the local hockey rink to enjoy, practice, and compete in hockey games and tournaments. There’s no doubt that hockey is a great way for kids and teens to stay healthy, as well as learn important leadership and team-building skills. But there are risks to pushing the limits of speed, strength, and endurance. And athletes who push the limits sometimes don’t recognize their own limitations—especially when they’ve had a concussion.

A concussion is a type of traumatic brain injury—or TBI—caused by a bump, blow, or jolt to the head or to the body that causes the head and brain to move rapidly back and forth. This sudden movement can cause the brain to bounce around or twist in the skull, stretching and damaging the brain cells and creating chemical changes in the brain.

Wouldn’t it be great to add an extra safety precaution to this beloved sport?

Enter the “Look-Up Line™”. The Look-Up Line™ is a warning track extending 40 inches in width around the circumference of the hockey rink. The Look-Up Line™ warning track will be colored orange.  This color will not interfere with any other lines on the hockey surface, and orange is a color universally associated with caution.  The 40-inch width warning track allows for no overlapping of any face-off dots, lower circles, or hash marks. This will then provide players with information that will warn them, 1. To keep their heads up in order to prevent head and neck injuries, and  2.  To be careful not to body check (contact) opposing players from behind.

The Look-Up Line™ is the brainchild of Tom Smith, Swampscott, MA. In August 2012, as he was trying to think of a way to make hockey safer, he saw an outfielder chase a fly ball in a Boston Red Sox game on television. “As soon as his cleats went across the gravel, he put his arm out and he slowed down,” Smith said. “He never looked at the Green Monster. And it hit me: a warning track.”

Soon Smith came up with the specifics for the Look-Up Line™ — orange for caution, 40 inches for visibility. First, it was painted on the rink at Smith’s alma mater, The Pingree School, South Hamilton, MA. Then a modified version of the line was used at Fenway Park in January for four outdoor games involving Hockey East teams. The idea quickly gained notice, and more than a dozen rinks, mostly in New England, have said they will add the line by September. For young players just moving into Bantam levels and others that allow checking, having the Look-Up Line™ in place as they learn this part of the sport could help them adjust as they advance. Moreover, higher levels of hockey, as witnessed at Fenway Park, can implement the line without altering their game much.

We reached out to Dr. Harold Wilkinson, MD, Massachusetts General Hospital, for comment on this new safety measure and his comments were positive, “Adding the wide orange stripe around the “boards” of the hockey rink should help to alert players to their proximity to those boards, and hopefully will help them to be aware of the risk of crashing headfirst into the boards, thus lessening the likelihood of sustaining a spinal cord injury or a head injury.”

“If the Look-Up Line™ program can have a similar effect in increasing awareness for the game of hockey of the potentially devastating consequences of concussions — even though they might seem “minor” at the time — this could indeed be a vitally important program.”

Prevention is an integral part of the mission at Brain Injury Association of Massachusetts. We wanted to share the story of the Look-Up Line™ to our community and let you know that there are people trying to make advances in preventing head and spine injuries every day. We want adults and children alike to play safe and enjoy doing an activity that they love.

Thomas E. Smith is founder of the Thomas E. Smith Foundation. Thomas is dedicated to building a foundation to serve spinal-cord research, awareness, and well-being. To learn more about Thomas and his organization and the Look Up Line™ please visit:
http://justcureparalysis.org/look-up-line/

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

“ Boston Marathon Survivor Living with TBI”

Joanna LeighAt the Brain Injury Association of Massachusetts (BIA-MA) we have had the opportunity to work with many brain injury survivors and caregivers. Each person has a different story to tell as no traumatic brain injury (TBI) or acquired brain injury (ABI) is alike.

We would like to share the story of TBI survivor Joanna Leigh. You might have already heard Joanna’s story as she has been on NECN and FOX25 recently talking about her TBI diagnosis.  Her injury was sustained at last year’s Boston Marathon bombing attack.

On Monday, April 15, 2013 Joanna had spent the morning at Abe & Louie’s waiting for a friend to cross the finish line. She went out to get some flowers and then felt and heard the first blast. As she ran to the scene of the first blast in an effort to assist, she was hit by the second IED. Joanna was hit at about 10-20 foot range, thrown back and blacked out. Upon awakening, she still managed to help a wounded old man to safety. She didn’t realize how badly she was injured and doesn’t remember much of how she got home. Texts from that day and people’s emails have helped recreate a few moments. Numerous specialists, scans, and tests have repeatedly confirmed her diagnosis:

1) Traumatic brain injury (confirmed by two neurologists, brain scans, and cognitive testing in which
Joanna scored in the lowest percentile)
2) Over 50% bilateral hearing loss (permanent, non-correctable nerve damage not just ear drum)
3) Neuro-blindness (significant vision loss, brain-based nerves/vessels are damaged)
4) PTSD

We at BIA-MA know the facts about brain injury and we want to make sure that the public is educated on this life-altering injury that can happen to anyone at anytime. Recently the One Fund publicly stated to the press that “Traumatic brain injury is a controversial diagnosis…This is very difficult for the medical community to even agree on whether it exists, what are the sources of it? was anybody in the blast zone affected in a way that would have produced that kind of trauma?”At BIA-MA we work with many TBI survivors and know that it is a very real diagnosis. The medical community has resoundingly  concurred that TBI does exist and has noted the numerous ways in which it can occur.  In the United States a brain injury occurs every 18.5 seconds and there are 5.3 million Americans that are living with disabilities as a result of TBI; a figure not including the almost 300,000 veterans. Boston’s own Spaulding Rehabilitation Hospital has a world class TBI center which is currently working with The Department of Defense to research and help manage the polytraumatic effects of traumatic brain injury.

Did you know that the annual cost of traumatic brain injury in the United States is approximately 60 billion dollars?  In 2007, Harvard University, on behalf of the Department of Defense estimated that the lifetime cost for care of TBI is estimated at 5 to 15 million, even with insurance.  This may seem like a lot of money, and yet, it is in line with the amount the NFL players settled on for their TBI injuries- with many doctors speaking out that this may not be enough to cover a lifetime of care. This pertains in particular to Joanna as she was not able to collect more than $8,000 from the One Fund because of being seen on an outpatient basis.

For those of you not familiar with the One Fund, it is a 501(c)(3) organization started on April 16, 2013 at the direction of Governor Deval Patrick and Boston Mayor Thomas M. Menino to help those most affected by the Marathon bombings. The tiered system of the fund based payouts on length of hospital stay. This was unfortunate for Joanna, as she immediately did not know that she sustained a brain injury and has not been able to receive additional funding based on her diagnosis.

BIA-MA wants to educate the public and let them know that if you ever sustain a head injury in any form from a motor vehicle accident, sports related trauma to the head, from a fall, or in this case a blast, seek immediate medical attention.

Like many people in the Commonwealth, we will never forget where we were during the Boston Marathon bombings. The loss was great for our city, and for those who were injured or lost a loved one, even more significant.  Boston Strong is made up of all of us, including the 5.6 million heroes who fight daily battles in ways we cannot see. The greatest service BIA-MA can do for Joanna and her cause is to continue to provide her and other survivors with resources for support, prevention, education and advocacy and encourage others with a brain injury to step forward and join our brain injury community.

Please see the links below of Joanna in the media recently discussing her TBI.

 

http://www.necn.com

http://www.myfoxboston.com/video?clipId=10037608&autostart=true

http://www.plymouth.wickedlocal.com/article/20140409/news/140406671/12423

http://www.shape.com/lifestyle/mind-and-body/10-chilling-accounts-boston-marathon-bombing/slide/10

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.