child with tbi,
 

Daughter got ill in February and had uncontrollable intercranial pressure, and has permanent brain damage, her brain is over %40 permanent damage. The doctors dont know why this happened again, the first time within months she was back to baseline, but this time she's a completely different person she just turned 9, and I bought her infant toys, not her favorite toys but baby toys. Its so hard to let go of the past, her smile, the laughter her running and playing and even back talking me I'ile d give the world jist to have her back.

She can talk and take a few steps but she can't remember. Stuff and is a completely different child. I know this may seem wrong but it feels like a huge part of her. Died. Yes she's still my daughter and I love her but I dont really know her now its hard to read her and she dont tell you how she feels, heck. I dont know if she even knows what feelings. Are. Im lost I need advice on how to move on and wok forward. Its just so hard and I feel like im alone. I need advice. How do you not forget but not sit there crying and all depressed. About how she was before and how shell never be herself again... before she got sick she was just like any other 8yr old girl loveing life carefree

Heartbreaking
 

Oh my word that is utterly heart shattering. As a mama of a 9 year old I can only imagine how deep your grief must be. I wish there were more I could offer but I know you will find people who understand here and they are good support. Sending a virtual hug and a heartfelt prayer. :hug:

kay,

Welcome to NeuroTalk. I am so sorry to hear of your daughter's illness and subsequent brain injury. You are right in that part of her has died. Please don't feel guilt about thinking about the past Her. You honor her when you remember her at her best. You will never get that back but you still have lots of room for her improve. She is young and the young brain has a greater chance to overcome injuries and obstacles.

I can understand how alone you feel. You miss your daughter and you are also alone because nobody understands what you are going through. I suggest you find a Brain Injury Support Group. It would even be worth an hour drive to attend a meeting. The other family and caregivers of the brain injured will greet you with open arms and understanding hugs. The Brain Injury Association of America keeps a list of the state BIA groups. The state BIA groups usually have a good list of support groups. Here is the Resources page to Pennsylvania BIA http://www.biapa.org/site/c.iuLZJbMM...n__Support.htm

Here is another that looks better http://www.abin-pa.org/sgrpselt.asp


If your daughter is being treated at a rehab hospital, they likely have a connection to a support group.

I know a young man who needed a hemispherectomy at about your daughter's age due to intractable seizures. His brain was able to do amazing things to make up for the lost brain tissue.

Not knowing your daughter's capabilities makes it difficult for us to suggest ways for you to interact with her. The one thing I can tell you is she likely can not handle situations where there are more that two choices / options. A question like : What do you want to wear today ? can be rephrased, Do you want to wear shorts or long pants ?

Regarding her emotions and such, she likely is dealing with a symptom called flat affect. It will take time for her to learn to express feeling. Her expressions may even become contradictory to the situation. TBI can get the whole system mixed up. It will take time and support for you to start to figure these issues out.

Have you applied for Social Security Disability for her ? It may make her available to supporting programs. Call the Social Security Administration and ask them.

The TBI Survival Guide may be worth reading. It is at www.tbiguide.com

Please feel invited to lean on us. We are here for you. Most of us are living with mTBI. A few are parents or family of a TBIed person.

And, don't forget to ask for help for yourself. You need good support from both family and professionals. She needs you to stay healthy and the stress of going this alone is not good for you.

btw, My mom lost her sweet little boy when he (I) was ten years old. We did not begin to understand the changes in me for years. That was 48 years ago and I am still learning about the injured me.

My best to you both.

Oh My
 

Dear new member,

I read your post and really felt it.

Mark gave you great advice and ideas. I have nothing to add there.

Welcome here though, and I do hope you find a group that meets your needs. You need others to talk to.

God bless you and yours.

poetrymom

Thank you all especially Mark, its like ill be watching tv or cleaning and ill think and say hay I'm gonna clean her room and then instantly tears come ans all I can think of is that one night she helped me clean her sisters room, even though she hated to clean I can see and realize she just wanted to be with her mom. I feel so bad for all thoes times she wanted me to play barbies but I was to busy well I thought I was.. moat of the time its all the things I didn't do or didn't say to her that I remember, yers I do have wonderefull mories but its so hard to think of them.. sometimes I don't know if I can go on. I'm a mother of 5, ages 9yr,4yr,3yr, almost 2yr and a 3mo old who was born in the middle of her my oldest illness and she was 6wks early.. people judge me when they see and hear how many kids I got but never in my life have I ever thought one of my baby's would be disabled.. I'm sorry I had to vent to someone....

Thinking of you and wishing you strength. Your daughter will continue to heal her brain throughout her whole life, so that is where you can find some hope and comfort.

Grieving your losses is important. I feel for you. I have a daughter the same age. As parents we want to protect our children from harm. You sound like a great mother.
Hang in there, and take it day by day.
M

Kay,

Don't stop believing.

Her brain is sooooo young.

Follow the nutrition and vitamin regime

Read as much as you can.

Don't ever settle on a doctor or therapist. Shop!

Make her your life, but you need to have a life too. Balance. Ignore others that don't bring positive to your life. Learn to ask for and accept help.

I lost my child at 10 for over a year to a major surgery. Her personality changed, our relationship changed, everything did. I was crushed, her dad too because we've always been a united, loving, strong team. We remained her constant so that even though her life felt so different and herself too she could always have us as the same.

It's taken a long time but now she's so much the child we raised and more. The relationships are stronger, she found an inner strength, and she knows herself so well. She's developed such empathy, compassion, and drive.

Her injury was not even her brain and its been over a year for her to come back. She's still healing physically, mentally, and emotionally and in a way we all are.

The brain takes much longer. Don't give up in your heart. Time and youth are on her side along with you!

Peace, Jace

I am so sorry for your heartbreak. I can imagine how you feel. I had a senior son headed for a full ride to MIT and suddenly that son was taken away by a severe TBI. The doctors had little hope for him and advised us to let him go or else he would only be a vegetable the rest of his life.

Long story short we are now emerging into his second year of recovery: The good: he still has his sense of humor, he can still remember math, some Spanish and German. He can tell me he loves me. He can't walk yet, but getting closer. He can get up, take a shower, get dressed, and make his own simple breakfast all by himself.

The bad: he can't remember anything for more than 5 minutes, he keeps blacking out and no one can determine why, He can't be left alone. He is incontinent.

I get it.

A friend of my gave me this advice: "Mourn for the loss, but not too long because your child will pickup on your mourning and will begin to feel like they are not worthy of being loved.

He is now different but embrace the difference just as you would when meeting a new friend or grandchild or a new sibling.

Different is only as bad as you make it."

This advice has kept me sane. BUT it is easier said then done. Mourn your loss, but rejoice in their life. Hope this doesn't sound to preachy or anything. I just know the pain and heartbreak I have gone through and many people posting here have help alleviate the pain. I am hoping to return the favor somehow.: hug: