Tag Archives: pediatric brain injury

College Bound – Wishing our Ambassadors an Amazing Experience !

We have been so fortunate to know Sean Rowell and Madeline Uretsky at the BIA-MA. They are both amazing people and have been wonderful additions to our Ambassador Program. If you have not heard about our Ambassador Program it is comprised of  volunteer speakers who have either sustained a brain injury or have a loved one with a brain injury. The speakers vary in age and experience, but all share a desire to tell their stories to help others avoid this devastating tragedy. Sean and Madeline have both been part of our are program after they sustained their injuries.

If you would like to become an Ambassador please contact us at 508-475-0032 and ask to speak with our Ambassador Program Coordinator !

Sean Rowell_SlopesCongrats Sean Rowell !!

This spring Ambassador Sean Rowell graduated from St. John’s High School in Shrewsbury and will be attending Georgetown University.  Sean began speaking for our program in August of 2010.  Sean suffered his brain injury from a snowboarding accident at Loon Mountain.

Sean has made a number of speeches as an Ambassador.  This year, Sean was a panel presenter at our Annual Conference.  He has spoken to numerous clubs and organizations throughout the state, including,  the Worcester Rotary Club, Millis High School, Wilmington Rotary Club, Marlborough Rotary Club, Chelmsford Rotary Club, Stow Parent Teacher Organization and Fitchburg Rotary Club. The Wilmington Rotary Club invited Sean to also present to their High School Interact Program.

After his accident, Sean became certified to teach for the New England Disabled Sports Program at Loon Mountain.  As a coach, Sean guides guests in the snow sport of their choice on the mountain.   Through his assistance, Sean enables the students to experience the thrills and independence of skiing.

BIA-MA would like to sincerely thank Sean for all his accomplishments and association with our organization.  We wish him the best of luck in his studies and would like him to continue to be a friend of the BIA-MA.


Congrats Madeline Uretsky !!

This spring, Ambassador, Madeline Uretsky, graduated from Bishop Fenwick High School in Peabody and will be attending Simmons College.  Madeline became an Ambassador for BIA-MA in April of 2012.  Madeline’s brain injury happened from a car collision and then five months later a severe concussion while playing soccer.

Madeline has made numerous presentations for the Ambassador Program.  In April, she was a panel member at the Whitehead Institute’s 2014 Spring Lecture Series for High School Students.  She has also made numerous presentations at many Rotary Clubs across the state including; Lynn, Billerica, Swampscott, Billerica, Tyngsboro/Dunstable, and Manchester/ Essex.   Madeline has also presented at our Pediatric Conference and was a speaker at the 10th annual Boston Acquired Brain Injury Support (BABIS) Walk.

In 2013, Madeline’s story was featured in the Boston Globe in an article on concussions and her story is also featured in many internet sites focused on concussions.  Madeline also wrote a chapter in the book, Concussed! Sports-Related Head Injuries: Prevention.

BIA-MA would like to sincerely thank Madeline for all her accomplishments and her dedication to our organization.  We wish her the best of luck in her studies and would like her to continue to be a friend of the BIA-MA !

kristine & isabellaLast year I started an online support group on Facebook called “Parents of Children with Brain Injuries”.  For the first time since Isabella’s Acquired Brain Injury (ABI), I no longer felt alone.  I have other parents that can relate to how I feel, what is going on with Isabella and they quite simply just “get it”.  As a parent to a child with a brain injury we are often misunderstood.  We are seen as people who only talk about brain injuries, we are seen as ungrateful, we are seen as overprotective, we are seen as mean for having our child go to therapy etc.  Below are 12 things we want you to know about us:

1.)    We want you to know brain injuries are an invisible disability.  While our child may look “fine” or even as they did before their brain injury, they are no longer the same child they once were.  Their brain injury has forever changed them.  Brain injuries can cause behavioral changes, emotional instability, impaired cognition, poor judgment and a slew of other things.  Trust me, no matter how “great” they look, they are not “fine”.

