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.

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2 thoughts on “Mommy of a Miracle – What I wish I knew

  1. Bart Boughner

    Yes it is a life long journey, but you end up with different friends than when you started but sometimes that is a good thing, I am 12 years from the date of my accident and also still learning and yes I was told the best recovery is in the first 6 months , then within the 12 months you still make progress than after that it slows down dramatically, well it does somewhat but you have learnt skills by then to help you further your recovery, I know it is hard on the family because sometimes they forget we have a problem or can’t understand why we can do things one day and not another. It’s a challenge but never be discouraged about it. Learn new things that you are good at or just simply enjoy. I always wondered about Hyperbaric oxygen therapy but when I was hurt there was not really anything going on with Brain Injury and that therapy…..It’s awesome it helps, keep up and keep going everyday is a different day whether it is one step forward or one step back, sometimes the setbacks are good because you have to recall on what helped you through them , just like retaking a course in school, it retains better the second time around………..Always keep the praises going on small accomplishments and never hurts just giving a hug and let them know you love them. Even people without a TBI has to go through changes in their lives too, the just don’t have to start over. Ever Evolving! Big Hugs keep doing an awesome job! Bart Boughner St. Williams, Ontario Canada

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  2. Mary Enger

    I am caregiver for my hubby who had TBI in 2012. He now has been DX with Hashimoto encephalopathy Is currently being treated with steroids plasmapheresis and Cellcept. Curious about hyperbaric oxygen therapy.

    Liked by 1 person

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