Advocating – Mommy of a Miracle

Advocating for your loved one with a brain injury is both exhausting and yet rewarding.  You get thrown into this journey and it is literally sink or swim.  Advocating is necessary to ensure that your survivor gets the right treatment, services and benefits.  It can be intimidating at first to stand up to those who hold so much power.  Here are four tips to help you:

  1. Research. The internet is key in helping you learn as much as you can about brain injuries, therapies, treatments, doctors and such. Remember every brain injury is as unique as the person who has one. However the more knowledge you have the better. It is my research that got Isabella Hyperbaric Oxygen Treatment. That one treatment has made such a significant impact on her recovery.
  2. Apply early. Start trying to get benefits early knowing that most likely you will be denied at first. Appeals can take a while so the sooner you start the better. Always appeal decisions if denied. I have won several appeals and you may be able to as well.
  3. Same vision. Make sure that the medical and therapy team’s vision is similar to yours. There will be times on this journey that what you foresee and what the team foresees is different. Adjust your team accordingly. It is ok to switch providers. I even encourage it because that “fresh set of eyes” can make all the difference between moving forward and standing still.
  4. Speak up. Remember you know your survivor better than anyone. Ask questions, get other opinions and if something doesn’t feel right, it probably isn’t. You are the voice for your survivor.

On days when the battles seem never-ending look at your survivor.  You played a big part in getting them where they are in recovery.  I look at Isabella and I see how hard she fights to regain all that she has lost.  Isabella is so brave in a world that is very scary for her.  She is the reason I do everything that I do.

“The least I can do is speak out for those who cannot speak for themselves.” Jane Goodhall

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. 

A Missing Piece Found – Mommy of a Miracle

Prior to Isabella’s ABI, she was so creative.  Isabella was forever making something including costumes and fairy wings out of paper.  She loved to color, draw and had started writing her name.  When Isabella got sick with encephalitis, her creativity was lost.  I remember the first time a hospital volunteer had given her paper and crayons.  I watched Isabella struggle as she tried to hold the crayon.  Isabella became so frustrated because she knew that drawing and coloring were things she was great at yet she couldn’t even hold the crayon.

As Isabella progressed in recovery, she had started to learn how to color, draw and write again.  Yet that creative passion she had was gone.  About 1.5 years post ABI Isabella started to receive infusions for an immune deficiency.  During one infusion, a child life specialist came in to do an art project with her.  This visit forever changed our lives.

Over the last three years this particular child life specialist came to do art projects with Isabella.  What started out as a fun way to pass the time soon became so much more.  With each visit, Isabella’s creativity started to grow.  That piece of Isabella that was lost to her ABI was slowly starting to emerge again.  Sadly this child life specialist left his position.  While he is no longer there, the time together allowed Isabella find that piece of her that was missing, her creativity.

As I made dinner the other night, I watched Isabella at the table make a costume for her stuffed animal.  She had taken some leftover fabric, scissors and a marker.  Isabella figured out what she wanted to do and she was successful.  That was the first time Isabella had attempted to make a costume since her ABI.

When you are a parent to a child with a brain injury you meet a lot of people.  Whether they be doctors, nurses, therapists, strangers, teachers, receptionists etc.  Some will help you move forward, others show you what not to do, everyone has a purpose.  Every once in a while one of those people changes your life in a way that you never expected.

“We don’t meet people by accident.  They are meant to cross our path for a reason.” unknown

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. 

Moments – Mommy of a Miracle

This journey that we find ourselves on is one of the hardest I have ever experienced.  Life as a parent to a child with a brain injury puts your emotions on a rollercoaster from hell.  I’m the first one to tell anyone that they are entitled to have their moments.  Yet I find that I struggle with allowing myself to have them.  It is completely ok for others to cry and yet I see it as a sign of weakness in myself.  After all we are all entitled to feel however we do at any given moment.

Last night as I got ready to go to sleep, I checked Facebook.  Facebook is full of pictures of kids Isabella’s age and yet last night I had a moment.  It was like a train wreck and I couldn’t look away. There on Facebook were these pictures of this beautiful little girl experiencing life and having fun.  Out of nowhere the tears starting streaming down my face. It was yet another reminder of all the things Isabella has missed and the things she will never experience.  My heart hurt because my beautiful daughter was robbed of the chance to have the life she was supposed to.  I am grateful beyond words that I still have Isabella and I know it could be so much worse.  Yet it’s like a punch to the gut reminding me what could have been.  It is just not fair.  Yep, I even went there.  I am not one to play the “its not fair card”, however, last night that is exactly how I felt.  After I cried my eyes out, I reached out to those that I knew would understand because as the rest of the world moves on, we are still here at an almost stand still.  I cried until I couldn’t cry anymore knowing full well that tomorrow is a brand new day and I would soldier on.

Today I am back on track and moving forward.  One day at a time.

“Don’t forget you’re human, it’s okay to have a meltdown, just don’t unpack and live there.  Cry it out and then refocus on where you are headed.”  Annoymous

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. 

Moms: In loving memory of Zakary, Odie, Raina and Gary – Mommy of a Miracle

As another Mother’s Day passes, we remember the moms that we have lost and we cherish the ones that we have here today.  Mother’s Day is one day a year and yet the moms that I know deserve to be celebrated every day.  As mothers we all dream of how life for our children will be.  We dream about them playing sports, having friends, graduating, going to college and eventually having a family of their own.  A brain injury is not something that ever enters our mind UNTIL it actually happens.  Then life comes to a screeching halt.

Parents of children with brain injuries are some of the most amazing moms I know.  In addition to having the typical mom role, we are also therapists, advocates, educators, nurses, doctors, pharmacist etc.  Our days are jammed packed with trying to help our child move forward with recovery in addition to help with ADLs, behavior support plans, medication etc.  Our nights are often filled with worries about what the future may hold or spent on the internet looking for the next treatment that could help our child progress.

The majority of the moms I know who have a child with a brain injury were told very similar things.  We were told our child wouldn’t make it through the night, would be vegetative, wouldn’t walk or talk etc.  Some of our children defied those odds to varying degrees.  Brain injuries are so complex that at any time things can change.  For several moms in my support group, the unthinkable happened.  Their child survived the initial injury only to gain their angel wings months and even years afterwards.  These moms are the ones that I admire the most.  Each was faced with the decision that no mother should ever have to be faced with.  Each one chose to keep their child comfortable and to not prolong the pain.  The bravery, strength and love for their child is admirable.  Parents are not supposed to bury their children and yet just recently five have had to do just that.  I hope that if I were to ever find myself in their shoes that I would have the courage to do as they have.

As another mom prepares to say good bye her child, it is yet another reminder just how precious life is. Tomorrow is not a guarantee for any of us.   In an instant it can all change and never be the same.

“The women whom I love and admire for their strength and grace did not get that way because **** worked out.  They got that way because **** went wrong, and they handled it.  They handled it in a thousand different ways on a thousand different days but they handled it.  Those women are my superheroes.” Elizabeth Gilbert

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. 


Say What?? – Mommy of a Miracle

As a parent to a child with a brain injury, I have heard many comments from a lot of people.  Almost none of them have a child with a brain injury or special needs.  I find that people often speak before thinking.  Here are a few things not to say to a parent of a child with a brain injury or special needs:

  1. “Everything happens for a reason” often said by people who want to provide comfort but have no idea what to say. I completely disagree with this statement. I truly believe that sometimes bad things just happen. In my opinion, there is never a good reason why a child has to suffer.
  2. “She just needs a good whooping” said by onlookers as they watch Isabella having a hard time due to anxiety, sensory overload and dysregulation. Physical punishment isn’t going to help a child cope, adapt or function. Isabella can’t control her emotions, mood, and behavior like we can. Trust me Isabella is more miserable having a meltdown than you are watching it. Please just walk away and say nothing.
  3. “She looks fine” said by anyone who doesn’t know how our life really is. Yes physically Isabella looks fine, however, I can assure you that is not the case. A brain injury is an invisible disability. I would give anything for her to be fine.
  4. “I can’t fix a brain injury” said by a therapist. When I bring my child to therapy, I don’t expect her brain injury to be fixed. However I do expect help to get Isabella closer to functioning in life. Please be kind and just tell me that you do not believe you and my child are a good fit.
  5. “You need to get over it” said by those that are uncomfortable with me discussing brain injuries. A brain injury is not something that you ever get over. It is something that you live with every single day. I talk about brain injuries not so others feel bad or sorry but rather in hopes that I can prevent you or your family from ever having to experience one.
  6. “You should just be grateful that she survived” said by those that don’t understand that therapies last a long time. I am grateful beyond words. That doesn’t mean that I am not going to continue to push Isabella further along in recovery. Settling just because she survived is not an option. Isabella wants so much in life and I want to help her achieve that.
  7. “I will pray for a full recovery” said by others during crisis. When your brain is damaged and forever altered so are you. It is unrealistic to expect someone to be exactly as they were pre brain injury. Pray instead for strength, courage and the will to never give up.