2.)    We want you to know there is no cure for a brain injury.  Not all the therapy, medication, doctors, sweat, love and tears will cure their brain injury or bring them back to how they once were.  However, we do all that we can to give our child the best possible outcome.

3.)    We want you to know we are no longer the same person we were before our child’s brain injury.  Some of us have literally watched our child die before our eyes.  We have witnessed horrible things and we have also seen some amazing miracles.  We can’t be who we once were no matter how hard we try.  Our lives are forever changed and as a result so are we.

4.)    We want you to know that if our child manages to briefly hold it together when we see you that doesn’t mean that they are “fine” or that we exaggerate.  An often time our child is so overwhelmed that the fall out is long after you have gone.    That pent up anxiety quickly turns to aggression, crying, panic attacks, anger, and many other emotions.

5.)    We want you to know that when you see our child having a tantrum, please don’t judge us or them.  Our child doesn’t need to “learn respect”, “get beat or get a whooping” or need to “stay busy to stay out of trouble”.  Our child needs love, respect, compassion and understanding.  Their brain injury leaves them with little control over their own body and mind.  When you judge us it only makes it harder.  Trust me we don’t enjoy the tantrum and neither do they.

6.)    We want you to know that we can’t just “get over it”.  We would love to move on in life as if our child didn’t have a brain injury.  We would love to go back to that carefree attitude, a life where this horrible nightmare never happened.  Unfortunately this is our reality.  Our entire world revolves around brain injury.  We talk about it in hopes that you will never have to go through what we have.

7.)    We want you to know that sometimes the things you say to make us feel better only make us feel worse.   Please don’t say “God only gives us what we can handle”, “I don’t know how you do it”, “I could never do that”, “pray harder”, “everything happens for a reason” or anything along those lines.  We have to believe that it is not God’s will to allow our child to suffer from a brain injury.  We have to believe that sometimes bad things just happen.  Along the same lines, if you were in our shoes you would find a way to make it work too.  We have no choice and neither would you.  It’s ok if you don’t know what to say to us.  We appreciate the honesty.  If you want to encourage us, let us know we are doing a good job.  It will mean more than anything else you could say.

8.)    We want you to know that we grieve.  We grieve the loss of the child we once had, we grieve for the future they could have had, we grieve for the innocence they lost, we grieve for the future we had planned for ourselves, we grieve for the impact it has on our family etc.  There is no set timeline on how fast or how slow we grieve.  Grieving doesn’t make us any less grateful that our child survived.  Believe me, we are grateful beyond words.  Grieving is yet another part of this journey.

9.)    We want you to know that we feel isolated.  When the rest of the world has moved on, we are still here stuck at what seems like a standstill. When our child’s brain injury first happened, everyone rallied behind us during this time of crisis.  As time goes on they fall to the wayside one by one.  Some fall away because we are not able to put in the same effort on the relationship.  Some fall away because that common ground is lost.  Some fall away because they don’t know how to deal with what has happened etc.  We may not be able to socialize like we once were; however, we do like to feel important and as though we haven’t been forgotten.

10.) We want you to know that we refuse to settle for our child even when medical professionals are asking us to.  Doctors, nurses, therapists, surgeons and alike can offer their medical opinion but that doesn’t mean that we have to agree.  Remember, at one point we were told our child wouldn’t make it and they did.  We were told that our child would never walk, talk, eat etc and most of our children do.   So when we are being asking to settle for our child, we just won’t.  If we settled in the first place, our child most likely wouldn’t be here or be where they are today.  We want our child to have the best life possible within their capacity.

11.) We want you to know we worry A LOT.  Will my child wake up/talk/walk/eat?  Will they die overnight in their sleep from a seizure because I was sleeping?  Will medical insurance approve or deny the treatment/therapy/medication that our child needs?  What will happen to our child when we die?  How do we fight the school system so our child gets the appropriate education with the right accommodations?  How to I protect my child from the cruel world who wants to judge them at every opportunity?  How do I keep my child from being bullied?  How can I get family/friends to understand that I want to be who I was but I am no longer that person and neither is my child?

