Tag Archives: recovery

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.

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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 – 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.

Don’t Wait, a guest post by Catz LeBlanc

Catz LeBlanc goaltending for her handball team.

Catz LeBlanc goal tending for her handball team.

Today’s blog is written by Catz LeBlanc, a member of the ‘Amazing’ Brain Injury Support Group in Framingham, Mass. Originally from Madison, WI, a former Physician’s Assistant, collegiate soccer goalkeeper, ice hockey player, team handball goalie and mother of an “amazing son,” she suffered a sports concussion as a team handball goalie. Two months later, she suffered a more severe concussion when her Volkswagen Beetle convertible was rear-ended by a truck and totaled. Searching for a book to provide some comfort, guidance, understanding for her challenges with the fallout of a traumatic brain injury, she found none. So, she wrote one. She continues her rehabilitation four years since the injuries.

Don’t Wait

Everyone is so busy.  No one has enough time, no one has enough money.  Someday, someday, they will do what their heart and soul desire, in the meantime, so much needs to just get done.

Last week a woman said she thinks she has maybe five to seven decent years of cognitive function before she may succumb to her older siblings’ demise.  There was urgency in her voice, tired of helping everyone else, everyone always needing something from her–she just wanted to live her own life–with whatever remaining quality she has.

If I could, I would fill Gillette Stadium to capacity, everyone shouting “Yes, you, do it! We give you permission!” If I could, I would have all the birds in Boston sing outside your bedroom window, “Wake up! Wake up! Today’s the day YOUR life begins!”  If I could, I would have the planes at Logan fly over you, pulling signage, “TODAY! Yes, you, Today- GO FOR IT!”

It would be tricky, but we might be able to have you professionally kidnapped, to somewhere you can finally do what your heart and soul have been whispering.  Trickier still would be to have all the family and people connected to your loathsome to do list- have THEM professionally kidnapped and dropped off with provisions to an island to care for themselves for the next whatever number of years.

Perhaps your next fortune cookie will read, “This is it. Last call-You have 6 months of quality left. Use wisely.”  Would you change your priorities then?  What’s it going to take to have you put you on the top of your list?  Are you waiting for a parade with bells and whistles, a marching band, to let you know, OK-Now! Go ahead, FORWARD march!

Human illusion of time left in our lives, it’s funny how we somehow calculate it, as if a physics equation.  Denial is a powerful thing. Human nature is human nature.  “I’ll just get these two more things done and then I’ll sit down and give myself 30 minutes for me.” And then the door bell or phone rings, postponing again and again. Before we know it, another decade or more has passed.

We are delusional about our lives–Start today, tomorrow noon at the very latest.  I’ve already been to the land of a compromised brain and it is a Godforsaken place.  I’m still stuck there precariously living within my limitations, receiving punishing consequences if I rebel.

Will we be one of the lucky ones who suddenly dies peacefully in their sleep, self-sufficient until their last breath, life list completed in total?  What are the odds of that?

How about listening to that inner voice?  I can hear the resistance rallies revving up, all the reasons why you can’t do what you say you really want to do.  No need to answer me. It’s your life.

P.S. Here’s a sample refrigerator note.

Dear All,

I have come down with a rare form of L.M.N.O.P. and am quarantined for a bit.  Don’t bother to phone or text as my room doesn’t get the tower.  Take excellent care of each other and don’t worry about me.  I will be just fine.

 Love,

Your spouse/Sibling/Parent/Grandparent/Neighbor/Friend/Friend of a Friend…

Catz’s book, Tell Me This: Encouragement and Hope after Brain Injury, a pocket guide for athletes, veterans and civilians, is being published by Lash and Associates and will be released this coming winter.

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

Celebrate the Journey with BIA-MA at Our 30th Anniversary Reception

Jim Braude (WGBH and NECN), Margery Eagan (WGBH and the Herald) and Robin Young (NPR), our honorary co-chairs, invite you to celebrate the 30th Anniversary of the Brain Injury Association of Massachusetts on October 9, 2013 from 6 to 8:30 p.m. at the John Joseph Moakley U.S. Courthouse in Boston. The festivities will begin with a reception and silent auction at 6 p.m. in the Atrium offering sweeping views of the Boston Harbor, followed by the awards presentation, live auction, and entertainment at 7 p.m. Our emcee is Mary Blake, a courageous survivor of brain injury, and an award-winning reporter and anchor at WBZ News Radio. Guest admission is $125 per person. A photo I.D. is required for admission.

Our celebration will honor four outstanding individuals who have made significant contributions to the field of brain injury. In 1980, Marilyn Price Spivack, the Neurotrauma Rehabilitation Outreach Coordinator at Spaulding Rehabilitation Network, founded the Brain Injury Association of America and Inta Hall was a co-founder of the Massachusetts Brain Injury Association, now BIA-MA. These two extraordinary women will be recognized with the Founder’s Award for creating these organizations that were the first of their kind and remain national leaders. State Senator Harriette Chandler (D-Worcester) will be recognized with the Legislative Advocacy Award for her support of public policy efforts to improve the lives of survivors, and the Compassionate Care Award will be given to Dr. Douglas I. Katz, Medical Director of the Brain Injury Program at Braintree Rehabilitation Hospital in Massachusetts for more than 25 years.

You, our supporters, our constituents, friends and fellow advocates for brain injury survivors, are invited and more than welcome to celebrate with us–this momentous occasion. If you are a survivor and are looking for accommodations, we have them! Contact development@biama.org for more information.

You can participate in our 30th Anniversary: Celebrate the Journey event in three ways! You can sponsor the event, attend the event, and put a two-line message or full-color advertisement in the evening’s program book. Celebrate a loved one who lives with brain injury, a caregiver or friend who has been instrumental in your recovery and rehabilitation, or a professional who has kept you motivated by placing an ad or message in the event program book by clicking here.

For more information, visit our website and see how the Brain Injury Association of Massachusetts Is Celebrating the Journey of 30 years of serving survivors of brain injury, their caregivers and family members and professionals in the field.