Tag Archives: survivor

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.

#BrainInjuryAffects – Lindsey Bannish – Granville, MA

img_6251 (3)Lindsey Bannish sustained her injury from multiple concussions due to sports injuries, car accidents, and hard hits.

In 2008, I was diagnosed with post concussive disorder and chronic migraine following a sports related injury. I had multiple head injuries in my youth (from sports) that were never treated and after meeting with my doctor, we realized my total tallied to 5 concussions. However it wasn’t until then that I really had noticed the change. My classes became difficult, my concentration and focus worsened and I began feeling like I couldn’t remember things (all of the time). I struggled with reading and typing (things I had never had a difficult time with). I had always been a good student but my grades quickly dropped and I realized that it took me longer and longer to get through material. It had been suggested that I take time off from school; however I was stubborn and didn’t understand the severity of my situation. Honestly, I was more upset with the fact that I couldn’t compete in athletic events at the time. Since 2008, I have been diagnosed with 5 more concussions, bringing my total to 10. I have had to stop playing almost all of the sports I’d played my entire life, had to learn tricks in remembering simple things, and had to hear far too many people tell me that I couldn’t do the things that I loved any more. I thought that I wouldn’t be able to go to college. I thought that I wouldn’t ever have a day without a splitting migraine, intense nausea or dizziness that makes you want to fall over. I thought that I would never feel in control of my body again.

For the past 5 years I have been learning to live with a neurocognitive disorder and lingering post concussive symptoms. Honestly, as difficult as it has been, I think it’s made me stronger. Now, I am finishing up my undergraduate degree in Neuroscience at Mount Holyoke College. I am coaching ski racing (my favorite sports that I had to give up) and I am exploring the world of non-contact athletics. I still struggle to remember things and have had to learn new techniques such as drawing, rhyming or learning information to certain beats or oscillations. I am now interested in pursuing a degree in medicine to help others struggling with brain injuries. Hopefully one day I can use my experience and insight to help others. On the outside I may appear to be an average college student. But on the inside I am a Brain Injury Survivor.

Don’t Wait, a guest post by Catz LeBlanc

Catz LeBlanc goaltending for her handball team.

Catz LeBlanc goal tending for her handball team.

Today’s blog is written by Catz LeBlanc, a member of the ‘Amazing’ Brain Injury Support Group in Framingham, Mass. Originally from Madison, WI, a former Physician’s Assistant, collegiate soccer goalkeeper, ice hockey player, team handball goalie and mother of an “amazing son,” she suffered a sports concussion as a team handball goalie. Two months later, she suffered a more severe concussion when her Volkswagen Beetle convertible was rear-ended by a truck and totaled. Searching for a book to provide some comfort, guidance, understanding for her challenges with the fallout of a traumatic brain injury, she found none. So, she wrote one. She continues her rehabilitation four years since the injuries.

Don’t Wait

Everyone is so busy.  No one has enough time, no one has enough money.  Someday, someday, they will do what their heart and soul desire, in the meantime, so much needs to just get done.

Last week a woman said she thinks she has maybe five to seven decent years of cognitive function before she may succumb to her older siblings’ demise.  There was urgency in her voice, tired of helping everyone else, everyone always needing something from her–she just wanted to live her own life–with whatever remaining quality she has.

If I could, I would fill Gillette Stadium to capacity, everyone shouting “Yes, you, do it! We give you permission!” If I could, I would have all the birds in Boston sing outside your bedroom window, “Wake up! Wake up! Today’s the day YOUR life begins!”  If I could, I would have the planes at Logan fly over you, pulling signage, “TODAY! Yes, you, Today- GO FOR IT!”

It would be tricky, but we might be able to have you professionally kidnapped, to somewhere you can finally do what your heart and soul have been whispering.  Trickier still would be to have all the family and people connected to your loathsome to do list- have THEM professionally kidnapped and dropped off with provisions to an island to care for themselves for the next whatever number of years.

Perhaps your next fortune cookie will read, “This is it. Last call-You have 6 months of quality left. Use wisely.”  Would you change your priorities then?  What’s it going to take to have you put you on the top of your list?  Are you waiting for a parade with bells and whistles, a marching band, to let you know, OK-Now! Go ahead, FORWARD march!

Human illusion of time left in our lives, it’s funny how we somehow calculate it, as if a physics equation.  Denial is a powerful thing. Human nature is human nature.  “I’ll just get these two more things done and then I’ll sit down and give myself 30 minutes for me.” And then the door bell or phone rings, postponing again and again. Before we know it, another decade or more has passed.

We are delusional about our lives–Start today, tomorrow noon at the very latest.  I’ve already been to the land of a compromised brain and it is a Godforsaken place.  I’m still stuck there precariously living within my limitations, receiving punishing consequences if I rebel.

Will we be one of the lucky ones who suddenly dies peacefully in their sleep, self-sufficient until their last breath, life list completed in total?  What are the odds of that?