12.) We want you to know that we often feel guilty.  Guilty for missing out on our other children’s lives.  Guilty for mourning the loss of our pre-injury child.  Guilty that we are jealous of other children without a brain injury.  Guilty for wanting or needing a break.  Guilty for not doing more.  Guilty that our child has a brain injury.  Guilty when they are in pain and we can’t fix it.

These are just some of the things that we, parents of a child with a brain injury, want you to know about us.  Our child is a survivor of a brain injury.  As their parent we are a survivor too.  We have seen things that no parent should ever see.  We have heard things that haunt us daily.  In a world that has only just started talking about brain injuries, we are sadly misunderstood as is our child.   We hope that you never have to experience watching your child suffer from a brain injury but should it happen, know that there are other parents just like you.

What would you want others to know about being a parent to a child with a brain injury?

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 – 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: It takes a team to recover


Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website. To contact Kristin, tweet @KristinOlliney.

Isabella’s journey post acquired brain injury (ABI) has been one filled with twists, turns and bumps along the way.  Having a team that stands by Isabella and I has been invaluable.  I have learned that it takes a variety of people all having the same vision to help move forward in recovery.  Every member of our team (both past and present) has taught me something. Trust is essential and everyone has to have the same vision. Isabella has so much fight and determination. I want a team that is willing to keep pushing her forward. 042

When Isabella first got sick with sudden acute encephalitis, we had a team that was given to us. We didn’t have the option to choose – it was whoever was in the PICU, relevant specialties and rehab.  As we progressed forward in recovery, I started to learn about the team approach. That first year of recovery, I felt like I was being asked to settle for Isabella.  She was over medicated, having difficulty walking and struggling to talk. I was told that this could be as good as it gets and that I needed to accept that. I refused to settle because I knew she could go further with the right team. I researched doctors, hospitals and therapists. I sought out second opinions, I met with rehab facilities and I talked with everyone about my vision for Isabella. I slowly was able to transition her care over to our existing team.

Our team consists of:

  1. 1.       A medical team, including a pediatrician, neurologist and immunologist.  I initially met with our neurologist for a second opinion. I was not looking for a miracle cure because let’s face it, there isn’t one.  However, I knew the life Isabella had of being over medicated, seizure-filled and out of control was not the life she deserved. The neurologist was able to help get Isabella back on track by taking a more conservative approach to medication and listening to what I saw for Isabella.  She was able to help me find an appropriate pediatrician, one that works with complex children like Isabella and referred me to an immunologist who has taken a proactive approach with her. These three members of Isabella’s team are key in keeping her medically stable.
  2. 2.       A therapy team, which consists of a physical therapist, occupational therapist and speech therapist. We have had many therapists and it takes a variety of them to keep Isabella moving forward.  Isabella initially woke up out of her coma unable to even lift her head never mind move her arms and legs.  Isabella could only put two to three words together and she was unable to even hold a crayon. Today, Isabella runs, hops, jumps and even rides a bike.  She has become a lot more verbal and puts together much longer sentences. She also gets herself dressed on most days and is great at drawing. It takes a lot of work in therapy and at home to ensure that she not only continues to gain new skills, but that she retains them as well.
  3. 3.       Our behavioral team, which consists of a behavior consultant and behavior monitor. They were able to help me help Isabella. When they first started, Isabella couldn’t even go outside without a panic attack and she was violent. I was at the end of my rope with what to do because nothing was working. Isabella has no control over her mood, behavior, emotions, etc., so the behavioral team helped me learn all the ways to help her before she escalates.  When Isabella loses control, there isn’t much I can do. However, we have put many tools in place to help us both.  Mine and Isabella’s relationship is so much stronger due to the work we have all put in.
  4. 4.       Our dog therapy team consists of an amazing woman and her little dog Charlie. They just recently moved away, but before that they came to visit every week.  In those visits, there was no brain injury. Isabella was just a little girl who loved “her” Charlie.  They helped Isabella learn how to be gentle, have empathy and Charlie helped Isabella through some tough times, including hospital stays.
  5. 5.       Our educational team consists of a fantastic special education attorney who is helping me navigate the school system. I know what Isabella needs and she knows the law. Together we are working on getting Isabella transitioned to school for the fall. It was important to have an advocate who was willing to help think outside the box because Isabella is so complex.  I am hopeful that together we can get Isabella the appropriate education.

