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

T

tim_goodnews

New member
2 months ago, 2 days before her 4th birthday my daughter was in a car accident with dad. It was the worse morning of my life. I am beyond grateful she’s still here. Both of them. I am. She’s kicking butt in physical therapy and has progressed so much. Today the neurologist surgeon gave us results and said that emotionally and physically she’s at 80 percentile for 4 yo. Her speech however… isn’t there. She suffered a traumatic brain injury and I’m having a hard time picturing her being the same old her…. I’m breaking. I just want her back. And I feel so guilty for not spending more time with her before the accident. I’m all over the place. The fractures in her skull are still healing. I know this. I see hints of her and she does talk… she’s been making progress like I said. I mean she’s already walking. She’s gonna walk out than damn hospital and she has a fractured leg! She does have a g tube in her belly so instead of coming home today she’s coming on Wednesday. I drank too much this Pat weekend cuz I am full of fear. I don’t want to mess anything up. I don’t want to hurt her or have her hurt ever again. I know that’s not realistic because life. But. She’s just been through so much. I had to reschedule my therapy for next Wednesday and my cardiologist for next month. I have my own crap goin on and every day is coming faster than the next… I cleaned everything and got good groceries to have everything ready for her. I have done what I can and now we just get to be home together. Something I wasn’t sure was going to happen again 2 months ago. I just needed to get this out there. Leave me. Cuz I don’t want to be terrified to drive with her, or have her home with a g tube for however long, and especially don’t want to fear that she will be permanently brain damaged. That’s it. If you pray, please pray for Ariya. Thanks moms.
 
@nodu Thank you for putting this moment into perspective, I honestly hadn’t thought of that with all the fear consuming me. I love the idea of being bringing her home as a newborn baby again. It already feels less tight in my chest.
 
@tim_goodnews I have two siblings with TBI. It changes them and the TBI is part of who they are now. Medical resources and knowledge of TBIs have come so far in the past few years.
It’s normal to be scared of the unknown, find a support group online if you can. Remember though degrees of the tbi vary so don’t expect your dd to be just like the others in the support group.
 
@brandon1992 That is a great idea, I will look into it tomorrow. I get scared to research too much about Tbi’s because it triggers the whole anxiety unknown fear feeling. Even the drs had to be cautious divulging certain things because I literally had panic attacks and SVT episodes in front of them 😩 but a support group idea I like.
 
@tim_goodnews My friend was hit by a car when she was seven. TBI and she lost the ability to walk and talk. She has two masters degrees, one in neuroscience. She gave trainings and talks at work. It was hard work, but she did it, so it's possible. I wish your daughter the best.
 
@tim_goodnews Oh man, this post hurt my heart. I can’t even imagine what going through this feels like, I’m so so sorry this happened.

The fear and anxiety are totally normal, any mom in this situation would be stressed the hell out. Your baby needs your love, strength, and attention and she will get through this. She won’t be the same little girl as before in a few different ways, but she is still your beautiful baby girl. You’ll learn her new normal together, and you’ll love her no matter what that looks like. I’m sure it was so tough for her being stuck in the hospital, just having you with her all the time again will mean so so much to her.

Modern medicine is a huge blessing - if you have questions or something doesn’t seem right, trust that maternal instinct and call the doc or take her in. It’s going to be hard as hell, but you got this. Recovery from a tbi is so challenging and can show itself in so many different ways, but remember that she’s young and resilient. Ask for help when you need it and lean on people in your life to get both of you through this. Seriously, there is NO shame in asking for help!! (I struggle with this myself, on stuff wayy less serious than this! You’re an amazing mom but not an inhuman super robot, we all need help with the hard stuff)

Sending all the positivity and good thoughts your way
♥️♥️♥️
 
@tim_goodnews September 27th, 2022, 3 days after my daughters 1st birthday, I was in a car accident with my 2yo son and daughter. We were t-boned on my sons side at 60mph. I am now paralyzed from the chest down, and my son suffered a dislocation spinal fracture at c-0(his spine was literally separated from his skull) and a TBI though not as extensive as your daughters. By some miracle his spinal cord is intact. We both spent 2.5 months in the hospital, he got out the day after me. He didn’t speak for 2 weeks, and the speech was slow to come back. When he left the hospital, he had to use a gait belt and be supervised full time. He struggled with fine motor skills. He was in a c-collar 24/7. Were 8 months out, and (after lots of PT and OT and speech therapy) if you didn’t know, or didn’t see the scar on his neck, you’d never know. The brain when they’re so little is so malleable and has amazing ways to heal itself. Your daughter sounds so strong, and you sound like a great mom. It’s not going to be easy, but you have yo push every day to keep up with her therapy and she will get there. Sending lots of love to you ❤️
 
@tim_goodnews I’m so sorry you guys are going through this. I think it’s especially hard to see our children harmed when they are still so little and innocent, but her age is actually beneficial to her healing. Little kid’s brains are primed for growth, learning and new connections, and their little bodies are doing such incredibly fast growth which is going to help her heal (because healing is basically new growth). Her brain and body are doing truly incredible things right now!

I know it must be hard not to worry you’ll mess something up, but the most important thing she needs now is connection, to know she’s safe and you’ve got her. Maybe try to find some of her favourite things or get a few new toys that you’ll know she loves so you guys can play together.

