Daughter coming home after TBI Wednesday, I’m terrified and full of fear even after trying to be grateful and hopeful. My heart aches

@tim_goodnews Hey there, I’m so sorry this has happened to your kiddo and to you, and you’re right that it’s going to hard. But it’s also going to be full of miracles. Not quite the same, but my brother recently suffered a catastrophic TBI after a motorcycle accident. He’s different now, to be sure. But he’s also still my goofy brother in every way that matters. It’s been incredible to watch his healing. He went from the doctors saying, “let’s see if he wakes up at all” to “let’s see if he has brain function and can walk” to “wow, we have no idea how he’s talking and walking, but let’s move him to rehab.” This was 9 months ago. Today, he’s been home and driving us all nuts for about 7 months. Bringing him home was scary for about 10 minutes, but then it was so joyful, because he hated the hospital so much and his healing accelerated so much just from being back in familiar settings. The neurologists and surgeons told us that the important thing to remember is that for better or for worse, doctors really know very, very little about the brain. The one thing they’re sure of is that the younger you are when you suffer an injury like this, the better your recovery odds. Considering my brother was 33 at the time of his accident, and doctors kept saying his youth protected him, imagine the leaps and bounds your girl will probably make! The brain is truly incredible. Just love her, and above all, be patient with her. The hospital/rehab is absolutely the scariest part of this- it gets better from here! Also, you should check out Reddit TBI. It can be tough to read sometimes, with people’s struggles, but also gives good perspective from people living with TBI’s. I’ll be praying for both you and your Ariya.
 
@tim_goodnews You’re making me tear up - I am praying for you and Ariya both. I’m so so thankful that she survived and has made the recovery that she already has.

It’s going to be a long road, but you have the perspective now to really treasure every second with her. I’ve heard from parents of kids with special needs that it makes you grateful for their successes in a way you can’t understand otherwise. Not to be all silver-lining because obviously this is heartbreaking, but I just hope you’re able to take care of your heart (yay that you’re already in therapy!!!) as you take care of her.

I’m glad you shared, and I hope you’re able to get the support you need as she continues to heal.
 
@tim_goodnews A family member of mine has a TBI from an accident in her early teens that left her in a coma for weeks, during which she coded twice, and doctors told her parents that she would be lucky to even be able to tie her own shoes again due to the TBI. She is now in her thirties, happily married, with a career and a college education, and no one would know she has a TBI unless she mentioned it. Every case is just so different.

I’m so glad your little girl survived the accident, and I hope she continues to heal and that you have some peace about it all.
 
@tim_goodnews Hello, I am so sorry you are going through this, it is any parents worst nightmare. In the end our children are what matters the most, and you putting your own medical needs aside in order to be fully present and attentive to your child already shows that you wont, "mess anything up" as you said, in fact you're already doing amazing!

There have been great strides in the treatment for TBI, specifically using Near-Infrared Laser Therapy or NILT. Traumatic brain injuries cause multiple chemical and structural changes to the brain, and while healing these injuries is energy-intensive for the brain NILT activates genetic processes and initiates changes that increase energy so the brain can heal itself more efficiently.

Healing the injured tissue within the brain has helped many people, young and old, to get relief from their post-TBI symptoms and be able to return to their normal daily lives.

Here is a website that has more informaiton if you are interested:

www.Neuro-Luminance.com

I wish all of the best on your journey for you and your daughter!

Neuro-Luminance
 
@jstigga Woah thank you! I’ve been in a bit of a depressive episode lately with having to go back to work and what not. I’m not great at dealing with all of this as of late. I’ve been putting off Reddit because I knew I would have some responses to read and i just wasn’t ready. But I should have. So I can further research how to help her more. More mom guilt and shame peeks but I won’t let it win tonight. Thank you.
 
@tim_goodnews First, I’m so sorry this happened to your daughter and your family.

I’m an Occupational Therapist (though I work with adults generally), and something we learn in our training is just how resilient children’s brains are. The brain, especially in childhood, is capable of withstanding and adapting to so much (look up “neuroplasticity” if you want more of a deep dive into the science). I hope that gives you some comfort as she continues to progress. Your daughter is lucky to have you caring for her as she recovers.
 