In addition to these team members, we also have the many nurses who help Isabella get through hyperbaric oxygen therapy (HBOT) and child life specialists who help with infusions.  Isabella gets infusions every other week because she also has an immune deficiency. Every team member plays an important role in Isabella’s recovery whether it is keeping her medically stable, moving forward in recovery, getting the appropriate education or being able to get through medical procedures. To get the team we have I had to change doctors, therapists and hospitals. Change is scary, but it is necessary to keep moving forward. I have made major changes in Isabella’s care. These changes have made the difference between her recovery moving forward and standing still.

Mommy of a Miracle: “Breathe”

kristinToday’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website.

As a parent to a child with a brain injury, I have my moments on the emotional roller coaster from hell.  That rush of many emotions all at once usually creeps up on me when I least expect.  I am still working on allowing myself to have these moments. I am starting to realize that it doesn’t make me weak – instead, it makes me human.

A couple weeks ago when Isabella was at Aquatics “swimming” therapy, I noticed that the radio was on in the background.  The song on the radio was Anna Nalick’s “Breathe,” which was Isabella’s favorite song before her Acquired Brain Injury (ABI).  As I watched Isabella swimming and I listened to the song, the tears started rolling down my face. The flood of emotions overwhelmed me. In that moment I was sad, angry, worried, nervous, happy, proud, amazed and finally, overwhelmed with joy.   042

I have learned that it is OK to be sad and angry. Anger is a very foreign feeling for me and that emotion is usually coupled with sadness. The truth is that at times I am very angry and sad because Isabella was robbed of the life she should have had. As I listened to the song, I flashed back to the four-and-a-half year old little girl who would sing “Breathe” at the top of her lungs. Then, Isabella knew all the words and she didn’t have a care in the world. That happy-go-lucky little girl is forever gone. Isabella didn’t deserve this. I have never been one to dwell on the life that Isabella lost. However, I am learning that I am human and it’s OK to feel anger and sadness as long as it’s not what I focus on. I choose to focus on the life that Isabella has and I watch her in amazement at what she continues to overcome.

As the song continued, the emotions turned from sadness and anger to worried and nervous.  On the outside, Isabella looks like every other seven-year-old little girl. I have witnessed firsthand how cruel the world can be to those who have invisible disabilities. I worry about Isabella’s future and wonder, will she be able to be the “pet doctor” she wants to be? Will Isabella be able to have her two sons and one daughter someday? Will she be happy? Will Isabella be a self-sufficient adult one day? I allow myself the moment because I think it is only natural to feel this way at times. I can’t predict the future and I am not sure I would want to. I have learned that the only thing that comes from worrying is that it ruins the moment. Worrying doesn’t change anything.  All I can focus on is today.  I know I am doing everything I can today to ensure that Isabella has the best future possible. I have to have faith that in the end it will all work out. After all, Isabella was saved for a reason.

As I am lost in the song and all the emotions that follow, I hear Isabella laughing in the pool. My emotions immediately turn to happy, proud and amazed. The song continues, I take a deep breath and the tears become filled with joy. Isabella yells “Look Mommy, I’m doing it all by myself” as she swims for the first time. I see confidence appear on her face, something that was taken two-and-a-half years ago.  Isabella is amazing. She inspires me every day. I have never seen so much fight in anyone. I stood there watching her swim with a huge grin on my face (tears and all) because I am so very proud of her. I choose to focus on all that Isabella has overcome and the miracle that I have been blessed with.

As the song ends, the emotional roller coaster stops. I am still working on being OK with all of these emotions. I am choosing to live one day at a time and one moment at a time. I am learning that these emotions are part of the journey and help me move forward. At the end of the day, I am the luckiest Mommy. I got to leave the hospital with my baby two-and-a-half years ago when no one expected her to make it through the night.  There are so many parents of children with a brain injury who don’t get that chance to take their baby home.  I don’t take it for granted for a second that I did.

