Tag Archives: mommy of a miracle

Grieving – Mommy of a Miracle

As a parent to a child with a brain injury, I can tell you that this journey is an emotional roller coaster from hell.  The truth is we grieve and most people on the outside just don’t get it because after all our child is still here.  This is my attempt to explain something that is hard to “get” unless you live it.

When someone you are close to passes away, there is a wake followed by a funeral and then the grieving cycle begins.  Generally the grieving cycle consists of shock and denial, followed by anger, then sadness, bargaining and finally acceptance.  When your child suffers a brain injury most  times you have a child who looks like they did before but they are an altogether different child.  Almost like a stranger was placed in their physical body.  We not only go through the grief cycle but are often times left with what has been called chronic sorrow.  Chronic sorrow is defined as the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions*.

Shock and denial is the first step of grieving.  According to the Head Injury Center every 5 minutes in the United States a brain injury leaves someone permanently disabled.  When that brain injury happens to your child, shock sets in fast.  I remember looking at Isabella hooked up to all these machines, tubes and IVs everywhere, thinking is this really happening or is this a horrible nightmare that I will wake up from? I mean after all Isabella was fine all Thanksgiving Day, how did things go so terribly wrong so fast?  I was physically going through the motions but I was in complete shock.  There are chunks of time that I just don’t remember.  Denial is something that I never experienced and for that I am eternally grateful.  I think the fact that I was a single parent helped me a lot.  I couldn’t fall apart or deny what was happening because I was the one having to make major decisions that could lead to life or death.

Anger is the second step of grieving. For me anger is such a foreign emotion.  I am not an angry person.  I can only remember two times in my life where I was angry.  Yes I get mad or upset like everyone else but anger well that was not an emotion I was used to.  I was angry that my child was robbed of the life she was supposed to have.  Isabella was a 4.5 year old little girl who had the world waiting for her.  She was this happy-go-lucky, social, smart little girl who met friends everywhere we went.  She was in preschool and she was playing on a soccer team – the one thing she had talked about since for as long as I can remember.  Yet my baby girl was hooked up to machines galore and fighting for her life.  I was angry and I have my moments were I still am.  It is ok to have those moments as long as you are able to move forward.

Sadness is the third step of grieving.  It is when the reality of your child having a brain injury actually starts to set in.  I was sad that the child I had for 4.5 years was gone.  Isabella looked exactly the same yet was replaced by what seemed to be a stranger.  I was sad that Isabella had to go through and endure everything from therapy to tests to doctor’s appointments etc.  I was sad that things Isabella had mastered before her ABI were now so challenging or gone such as walking, writing, coloring, sitting up etc.  Watching Isabella struggle with not only the heartache of not being able to do what she once did but also seeing the  frustration she felt because she knew she could once do it.  I was sad and I still have my moments were I am very sad.  I allow myself those moments because I am human and I know that I will keep moving forward.

Bargaining is the fourth step of grieving.  It is when you try to find the reason or explanation as to why.  It is asking “what if”, “should’ve, could’ve, would’ve” etc.  Often times bargaining is people thinking that they are paying for past mistakes.  I am fortunate that this is not something I went through.  Quite frankly I believe that sometimes bad things just happen.  There is not a rhyme or reason, it just is what it is.  I knew that I did everything that I possibly could to save my child.

Acceptance is the final step of grieving.  It occurs when you have come to the realization that what was is no longer and you start your new normal.  Acceptance doesn’t mean that what happened is ok.  It quite simply means that you are living in reality and have an understanding that life is different.  I will never be ok with what happened to Isabella.  She was robbed of her life.  I have come to the realization that the path Isabella was on prior to her ABI will not be.  However that doesn’t mean that Isabella can’t have a life.  Will it be the same as she was set to prior, no, probably not but at the end of the day, all I want is for Isabella to be happy and live to the best of their ability.  Acceptance doesn’t mean that all is ok it just helps you to keep moving forward.

Chronic sorrow is how best to explain life with a child who has a brain injury.  You are repeatedly faced with a child who in most cases looks exactly like their old self.  However, they are completely different. I miss the Isabella I had for 4.5 years. She was so happy-go-lucky with not a care in the world.  When I have those small glimmers of my old Isabella (however brief and far between they maybe) I take advantage of it.  What I have found is that I love my new Isabella more than I ever loved the prior one.  It is hard to imagine that possible.  The Isabella I have now has become my hero.  I admire her courage to face each day no matter how difficult it maybe.  I admire her determination and I hope she never loses that fight.

“The only people who think there’s a time limit for grief, have never lost a piece of their heart.  Take all the time you need.”  unknown

*taken from www.chronicsorrow.org

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.