How about listening to that inner voice?  I can hear the resistance rallies revving up, all the reasons why you can’t do what you say you really want to do.  No need to answer me. It’s your life.

P.S. Here’s a sample refrigerator note.

Dear All,

I have come down with a rare form of L.M.N.O.P. and am quarantined for a bit.  Don’t bother to phone or text as my room doesn’t get the tower.  Take excellent care of each other and don’t worry about me.  I will be just fine.


Your spouse/Sibling/Parent/Grandparent/Neighbor/Friend/Friend of a Friend…

Catz’s book, Tell Me This: Encouragement and Hope after Brain Injury, a pocket guide for athletes, veterans and civilians, is being published by Lash and Associates and will be released this coming winter.

For Brain Injury Survivors: It’s OK…

wordleBrain injury survivors and caregivers alike often have high standards for themselves and their rehabilitation. The challenges survivors face can often be overwhelming and while there are many good days and achievements during rehabilitation, there can also be bad ones that can overshadow the positive moments. Sometimes we all need to take a step back and put it  in perspective. We’ve come up with a list of things to remember inspired by so many of your Facebook comments over the past month!

So remember, It’s OK….

1. To have bad days sometimes. Not every day is going to be filled with successes. You will have a bad day or a bad week every now and then and it’s OK to be disappointed, but don’t let that overshadow all the great things in your life.

2. To miss your life pre-injury. Life post-injury is different and challenging and can be often overwhelming. It’s OK to miss how things used to be and give yourself time to mourn the life you had, but try not to focus on it. Focusing on your successes and rehabilitation can help you move forward.

3. To not want to have to explain what a brain injury is all the time or convince others that just because you “look fine” doesn’t mean that you don’t have a brain injury. Remember, many people don’t know what a brain injury is or how it can affect someone. People may say, “Well, you look fine/normal” so you must be OK, which can be extremely frustrating. Do your best to educate those around you about brain injury, but don’t feel bad when you get tired of explaining. When you get frustrated, talk to those who DO understand and find support among other survivors and caregivers.

4. To be different. Life changes post-injury and you’ve changed post-injury, but that doesn’t mean you shouldn’t embrace who you are and who you’ve become. It is OK to be different and to accept yourself.

5. To get frustrated with yourself, your progress and life circumstances sometimes. It’s normal.

6. To feel like no one understands sometimes. If you’re surrounded by friends and family who don’t truly understand brain injury and don’t know what you’re going through, it can be isolating. While you might be the only one in a group who knows exactly what a brain injury is because you live it, doesn’t mean there aren’t support groups (online and in person) full of people who DO know what you’re going through. Our Facebook page is a great place to find some of these amazing people who will help you feel not so alone.

7. To not want to hear how “lucky” you are. Those who don’t understand brain injury will often tell you how lucky you are to “be alive” that it “wasn’t worse,” etc. It’s OK to not want to hear these comments and it’s OK to tell someone that those comments can be frustrating or hurtful to a survivor who doesn’t necessarily feel so lucky as he or she works through rehabilitation and to regain skills he or she lost.

8. To ask for help and accept it if you need it. Some people don’t want to ask for help and are afraid to burden others, while other individuals don’t want to accept help in fear of giving up some of their independence. Many caregivers and loved ones would LOVE to help and would be more than willing to offer assistance, all you need to do is ask. However, if you don’t want help it’s OK to politely say no.

9. To give yourself time. Time to heal (physically and emotionally). Time to accept yourself and your life. Time to get to where you need to be.

10. To need a cheerleader, support system and encouragement. Ask your loved ones for encouragement and support! Everyone needs a cheerleader!

#BrainInjuryAffects Campaign Update


Early this year, we launched an exciting social media and advocacy campaign called #BrainInjuryAffects. The campaign was designed to encourage those affected by brain injury – survivors, caregivers, family members, friends and healthcare professionals – to share their stories with us and explain how their lives have been affected by brain injury. We also asked for photos. We weren’t sure how many people would participate, but our hopes were high and we have received amazing feedback. We’ve received so many submissions from survivors, family members, caregivers and professionals who were informed of the campaign during a brain injury support group, saw our posts online or who simply heard about it by word of mouth.

These stories are all incredibly inspiring and have not only inspired us, but legislators and the general public as well. Each person’s story is different – their ages vary – our youngest participant, who is a brain injury survivor, is just seven years old. Through this campaign, we have been able to share the stories and struggles of survivors, family members and caregivers in Massachusetts with the world. We are so thankful to have such passionate and generous supporters who participated in this campaign.

We are excited to share the results of the campaign with all of you soon. Click here to read some of these incredible stories, like that of Tiffany, who suffered a severe traumatic brain injury (TBI) at just 16 years old when she was involved in a serious car accident, or find out about Scott, who is still learning about his brain injury after decades of not knowing the true effects of his injury.

Look for more stories coming soon and click here to participate in the campaign!