Mommy of a Miracle: How Family Life Changes After Brain Injury

kristinToday’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how their family life has changed since Isabella’s brain injury. Read Isabella’s entire story on our website.

When Isabella suffered a brain injury, every aspect of our family life suddenly changed. While life is not perfect or the way I had planned, it still is great. Often, people do not understand why things are different because on the outside Isabella looks “fine.” Isabella’s ABI (acquired brain injury) is an invisible disability. Below are some of the ways that our family life has changed.

1.       Our day-to-day life is different:  As summer approaches, I think of how we spent our days prior to Isabella’s ABI.  We were either at the beach, swimming in the pool, going to cookouts and parties, taking day trips, going to the zoo or hiking. Prior to Isabella’s ABI, she was a lot more independent.  Since her ABI, our summer days are spent at speech therapy, occupational therapy, physical therapy, aquatics therapy, in-home behavioral therapy, hyperbaric oxygen treatment, infusions, meetings and doctors appointments. Isabella also requires help with daily tasks, such as getting dressed, brushing teeth, using the bathroom, etc. Our downtime has to be carefully planned out and revolves around Isabella and where she is mentally at any given moment. I have to consider her level of anxiety, aggression, mood, fatigue, etc when trying to plan an outing or activity.

2.       Others perceive us differently: Isabella looks like a typical seven-year-old child. She has an ABI, which is an invisible disability. Isabella is a completely different child than she was before her brain injury. She struggles on every level behaviorally, emotionally, psychiatrically, cognitively, verbally, etc. While others may be in denial that anything is wrong, I have come to terms with the fact that Isabella will never be who she once was. Accepting this early on has helped me tremendously. While Isabella was robbed of the life she was supposed to have, she is working really hard. Her future will be different, but she has a future I believe will still be bright – it just won’t be how I may have imagined it.

Kristin and her daughter Isabella participate in BIA-MA's #BrainInjuryAffects Campaign.

Kristin and her daughter Isabella participate in BIA-MA’s #BrainInjuryAffects Campaign.

3.       Isabella’s behavior can be unpredictable: Isabella gets out of control.  She can drop to the ground, kick, scream, hit and have a full out tantrum. Other times Isabella says and does the most inappropriate things. Isabella’s brain injury causes her do things that she can’t control. Having someone laugh, point, yell at either of us or add rude commentary does not help the situation. Isabella doesn’t need to be physically disciplined or ridiculed.  She needs support, understanding and positive reinforcement.  As a Mommy, I am doing everything that I can to help her and when we are judged, it makes us feel worse.

4.       Isolation occurs: As we continue on this journey, I have realized that everyone else’s lives are moving on and in many ways ours are not. Most of our family and friends have stopped inviting us to parties or events.  At first I was relieved because I didn’t have to explain why we couldn’t be there. It hurts when the invitations stop because it feels like family and friends have forgotten about us. It’s hard to hear about graduations, birthday parties, holidays and other get-togethers. While Isabella may not ready for those types of situations, there will be a day when she will. I am so thankful for those few people in our life that continue to invite us in hopes that one day soon things will change.

At the end of the day, do I wish things could be different for Isabella and our family? Yes, of course I do. I wish nobody had to suffer from a brain injury. That being said, the reality is a brain injury is not going to magically disappear. I am helping us embrace the life we now have and to make the best of what we have – it’s all in how you look at it. I am thankful for every moment and day I have with Isabella. The outcome could have been so much worse.  Brain injury changes every aspect of your family. It doesn’t mean your life is over, it means that you need to accept that a new life is about to begin.

The New Normal

Heidi Qua & her sons

Heidi Qua & her sons

Today’s blog is written by Heidi Qua, mother of Jacob and Eric. Her son Jacob suffered a traumatic brain injury, in 2004 when he fell from a third-story window. To read her entire story, click here.

