Tag Archives: #Mommyofamiracle

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.

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.

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.

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.

Mommy of a Miracle – What I wish I knew

kristine & isabellaWhen Isabella was discharged from inpatient rehab we left on such a high.  I was thinking that the worst was behind us.  I was told that in six weeks life would be back to “normal”.  While I didn’t not fully believe that in six weeks all would be fine, I definitely did not imagine us to be over three years out and still so far away from the life we once had.  I didn’t fully understand that this journey was really just beginning.  Here are the top five things that I wish I knew when we left inpatient rehab:

1.)    This journey of recovering from a brain injury is just that, a journey.  It is not a race or a marathon because that implies that there is an end in sight.  With brain injury there isn’t a finish line where you can cheer that you made it to the end.  Brain injuries are lifelong injuries that forever change not only the survivor but it will also change you.

2.)    Many of us are told that recovering from a brain injury only happens in the first 12 months.  We are told that after 12 months you are stuck in that state for life.  This is absolutely false.  Isabella made the most recovery AFTER the 12 month mark.  There is no time limit or expiration on how long any survivor can improve.

3.)    There are so many great alternative treatments to look into.  I will admit that I never believed in alternative medicine.   That was until Hyperbaric Oxygen Treatment changed Isabella’s life.   It greatly improved her sleep, seizures, quality of life and much more.  Keep an open mind and know that you have options outside of traditional medicine.

4.)    It is ok to change medical providers and therapists.  As you go along this journey, you may find that your goals and those of a medical provider/therapist may not match.  Changing care is absolutely ok to do.  I actually encourage you to change therapists from time to time.  I have found that when Isabella plateau’s with one therapist that changing can make all the difference.

5.)    Find a support group that can help YOU through this journey.  In the beginning family and friends promise to stand by you.  As time goes on they will slowly fall to the wayside.  While our life has come to a screeching halt other’s lives move on and we lose that common ground.  Having support from a group of other’s on this journey is invaluable.

There are times on this journey where you can feel so alone.  Know that you are not alone.  There are many others just like you on this same journey.  To help those just beginning, what would you add to my list?

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 – Regression

kristine & isabellaIsabella’s brain injury journey began over three years ago. I have learned that recovering from a brain injury is not the steady climb forward as often found with other illness or injury.  This journey is a series of really high highs and really low lows.  In our experience it is filled with one step forward and three steps back.  Regression is the hardest part.

Regression often times has a trigger.  That trigger could be a sudden change in care, medication side effects or an additional stressor such as work or school.  Regression with a known trigger is stressful enough but regression without a known trigger is terrifying.  Isabella has been regressing for quite some time.  Initially, the regression was triggered by the start of public school.  Isabella has since begun home school; however, she never recovered from that initial set back.  Our silver lining is how well Isabella has done academically since the start of home school.  That said, every single part of Isabella is starting to be affected by this regression; physically, emotionally, behaviorally, cognitively, psychiatrically, etc.  Isabella’s migraines and headaches have dramatically increased to every single day.  Her tics and anxiety have also increased significantly.  The regression continues.  It really accelerated once HyperBaric Oxygen Treatment stopped. HyperBaric Oxygen Treatment is the medical use of oxygen in a pressurized chamber.  I hope that someday Isabella can return to that treatment.

As Isabella’s symptoms worsen and more skills are lost, further medical tests are performed.  With each test result I find myself in a catch 22.  I don’t want a test to reveal anything new is wrong and yet not having answers on how to stop this regression is terrifying.  I think about the parents I know whose child with a brain injury regressed (due to varying reasons) and their child still hasn’t regained what they lost.  My biggest fear is losing the Isabella that I do have.  I have recently started taking some video of Isabella laughing and talking just so I have it.  It is devastating to think that without answers anything is possible, will she continue to regress and eventually stop talking or laughing?  Will she lose her physical ability to walk?  Will she….?  At this point, I have more questions than I do answers.

