Five Things Every Survivor Should Hear In loving memory of Christopher – Mommy of a Miracle

As a parent to a child with a brain injury each day presents itself with blessings and challenges. We have learned that in an instant it can all change and never be the same. Some days are more successful than others. Yet each day I make sure that I tell Isabella these five things:

  1. You did a great job. I always tell Isabella she did a great job regardless of how much aggression and violence there is in the day. I tell her every night as she gets tucked into bed. Isabella has no control over her emotions, mood and behavior. She has severe memory deficits. Isabella tries so hard every day and for that I am forever grateful. To me trying is what counts and she tries so hard. Our survivors all have shining moments throughout the day no matter how small they maybe. They need to know that we recognize the hard work that they are putting in.
  2. You are brave. I tell Isabella this every day because to her the world is scary. She has debilitating anxiety, hallucinations and sensory overload. Isabella struggles with things that we all take for granted. No matter how scared she is or how terrifying the world seem to her, she tries. That is bravery. Our survivors are incredibly brave to endure all that they do every single day. They need to know that we see them as brave even if they don’t see it themselves.
  3. I am proud of you. I tell Isabella this every day because she continues to inspire me. She woke up out of a coma in the state of a newborn. Isabella fights so hard to regain her life. Every task that she does is amazing. My daughter wasn’t supposed to make it through the night and yet she did. Isabella is walking, talking, learning to read and so creative. Our survivors are amazingly resilient and should hear that others see it too.
  4. You are smart. I tell Isabella this many times throughout the day because she thinks if she can’t remember something or she isn’t safe that makes her dumb. Isabella is smarter than she realizes and wise beyond her years in some areas. Our survivors need to know that just because something takes them a while to understand or “get” it doesn’t make them dumb. They are incredibly smart and need to hear that.
  5. I love you.   I tell Isabella this every chance I get. When she was dying I wondered if I told her enough. I knew I did, however, when you have watched your child dying it makes you realize just how precious life is. Our survivors need to know that we love them no matter what. They may not be who they were but we love them just as much if not more.

As a parent we want so badly to help our children regain their lives. There are so many parts of recovery that we can’t control. What we can control is what we say to them. We can be instrumental in helping build their self esteem.

“Promise me you’ll always remember… You’re braver than you believe, stronger than you seem, smarter than you think and loved more than you know.” Christopher Robin

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

Too Many Too Soon In loving memory of Robbie, Cody and Angelina – Mommy of a Miracle

As a parent to a child with a brain injury, most of us have thought that we were “in the clear” when our child survived the brain injury.  It’s unimaginable to think that they could survive only to later gain their angel wings. Since February my support group has had that happen 8 times.  That is 8 children gone too soon; 10 children in all.  10 sets of parents left devastated and our community heartbroken at the loss of yet another child.  With each loss we are reminded that it could be any of our children at any time.  Tomorrow is not guaranteed for any of us.

According to the CDC, 138 people die every day from brain injuries.  That is 138 people taken too soon.  That is 138 people who leave behind devastated family and friends.  Brain injuries are a global epidemic.  Here are 4 things that you can do to help raise awareness:

  1. Educate others by sharing your story. No one thinks a brain injury can happen to them (or their family) until it does. Your story may help someone else from having to deal with this life altering injury.
  2. Contact your local Brain Injury Association to find out how you can help locally. If everyone got involved imagine the impact that we could have.
  3. Take precautions: wear a helmet when riding a bike, motorcycle, skateboard, rollerblades or scooter.   Wear a seatbelt when in a car. Don’t drive while under the influence. Limit distractions when in the car. Not all brain injuries can be prevented but eliminating the things that put you at risk will help.
  4. If something doesn’t seem right with your survivor seek medical help immediately. You know them better than anyone. If your gut instinct says something is wrong there probably is.

As a parent to a child with a brain injury, the thought is always in the back of my head that something could happen to my child.  Knowing how fragile life is both a blessing and a curse.  I chose to enjoy each and every day to the best of my ability.  I look for the positives and I celebrate the small joys in life.  Every night before I go to bed, I tuck Isabella in and kiss her once more.  Then I thank God for the blessing of another day and I pray that tomorrow I will be given another one.

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

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.