@khr Also an OT, and I work with kids after trauma just like what your dd has survived! You’re a great mom. I can tell by how much you care. First, your dd’s brain is going to do amazing things as it heals. If you must survive a TBI, this is the best time of life to get through it- the elasticity and plasticity of the growing brain is unrivaled. There will be a day you look back on your fear and uncertainty with disbelief because of how much your child will accomplish in her life! I think the guidance from another poster to treat this as bringing your baby home from the hospital for the first time is spot on- this will help your girl reconnect anything damaged by the trauma in a developmentally appropriate way. She’ll likely make gains faster than the first go around, so stay on your toes!

Also, while it will be easy to blame a TBI for her behavior, I want you to know that my 4 year old is really going through it these days even without injury- the brain at this age is already exploding with new neuron growth and it makes it difficult for kids in areas of coordination, speech, and emotional regulation. All we can do is gently support them and love them through it.

Ask your hospital team for resources available to you in home. I work with nurses, CNAs, and physical and speech therapists to provide services in the home to support kids and their families. This is a great way to gain confidence and get support as you navigate recovery.

Last, remember you are a survivor of this trauma as well. It sounds like you could use support personally to build your stress toolkit to help YOU heal through this as well. Find a support group or a professional you can talk to- the hospital should be able to help you with resources! Stay hydrated, take vitamins(vitamin d and a b complex especially!), spend 5 minutes in mindfulness practice when you feel you’re able, prioritize sleep and fueling your body with nutritious food. Be kind to yourself. You and your daughter are incredibly resilient, and you both will make it through this.

I’m so incredibly proud of you and your daughter, and I’m sending lots of love your way. My DMs are open for you anytime, I’m always happy to lend my perspective!
 
@tim_goodnews I don't know if you will see this, OP. My daughter had a TBI at 10 days old. What the others have said about brain plasticity is absolutely true!! I know our circumstances are likely very different, but one of the nurses gave me a lifeline phrase that I have clung to since we left the hospital.

Take it one day at a time.

Cliché, of course. But she really emphasized it. Don't worry about tomorrow. Try to forgive yourself for yesterday. Focus on what you can do for your daughter TODAY. And remember that even if you have a bad day, tomorrow is a fresh start with a clean slate.
 
@sarwanov I’m going to need it tattooed on my forehead to remember! But it is comforting to hear from another momma of a tbi child, like super comforting. Thank you so much ❤️‍🩹🥹
 
@tim_goodnews Oh mama. You brought me to tears. I was just in an accident with my kids a few weeks ago. Sounds like it wasnt near as severe as this one. I cant imagine your emotions. The most important thing is everyone is still here. I am sending good vibes your way. Hold that baby close and celebrate every step she makes towards recovery. Be in that moment fully. Try not to think about the big finish line. Treat all progress like you have reached it. So many hugs to you and your family.
 
@atsmith Thank you mama, it’s such a difficult thing to need space and want to be with her constantly during this. I’m glad everything is ok with you and your babies. I would never ever wish this on my worst enemy. Thank you so much for taking your time to comfort me during this time. ❤️‍🩹
 
@tim_goodnews Firstly, I think all of you fears are very valid, and normal given the circumstances. Try not to put too much thought into getting her back to who she used to be, and just focus on each small step of progress and celebrate them as they come. She may not ever be who she was, but that doesn't mean who she IS shouldn't be celebrated. It sounds like she is making very real progress towards getting to 100%, I really hope this happens for you.

Secondly, please don't put off your own therapy. You need it now especially. Tell your therapist all your fears and work through them in therapy, so that you don't bring them home and impose them upon your daughter as little as possible.

Try not to look too far forward and just focus on today. Sending prayers and strength. You can do this!
 
@scotty111uk You’re absolutely right. I kinda have been hesitant to tell my therapist the deep real fears cuz I honestly felt guilty about even having them or identifying them until this post where I just typed it out. Which I tend to do better with instead of speaking. But I will make it a point to read her this post at our coming session. Thank you ❤️‍🩹❤️‍🩹❤️‍🩹
 
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