Christmas Changed

Before Isabella’s Acquired Brain Injury (ABI), Christmas was a time filled with decorating and shopping.  We would listen to and sing Christmas music; Isabella even had her own version of a few songs.  We would stay up watching Christmas movies and go out at night to enjoy the Christmas lights.   Our weekends were filled with Christmas parties and other gatherings.  Christmas morning was the chaotic rush to open gifts followed by visits with family etc.  Isabella loved Santa as long as she didn’t have to get close to him.

Since Isabella’s ABI, Christmas is very different.  It is more thought out and planned.  Everything is structured and organized.  During the holiday season, life is kept as close to regular as possible.  Isabella has significant memory deficits so I have spent the last few years, reintroducing Christmas to her.  As each year passes, Isabella “gets” Christmas a little bit more.  Our Christmas is no longer that crazy, chaotic time that it once was.  We have had to make some major changes to help Isabella during the holidays.  Some of these changes include:

1.)    We stick to our schedule.  With the excitement of the holiday it is very easy to get off track.  Isabella needs structure and consistency.  We have a visual schedule on the wall with all of our appointments and therapies.  Bedtime and meals are the same every day.  All Christmas activities are scheduled.  This includes putting up our Christmas tree, decorating the windows etc.  I  DVR Christmas movies so Isabella can enjoy them at an hour that is reasonable for her.  Spontaneous nights of light seeing, staying up late to watch Christmas movies and such are a thing of the past. 

2.)    Social stories are essential in preparing Isabella for Christmas.  Social stories are written to describe a particular event.  They are very detailed in what will happen, how it will happen and when.  Isabella doesn’t do well with the unknown or unstructured activities.  Those carefree Christmas mornings have given way to a very thought out and planned one.

3.)    Less really is more.  Isabella gets overwhelmed easily.  Our Christmas decorating is limited to a Christmas tree.  This year Isabella wanted to put decorations on the windows so we got the window clings.  They are easily removed or covered by curtains.  On Christmas morning, presents are opened in shifts.  Isabella will open one, wrapping paper goes in the trash and the gift goes into my bedroom (to eliminate the sensory overload).  Then Isabella can open another gift. When everything is opened then they all get put away.  Nothing is left out under the tree.  Even on Christmas the rule is still only one toy out at a time. 

4.)    Santa had to be adjusted.  Post ABI, I was conflicted on how to handle Santa.  Once Isabella mentioned Santa and she had an idea on who he was I decided to go with it.  Isabella freaked out when she heard that Santa comes down a chimney and leaves presents under our Christmas tree.  For a child who is filled with anxiety and hallucinations the thought of a “stranger” coming into the house terrified her.  Once Isabella was able to verbalize that, Santa quickly became the person who “poofs” the presents into our house. 

5.)    Parties, holiday gatherings and family visits are on hold.  Isabella is struggling with her day to day life.  She has no ability to cope or adapt.  These are not things that Isabella can handle.  I miss my family and friends but I am not willing to sacrifice Isabella in the process.  I am not going to set her up to fail and cause her to regress further.  Since Isabella’s ABI, family and friends either mail gifts or drop them off when she is in bed asleep.  This also allows me to visit with them while she is sleeping. 

6.)    Christmas shopping is done entirely online.  At this time of year, the stores are absolute chaos.  For a person with a brain injury who already has sensory overload, stores are a disaster waiting to happen.  To eliminate this, we shop online.  No babies crying, no perfume to smell, no loud music, no crowds, no long lines, no people talking too loud, no blinking Christmas lights etc. 

While Christmas maybe very different from how it once was we make the best of what we do have.  The true meaning of Christmas is what is important.  The twinkle in her eyes as she talks about Santa, the magic in watching her decorate the Christmas tree and the excitement is what really matters.  It is not about whom you are with, how many presents there are, what parties you attended, it is about enjoying the simple moments.  Isabella is my Christmas miracle.  I am truly blessed to have another Christmas with her.

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. 

Anniversaries: To Celebrate or Not to Celebrate?

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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. 

On November 25th, 2010, it was a regular Thanksgiving.  We visited with our family and friends.  Isabella and I planned our Thanksgiving weekend.  We were so excited to have 4 days off and we couldn’t wait to decorate for Christmas.  My best friend lived next door so we stopped by before going to our home.  We arrived at 7pm.  By 7:10pm Isabella was screaming that her head hurt, her throat burned and seconds later the vomiting started.  I brought her home, cleaned her up and laid her down beside me.  By 10:35pm Isabella was confused, disoriented, dehydrated and she said “I just want to go home Mommy”- we were home.  I knew at that moment that something was not right.  I called her pediatrician and we were off to the emergency room.  I had to pull over several times to help her because she was vomiting so much.  We walked into the emergency room at 11:58pm.  I did not know that our lives were about to change forever.  That is how our journey began.