A few days after Suspect Number Two from the Boston marathon bombings had been apprehended, I was speaking to a friend who lives in Virginia. “So, are things returning to normal now that the suspect has been caught?”  I laughed.  Normal? Things will never be normal again. We are entering a chapter of a “new normal.”

New normal is a phrase I used frequently when my then almost three-year-old son was discharged from the rehabilitation hospital, Franciscan Hospital for Children. In September of 2004 Jacob fell from a third floor screened window to the concrete courtyard below. He spent 19 days in NICU, 17 of which he was on a ventilator. Then we were moved to rehab where he, we, stayed for three more months.

When we were discharged, four days before Christmas, people assumed that we would be going back to our “old life.” They didn’t seem to understand that we couldn’t go back to our old life. My husband and I were trying to figure out our new life, our new normal. Rather than working full time, I was now shuttling my youngest child back and forth to therapies, and welcoming other therapists into our home.  I had to explain to my oldest son, Eric, who all these people were, and why his brother needed all this additional attention. We were trying to keep things normal for Eric, but even his life was forever impacted too.

As Jacob grew older, my new normal included monthly visits with different doctors – neurologist, physiatrist, or primary care doctor. The therapies continued, several times a week.  This is not what I call “normal.” As a young woman, when I thought about becoming a mother, I never thought “what pattern should we choose for my son’s AFOs (ankle-foot orthosis)?  Where can I buy shoes big enough to fit his AFOs?”  In fact, before Jacob’s accident, the world of rehab, therapies and AFOs was a world I had never given a second thought.

As much as I lamented my new normal, I realized I only had one option, and that was to accept it.  I actually started to appreciate our new life. Nothing was going to make Jacob “normal” again, and I was beginning to be OK with that. I fell in love with his funny little walk, or the way he throws a ball. Even now, at age 11, all I have to do is hear his walk and I know it is him. I realized quite quickly, back when he was in rehab, that Jacob is a hard worker. He never once complained about all the therapy he went through. To this day he is the hardest working guy I know. This past weekend he hiked over seven miles with a backpack on, carrying his camping gear. He fell down, 10 times to be exact, but got back up each time and kept going.

As we approach the nine-year anniversary of Jacob’s accident, I can honestly say I am content with my family’s new normal. I would be lying if I said I wish the accident never happened – no parent wants their child to suffer any injury, let alone a traumatic brain injury. That said, we have found victories in the small things, in the quietest of places, and we have learned to celebrate each moment with all three of our children, as we take this journey together.

Mommy of a Miracle: Caregiver, Parent and Me


Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the challenges of balancing being a caregiver, mother and finding time for herself. Read Isabella’s entire story on our website.

As a parent to any child, we have many job titles: chauffeur, cook, maid, etc. When you have a child with a brain injury, you add therapist, advocate, teacher, nurse, caregiver, etc. to the list. The added pressure can be extremely overwhelming and it is easy to lose yourself in the process.

When Isabella’s acquired brain injury (ABI) occurred, I was so caught up in all of her needs that I forgot that I mattered too.  Every day was spent at therapies, doctor’s appointments, and meetings, having phone calls, researching and working on her treatment. I put everything I had into making sure that she got all that she needed. I completely put my life and needs on hold.

After the first year, I was a mess. Call it caregiver burnout, fatigue or just exhaustion, but I knew that things had to change. Isabella has a brain injury and if I am not on top of my game, I can’t help her. I hadn’t expected to be in a similar place a year later. I needed to find a balance.  I needed to still be me, Kristin, while also being a mommy and a caregiver. 042

We had missed out on so much since her ABI.  Isabella wasn’t in a place that she could visit with family, go outside, go to the store or do all the things we all take for granted. So in seeking balance for myself, I started to help both of us. I spent the first year being so happy that Isabella was here and alive that I sacrificed everything for her. If I had to do it over I would do it exactly the same way. After that first year though I needed to find balance for my own sanity and to help Isabella move forward in her recovery.

