Category Archives: Survivor 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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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.

26 Miles for Mom

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Jonathan Korhonen will be running the 2014
Boston Marathon to bring awareness to brain injury in support of his mother.

On August 14, 2013 Annette Korhonen had a stroke, fell and suffered a traumatic brain injury. Over the past several months, she has endured time in the ICU and currently is in extended care in rehabilitation. She has battled through four brain surgeries, fought off cranial meningitis and endured a laundry list of procedures and issues as a result of her stroke and fall.

With her family by her side every step of the way, her son, Jonathan, has decided to run the 2014 Boston Marathon in her honor. Jonathan has always been an avid runner and his mother has always been his biggest supporter. He was in the midst of training for a marathon to qualify for Boston when his mom suffered her stroke. In order to run in the qualifier, Jonathan had to make the difficult decision of taking time away from being with his mother during the early stages of her care to run in a race over 8 hours away. He knew that she would want him to continue to pursue his dream of running the Boston Marathon. He qualified for Boston with thoughts of his mom on his mind, and quite literally, on his heart thanks to a specially designed racing jersey with her picture on it.

Jonathan is using this opportunity to run the 2014 Boston Marathon to raise money in support of his Mom as well as a way to raise awareness for the needs of the brain injury community. As he puts it, “It has been made clear that Mom’s recovery will require long-term care with significant and expensive costs that will not be covered by insurance. While I pray for Mom’s ability to recover, I also pray that the expense of care won’t prohibit us from giving Mom the opportunity to get better.” He has set a lofty goal of $50,000 and has committed to donating 50% of all the money he raises directly to the Brain Injury Association of Massachusetts. Jonathan and his wife chose BIA-MA in part from a previous professional interaction Jonathan’s wife had with BIA-MA’s Information & Resources Department: The resources provided, whether it was housing options or educational materials, were always helpful, concise, and concrete. The best part was that the direct person she spoke with always followed up with an email a few months later to ensure that the resources were useful and to offer another helping hand if needed. BIA-MA’s robust advocacy efforts and the widespread footprint of their support groups is also one of their best features. “We are confident and happy to say that Mom will benefit from their resources and programs at some point throughout her journey.”

Stay tuned for our Facebook, Twitter and email updates regarding Jonathan’s training and marathon updates.

Mommy of a Miracle: My Challenge to You…

kristine & isabella

Before Isabella’s Acquired Brain Injury (ABI), I had no idea what a brain injury was.  I like many others never could have imaged the journey we were about to embark on.  I had heard about brain damage but didn’t know what it meant.  What I knew about comas came from television shows; however, I quickly found out that real life comas are completely different. Television comas are often portrayed as a person lying peacefully sleeping with a wrap on their head.  Real life comas are far from peaceful; there are machines everywhere, wires attached to every part of your body and the person is often thrashing around.  When Isabella was put on a ventilator I remember saying I didn’t understand because her lungs were fine.  I was then told that your brain controls breathing.  When Isabella woke up and couldn’t move I remember asking why because I knew she wasn’t paralyzed.  I was then told that your brain controls that too.  We were quickly thrown into this world of brain injuries with so many uncertainties.  I knew nothing about brain injuries.

Over the last three years, I have come to realize just how often brain injuries occur and how little people know about them.  March isn’t a month that has the world covered in either green or blue for brain injury awareness.  There isn’t a professional sports team adding the colors to their uniforms like they do in other months.  Unless you have personally been affected by brain injury you probably wouldn’t even know it was brain injury awareness month. “Brain Injury is the leading cause of death and disability in persons under 45 years of age, occurring more frequently than breast cancer, AIDS, multiple sclerosis, and spinal cord injury combined.”  Why is brain injury still a silent epidemic when it is causing this much death and disability?  In my opinion it is because we aren’t loud enough.  Our voices are not being heard.

The month of March should not be the only time that we in the brain injury community raise awareness.  We are all affected by the lack of research in how to effectively prevent and treat brain injuries.  We are all affected by the lack of funding to help support those who survive a brain injury.   We are all affected by the lack of appropriate services especially long term care. We are all affected by the lack of understanding that while our survivor may look fine, brain injury is an invisible disability.  We are all affected by lack of appropriate educational programs for our child survivors.  It only takes one person to make a difference.  Imagine what the world would be like if everyone knew about brain injuries.

What can you do to raise awareness?  Talk with your family, friends and others about those things that we know can prevent brain injuries such as wearing a helmet and using a seatbelt.  Educate your children not to ever drive while under the influence of drugs or alcohol and to not text while driving.  Discuss resources that are available to parents and other child care providers to prevent a baby from being shaken.  Remind others to always have a buddy with when swimming.  Get others involved in looking out for the signs of a concussion or a stroke.  While not all brain injuries are preventable knowing how to best keep yourself and others safe can decrease your risks.

I challenge each one of you to not only raise awareness for the month of March but to raise awareness every day.  We are the voice of our brain injury survivors and the survivors to come.  It only takes one person to make a difference.  Let that difference start with you.

Are you up for the challenge?

Guest Blogger, Kristin Olliney, is the mother of 7-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.

#BrainInjuryAffects – Sonali Durden, Brain Injury Survivor, Pittsfield, MA

nali for blog

Sonali has suffered from 3 brain injuries in her life; the first in 1979 when she was 8 years old.