It was eventually figured out that Isabella had sudden acute encephalitis.  Words cannot express the horror that I saw happen to my baby.  I held her in my arms at one point and she was stiff as a board.  Her body was distorted, she made these awful sounds (that still haunt me) and I remember thinking, God she doesn’t deserve this.  I remember pleading to God that this is not how I wanted my baby to live.  I watched Isabella crash before my eyes.    There were tubes going everywhere, she was hooked up to 19 machines and a ventilator.  I was told that I needed to prepare myself that I probably wouldn’t be walking out the door with Isabella.  I was told that Isabella was gravely ill and I needed to understand she wasn’t going to make it.  I couldn’t even process what was happening.  There are sections of the first few days that I don’t even remember.  I want to remember them but I am told that it’s my brain blocking it out because it’s so traumatic.  It could also be that I didn’t sleep for 74 hours and I eventually collapsed outside the MRI.  How could I sleep knowing that I only had a precious few hours with Isabella?  I didn’t want to waste one single second sleeping.

The days went on and Isabella was still fighting.  Isabella eventually woke up and it was the happiest day of my entire life.  See the picture below.  I was told that Isabella is that one in a million to survive what she did.  Prayers, our special angels and a miracle saved my baby.  Little did I know that the next few weeks, months and years would never ever be the same.  We were now on a different journey, one that was unknown and at times scary.

Everything in our life is defined by that one day “before Isabella got sick” and “since Isabella got sick”.  It is that one moment where everything changed.  That first anniversary was a sad one.  It was hard reliving every single moment over again.  Isabella and I snuggled, watched movies and played.  I decided that I would allow myself that first year to be sad.  After that I couldn’t anymore.  I decided that instead we would celebrate Isabella.  Isabella knows that she has a “boo-boo” in her brain.  I have been very honest (in an age/cognitively appropriate way) about what has happened.

As the second year approached I planned “Celebrate Isabella Day”.  She quickly changed the name to “Mommy and Isabella Day”.  I asked her therapists, providers and others that love her to send her a card (to be opened on 11/25) with well wishes and words of encouragement.  Isabella and I planned the day out.  Crafts, movies, snuggling, make a cake and have balloons with party hats.  Anyone that knows Isabella knows how important party hats are to her.  We sang “Happy Mommy and Isabella Day” and we made wishes on the candles.  We also opened the cards that were sent.  Isabella looks forward to this day every year now.

You are probably wondering what most people do, why celebrate such an awful day?  I choose to celebrate this day because I have to.  This day forever changed our lives.  Instead of looking at it as the day I lost my old Isabella, I choose to look at it as the day my Isabella was born again.  She is a miracle and she amazes me every day.  Isabella is my hero and I want to celebrate all that she has accomplished.  After all this was a child who wasn’t supposed to make it through the night never mind reach 3 years post Acquired Brain Injury (ABI).  When I look back on the last three years, we have had many highs and lows.  Isabella’s strength, bravery, determination, courage and fight have gotten us through this.  I don’t want to mourn who she was and what was lost, I want to celebrate the amazing person she is.

With each anniversary we have the power to choose how that day will be remembered.  We can long for what once was and be filled with sadness or we can chose to celebrate the survivor that is here with us.  I chose to celebrate my amazing survivor Isabella.  Happy Mommy and Isabella Day!

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

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.

Mommy of a Miracle: I learn something new every day

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. 

I have learned a lot in the past month about the public school system.  I learned that the public school system is like a wooden-shape puzzle.  Most pieces fit in the puzzle.  Some pieces require a little more effort to fit in than others.  With every puzzle there is always that one piece that no matter how hard you try to shove it into the mold, it just does not fit.  Isabella is that unique puzzle piece that does not fit.

As I mentioned in my previous blog about Isabella’s first day of school, I moved to our current town specifically for its school system.  It ranked very well on the state report card.  The special education program was known to be fantastic.  I had such high hopes and I honestly never expected it not to work out.  The first week of school was horrible.  Fighting, kicking, screaming, biting, panic attacks etc., just to walk out the door of our home.  Never mind the car ride, the 15 minutes of school and then the aftermath which consumed the rest of the day.  The second week of school is when the stress, anxiety, aggression and panic attacks took on a whole new level.  It was affecting her sleep, therapies, treatments and it became medically necessary for Isabella to have a home-based program.  School is not supposed to be this traumatic.  I quickly realized that just because a school system has a great ranking and a fantastic special needs program, that does not mean that it is the right or appropriate fit for Isabella.