Find the balance by:

1.)  Getting organized. I have a medication chart so I can accurately keep track of what has been given and when. I have organized all the paperwork that goes along with being a caregiver and parent. A binder of all things related to school and IEP. A binder of all medical information, insurance paperwork, therapy notes, etc. When I need to pull paperwork for an appointment or meeting, it takes minutes rather than hours.

2.)  Set goals for the year, including ones for yourself and for your child.  The purpose of our goals is to start getting back to our lives and having a sense of some normalcy. Goals can be big or small, but make them achievable. Some of the goals we had last year were: being able to go successfully into a store, going outside for 30 minutes with minimal issues, getting Isabella into her own bed and eventually her own room.

3.) Finding a support group. If you are unable to attend one in person, find one online. Social networks have many different kinds of support groups. I have found these to be the right fit for me. I can talk about what I want, when I want from the comfort of my home and on my time.  Having other parents who are in similar situations has been so important to me.  I started an online support group for parents of children with brain injuries. I needed support from others who could relate to my life and were in similar situations.

4.) Find something that you are passionate about and do it. Brain injury has become that passion for me. I have learned so much along this journey. My goal is to be able to spread brain injury awareness through public speaking and advocacy. In the meantime, I am an active participant in a few support groups, sharing my experiences through this blog and working on a case study for hyperbaric oxygen treatment. Whatever your passion may be, find time for it.

5.) Be as social as you can. Isolation is something that we all find ourselves dealing with. Initially we isolate ourselves because we are completely caught up in being the caregiver during a crisis. As time goes on your relationships with friends and family change because we lose the common ground or our child is no longer in the same place to tolerate what they once could. I have always been a very social person. I am not a homebody. I crave being out and about. Isabella isn’t in a place to resume our previous life of constant socialization and be actively out and about. As a result, I have had to find the balance. I miss my family and friends terribly. While Isabella isn’t able to tolerate those situations, I can still enjoy them when she is in bed asleep. I have made nighttime my “me time” by talking on the phone, having visits from friends and family while my daughter sleeps or just enjoying the quiet. It has become incredibly important to me.

6.) Take everything one day at a time. Isabella and I are not victims. We are survivors. What happened to her was tragic, but our lives will not be a tragedy. I can’t go back and change it.  This is our everyday reality.  We take one day at a time. I have a sense of appreciation for life that I never knew was possible. Really, you can’t appreciate it until you are looking at the reality of losing it all. I have learned to enjoy the small things in life. I also allow myself to have my moments. We are parents and caregivers, but we are also human. I have to remind myself of that often. Allow yourself the time to grieve for what was lost. My daughter was robbed of her life. She will never have the life she should have. She will, however, have a life and my goal is for her to be a self-sufficient adult someday.

7.) Don’t lose sight of being a parent. When you become a caregiver, it is easy to lose sight of being a parent also. Isabella and I have made weekends our “vacation.” On the weekends we are Isabella and Mommy. There are no phone calls, meetings, e-mails, research, etc. Those weekends have helped her and I so much.

Parenting, caregiving and your sense of yourself can easily be lost when your child suffers a brain injury. It is a difficult balance, but that balance can be achieved. I have learned that being a mommy to a child with a brain injury is the hardest and yet most rewarding job I have ever had. The pay is priceless as it comes in the form of small successes, pride on their faces and the sense of knowing you fought hard to help them achieve their goals. I am so glad that Isabella picked me to be her mommy.

Top Tips for Parents Navigating Concussion Recovery

Today’s post was written by Jami Stelman Uretskythe mother of Madeline Uretsky, an Ambassador Speaker for BIA-MA who is still recovering from a concussion she suffered in October 2011. Jami is an active participant in the brain injury and concussion conversation and provides information and support for caregivers and parents on her Facebook and Twitter pages. To contact Jami, e-mail concussionmom@gmail.com.

When my daughter suffered a concussion in October, 2011, I had no idea what to expect, or how life would change. I was used to various injuries because she was an avid athlete, but nothing could prepare me for how her concussion would affect our family. The following are just a few of the things that have helped me to get through this.

