Category Archives: Caregiver & Family Member Support

Hope – Mommy of a Miracle

Since Isabella’s Acquired Brain Injury (ABI), I have found hope to be crucial on this journey.  Hope that against all odds it would somehow work out.  Hope that things would turn around.  Hope that I was doing the right thing.  Hope that this medication or therapy or doctor etc.  would be just what is needed to move forward.  Without hope what is there left?  I always try to encourage others to sustain realistic hope.  As I watched Isabella continuing to regress and decline, I started to lose hope that we could turn this around.  Although every time I looked at Isabella I knew I had to continue fighting on.  She hadn’t given up hope so neither would I.

As I embarked on a path to raise twenty two thousand dollars for Isabella to have her own Hyperbaric Oxygen chamber at home I found the hope start to build.  I heard the doubt in others voices and I knew it was a lot of money, but I knew that we would raise the money somehow some way.  My husband and I reached out to anyone and everyone asking for their help.  We had our family, friends, my amazing support group and complete strangers helping us figure out a way to make it happen. The outpouring of love and support was incredible.  I spent my nights researching ways to raise money knowing full well that any fundraiser that was set I couldn’t physically be there.  I continued on because I knew HBOT provided hope that we could turn this around for Isabella.  I had hope that we could do this for her.

As the end of September approached, so did the fifth anniversary of my Nana’s death.  I truly believe she is always watching out for us.  That week things started to come together.  That hope that I had struggled to find again was starting to rebuild.  It is often said that it only takes one person to make a difference but I truly believe it is a lot of people doing what they can together.

With each person or company I reached out to it led us one step closer.  As Isabella’s story was shared, I received the most amazing email on the anniversary of my Nana’s death.  Guardian Angel Motorsports heard about Isabella.  After speaking with the founder, they agreed to donate the rest of the money needed to get Isabella her HBOT chamber.  It has been a few days and yet I am still in shock that this has really happened.  Isabella’s HBOT chamber has been ordered and it is in transit to us. I truly believe that my Nana placed this Earth Angel in our path because she saw that I kept pushing through knowing that for Isabella I would do anything.  My hope may have wavered but it was never truly lost.  What I want others to know is that when things seem impossible and the odds seemed stacked against you, remember to keep pushing forward.  “Once you choose hope, anything’s possible” – Christopher Reeves

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.

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First Day of Second Grade – Mommy of a Miracle

One of the hardest decisions on Isabella’s journey has been the decision to homeschool her.  It was honestly something that I never even thought of or considered until her medical team recommended it last year. The decision to homeschool was one of the hardest I have ever made. I knew it was the right choice for Isabella.  When it comes to her I will do anything to help.

Last year, once Isabella realized that we were going to do “work” at home she excelled.  Isabella loves to learn and that smile just lights up the room.  As Isabella’s regression set in, the one thing that she was consistent in was her “work”.   I was so happy that Isabella continued to thrive academically.  When the Hyperbaric Oxygen Treatment (HBOT) stopped, Isabella quickly went from regressing to a downward spiral.  It was heartbreaking to watch Isabella lose skills that she had mastered and worked so hard to achieve.  It frustrated Isabella because she knew that she had already learned certain things and yet she was unable to remember.  As this past summer approached, Isabella and I worked every day to maintain what skills she still had in hopes of preventing further loss.  No matter how hard and challenging it was for Isabella, she was always excited to do her “work”.

As August approached, Isabella and I started talking about second grade “work”.  Isabella would ask with excitement about all the new things she would learn.  On Labor Day weekend we redid our “work” area in preparation for the “First Day of Second Grade”.   As I watched the excitement and joy in Isabella’s eyes, I thought this is how school is supposed to be for a second grader.  It is not supposed to be like last year- filled with terror, crying, screaming and aggression.  I always knew that I made the right decision but seeing that excitement in Isabella for second grade solidified my choice.

The “First Day of Second Grade” finally arrived.  Isabella was ready to do her “work” the moment her eyes opened.  I can’t express enough, how even though Isabella continues to regress in so many areas, it is a true blessing to see that her love for learning is still there. It continues to be our silver lining.  As we embark on another year of learning, I am excited to see how far Isabella will go.

Homeschooling was one of the hardest decisions on this journey and yet it has now become one of the best decisions.  In true Isabella fashion, she does things her way.  Isabella does not follow the path of everyone else, she is unique and likes to make her own path.  For that I am forever grateful.

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.