I was left with a few options:

  1. In-home tutoring:  I was hesitant to go this route as we had already done that (with little success) in another town.  Isabella needs more than in-home tutoring can offer.  Also, with in-home tutoring the expectation is that the child will go back into the public school. I already knew that was not working.
  2. In-home tutoring until out of district placement could occur: I started calling and researching a variety of specialized schools.  The problem I ran into is that most programs were for emotional/behavioral conditions or cognitive conditions.  Isabella doesn’t fit into any one category because she has a brain injury.  While she has emotional/behavioral conditions, they are a result of a brain injury so therefore can’t be treated the same.  The few schools that do specialize in brain injury either do not accept Isabella’s age group or they accept her age group but currently do not have any attending.
  3. Home school: Several providers had mentioned home schooling to me.  I knew nothing about it.  I decided to research the laws, potential curricula, talked with other parents who home school and to find out as much as I possibly could.

I spent many stressful days and sleepless nights trying to figure out what to do.  I felt like I was between a rock and a hard place with not many good options.  The more I researched home school, the more I realized this was the best option for Isabella.  The laws, the policies, the application, finding and submitting a curriculum–it all overwhelmed me but I knew that she would thrive in a home school program.  I knew that I could teach Isabella because I would go to the end of the world for her if I had to.  After all, I know her better than anyone.

I started looking into therapeutic playgroups to get Isabella the socialization she needs.  I was referred to a facility that would offer Isabella the one-on-one that she requires.  They will help Isabella cope with her anxiety, teach her social skills and eventually be able to interact with another peer in a very structured environment.

I submitted my home school plan which included an online curriculum coupled with a few other programs to supplement it. Isabella already has existing outpatient therapies, in-home behavioral and soon a therapeutic playgroup.  I received an approval shortly after submitting.

I can honestly say this is the right decision for us.  Isabella loves “school at home.”  That twinkle in her eyes that I haven’t seen in years–that twinkle is there.  The excitement Isabella has every morning when she asks what we are going to learn today–that is how it is suppose to be.  Learning is not supposed to cause panic attacks, regression and aggression.  The public school experience has caused Isabella to regress so much.  It is going to take some time and a lot of work to get Isabella back on track to where she was prior to the start of the public school.  I know together we can get Isabella back to where she was and moving in the right direction.

I am not saying public schools are bad.  I live in a town that has a great public school.  I am saying that not every child fits into that cookie cutter mold.  It wasn’t appropriate for Isabella at this time.  Will I home school forever?  Honestly, I have no idea.  What I do know is that this is the right choice for us right now.  One day at a time.

“Two roads diverged in a wood, and I- I took the one less traveled by, And that has made all the difference.” Robert Frost

Mommy of a Miracle: What is Sensory Overload?

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. Today’s post talks about adjusting your surrounding to avoid sensory overload.

Imagine you are at a concert.  The music is so loud that you can’t think straight.  There are strobe lights and spotlights shining on you.  Everything seems “busy” with people, posters and signs.  The smell of perfume is so strong you can almost taste it.  Your clothes feel like they are covered in tags and you feel uncomfortable in your own skin.  You cover your ears, crawl up in a fetal position and scream for it to end… only it doesn’t.  This is life with sensory overload.  Sensory overload is common in survivors of brain injury.  Sensory overload is the brain’s inability to regulate and filter out the surroundings.

Since Isabella’s Acquired Brain Injury (ABI), she has suffered from sensory overload.  Simply things that we all take for granted, such as going into a store, are extremely stressful for Isabella.  The lights are too bright, the music is too loud, the aisles are visually overwhelming, smells of perfume and food, multiple people talking at any given time, the toys that go off as you walk by etc.  Isabella literally shuts down and by that I mean crying, screaming, shaking, hitting, kicking, biting, trying to run out of the store etc.  To the average person Isabella appears to be having a tantrum.  The reality is that her brain cannot filter out everything that it is experiencing.  This is sensory overload.

Below are some ways I have helped Isabella with sensory overload in our home:

1.)  De-clutter. 

We all have clutter.  It is a fact of life.  With that said, clutter is visually overstimulating to a person with sensory overload.  When Isabella first came home from the hospital, we had too many things on the walls.  Her toys were mostly out even though they were organized in bins. To help Isabella, we put as much as we could into a closet.  Pictures and photos were taken down and/or limited to just a select few.  Less was definitely more for her.

2.)  Adjust the noise. 

White noise sound machines and “earmuffs” (noise reduction head phones) have been key with helping Isabella.  I joke with Isabella that she has “bionic ears.”  She hears every single little noise whether it is a far off weed whacker, a drop of water, strong wind or the tiniest thing falling to the floor.  Most of us don’t even notice half of what Isabella hears.  Her brain is unable to filter it out.  The white noise sound machine helps drown out some of it.  The opposite of that is that Isabella also hears things much louder than most.  The vacuum, blender, electric can opener or alarm clock all send Isabella running, screaming and covering her ears.  To help lessen the volume, we got her “earmuffs” from a local hardware store.  Isabella wears these when I have to use a loud appliance.  They have helped her deal with thunder and lightning as well.  Isabella has even started wearing them to bed so she falls asleep easier.Stress

3.)  Adapt the lighting.