1. Spend time with him or her. When brain rest was prescribed for my daughter, I decided that I would spend all of my time with her. After all, she was scared and lonely, and I could not let her suffer alone. I was lucky enough to be able to stop working, so I lied in bed with her daily. When she was asleep, I would do things around the house, catch up on phone calls, watch TV, or read, but when she was awake, I was next to her. We talked, I read to her, and we played quiz games. I felt that just having me by her side helped her get through the difficult time of brain rest.

2. Educate Yourself. I spent most of my waking time educating myself about her concussion. She had so many symptoms that were so severe, that she was basically just bedridden for 3 months. I felt that in order to help her, I had to learn about what was going on inside her brain and how the various symptoms were affecting her. I also continue to research the many treatment options available for her. Although at times there seems to be nothing that will help her, there are other times when there seems to be several things to try. Continuing to educate myself and research these options has led us on a seemingly never-ending path of appointments, all of which have helped her in different ways.

3. Find support. The support that I received from other parents who have children with severe concussions was probably the most helpful thing in getting me through my daughter’s recovery. I often felt so alone and so hopeless that being able to discuss these feelings with others who were also going through this was incredibly helpful to me. I would spend hours and hours on the telephone talking to other moms, and my daughter and I would also meet other survivors and their moms for lunch when she was well enough. Both my daughter and I continue to reach out to other parents and children in the hopes that we can also provide support to them.

4. Probably the most important advice I can give to a parent or caregiver of a child with a concussion is to be prepared for a lifestyle change. There is really no way around this, unfortunately. After awhile, you really do get used to things like keeping the shades closed, turning out the lights when your child enters the room, keeping all noise to a minimum, realizing that your child can manage to do only only thing per day, and understanding that more often than not, plans must change at the last minute to accommodate your child’s symptoms. The list of how our family does things differently now is endless, but these changes are the only way to ensure that my daughter is given the best chance for recovery.

While my daughter continues to recover from her concussion, I still follow each of these tools for recovery – it has all become an important part of my daily life. I sometimes sit back and think about the different path my life has taken, and how I could never have imagined it being this way, but it is this way, and just accepting that, and doing what I need to do, has made it easier to navigate.

Family Member Spotlight: A Mother’s Story

Kristin and her daughter Isabella participate in BIA-MA's #BrainInjuryAffects Campaign.

Kristin and her daughter Isabella participate in BIA-MA’s #BrainInjuryAffects Campaign.

The morning of Nov. 25, 2010 was like any other Thanksgiving Day for Kristin Olliney and her four-and-a-half-year-old daughter Isabella. However, it was on that day that their lives changed forever.

“She was fine all day,” explains Kristin. It wasn’t until 7:00 that night that Isabella started “screaming” that she had a migraine and needed to throw up. By 10:30 she was confused and dehydrated. Twenty-four hours after Isabella had complained of a migraine, she was “crashing and literally dying” at the hospital, explains Kristin. Isabella had come down with sudden acute encephalitis.

“Everything happened in an instant,” she says. Isabella was in a drug-induced coma and then her own coma. “When she finally woke up, she was like a newborn,” says Kristin. “She couldn’t lift her head up.”

The brain damage caused by sudden acute encephalitis has caused Isabella, who was once advanced for her age, to be developmentally and behaviorally delayed and to have seizures, tics, migraines, anxiety, symptoms of ADHD, mood disorder, aggression, OCD, sensory issues, depression, learning disabilities, visual and audio misperceptions, cognitive disorder and separation anxiety. Additionally, she could not walk or even move her arms and legs at first.

Despite doctors’ beliefs, Isabella survived. “My daughter is the one-in-a-million to survive and she truly is a miracle,” says Kristin.

Isabella spent nearly a month in the hospital, which included the time she was hospitalized for sudden acute encephalitis, as well as in-patient rehabilitation. Kristin says that she was never told how much rehabilitation would be needed or of the long journey they had ahead of them.

“I thought when we got out of the hospital, in six weeks life would be back to normal,” she says. Brain injury “is a life-changer. It’s not like a broken bone.”

Read the rest of Kristin & Isabella’s inspirational story on our website