Category Archives: Mommy of a Miracle

Kristin Olliney’s column Mommy of a Miracle shares mom and caregiver Kristin’s experiences as full-time caretaker to her daughter, brain injury survivor Isabella.

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.

Advertisements

Mommy of a Miracle – Too good to be true

kristine & isabella“Too Good to be True”

March was Brain Injury Awareness month.  While those within the brain injury community are aware of that, most of the country is not.  Cougar Town, which stars Courtney Cox, Busy Phillips and Josh Hopkins is a show that airs on TBS.  In March, Cougar Town aired an episode titled “Too Good to be True”. A member of my support group mentioned that the episode was offensive to brain injury survivors.  I had never seen this show before so I watched this episode to find out more.  The episode was about a man named Tom, who lied to his daughter about his life including that his friend Grayson had a “head injury” from hockey.  As a parent to a child with a brain injury, I was upset by what I saw.  While I understand that television shows are made to entertain and certain material is subject to interpretation, I was offended.  I know Cougar Town and Hollywood’s stance would be that I shouldn’t watch it then.  While I can respect that, I hope together as members of the brain injury community we can help educate others including Hollywood on brain injuries.

During the episode, Grayson, who was supposed to pretend he had a brain injury said “So, Tom told his daughter that a head injury turned me into a simple, good-natured man-child who needs help dressing himself.  That’s humiliating.”  This statement may be true for some brain injury survivors but not for others.  Not all survivors need help dressing.  Some survivors have minimal side effects while some face life altering changes.  For those that do need help getting dressed I am sure that it can be a humiliating experience.  Isabella could dress herself at 4.5 years old prior to her Acquired Brain Injury (ABI).  Now Isabella needs help getting dressed and that makes her feel like a baby.

As the episode of Cougar Town came to an end, the characters all had lunch at Grayson’s pub. Tom’s daughter said and I quote “The food at Gray’s pub even tasted like it was made by someone with a head injury.”  I found this statement to be extremely hurtful and highly offensive.  Many brain injury survivors go on to be productive members of society.  They go on to have careers and families.  I am not sure how anyone could tell whether food was made by a brain injury survivor or not.  Food can be horrible regardless of who makes it !

In my opinion, this episode of Cougar Town perpetuated the stereotypical brain injury survivor as one who is stupid and child like.  Brain injury survivors are some of the strongest, most amazing, most brave and insightful individuals I have ever met. They have survived what should have killed them.   Many brain injury survivors spend the rest of their life trying to regain what had been lost because of their injury.  They are forced to deal with the physical, psychiatric, psychological, emotional and behavioral effects of the damage to their brain.  They are abandoned by a society that sees them as “fine”.  They are isolated by family, friends, co-workers and others who have no idea the extent of the challenges that they live with daily.  This episode just adds to the misperception.  We can change the way Hollywood and the world perceives brain injury by continuing to raise awareness and by educating others.

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.”

Mommy of a Miracle: Why the shame?

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

Brain injury is known to increase the risk of some psychiatric disorders including but not limited to anxiety disorders, personality disorders, depression, substance abuse disorders, self injurious behaviors, obsessive compulsive disorders (OCD), rage, aggression, post traumatic stress disorder (PTSD) and the list goes on and on.  Both survivors and parents of children with brain injuries find themselves suffering from these psychiatric disorders as a result of brain injury.  These conditions and disorders are often hidden from others because nobody wants to look “crazy”.  Our society has taught us that having these disorders is bad.  We are often told to be strong or grateful for surviving.  Then we are shamed into feel like something is wrong with us for admitting that we need help.