Isabella is afraid of the dark but also can’t tolerate anything too bright.  To help with this we switched to softer light bulbs.  We also use light-blocking curtains and shades, which allows us to adjust how much sunlight comes in.  Isabella always has sunglasses and she uses them whenever something is too bright.

4.)  Decrease unnecessary odors.

Most smells are very offensive to Isabella because they are so strong.  I often joke that her sense of smell is stronger than any pregnant woman I have ever met.  I stopped wearing any kind of body spray because it was always too overpowering for Isabella even if I could barely smell it.  In the event we have to use candles, they are always unscented.  Ironically, Isabella has identified vanilla as a scent she likes.  Isabella has a little vanilla tea light candle that she carries around with her.  When odors are overwhelming, Isabella will take deep breathes with the vanilla scented candle.  This has helped her a lot.  When cooking or baking, I have our windows open, fan going and an air purifier running to help reduce any odor.  Even yummy things like cookies can become offensive when the smell is so strong.

5.)  Choose clothing carefully.

Isabella can only tolerate the least restrictive clothing in the most comfortable material possible. Isabella’s clothes are all tag-less. She will only wear cotton stretch pants, yoga pants or sweat pants.  The feeling of jeans or khakis is too rough on her skin. Isabella will say they “hurt.” The gentle soft fluffy material found in most sweatshirts aggravates her as well so shirts are always worn under them.  Isabella prefers clothes with minimal print or she says they are too “busy.”

Sensory overload symptoms are as unique as a brain injury survivor.  Some survivors are more sensitive than others.  While I can control most things in our home, I can’t change every environment for Isabella.  I have strategies in place to help her at home.   I work with Isabella on applying these strategies out in the world.   The reality is that at any given moment Isabella can have complete sensory overload.  When this happens, I just pray that the world is kind and that others do not make her feel worse then she already does.  Can you imagine living in a world that sounded like a loud concert–one that had strobe lights and spot lights shining on you; a world where everything seemed too “busy,” smelled really badly or made you feel uncomfortable in your own skin?  I can’t.  This is life for a person who suffers from sensory overload.

#BrainInjuryAffects Us All

braininjuryaffectsfbgraphic

Every 18.5 seconds, someone in the U.S. suffers a brain injury. Have you suffered a brain injury or do you know someone who has? Whether you are a survivor of brain injury, family member, friend, healthcare provider, caregiver, neighbor or professional who works with the brain injury population, chances are you have been affected by brain injury in some way.

To raise awareness of the incidence and impact of brain injury in Massachusetts, BIA-MA launched a unique social media and advocacy campaign called “#BrainInjuryAffects.” Earlier this year during Brain Injury Awareness Month in March, BIA-MA featured stories and photos of those affected by brain injury through social media outlets, including Facebook, Twitter and Pinterest. The stories and photos were also used to help BIA-MA advocate for increased funding for services survivors and their family members need. It worked! The fiscal 2014 budget for Massachusetts allocates 100% of the fines collected from DUI and OUI to go into the Head Injury Treatment Services Trust Fund, which in turn funds community-based services for brain injury survivors. However, our work is never done. We are never finished advocating for survivors and their families. It’s in our mission, it’s one of our four pillars: Prevention, Education, Advocacy and Support.

Therefore, we are continuing this campaign, and we need your help. We need your stories. There are 64,000 new traumatic brain injuries recorded in Massachusetts annually. This doesn’t account for acquired brain injuries such as stroke, aneurysm, brain tumor, anoxia, and birth-related brain injuries. Therefore, the total is quite a bit higher. The odds are that you know someone who has suffered from a brain injury. The “life after brain injury” is different than before, and sometimes the biggest challenge isn’t that you’ve survived; it’s that you need to recover and learn to adapt to a “new normal.”

Your participation is encouraged. See some of our #BrainInjuryAffects stories here.

How do you participate? If you have been affected by brain injury, we are asking you to photograph yourself holding up the sign you will find on www.biama.org. The sign should describe your relationship to brain injury in one word (e.g., survivor, mother, friend, sister, psychologist, provider, caregiver). You can submit your photo electronically by attaching it to the form on our website, sending it to socialmedia@biama.org or posting it to our Facebook page or on Twitter using #BrainInjuryAffects in your Tweet.

We are also asking the general public to tell us how brain injury affects them by going to our website www.biama.org and filling out the short form, which asks how your life has been impacted by brain injury and what services you or other survivors need to have a better quality of life.

