Tag Archives: family

Mommy of a Miracle: “You are not Alone”

Kristin Olliney

Kristin Olliney

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. 

“To the memory of Giovanni (Gio) Cipriano”

When Isabella survived her Acquired Brain Injury (ABI) I desperately sought out other parents of children with brain injuries.  Statistically speaking I knew I wasn’t alone and yet I couldn’t find any other parents.  I knew there were others, after all, every 40 seconds another American youth enters an emergency department with a brain injury.  I needed that connection with other parents who could relate to having a child with a brain injury.  Only another parent on this journey could fully understand the emotions that you go through when you have a neurologically typical child one moment and then a child with a brain injury the next.  At one point we all had a neurologically typical child, some of us longer than others.

I wanted to find an online support group.  I needed the option to “talk” whenever I wanted to, on my own terms from the comfort of my own home.  In-person support groups were not going to fit it into an already jam-packed schedule. Plus, I needed more than a once-a-month meeting.  I wanted a safe, non-judgmental place to go to at any given moment.  Most of the online brain injury support groups I found were a mix of survivors, spouses, significant others, friends, family etc.  While these groups have helped me understand so much about brain injury and in particular, survivors, I needed more.

When I didn’t find an online support group specifically for parents, I started my own on Facebook called, “Parents of Children with Brain Injuries.”   I had hoped to have at least a few parents join.  One-by-one as parents joined, I realized that I was no longer alone and neither were they.  We found comfort in knowing that while our paths may be different, the journey is the same because we all have that common bond of brain injury.  We all belong to that “club” that we never asked for or imagined we would belong to.  That feeling of being isolated from the rest of the world had ended because we finally had each other and we are surrounded by parents who “get it.”  Our child survivors range from babies to adult children and our stories vary by how the brain injury occurred.  We are all at different places on this journey.  Some of us are brand new to life with a child who has a brain injury and others have been doing this for quite some time.  “Parents of Children with Brain Injuries” has become our safe non-judgmental place to vent our frustrations, cry over the heartache of what has happened to our children, and cheer each other on while sharing the victories that others couldn’t possibly understand.

Having a child with a brain injury has changed us all.  Our children are now faced with a very different life as are we.  Some of our survivors are being bullied because of those differences.  We struggle with helping the rest of the world understand that while some of our children look exactly the same, they are now completely different on the inside.  We all go through the process of grieving the child we had pre-brain injury and accepting the child we now have post brain injury.  We support each other in that moment of weakness when you don’t possibly think you can make it another day. We get angry when another survivor is treated unjustly by the school, the rest of the world or by family and friends.  We share possible treatment options, how to raise awareness, discuss medical procedures, medication experiences and how to fight insurance companies.  We celebrate the successes of hearing a nonverbal survivor make a sound, watching survivors figure out how to throw a ball or walk.

Two weeks ago, we had our first loss.  A new member joined and she had a child struggling to survive a brain injury.  Unfortunately that child did not make it.  Words cannot express the sadness that was felt.  I have never met this mother nor her child, and yet my heart ached just the same.  After all, at one point most of us were in that same position (watching our child die), praying our child would make it through the night and defy all possible odds to survive.  The reality is that every five minutes someone dies from a brain injury.  That someone has a parent somewhere.

What started out as my need to connect with other parents of children with brain injuries has forever changed who I am as a person, a mother and a caregiver.  I may never meet these amazing parents but I can’t imagine my life without them.  This group and our members have had such a profound impact on me.  I can’t express how much these parents have changed my life.  If you haven’t found a brain injury support group, I highly recommend it.  When you find the right one, you might wonder how you ever survived without them.

To locate a support group in Massachusetts, visit http://www.biama.org/groups.html and click on BIA-MA Support Group Listing. Or, click here.

My Sister, Kim, Part 2

Kim Boleza on her snowmobile

Kim Boleza on her snowmobile

This is the second part of a two-part blog post by Stephanie Deeley, whose sister Kim lived with, and ultimately died from a traumatic brain injury caused by domestic violence. 

…During this same period, the domestic abuse escalated and we as a family were very concerned about Kim’s safety.  Kim had always been independent and had always made her own decisions.  We could not convince her that staying in that situation was too dangerous.  She knew that environment, it was her home, and the idea of dealing with a big upheaval in her life was more than she could handle given all the issues related to her brain injury.  Kim decided staying was the best choice.