As a result of Isabella’s Acquired Brain Injury (ABI), she now has severe anxiety.  The separation anxiety, social anxiety and general anxiety is debilitating not to mention completely heartbreaking.  Isabella wakes up every single morning screaming from a panic attack.  This is how our day starts.  Isabella doesn’t like to leave the house because there are “bad things out there” and she feels safer at home.  When we are home, the routine is familiar, the expectations are the same and it is pretty predictable but when you leave home there is a lot that can’t be structured or predicted.  If other people look at Isabella while we are out at an appointment, she immediately tries to hide in her stroller and she starts to panic.  Unfortunately, anxiety for both a brain injury survivor and the parent of that child is all too common.

Isabella suffers from auditory hallucinations and on occasion visual hallucinations.  Isabella has these constant “sounds” that she hears.    About a month post ABI, I found Isabella under our kitchen table rocking back and forth, shaking and screaming while covering her ears.  It was like right out of a horror movie.  Over time, she was able to verbalize what she was experiencing.  The “sounds” that Isabella experiences are similar to static, stomping, banging and often sound like Charlie Brown’s teacher (talking that you can’t understand).  They scare her.  Isabella hates to be alone because of the “sounds”.  The “sounds” are constantly there and at their worst when she is tired, sick, in the car, post seizure and at night.  During the day, I try to keep her distracted and we have set up noise machines to help drown the “sounds” out.

Isabella has no regulation of her mood, behavior or emotions.  When Isabella feels something (happy, mad, sad etc) she feels it very strongly.  Isabella can escalate to rage and aggression within a second.  It is like a switch goes off and everything changes.  Isabella has been said to appear to have the worst case of ADHD that most people have ever seen.   These symptoms are all too common for survivors of brain injury.   We have trialed many medications to try and help Isabella.  Unfortunately, medication has been unsuccessful.  Some medications cause Isabella to have a paradoxical reaction which means instead of helping her slow down it makes her race worse than she was before.  Some meds cause her breathing and heart rate to drop where she appears to be lifeless.  Other medications have no positive effect.  When you have a brain injury, medications react different than they would in a neurologically typical brain.  Isabella receives in home behavioral to help her learn coping and adapting skills.  While Isabella knows what she is suppose to do, applying the skills is where she can’t seem to connect.

Isabella has extremely low self esteem.  She can’t get her brain and body to work together.  As a result she feels stupid, dumb and sad.  Isabella tries so hard every single second of every single day.  It is heartbreaking to watch her continue to try and not succeed.   Isabella knows that before her ABI, things came much easier.  Now everything is a lot harder and as a result she feels negatively towards herself.   I use a lot of positive reinforcement with Isabella.  I ask others that work with her to use it as well.

When we hear of PTSD, we often think of members of the military.  However, PTSD is not limited to the military.  Some of the symptoms of PTSD include nightmares, flashbacks, difficulty eating or sleeping, etc.  Many brain injury survivors live with PTSD every day.  Many parents of children with a brain injury also suffer from PTSD.  When you see your child dying before your eyes, it changes you.  It changes your entire world and everything that you thought you knew.

Isabella, like many other survivors of brain injury suffers from psychiatric disorders as a result of a brain injury.  Parents of children with brain injuries can also suffer from psychiatric disorders because they have witnessed the unimaginable.  Often times people go without treatment because of the shame that often accompanies these disorders.  Brain injuries change not only the survivor’s life but also those directly involved.  It is ok to feel how you do.  It is ok to get the help that you need.  Let’s end the shame that is involved with these disorders.

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. 

Are You Prepared?

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

It is winter time and the snow storms are plenty but we also have to contend with hurricanes, tornados, and other weather related events throughout the year.  Having a child during a weather emergency can be difficult enough but having a child with special needs is even more challenging.  Do you have an emergency plan in place should something happen?