Stories and photos can also be mailed to:

Marketing and Communications, BIA-MA, 30 Lyman Street, Ste. 10, Westborough, MA 01581

Your input will aid in advocacy efforts to gain services and support for survivors of brain injury. Throughout the budget season, BIA-MA will use various outlets, including e-mails, Facebook and Twitter, to send language the general public should use when communicating with legislators. The current script can be downloaded on www.biama.org/braininjuryaffects.html

If brain injury has affected you or someone you know, you can make a difference by getting involved in the campaign, telling your story today and calling your legislator. Interact with the campaign on Twitter by using #BrainInjuryAffects and on Facebook by going to http://www.facebook.com/BrainInjuryMA.

Mommy of a Miracle: Second Chance

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

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

Today’s blog post is part of a bi-monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares her greatest fears and joys of what she calls hers and Isabella’s “Second Chance.” To contact Kristin, tweet @KristinOlliney.

The day that Isabella came down with sudden acute encephalitis became the defining moment when our lives were forever altered. Prior to that day, I spent my entire life going through the motions and living as best I knew how.  Since Isabella’s ABI (Acquired Brain Injury), life is defined as “before she got sick” and “since she got sick.”  That one moment changed everything about us.   My world as I knew it came crashing down and I came so close to losing it all—Isabella is my life.  It is a miracle that she survived.  This second chance we were given gave me a new appreciation of life—one that most don’t understand unless they have been through something similar.

When Isabella was born, she didn’t cry like most babies.  Isabella wasn’t breathing and she was quickly whisked out of the room before I got to hold her.  Isabella was put under an oxygen hood and I didn’t get to meet her until the next day.  I had toxemia and I couldn’t get in the wheelchair to go down to see her.  I just physically couldn’t get up.  To this day I still beat myself up about it.  I think I should have tried harder or I should have done something different.  Parental guilt (“did I do enough, I should have done more”) started right from the beginning.  As my baby became a toddler and then a “big girl” she met all of her milestones.  Isabella often met them early.  Hitting milestones for the first time was exciting but also expected.  The first smile, the belly laugh, hearing “Momma,” sitting, standing, walking and eventually writing her name, starting school, playing soccer, riding a bike, etc., were all great moments.  I enjoyed the moments the way most mothers do.

As Isabella lay in a coma, fighting to survive, I thought about our life.  I wondered if she knew how much I loved her—did I tell her enough? Did I kiss and hug her enough?  Did I make her happy in life?  I couldn’t even allow myself to accept that Isabella wasn’t supposed to make it.  I couldn’t wrap my head around walking out of the hospital without her.  After several days in a coma Isabella started to breathe over the vent.  We decided that it was time to take Isabella off of the vent and see if she could breathe on her own.  As the vent was pulled out I heard Isabella’s little voice crying out, “Mommy, Mommy, Mommy,” and it was like she was born again.

Isabella was still in a coma but she was able to cry out for me.  I cried tears of joy.  I was able to lay in bed with Isabella and hold her.  I knew from that moment forward that this was a new beginning for us both.  I vowed to never take a single second for granted and to truly appreciate our lives.  When Isabella finally awoke from her coma she was in the state of a newborn, except a newborn could move his or her arms and legs and Isabella couldn’t.  Her fight and determination are like I have never seen before.  In those first days out of the coma, Isabella would lay in my arms trying to gain neck control so she could hold her head up.  When Isabella mastered that, she wanted to sit up in bed.  Every time Isabella tried to sit up she would fall over.  Isabella spent the entire day pushing herself up only to fall back down.  Her determination was such that, by the end of the day, she was sitting up.

Since Isabella’s ABI, she has hit so many milestones again.  She’s learned to stand, walk, run, kick a ball, throw a ball, ride a bike, talk in sentences, write her name, draw, etc.  This time around, milestones have been accomplished through hard work, determination, tears, sweat and a fight to keep on going.  When your child isn’t supposed to make it through the night and yet defies the odds, every milestone is an emotional moment—a happy victory on this journey to recovery.

Knowing firsthand how fragile and uncertain life is can be a blessing and a curse.  It is a blessing because I learned to appreciate the small moments in life that most people don’t know they are even missing out on.  I hug Isabella just a little bit tighter.  I make sure I tell Isabella how amazing she is and how much I love her.  Knowing what I do about the uncertainty in life is also a curse because I learned the hard way that in an instant it can all change and be over.  This knowledge can lead to guilt and fear that I didn’t do enough.  There are days where I wish I did more, played more, cuddled more and enjoyed every moment just a little more.  I try to remind myself that I am human and I can’t be perfect.  I have been given the biggest blessing of all: a second chance.  There will always be days when I wish I could do more.  I thank God every night that I was given another day with Isabella.  Before I close my eyes I pray that I will be blessed with another day tomorrow.