In December of 2011, Kim’s husband held her captive in her own home for several hours.  As a result of that event, he was charged with attempted murder and kidnapping, along with a slew of other charges.  Kim was devastated, and went back and forth between being angry and wanting her husband punished, to feeling guilty and wanting him home.  Again, the turmoil and the stress of an unknown and fluid situation was very, very difficult for her to handle as a result of her brain injury.  The court took the decision out of her hands and brought charges against him and held him for 6 months.  Kim found herself living alone, unable to drive, struggling with balancing her check book, and worried about having a seizure when she was home alone.  Ed and I were always there, to drive her to the grocery store or to a doctor’s appointment, to help with finances or to listen to her when she needed to vent. But, she felt lost and dependent and she did not like that.  When her husband was released from jail, she petitioned the court to let him come home.  She was more comfortable being dependent on her husband than her siblings.

It was “normal” for your husband to take you to the doctor or the grocery store, and to balance your check book.  She felt guilty asking us to take time away from our families to help her.  No matter how many times we told her it was not a problem, she still felt bad.  She had a husband, and he should be the one helping her. She could not see how ludicrous it was to be dependent on the person who caused her injury which took away her independence.  And again, Kim was not going to tell people she was a victim of domestic abuse any more than she would tell them she had a brain injury.  Her pride got in the way, as it would for any of us, I think.

Kim’s husband never met the expectations Kim had.  He did not take her to her doctor’s appointments, he did not take her grocery shopping, and he did want to help her.  In fact, he complained to his “friends” about how he had a wife who was disabled and how tough it was for him to be saddled with that burden.  Never did he mention that her disability was caused by him.

On March 9th of this year we all got together at a restaurant in Hingham to celebrate my brother Ed’s birthday.  After much discussion and back and forth, it was decided that Kim’s husband would not join us.  Ed picked his “little” sister up as he had done hundreds of times over the last few years, and Kim spent the night surrounded by people who loved her and protected her and wanted the best the world could give her.  She talked with her niece Catie about her upcoming wedding, and talked with her godson Patrick about his college classes, and chatted with her nephew Matthew about his house on the beach.  She reminded Ed that he was getting old, and told me to stop worrying about her.  She laughed and joked and teased and was the Kim we all knew and loved.  I hugged her when we were leaving the restaurant and she got in Ed’s car and he brought her home.  That was the last time any of us saw Kim alive.

On Sunday evening, March 10th, Ed received a text from Kim about a family event at 7:30.  At 8:20, Kim’s husband called to tell us Kim was on the way to the hospital in an ambulance.  By the time we arrived, Kim’s was gone.  We may never know for sure what happened that night, but there are some things we are sure of.  Kim was a victim of domestic abuse.  Kim’s head injury was caused by her husband.  Whether Kim died of a seizure, or some event involving her husband, she died as a result of domestic abuse.

According to the Brain Injury Association, it is not surprising to hear that a brain injury was caused by domestic abuse.  The stigma of having a brain injury is still something we need to fight, as is the stigma of being a victim of domestic abuse.  I cannot even imagine the difficulty in having to deal with both of those issues as my sister did.

Kim’s husband is still facing the charges from the December 2011 incident.  As part of his defense, he is claiming that Kim had severe memory issues and could not possibly be sure of what happened on the night in question because of her brain injury.  The injury he caused is now what he is using to defend himself against the charges of attempted murder.

Kim’s life was changed as a result of her injury.  She lost her independence and her analytical mind, and she lost her job.  But, Kim continued to move forward and try to find a way to improve her life.  And on many occasions, she continued to share her love and laughter with the people who loved her most in this world, and who miss her the most. My relationship with my sister was one of the most important in my life.  There were so many times I relied on her advice to analyze a situation or figure out a course of action.  I trusted her judgment, and valued her insight. Most importantly, I loved her.  As she grew from my baby sister to my friend, our relationship grew also, and as her life changed because of her brain injury, some relationships in her life were altered…some did not survive.  But family was not one of them.  She was always the fun one, the one who could make you laugh just as easily as she could make you see a need to change.  She never judged and she always loved. She valued truth, even when it was tough to hear, or tough to tell, she was kind and forgiving, and a trustworthy keeper of your secrets.

Given more time, I believe Kim would have found a new success in life, and would have learned to live a full and productive life even with the limitations that were a result of her brain injury.  Who knows what the future holds for new treatments and medicines. Use every resource available to you, including those offered by the Brain Injury Association.  Every day is a new opportunity to grow and to improve.  Don’t let your brain injury define your life.  Don’t settle for less than you deserve.  Do not be afraid or ashamed to acknowledge your brain injury, or talk about how it impacts your life.  What we tolerate, we cannot change.  Don’t tolerate a life that is less than it can be.  Someone once shared with me that if you are always trying to be normal, you will never know how truly amazing you can be.  I hope to always remember that…

My Sister, Kim, Part 1


Today’s post comes from Stephanie Deeley, the sister of Kim Boleza, who lived with a traumatic brain injury and ultimately died from it. Her story will be told in two parts. Look for the second part in an upcoming post.