In 1979 when Sonali was 8 years old, she was hit while crossing the street and dragged by the vehicle. She remembers being angry and uncooperative in rehabilitation. She struggled to walk and run. Her sense of taste and hearing were compromised. Sonali could no longer enjoy music, singing, and playing instruments as much as she used to.

Three times a week, Nali facilitates Sit, Knit and Stitch, a support group that she started for residents of the city housing project where she lives. “Living in a housing project can be pretty lonely and depressing,” says Nali. “I decided to find out what talents were out there and discovered there was a lot of interest in knitting and crocheting so I started a support group, and every week we continue to get new members.”

Nali is also a member of the Berkshire Brain Injury Support Group (BBISG) . “When I moved to Pittsfield and connected with BBSIG that all changed. I have opened up, met new friends and found group support. I enjoy knitting, going to dinner, and taking part in the social and recreational activities provided by BIA-MA.”

Mommy of a Miracle: Why the shame?

Kristin Olliney and her miracle, Isabella, making new milestones every single day.

Brain injury is known to increase the risk of some psychiatric disorders including but not limited to anxiety disorders, personality disorders, depression, substance abuse disorders, self injurious behaviors, obsessive compulsive disorders (OCD), rage, aggression, post traumatic stress disorder (PTSD) and the list goes on and on.  Both survivors and parents of children with brain injuries find themselves suffering from these psychiatric disorders as a result of brain injury.  These conditions and disorders are often hidden from others because nobody wants to look “crazy”.  Our society has taught us that having these disorders is bad.  We are often told to be strong or grateful for surviving.  Then we are shamed into feel like something is wrong with us for admitting that we need help.

As a result of Isabella’s Acquired Brain Injury (ABI), she now has severe anxiety.  The separation anxiety, social anxiety and general anxiety is debilitating not to mention completely heartbreaking.  Isabella wakes up every single morning screaming from a panic attack.  This is how our day starts.  Isabella doesn’t like to leave the house because there are “bad things out there” and she feels safer at home.  When we are home, the routine is familiar, the expectations are the same and it is pretty predictable but when you leave home there is a lot that can’t be structured or predicted.  If other people look at Isabella while we are out at an appointment, she immediately tries to hide in her stroller and she starts to panic.  Unfortunately, anxiety for both a brain injury survivor and the parent of that child is all too common.

Isabella suffers from auditory hallucinations and on occasion visual hallucinations.  Isabella has these constant “sounds” that she hears.    About a month post ABI, I found Isabella under our kitchen table rocking back and forth, shaking and screaming while covering her ears.  It was like right out of a horror movie.  Over time, she was able to verbalize what she was experiencing.  The “sounds” that Isabella experiences are similar to static, stomping, banging and often sound like Charlie Brown’s teacher (talking that you can’t understand).  They scare her.  Isabella hates to be alone because of the “sounds”.  The “sounds” are constantly there and at their worst when she is tired, sick, in the car, post seizure and at night.  During the day, I try to keep her distracted and we have set up noise machines to help drown the “sounds” out.

Isabella has no regulation of her mood, behavior or emotions.  When Isabella feels something (happy, mad, sad etc) she feels it very strongly.  Isabella can escalate to rage and aggression within a second.  It is like a switch goes off and everything changes.  Isabella has been said to appear to have the worst case of ADHD that most people have ever seen.   These symptoms are all too common for survivors of brain injury.   We have trialed many medications to try and help Isabella.  Unfortunately, medication has been unsuccessful.  Some medications cause Isabella to have a paradoxical reaction which means instead of helping her slow down it makes her race worse than she was before.  Some meds cause her breathing and heart rate to drop where she appears to be lifeless.  Other medications have no positive effect.  When you have a brain injury, medications react different than they would in a neurologically typical brain.  Isabella receives in home behavioral to help her learn coping and adapting skills.  While Isabella knows what she is suppose to do, applying the skills is where she can’t seem to connect.

Isabella has extremely low self esteem.  She can’t get her brain and body to work together.  As a result she feels stupid, dumb and sad.  Isabella tries so hard every single second of every single day.  It is heartbreaking to watch her continue to try and not succeed.   Isabella knows that before her ABI, things came much easier.  Now everything is a lot harder and as a result she feels negatively towards herself.   I use a lot of positive reinforcement with Isabella.  I ask others that work with her to use it as well.

When we hear of PTSD, we often think of members of the military.  However, PTSD is not limited to the military.  Some of the symptoms of PTSD include nightmares, flashbacks, difficulty eating or sleeping, etc.  Many brain injury survivors live with PTSD every day.  Many parents of children with a brain injury also suffer from PTSD.  When you see your child dying before your eyes, it changes you.  It changes your entire world and everything that you thought you knew.

Isabella, like many other survivors of brain injury suffers from psychiatric disorders as a result of a brain injury.  Parents of children with brain injuries can also suffer from psychiatric disorders because they have witnessed the unimaginable.  Often times people go without treatment because of the shame that often accompanies these disorders.  Brain injuries change not only the survivor’s life but also those directly involved.  It is ok to feel how you do.  It is ok to get the help that you need.  Let’s end the shame that is involved with these disorders.

Guest Blogger, Kristin Olliney, is the mother of 7-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.