“We can only appreciate the miracle of a sunrise if we have waited in the darkness.”  ~Unknown

Mommy of a Miracle: Back to School!

kristinToday’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares Isabella’s back-to-school experience. To contact Kristin, tweet @KristinOlliney.

Some parents are excited that their children go back to school; some parents are not.  Some kids are thrilled to be back with their friends even if it means homework; some kids are not. There are many parents and children who fall somewhere in between being excited and not so much.

Back to school is generally a time filled with clothes and shoe shopping, picking out the “first day of school” outfit, purchasing school supplies, backpacks and lunchboxes.  Three years ago when Isabella had her “first day of school,” it was for preschool and those were the things that I was happily focusing on. The morning of that first day was filled with pictures, videos and excitement.  When the teachers came out and it was time to go into preschool, Isabella kissed me quick and off she went.  Isabella did amazing.  She loved preschool.  Isabella had lots of friends from all different backgrounds and she was so excited every school day.  Three months into preschool, Isabella suffered from sudden acute encephalitis.  Life as we knew it was forever changed.  She has not physically gone back to school since then due to various medical concerns.

After having little success with the town we lived in, I specifically moved to our current town this spring because of their highly-rated school system.  This particular town has a reputation for having a great special education program.  I want Isabella to have everything that she needs so we relocated to give her the best opportunity to succeed at school.  I have worked with our special education advocate, alongside our medical and behavioral team, to get everything in place for Isabella to start first grade.  Unlike the fun prep work for preschool, the focus has been on Individualized Education Plans (IEPs), a Health Care Plan, a Behavior Support Plan (BSP), Food Allergy Accommodations and Transition Plans.  Below are a little bit about each:

Individualized Education Plan (IEP) has been created by Isabella’s team–both outpatient and in school.  This legally binding document discusses what kind of placement Isabella will be in (sub-separate classroom versus general education classroom).  The IEP has measureable goals, accommodations and other specifics that Isabella needs to help her be successful at school.

Health Care Plan is created by the nurse to medically prepare for Isabella’s multiple health issues while at school.  This includes her seizures, immune deficiency, food allergies, asthma, medication, etc.  There is a brief medical history along with prescription orders and emergency action plans.   This plan helps keep Isabella medically safe while at school.

Behavior Support Plan (BSP) addresses how best to interact with Isabella such as delivering of instructions, visuals to help her learn and understand what is being asked, de-escalation strategies and replacements for her self-injurious behaviors.  This document is key to helping Isabella before she becomes aggressive because she has no regulation over her mood, behavior or emotions, etc.

Food Allergy Accommodations are precautions that are put in place to prevent an allergic reaction.  Isabella has several life threatening allergies to food.  Some of these preventative strategies include hand washing by all who enter the classroom, cleaning of all surfaces, separate eating areas, pre-labeled supplies (that have been checked by me), etc.  This helps Isabella stay safe from her allergens.

Transition Plan is a very detailed schedule of how Isabella will gradually start out (with a very short time) at school.  Then gradually decrease my presence in the classroom (fading me to the hall and then to the office) while increasing her time in school.  The ultimate goal is for Isabella to attend school 3 days per a week for 3 hours per a day.

The past few months have included a lot of thoughtful planning.  We have read social stories about going to school.  Isabella toured the school and she saw her classroom several times.   She had several opportunities to interact with her teacher.  We had “open house” at a special time to set up all of Isabella’s visuals.  We even had a countdown at home anticipating the first day of school.

The first day of school finally came and unfortunately it didn’t go anything like I had imaged.  Isabella was adamant that she was not going to school.  She screamed, cried and fought when it came time to get ready.  I used everything that I could to help her physically get dressed.  Once Isabella was dressed I was able to distract her and I got a few pictures.  Once I got pictures taken it was time to get in the car.  I managed to get Isabella into the car kicking, screaming, crying and fighting.  She was hysterical the entire ride to school.  I kept going over how fun and exciting it would be.  I reminded her that it would be her and I together going to first grade.  I talked about how nice her teacher was and how they had super cool toys.  We got to the school and I went into the class with her.  Isabella continued to struggle.  She was aggressive and defiant.  Isabella’s anxiety was off the charts; she was overwhelmed and sensory-overloaded.  We were there for 20 minutes so that it would end positively.  I was hopeful that day two might go better.  Day two was horrible and even worse than day one.

The first-day-of-school milestone was huge because Isabella wasn’t supposed to make it through the night almost three years ago–never mind make it to first grade.  It is a very bittersweet moment.