Grieving – Mommy of a Miracle

As a parent to a child with a brain injury, I can tell you that this journey is an emotional roller coaster from hell.  The truth is we grieve and most people on the outside just don’t get it because after all our child is still here.  This is my attempt to explain something that is hard to “get” unless you live it.

When someone you are close to passes away, there is a wake followed by a funeral and then the grieving cycle begins.  Generally the grieving cycle consists of shock and denial, followed by anger, then sadness, bargaining and finally acceptance.  When your child suffers a brain injury most  times you have a child who looks like they did before but they are an altogether different child.  Almost like a stranger was placed in their physical body.  We not only go through the grief cycle but are often times left with what has been called chronic sorrow.  Chronic sorrow is defined as the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions*.

Shock and denial is the first step of grieving.  According to the Head Injury Center every 5 minutes in the United States a brain injury leaves someone permanently disabled.  When that brain injury happens to your child, shock sets in fast.  I remember looking at Isabella hooked up to all these machines, tubes and IVs everywhere, thinking is this really happening or is this a horrible nightmare that I will wake up from? I mean after all Isabella was fine all Thanksgiving Day, how did things go so terribly wrong so fast?  I was physically going through the motions but I was in complete shock.  There are chunks of time that I just don’t remember.  Denial is something that I never experienced and for that I am eternally grateful.  I think the fact that I was a single parent helped me a lot.  I couldn’t fall apart or deny what was happening because I was the one having to make major decisions that could lead to life or death.

Anger is the second step of grieving. For me anger is such a foreign emotion.  I am not an angry person.  I can only remember two times in my life where I was angry.  Yes I get mad or upset like everyone else but anger well that was not an emotion I was used to.  I was angry that my child was robbed of the life she was supposed to have.  Isabella was a 4.5 year old little girl who had the world waiting for her.  She was this happy-go-lucky, social, smart little girl who met friends everywhere we went.  She was in preschool and she was playing on a soccer team – the one thing she had talked about since for as long as I can remember.  Yet my baby girl was hooked up to machines galore and fighting for her life.  I was angry and I have my moments were I still am.  It is ok to have those moments as long as you are able to move forward.

Sadness is the third step of grieving.  It is when the reality of your child having a brain injury actually starts to set in.  I was sad that the child I had for 4.5 years was gone.  Isabella looked exactly the same yet was replaced by what seemed to be a stranger.  I was sad that Isabella had to go through and endure everything from therapy to tests to doctor’s appointments etc.  I was sad that things Isabella had mastered before her ABI were now so challenging or gone such as walking, writing, coloring, sitting up etc.  Watching Isabella struggle with not only the heartache of not being able to do what she once did but also seeing the  frustration she felt because she knew she could once do it.  I was sad and I still have my moments were I am very sad.  I allow myself those moments because I am human and I know that I will keep moving forward.

Bargaining is the fourth step of grieving.  It is when you try to find the reason or explanation as to why.  It is asking “what if”, “should’ve, could’ve, would’ve” etc.  Often times bargaining is people thinking that they are paying for past mistakes.  I am fortunate that this is not something I went through.  Quite frankly I believe that sometimes bad things just happen.  There is not a rhyme or reason, it just is what it is.  I knew that I did everything that I possibly could to save my child.

Acceptance is the final step of grieving.  It occurs when you have come to the realization that what was is no longer and you start your new normal.  Acceptance doesn’t mean that what happened is ok.  It quite simply means that you are living in reality and have an understanding that life is different.  I will never be ok with what happened to Isabella.  She was robbed of her life.  I have come to the realization that the path Isabella was on prior to her ABI will not be.  However that doesn’t mean that Isabella can’t have a life.  Will it be the same as she was set to prior, no, probably not but at the end of the day, all I want is for Isabella to be happy and live to the best of their ability.  Acceptance doesn’t mean that all is ok it just helps you to keep moving forward.

Chronic sorrow is how best to explain life with a child who has a brain injury.  You are repeatedly faced with a child who in most cases looks exactly like their old self.  However, they are completely different. I miss the Isabella I had for 4.5 years. She was so happy-go-lucky with not a care in the world.  When I have those small glimmers of my old Isabella (however brief and far between they maybe) I take advantage of it.  What I have found is that I love my new Isabella more than I ever loved the prior one.  It is hard to imagine that possible.  The Isabella I have now has become my hero.  I admire her courage to face each day no matter how difficult it maybe.  I admire her determination and I hope she never loses that fight.

“The only people who think there’s a time limit for grief, have never lost a piece of their heart.  Take all the time you need.”  unknown

*taken from www.chronicsorrow.org

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.

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 – 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.