The other day, Isabella fell asleep in the car right before we got home.  I decided to sit in the car and let her sleep for a bit.   As I sat there watching Isabella sleep so peacefully, I just started crying.  I am not a crier and yet here I was crying my eyes out.   As a parent to a child with a brain injury, this journey has been one of the most rewarding yet most devastating experiences I have ever had.  It is heart breaking and gut wrenching watching your child make progress only to regress without reason.  Isabella has worked so hard to get where she is and to watch that slip away is devastating.  I am her Mommy.  I am supposed to be able to make it better and I can’t.

As I wait for an MRI, I pray not for a specific outcome but instead I pray that somehow some way things work out so that we can best help Isabella.  In the meantime, I continue to cherish every laugh and every smile.   When I see glimpses of my Isabella, she reminds me that she is in there and she is fighting like hell to get out.  That helps me fight like hell for her.

“Nobody said it’d be easy they just promised it would be worth it” Anonymous

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 – Tips for Successful Testing and Procedures

kristine & isabellaAs a parent to a child with a brain injury, medical testing and procedures are a well known part of life.  Whether it is an EEG, MRI, EKG, LP or something else, I have found that with Isabella planning ahead is essential.  Isabella has had an especially hard time with EEGs.  An EEG is a test that measures and records the electrical activity of your brain. She had many EEGs the first year post Acquired Brain Injury (ABI) and they were very traumatic for her.  Isabella still has the scars and bald spots from EEGs three years ago.  Isabella has had more EEGs than I care to count; I have learned how to help make them less traumatic and more successful.  The more prepared she is (and I am) the better it goes.  Below are some of the things that I did to help Isabella with her last EEG:

1.)    Social Stories are written to describe a specific situation or circumstance.  They are a page long and use familiar graphics and language.  Isabella does better when she knows the details.  The EEG social story included where we were going, what would happen and how long the “stickies” would be on for.  We reviewed it for several days prior to the appointment.  Social stories can help alleviate some anxiety.

2.)    Positive Reinforcement is acknowledging and praising the good behavior.  Whenever Isabella has an EEG I make her an “Isabella SuperStar Chart”.  This chart is something that I make on poster board (size depending on length of EEG) and it is filled with words of encouragement such as “Fantastic Work”, “Amazing”, “Great Job” etc.  It is decorated with stickers and colored all pretty.  I set the chart up so that every 2 boxes is a heart which symbolizes “Isabella’s Choice”.  That means that Isabella can choose the movie to watch or the game to be played.  Every 4 boxes is a star which symbolizes a prize.  The prizes are not anything extravagant more like crafts (which she loves), stampers, books, puzzles etc.  The day is focused on keeping Isabella occupied and happy.  Isabella loves her chart and it really helps to keep her safe.

3.)    Role Play the specific situation.  For several days before Isabella’s EEG we practice how the appointment will go.   We practice waiting for our name to be called.  Then we pretend to go into the room and sit down.  I part her hair like they would and I used a rounded crochet needle to “mark” her head (they use a red colored pencil).  After that we put the “stickies” on.   We talk about how we have to be safe when we come home with the “stickies”.  I explain that the “stickies” help us know more about her smart brain.  We talk about the “Isabella SuperStar Chart” and how much fun it will be.  I practice how the “stickies” will come off with warm water and her hair will be wiped down.  I let Isabella practice on me and I practice on her.

4.)    Ask for a Child Life Specialist.  Most hospitals have Child Life Specialists on staff.  They help distract your child while they are going through a procedure or other stress inducer.  Not all departments have them though.  The EEG department did not have Child Life.  However, I spoke with our Child Life from another department and she was able to help support Isabella in a similar manner.  Isabella knew as soon as we walked into the room that her “friend” (Child Life) had left her a surprise for when she was all done.  This helped Isabella greatly as it kept things consistent.  If a department does not have Child Life Specialist bring another person (someone your child is very familiar and comfortable with) to help distract by doing a special highly preferred activity such as watching a favorite movie, playing on an Ipad etc.

5.)    Request a specific person.  If you have a good experience with a provider, tech or nurse, ask for them.  The last person we had for Isabella’s EEG was so fantastic that we requested him again this past time.  We had to wait for him but he was worth the wait.  He had a movie player all ready to go.  He thought outside the box and that helped make it successful.

