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. 

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201 thoughts on “Mommy of a Miracle: What a Parent of a Child with a Brain Injury Wants You to Know

  1. Dee Quesenberry

    You have said it ALL, the best I have ever read!!!! I am a parent of a child who was born without a crucial part of her brain, so I have , in essence, “raised” a brain injured child. Her injury just happened shortly after conception, but the life has been the same, and the story the same. I wish to give you hope, however, because my daughter is now 42 years old. She DID learn to walk, talk, graduated high school, and obtained independent life, but that independence is to a lesser degree than most individuals as she does require a minimal amount of supervision. But she is a happy person, gets along with most other people, and is a joy to be around (usually, but you know that part) Our children are, first of all, children, who DO GROW UP, Those Grown up Children DO become productive individuals, as well, who can and do contribute to the society they live in. I would like to warn you, however, to NOT LET the Professionals ever MIS-DIAGNOSE for Mental Illness! Brain Injury is a PHYSICAL Disability! I know you probably do not hear encouragement very often, so I have to say ” Keep up the good work, Mom….you’re doing GREAT!”

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  2. alaina

    This is so touching, im 20 years old with a 19 month old son with sever brain damage from birth, it wasnt suppose to happen but it did. Nobody thought he would make it but he did :’) i lost all my friends because i had a “brain damaged child” and couldnt be the person i once was. Life changes in many ways, & my life has changed for the better, nobody can change and magacially fix our children with brain injuries, but being there parent you CAN, ypu can give them life and love, sometimes its hard and i stop and think why ME ? But then i remember i have a miracle, that will always hold the key to my heart, if i could i would make a cure for all our beautifull bundles of joys. I watched my son die in front of my eyes, but he always came back. People judge but they dont stop and think it could happen to anyone, we, us mothers with disabled children are fighters. NEVER GIVE UP. ❤

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  3. razorrahman3x

    Thank you for expressing your feelings! I am a parent and although my circumstances arent the same, i can understand and i feel your situation..but like you said, keep focused on giving love and all the support that you possibly can. You may feel like you may have missed the future you dreamt of, but you nevet know what unexpectes brifht future your child will have.

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  4. Sing Speak Smile

    beautiful post. i’m on the road to becoming a speech-language pathologist, and words like these help to remind me who i’m working for and the importance of knowing your side of the story. thank you!

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  5. Stess

    Excellent post; my child does not have an ABI – he has Asperger’s. Many of the things you said apply to parents of kids with AS, too. Hang in there. Sometimes, the best you can do is make it til bedtime. 🙂

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  6. rushtri0055

    Thanks for the insight, I was never exposed to a family member or friend with a child who has brain injuries so I have never known the plight. Your strength and confidence is sure to positively impact your daughter’s life and that’s one of the most wonderful things that a parent can do for their child, even if the child may not be in a position to realise it. With regards to never giving up on your daughter, I support and encourage you 100%, never, never, never lose that hope. If the doctors see your willingness to go on they would not back down either (not that you would let them!) and your persistence is sure to improve the quality of your and your child’s life. Hoorah to you! Keep strong and all of God’s blessings to you and your family.

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  7. daily life impressions

    these words are so moving. I do not have a child with a brain injury, my child died in May 2012 after a motor accident a few hours after it happened on the spot. He was only 21 years old. But we’ve been informed, that, if he would have lived, he would have had a brain injury. My blog tells my and his story and things I did and still doing to cope with the trauma. Feel free to read and share blog and website and if you are interested in Reiki Healing please let me know names and birth dates and places and I will gladly add your names into my Reiki note book and box for free , just re blog or share my site to spread the healing energy of Reiki. keep the strength.

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      1. littlebitcold

        I’m glad I had the opportunity to read this, because there are so many things here that I did not know. It’s important that people know how not to hurt each other but to be more understanding and helpful toward each other.

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  8. PRINCE MARCH MRAZ

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  9. cosmotrans

    It is really bad to know how it feels when someone’s child suffer from a brain injury. I have never been through any major injury and I wish no one ever go through one.

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  10. hangyo

    Doctors have told us that our child may have a similar issue. Keeping fingers crossed and checking how we can deal with the situation. This blog site helps me get prepared, just in case! Thanks for sharing it in such a detailed manner. I see that our baby often try to convey things to us without even speaking a word sometimes – maybe its just how things are supposed to be!!

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  11. wingtrue

    You are very fortunate to have a child who was not denied care for her brain injury. Please don’t get me wrong because I know you have challenges but your child is alive. So many people lose their kids due to over-zealous doctors dishonestly diagnosing “brain death.” Please read the Facebook site: Organ Donation Exposed. It is written by a friend of mine who if her child had been spared, she would never complain a day in her life.

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    1. Kristin Olliney

      Does your child have a brain injury? It is impossible to understand unless you have been on this journey. On this blog and others that I have written, I have expressed how much I am truly blessed and thankful that my daughter survived. In one particular blog I had shared that when my daughter was dying before my eyes, I prayed to God or whoever was listening to please save my daughter at any and all costs. I didn’t care what that meant. I am by no means complaining. My daughter HAS been denied medical care because of her Acquired Brain Injury. I have fought many, many battles to get Isabella the medical care she needs. I will continue to fight for her until my last breath. I appreciate the feedback. Everyone is entitled to their opinion.