When hurricane Irene hit in August 2011, I was terrified.  Isabella was less than a year post Acquired Brain Injury (ABI).  She was medically unstable child; her seizures were not controlled.   She also has life threatening allergies to food.   I thought I was prepared as the most we had ever lost power was a few hours.  After 3 days without power, I realized just how ill prepared I was.  I vowed to never be that unprepared again.   Below are some of the things that I learned:

  1. What do you have planned for food?  How will you cook it?  When Hurricane Irene hit, I had one meal prepared (that night’s dinner) and 2 snacks.  Isabella has life threatening allergies to food so all food is made from scratch.  I am embarrassed to say that after dinner was eaten Isabella lived off of homemade cupcakes and chips.  Yes, she ate that for 3 days.  The grocery stores were closed because they had no power.  Isabella couldn’t eat take out due to her allergies and I had no way to cook anything for her.  It was terrifying.  Now I make sure to have safe nonperishable foods for Isabella such as freeze dried pears, dry cereal, rice cakes, pretzels, raisins etc.  We always have fresh fruits and raw veggies.  Our grill always has gas so that we can cook on that as well.  What is your plan?
  2. What do you have planned for medicine?  Do you have enough medication filled and on hand?  One of Isabella’s seizure medicines is compounded (made from scratch) and needs to be refrigerated.  When Hurricane Irene hit, I had one bag of ice.  I never thought that electricity would be out for a day never mind three days.  Ice became scarce as stores would sell out as soon as they opened.   My best friend went out of state to find ice for us.  Now I make sure that I have plenty of ice on hand.  I also have a small cooler to fill with ice just for her medication.  I make sure to have enough medication on hand to last a few days.  What is your plan?
  3. Do you have enough bottled water to not only drink but to wash up should something happen to the tap water?  When Hurricane Irene happened, I had a gallon of water and half of a case.  We went through that in a day.  We were drinking it but I also used that to wash Isabella with.  The hot water was gone due to no electricity.  I took ice cold showers but there was no way Isabella was.  Now I make sure that we have several cases of bottled water on hand.  I also have baby wipes at all times.  What is your plan for water and bathing?
  4. Do you have plenty of candles, flashlights and batteries?  When Hurricane Irene hit, I had a big black cherry jar candle, a big linen jar candle and a dozen tea lights.  We had two flashlights and no batteries.  The jar candles lasted the entire time; however, to this day either smell makes me gag or I get a headache.  Isabella hated the way they smelled but hated the dark more.  Now we have a stockpile of unscented tea light candles, multiple flashlights and batteries on hand.  Could you survive a day or three with your current supply?
  5. How will you stay warm?  Heat is generally lost when the electricity goes out.  When Hurricane Irene came, we had the air conditioner on until the power went out.  Once the storm left, the air got cool so we didn’t have to deal with the heat or cold weather.  As a precaution during a winter storm, I crank the heat.  This ensures that our home will stay warmer longer should we lose electricity.  When it is bitter cold out, the higher the heat inside, the longer it will take to cool.   As a backup plan, where would you go if it got too cold in your home?   Do you have family out of town?  Is there an affordable motel or hotel you could stay at?  Do you have access to a generator?
  6. In the event of a medical emergency, does your car have gas?  Do you have a way to charge your phone?  Can you get news on a radio?  During Hurricane Irene, I kept my phone plugged in until the power went out.  I had a car charger that I could use as well.  I always make sure my car has plenty of gas because if electricity is lost, the pumps won’t work.  I also got a battery operated radio so that I can get the latest updates without having to sit in my car.  How will you have access to the outside world?  How will you go somewhere in the event of an emergency?

These are just some of the things that I have learned from Hurricane Irene.  We live in a world that is so centered on electricity that it is hard to fathom not having it for a day never mind three or more.  Having any child during these situations can be challenging but having a child that is medically complex can be downright terrifying.  The best thing to do is be as prepared as you possibly can.  While I am embarrassed to admit how we survived those three days, I did the best I could with what I had.  It was by no means ideal, however, we survived and I learned how be prepared for the next time.

What strategies do you have in place if a weather emergency occurred?

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. 

Mommy of a Miracle: What a Parent of a Child with a Brain Injury Wants You to Know

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

Last 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 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.