I recently sat down with Emmy in BIA-MA’s Marketing and Communications department to talk about my sister Kim, who had a traumatic brain injury as a result of domestic violence. To describe Kim, you would need a dictionary full of words!  Smart, funny, gutsy, loyal, determined, dedicated, kind and loving all come to mind.  If you know what’s good for you, never get in Kim’s way when she is determined to accomplish something.  Kim set high expectations and goals for herself and she was always successful in achieving those goals.

Kim went to college and grad school, but not on the schedule that most people do.  She actually flunked out during her first semester at UMass Amherst. I am convinced more because she simply did not want to be there than because of anything else. If you are not in school, then you have to work, and Kim had a few interesting jobs before settling in as a client service representative for an organization that cared for adults with severe autism.  Kim was great at her job, and loved by her co-workers and her clients.  But, her clients were a challenge, and one day Kim was hurt at work.  My brother Ed and I both received calls that she was on the way to the hospital in an ambulance, and off we went dreading what we would find when we arrived.  I remember thinking how grateful I was that it was “only” a concussion.

Kim finally figured out after a few years what she wanted to do, and she went back for her Bachelor’s degree, and after a few years working, she went back again to grad school where she excelled.  She graduated in May of 1999 and started interviewing for her first “real” job.  In September of that year she went to work for Children’s Hospital, and began a career that took her to three of the best known hospitals in the world, and earned her a reputation as one of the best in her field.  While at Children’s Hospital, she was driving home one night when a deer ran out of the woods in front of her. An avid animal lover, she of course swerved to avoid hitting the deer, which resulted in her car being totaled and another concussion.  And again I remember thinking, “Thank God it is only a concussion!”

Kim Boleza

Kim Boleza

Kim never wanted to get married but had some great boyfriends over the years, so when she introduced us to a new man in her life in 2002, we didn’t think too much of it.  I do remember driving to a skating contest to see our niece after one of her first dates with this man, and she told me she felt like he was stalking her simply because he called to make sure she made it home safely.  He was 12 years older than her, my age, and I laughed and told her it was an age thing, but I do remember thinking there was something different about the way she spoke about this new man.  In the summer of 2004, he proposed to her on the jumbo-tron screen at a Red Sox game.  I remember being a bit concerned at the time, thinking he did that knowing she would not embarrass him by saying no in front of all those people.  I should have listened to my gut.

Kim married in September of 2005.  It was not too long after that when she first said she did not think she was cut out for marriage.  I told her she had been single for a long time, and adjusting would take some time.  I never thought to ask if she was safe, or if she was afraid of her husband.  I should have.

Eventually our suspicions that there was domestic abuse were no longer suspicions.  Kim’s husband had started drinking, he was not coming to family events, and Kim was showing signs of withdrawal from her family and friends, a classic symptom of abuse.  One February day Kim informed us that she had fallen on the ice in her driveway and hit her head pretty hard. I don’t think any of us bought her story, but we all respected her right to her privacy, and thanked God it was “just a concussion.”

Kim was soon experiencing severe issues with headaches, difficulty remembering appointments and schedules, and a variety of issues that seemed to point to something more serious. Shortly thereafter she had her first seizure, or at least the first that she told us about.  We also began to notice that she would send emails that were just gibberish, more than just spelling errors.  Kim was still working and we expressed to her our concerns.  By this time, Kim had been diagnosed with a brain injury, but she did not want to tell her employer that. She was having difficulty doing the paperwork for her job and missing time from work because of the serious headaches and time in the ER.  But, Kim would not tell her employer that she had a brain injury.  She eventually lost her job, and even then, Kim preferred to have them think she was incompetent rather than that she was a person with a brain injury.

Kim’s seizures were difficult to control and it was a constant effort to try and find a combination and dosage of medicines to control the seizures.  Kim never knew when a seizure was coming; she had no aura prior to the event.  After several car accidents, it was determined that Kim was having mini-seizures, and she stopped driving.  She was experiencing debilitating headaches that brought her to the emergency room on a regular basis. Kim had cognitive testing done and she finished in the bottom 10% on executive functioning skills.  This was an area Kim had excelled at all her life–the ability to prioritize, organize and analyze.  It was a difficult day for Kim.  She was hospitalized on several occasions to try and get a better understanding and control of her symptoms.  Kim recognized that she had limits, but she always tried to push the envelope and find alternatives.  It is worth noting that at all the appointments Kim had, never did one medical professional suggest the Brain Injury Association as a resource to Kim.  Ed saw a billboard on the highway driving Kim home from one of these many appointments and suggested Kim should contact them.  She never did…

…to be continued…