In the end it is better to say nothing than to throw a cliché out there.  If you want to say something to us please be kind.  Tell us that we are doing a great job or that you are praying for us.  If you aren’t sure what to say it is ok.  Truthfully sometimes we aren’t sure what to say either and that is ok.

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. 

Apply to run on the BIA-MA Falmouth Road Race Team!

falmouth road race team 2014

Run as a member of the Brain Injury Association of Massachusetts official New Balance Falmouth Road Race team, and support brain injury. Apply now for a spot on BIA-MA’s team, and participate in the coveted and sold-out summer race.

About the race course: This beautiful, challenging seven-mile road race begins in Woods Hole and runs along scenic Cape Cod, ending at the beach in Falmouth Heights.

Each team member receives:

2015 Team Requirements: A $1,250 fundraising commitment by each Falmouth Road Race BIA-MA team member, guaranteed by credit card, is due on or before August 28, 2015 (You will be charged for any remaining balance the day after this commitment is due).

Additional information:

  • To learn more about the Falmouth Road Race,please visit falmouthroadrace.com
  • Runners who have secured their own race entries are welcome to join BIA-MA’s official team and receive these benefits. Contact the Development Office for more information.
  • Questions? We are here to help! Contact Us

Bittersweet – Mommy of a Miracle

Isabella got sick with sudden acute encephalitis on November 25th, 2010.  Before her Acquired Brain Injury (ABI), Isabella was an outgoing, happy-go-lucky, carefree little girl.  Right before starting preschool, her and I went to Build-a-Bear and made a stuffed animal, a Yorkie.  Together we recorded our favorite saying and put the “sound” into the stuffed dog.  Whenever we squeezed her paw we could hear us.

Over the last almost 4.5 years, I have seen this stuffed animal quite a lot.  The other day Isabella squeezed the paw and I remembered that we recorded a “sound”.  I am not really sure how I had forgotten that.  Listening to our voices, stopped me right in my tracks.  A flood of emotions overcame me.   It was bittersweet. It was sweet in the sense that she sounded so little and yet so innocent.  However it was hard to hear because it was before everything changed. It’s another reminder of how our life is defined as “before Isabella got sick” and “since she got sick”.  That one moment has become the divider that separates our life into two eras.

As I listened to the sound of our voices, I allowed myself for the first time to wonder what Isabella would have been like had she not gotten sick.  To be quite honest, I can’t even imagine who she would be.  When I tried to in vision that, my mind went completely blank.  I think it is because I have never allowed myself to go there.

The recording of our voices is similar to how I feel about the videos and pictures that I have of Isabella before she got sick.  The videos are of Isabella singing songs from preschool and just being silly.  It’s been almost 4.5 years and I still can’t watch them.  It is too hard and just thinking about them causes me to start tearing up.  Ironically, pictures are different.  I can look at baby pictures and be ok.  The closer the pictures get to the days and months leading up to “that day”, the harder it gets.  As much as I love it, it also is a painful reminder of what once was and now will never be.

As with many things, I find this journey to be bittersweet too.  Heartbreaking because Isabella has forever been changed by her ABI.  Her life is much harder than what it should be.  Isabella’s life is a constant battle of one step forward and three back.  Amazing because Isabella wasn’t supposed to make it and yet here she is defying the odds every step of the way.  She continues to inspire those around her as she fights to regain her life.  Throughout this journey I am continuously reminded just how truly blessed I am.  I love this Isabella more than life itself and I wouldn’t want to be anywhere else other than by her side.

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.