Tag Archives: caregiver tips

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.

Anniversaries: To Celebrate or Not to Celebrate?


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: 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.

“Staycation” Tips for Brain Injury Survivors & Caregivers

We recently did a post on vacation tips for survivors (here), so today, we’re offering some “staycation” tips for those who need or want to stay close to home.

While going away for a few days to a week in the summer can be a wonderful opportunity for survivors and caregivers to get away and relax, it’s not feasible for some. Many survivors and caregivers don’t want to be far from home or are simply unable to leave a loved one alone or in the care of a family member or friend. If you’re looking to do something special this summer and need to relax and recharge your batteries, but don’t want a lot of hassle, consider planning a staycation.

Staycations became especially popular during the economic downturn, but nowadays, even as the economy improves little by little, they’re just as popular as ever. Consider these tips as you plan your staycation.

1. Take at least a week off. Whether you’re a survivor or caregiver who works part-time, full-time or even just volunteers on an as needed basis, plan to take a week off. You don’t have to be going away for a beach vacation to take some time off and take care of YOU.

2. Plan day trips you wouldn’t normally take. During the year, your schedule is likely full of doctors appointments, rehabilitation and other tasks, so appreciate a full week of fun trips and activities you wouldn’t normally participate in. Go to the zoo, aquarium, visit a sleepy beach town for the day or go to a museum. Whatever you decide, make sure it’s relaxing for you and/or the survivor or caregiver in your life.

3. Be Mindful of Your Surroundings. Although you’re thinking of having a staycation, it’s important to be mindful of what certain locations might bring. If you’re planning a trip as a survivor or with a survivor, keep in mind that there may be too much stimulation and noise at an amusement park, for example, but a museum will likely be quieter and more enjoyable. Talk to the survivor in your life to see what he or she thinks. Also, make sure to plan breaks throughout the day to avoid fatigue.

4. Relax. Don’t plan appointments, classes or other mundane tasks during your staycation. On days you don’t plan any activities, RELAX. Read that book you’ve been dying to read or try out a new relaxing activity like yoga or meditation. Appreciate days without any required activities and simply enjoy a time that is quiet and peaceful.

5. Treat yourself. During the rest of the year we try to exercise, eat healthy, get an adequate amount of sleep and do our best to be as health conscious as possible. During your staycation, treat yourself a bit. Have a dessert you might not normally indulge in (as most people do when they’re on vacation), sleep in, take a bubble bath or go get a massage. Treat yourself to something you might not normally any other day.

Mommy of a Miracle: “Breathe”

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 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.

As a parent to a child with a brain injury, I have my moments on the emotional roller coaster from hell.  That rush of many emotions all at once usually creeps up on me when I least expect.  I am still working on allowing myself to have these moments. I am starting to realize that it doesn’t make me weak – instead, it makes me human.

A couple weeks ago when Isabella was at Aquatics “swimming” therapy, I noticed that the radio was on in the background.  The song on the radio was Anna Nalick’s “Breathe,” which was Isabella’s favorite song before her Acquired Brain Injury (ABI).  As I watched Isabella swimming and I listened to the song, the tears started rolling down my face. The flood of emotions overwhelmed me. In that moment I was sad, angry, worried, nervous, happy, proud, amazed and finally, overwhelmed with joy.   042

I have learned that it is OK to be sad and angry. Anger is a very foreign feeling for me and that emotion is usually coupled with sadness. The truth is that at times I am very angry and sad because Isabella was robbed of the life she should have had. As I listened to the song, I flashed back to the four-and-a-half year old little girl who would sing “Breathe” at the top of her lungs. Then, Isabella knew all the words and she didn’t have a care in the world. That happy-go-lucky little girl is forever gone. Isabella didn’t deserve this. I have never been one to dwell on the life that Isabella lost. However, I am learning that I am human and it’s OK to feel anger and sadness as long as it’s not what I focus on. I choose to focus on the life that Isabella has and I watch her in amazement at what she continues to overcome.

As the song continued, the emotions turned from sadness and anger to worried and nervous.  On the outside, Isabella looks like every other seven-year-old little girl. I have witnessed firsthand how cruel the world can be to those who have invisible disabilities. I worry about Isabella’s future and wonder, will she be able to be the “pet doctor” she wants to be? Will Isabella be able to have her two sons and one daughter someday? Will she be happy? Will Isabella be a self-sufficient adult one day? I allow myself the moment because I think it is only natural to feel this way at times. I can’t predict the future and I am not sure I would want to. I have learned that the only thing that comes from worrying is that it ruins the moment. Worrying doesn’t change anything.  All I can focus on is today.  I know I am doing everything I can today to ensure that Isabella has the best future possible. I have to have faith that in the end it will all work out. After all, Isabella was saved for a reason.

As I am lost in the song and all the emotions that follow, I hear Isabella laughing in the pool. My emotions immediately turn to happy, proud and amazed. The song continues, I take a deep breath and the tears become filled with joy. Isabella yells “Look Mommy, I’m doing it all by myself” as she swims for the first time. I see confidence appear on her face, something that was taken two-and-a-half years ago.  Isabella is amazing. She inspires me every day. I have never seen so much fight in anyone. I stood there watching her swim with a huge grin on my face (tears and all) because I am so very proud of her. I choose to focus on all that Isabella has overcome and the miracle that I have been blessed with.

As the song ends, the emotional roller coaster stops. I am still working on being OK with all of these emotions. I am choosing to live one day at a time and one moment at a time. I am learning that these emotions are part of the journey and help me move forward. At the end of the day, I am the luckiest Mommy. I got to leave the hospital with my baby two-and-a-half years ago when no one expected her to make it through the night.  There are so many parents of children with a brain injury who don’t get that chance to take their baby home.  I don’t take it for granted for a second that I did.