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      1. jdiservicesinc

        Kristen, you are a blessing & an inspiration to many, Isabella is lucky to have you in her life… it’s what being a mom is…
        I began to tear up when you mentioned ” when my daughter was dying before my eyes, I prayed to God or whoever was listening to please save my daughter at any and all costs. I didn’t care what that meant.” I too was in your shoes w/ my 5 yr (old at the time, he’s 9 now & permanently disabled because of it ) & I said your exact words & prayed for the same. Hang in there…

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  12. garden98110

    In my family, opinions were divided. Life in an institution seemed simpler for some. Education did not make all the difference in my life. Education gave me a life. I never became rehabilitated. How could I pretend to become someone I could not be again. Instead, I became habilitated and learned to live as who I am. Sixty-two and still learning. – The Healing Garden gardener

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  13. k holzbaur

    I’m a mommy of a miracle child too. My daughter who is now 20 was also 4 years old when she was in a car accident with a relative. She was life flighted to children’s hospital where she wasn’t expected to survive. Everything you said about being a mom of a child with a TBI I can relate to.

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  14. drapersmeadow4

    Wonderful post! I can relate to so much of what you’ve said – our child was born with hydrocephalus due to a rough delivery. Our life as we knew it ceased to exist. Number 7 was particularly a pet peeve of mine – we do what we do because we have no choice and because we love our children unconditionally.
    Unfortunately our son passed away seven years ago.
    Good luck as you continue on your journey of advocacy and education. There is no greater power than that of a parent’s love, especially when banded together for a common cause. Be well.

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  15. gliderpilotlee

    Once, I experienced one tenth of one percent of the issues you have brought up. Apparently the brain has many reroute or rewire capacity as ” your specialists /doctors were apparently wrong” a little or a lot. I noticed the area of god did it, we should feel so sorry for people that are this cruel and uninformed. I’m personally sad that anyone anywhere has ever heard this expression, or said it. If the head on your car engine melts from lack of coolant – a prayer will not repair it, it’s the same with a brain damage.

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  16. amazzawi

    Just saw this and thought it was very well put, I could only imagine what you went through with your daughter. While my son doesn’t have an acquired brain injury, he was diagnosed at 18 months with CP and it’s nice to hear other stories. People don’t see this disability, it is invisible and easy for others to put out of mind, which can be frustrating.

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  17. isabellanancy

    What a great post that informs people without alienating them.
    My child, Bede, has terminal brain cancer rather than an ABI but I can really relate to some of what you say like the worry and being told they will never eat etc. I often read that about never being able to go back to who you once were and I completely agree though don’t think I would want to anyway – I think he has somehow grown me.
    My heart goes out to you. What a gift our children are, perfect just as they are, your daughter looks beautiful.
    It sounds like your Isabella got the best mum for the job! Awesome piece from an awesome Mum.

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  18. Zeynep A

    My grandfather had it. My neighbor had it. I have a friend now, who’s almost 3 year old daughter had a brain injury when she was 8 months old. We always try to support her in play groups etc, but only now as I read your post I understand the many other feelings that my friend just couldn’t tell us. THANKS. I’d like to translate your post to turkish if that’s okay with you.

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  19. pradnya deshmukh

    I cried after reading your post.All my strength to you to fight the world which makes you think about your abilities. Be the person you are as its very important for your daughters life, never settles for anything rather than your innner voice,views and beliefs about your daughter.Nobodya knows your daughter the way you do, hence be her breathe.

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    1. Jeanne

      My little five-year-old granddaughter was diagnosed with a brain tumor June 26. She went from getting her green belt in karate several days before, to having major surgery the day after we found out. The tumor was located on her brain stem.

      It’s hard to know how to be supportive and what things help. We live far away so we can’t be of help physically. We write frequently on our granddaughter’s ‘caringbridge.org’ site.

      If you have any more suggestions we would be delighted to hear from you.

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      1. Kristin Olliney

        Thank you Jeanne! I am so sorry to hear about your granddaughter. Please let her parents know about my support group. My best advice is to listen when they talk or vent. When the crisis is over and things seem calm continue to be there for her parents because it may seem calm on the outside even if it is not. When the rest of the world has moved on in life, let them know that they haven’t been forgotten. Read as much as you can about brain injuries, ask questions and be supportive. I am sure that as time goes on her parents will be able to relate to my blog. Please share it so they know they are not alone. Best wishes to your granddaughter and family!

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  20. lt308

    I am a survivor of a critical brain injury. It was because of a fall. The things that you talk about hit home for me and I am a grown man. People do look at you differently. Bravo for not giving in to what the Dr says. I was never supposed to be able to work again and I am back as a professional firefighter. This world needs more fighters like you. I thank you very much for sharing your thoughts.

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  21. Maggie O'C

    Oh this is beautiful and makes me cry. A friend of my daughter’s suffered a traumatic brain injury on November 15. She is still in the hospital. She is finally out of her coma but now needs to hopefully learn to speak, learn to swallow, etc. My heart breaks everyday for Katie and her family. I don’t have adequate words. Please know how I admire your daily strength and the strength it took to write this post.

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