Something I thought might be beneficial for your own mental health is to understand that major life changes like a long-term illness or injury often cause a period of grief for the sufferer and their family. You grieve the loss of the life you thought you would have. So you’re grieving the physical and mental/emotional setbacks your daughter is dealing with instead of the average life you thought she’d be living right now, you’re grieving the loss of that average, easy life, both for your daughter’s sake and your own. Both of your lives have veered course and that’s a hard adjustment. So it’s okay to feel anger at the world (because this situation is unfair as fuck!), it’s okay to be depressed about it, it’s okay to feel anxious about the unknowns. You’ll get to a more stable, known place in time. You’ve already been through the scariest hospital part, you’re amazing and you’ve got this.
 
@xerokitsune I’m crying… thank you for taking the time to write such a kind response. I’m not feeling so alone or fearful thanks to you all. You’re all right and this is one of those times Reddit is really beautiful for me.
 
@tim_goodnews Hi, I am so so sorry for this horrific accident and wanted to say please lean hard on all your supports so you can be present for your daughter. It sounds like you are doing just that. Also, a super group is a phenomenal idea and your personal therapist may be able to make some recommendations. I am a neuropsychologist and a large part of my career is providing cognitive rehabilitation to those who have suffered TBI. I don’t want to downplay her injury because it does sound very serious but I also want you to know kids are damn resilient! The brain doesn’t stop developing and growing until our mid 20s and when there is damage earlier than this the brain is really good at finding new pathways and connections! Lots of kids are able to regain functioning. I would encourage you to ask your daughters doctors about cognitive rehabilitation, they should offer it as an outpatient appointment for her after they discharge her. The first year is the biggest window of recovery and it will be the hardest but you will also see her regain a lot of functioning. What a lucky girl to have you in this moment in her life, I’ll be thinking of you both.
 
@tim_goodnews I am so sorry that happened to you. It truly is all our worst fear. I’m so glad she and her father made it, she’s coming home with you, and she is doing so well. I know things will be different at first but she’s your same girl, your sweet baby girl. Sweet Ariya. I will pray for you all and be thinking of you all. I hope you will get to celebrate her 4th bday at some point in the nearby future. It’s definitely ok to be scared as you navigate this new unknown. I would also be afraid to drive again so I am sorry I can’t help much there. If you have any options to see a therapist too, that might be helpful. You have undergone a great trauma as well, even if it isn’t outwardly visible. I will be hoping for continued miracles for you and your family.
 
@arbie5788 Aw thank you for your sweet words! She is my sweet Ariya! I appreciate your prayers immensely.
Therapy is going ok so far, lots to unpack so trying to use the time wisely. No therapy this week however as there’s so much going on already.
 
@tim_goodnews That makes sense! I think as long as you keep up with therapy overall, taking a break every now and then when life is crazy is completely fine. And is probably even beneficial so you all don’t get super burned out! Will definitely keep praying as well. All my best to you. ❤️
 
@tim_goodnews I tried to write a comment on this last night but it proved too much. I’m a dad (hope that’s okay) but I have a 4 y/o with a severe TBI who just came home from a months long hospital/therapy stay from November to March. Very similar to you - he was in a car accident about six months ago and ended up in a coma. My wife and youngest son died in the accident. My oldest and my 4 y/o miraculously survived. He had to do therapy and relearn everything - walking, talking, eating, everything. He also has a G tube as well. Please reach out if you have questions. I’m happy to talk. For now, I’ll try and offer practical advice I’ve gained so far. First, if she’s walking and you live in a house with a second floor, get some kind of baby gate for her room and install it. It’ll give you peace of mind until she can navigate stairs safely. Second - put her bed (if she’s in a regular bed) down on the ground with just a mattress. It’ll be safer that way so she doesn’t fall out of the bed. Third - even if she’s eating and drinking and not using the G tube all that much - be wary of not keeping it cleared. My son has been blessed that he hasn’t need to use it in weeks. However, that meant detritus built up in the tube and I had to figure out how to clear it (massaging and breaking up the food residue manually + pushing warm water through the tube). Fourth, be patient. Not even with your child - with yourself. I found myself losing patience and flipping out because my son’s impaired attention span meant that I couldn’t get a break at all during the day. I had to learn that it was okay for me to close the door to my bedroom and breathe or read for 15 minutes every now and then. I felt guilty at first - that same guilt you did. How could I ignore or push away my brain injured 4 y/o who survived the impossible? As it turns out, I need quiet and calm occasionally so I can be the best parent possible. Just breathe and do what you need to be rested, relaxed, and ready for what they’ll need. Take care of yourself. Seek therapy. Accept the guilt and the heartache and the struggle, but don’t accept that you deserve it. No one does. I’m so sorry and I wish you the best.
 
@cherishedlady1969 Oh my. Of course it’s ok sir. Thank you so much for your courage. For your time and words. It means so much to me. My deepest condolences as well. I’m filled with sadness for you. I can’t believe the heartache you must have endured because I literally fell to the floor when I first saw her in the ER before they rushed her to brain surgery. My heart was put back together piece by piece with every surgery they had to do, the final one being the g tube. Talk about solidarity. We will definitely be reaching out to you as someone suggested a group of some sort being helpful. Thank you SO much for sharing your strength with my us. My prayers are with you and your family. Everything you said is… so incredibly helpful and resonates deeply.
 
@tim_goodnews I'm just so sorry. Please allow yourself to grieve. You don't have to feel bad about doing it.

And please it know it wasn't your fault.

I know logically you know that. But the "I should have been there to protect her" thoughts creep in. And the guilt.

It's okay to be scared. Be scared and brave. And all that means, is be present.
 
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