Brain injuries can make amazing milestones (like going to first grade) heartbreaking and sad.  Transitions, changes, new routines and anything unfamiliar is terrifying for Isabella.  She often lives in her own world and anything outside of that world is traumatic for her.  Most kids come home from their first day so happy and excited about the year to come.  Isabella came home and slept for 3 hours because she was physically, emotionally and cognitively exhausted from the trauma that was her first day of school.  Isabella on her first day of school.Since Isabella and I started on this journey, one thing I have learned is that all I can do is take it one day at a time and even one minute at a time if needed.

This is a picture of my beautiful miracle Isabella on her first day of school.  This picture is just as deceiving as brain injuries are because the struggle is invisible to most. I am telling how Isabella’s first day of school went because this is our life.  It is not always pretty.  I want you to know that if your child has had similar experiences you are not alone.

Mommy of a Miracle: It takes a team to recover

kristin

Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website. To contact Kristin, tweet @KristinOlliney.

Isabella’s journey post acquired brain injury (ABI) has been one filled with twists, turns and bumps along the way.  Having a team that stands by Isabella and I has been invaluable.  I have learned that it takes a variety of people all having the same vision to help move forward in recovery.  Every member of our team (both past and present) has taught me something. Trust is essential and everyone has to have the same vision. Isabella has so much fight and determination. I want a team that is willing to keep pushing her forward. 042

When Isabella first got sick with sudden acute encephalitis, we had a team that was given to us. We didn’t have the option to choose – it was whoever was in the PICU, relevant specialties and rehab.  As we progressed forward in recovery, I started to learn about the team approach. That first year of recovery, I felt like I was being asked to settle for Isabella.  She was over medicated, having difficulty walking and struggling to talk. I was told that this could be as good as it gets and that I needed to accept that. I refused to settle because I knew she could go further with the right team. I researched doctors, hospitals and therapists. I sought out second opinions, I met with rehab facilities and I talked with everyone about my vision for Isabella. I slowly was able to transition her care over to our existing team.

Our team consists of:

  1. 1.       A medical team, including a pediatrician, neurologist and immunologist.  I initially met with our neurologist for a second opinion. I was not looking for a miracle cure because let’s face it, there isn’t one.  However, I knew the life Isabella had of being over medicated, seizure-filled and out of control was not the life she deserved. The neurologist was able to help get Isabella back on track by taking a more conservative approach to medication and listening to what I saw for Isabella.  She was able to help me find an appropriate pediatrician, one that works with complex children like Isabella and referred me to an immunologist who has taken a proactive approach with her. These three members of Isabella’s team are key in keeping her medically stable.
  2. 2.       A therapy team, which consists of a physical therapist, occupational therapist and speech therapist. We have had many therapists and it takes a variety of them to keep Isabella moving forward.  Isabella initially woke up out of her coma unable to even lift her head never mind move her arms and legs.  Isabella could only put two to three words together and she was unable to even hold a crayon. Today, Isabella runs, hops, jumps and even rides a bike.  She has become a lot more verbal and puts together much longer sentences. She also gets herself dressed on most days and is great at drawing. It takes a lot of work in therapy and at home to ensure that she not only continues to gain new skills, but that she retains them as well.
  3. 3.       Our behavioral team, which consists of a behavior consultant and behavior monitor. They were able to help me help Isabella. When they first started, Isabella couldn’t even go outside without a panic attack and she was violent. I was at the end of my rope with what to do because nothing was working. Isabella has no control over her mood, behavior, emotions, etc., so the behavioral team helped me learn all the ways to help her before she escalates.  When Isabella loses control, there isn’t much I can do. However, we have put many tools in place to help us both.  Mine and Isabella’s relationship is so much stronger due to the work we have all put in.
  4. 4.       Our dog therapy team consists of an amazing woman and her little dog Charlie. They just recently moved away, but before that they came to visit every week.  In those visits, there was no brain injury. Isabella was just a little girl who loved “her” Charlie.  They helped Isabella learn how to be gentle, have empathy and Charlie helped Isabella through some tough times, including hospital stays.
  5. 5.       Our educational team consists of a fantastic special education attorney who is helping me navigate the school system. I know what Isabella needs and she knows the law. Together we are working on getting Isabella transitioned to school for the fall. It was important to have an advocate who was willing to help think outside the box because Isabella is so complex.  I am hopeful that together we can get Isabella the appropriate education.

In addition to these team members, we also have the many nurses who help Isabella get through hyperbaric oxygen therapy (HBOT) and child life specialists who help with infusions.  Isabella gets infusions every other week because she also has an immune deficiency. Every team member plays an important role in Isabella’s recovery whether it is keeping her medically stable, moving forward in recovery, getting the appropriate education or being able to get through medical procedures. To get the team we have I had to change doctors, therapists and hospitals. Change is scary, but it is necessary to keep moving forward. I have made major changes in Isabella’s care. These changes have made the difference between her recovery moving forward and standing still.