The key to these stressful appointments is to be prepared and do whatever is humanly possible to make it a success.  For Isabella, EEGs have been horrific.  However this last experience went so well that I am hopeful that the next one maybe a little less traumatic. Planning ahead is so important.  What do you do to help your loved one get through medical testing and procedures?

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: 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.

Lessons learned from Isabella

kristine & isabella
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. 

Sunday, February 23rd was Isabella’s 8th birthday.   Recently it occurred to me that when Isabella turned 8, she will have had a brain injury almost half of her life.  Another year older, we are still fighting to relearn everything and regain a sense of “normalcy”.  Let’s be honest. Brain injuries suck.  They rob you and your child of the simple joys in life like birthdays.  Isabella had been waiting for her birthday for a month.  We had the day planned for the three of us: her, myself and my fiancée.  We planned on presents, cake, decorations, piñata and her favorite meals.  What I didn’t take into account is that no matter how much you plan, brain injuries are unpredictable.  The after effects of a brain injury are long lasting and do not discriminate or care that something like a birthday is suppose to be happy.  Don’t get me wrong we had some great moments but as the day progressed things quickly went downhill.  It was heartbreaking to watch Isabella literally fall apart because something like a birthday was too overwhelming and too much.  She kicked, screamed, cried, hit and went hysterical until she would finally let me hold her.  My heart aches for Isabella.  I am choosing to hold on to the good moments that we had on her birthday and reflect on all that Isabella has taught me.

When Isabella was born I had no idea that this little person would become the bravest, strongest, most amazing human being that I would ever meet.  I had no idea that she would endure more in her short life then most in their entire lifetime.  You see Isabella’s brain injury has robbed her of many things in life, things that will never be ok ever again.  What Isabella’s brain injury didn’t rob was that will to fight, her unrelenting determination, her strength, her endurance, and the ability to change and amaze those around her.

Isabella has taught me heroes come in all shapes, sizes, genders and ages.  Isabella is my hero.  She has spent the last 3 + years fighting to regain her life and learn everything all over again.  Isabella lives in a scary world filled with anxiety, hallucinations, inability to express herself, loss of control over her body and mind.  Yet she tries so hard every single day.  To live in a world like Isabella’s and still have good moments that is bravery.  That is strength and endurance.

Isabella has given me the opportunity to appreciate the small things that we often take for granted.  We stop and smell the flowers.  She and I watch the sunset knowing Nana in heaven is making it beautiful for us.  We take the time to laugh, hug and just enjoy each other.  Isabella has slowed me down and made me see things that for years I never even noticed.  Life takes on a greater appreciation that most will never know unless faced with the same uncertainty of possibly losing it all.

I was already a determined person, seeing Isabella’s determination only makes me fight that much harder for her.  Isabella spent a day learning to sit up only to fall back over and then do it again.  I have watched her attempt to kick a soccer ball to lose her balance and fall.  Yet Isabella did it over and over again until she was able to kick the ball.  I have watched Isabella struggle to find the right words to read a sentence in a book.  Sometimes it takes 3 or 4 tries to get her brain to say the right word but she sticks with it until she reads the sentence correctly.  Isabella knows what she wants to say and she is determined to figure it out.  That determination is inspiring.

My wish for Isabella in her 8th year is that she will start seeing how truly amazing and awe inspiring she is.  I want Isabella to know that it is ok to be scared; doing it anyway makes you brave.  I want her to know that strength isn’t only measured with how physically strong you are but also by the things in life that are suppose to stop you and yet you overcome.  I want Isabella to know how very proud of her I am.  I love Isabella more with each day; her brain injury makes me love her even more.

Brain injuries suck.  They are gut wrenching to watch.  As a parent it can be devastating to see your child struggle everyday with things that once were easy and done without second thought.  I encourage you to find the lessons that survivors offer to everyone they know.  Cherish the moments and recognize that in an instant it can all change.

“Most people never get to meet their hero. I was lucky enough to give birth to mine.”