Grieving my head injured nephew

[colsxjack]

My 16 year old nephew was hit by a car 1.5 years ago and has sustained a serious head injury. He is still alive, but very much changed and will never be the same again. His left and right sides of his brain were severed from each other and his white and grey matter were detached from each other. Over time he has had some brain neurons "grow back" but they are not connected as they should be.

When the accident happened nobody really expected him to live. He was in a coma on life support for a while and stayed in a coma after life support was discontinued. Over a few months he slowly regained ability to blink, then nod, then eat, then move, etc. Now he can talk and walk. He has somewhat of a sense of humour. He seems happy. He cannot socialize. He cannot direct a conversation. He gets fixated on one or two things and repeats that conversation/question numerous times over an hour. His short term memory is so bad he will not remember that he just asked the same question 4 times.

It is a miracle that he is even as well as he is. We/I rejoiced when we realized that he would live and would actually have some aspect of a life. But as time has gone on, I have come to realize and accept that he will only get better to an extent. I am sad for him that he will probably never be able to be independent. He may never regain enough brain function to develop short term memory again and therefore can never be left alone, cannot have full conversations, cannot be fully social. (his long term memory is OK)

I am grieving for him. And I am grieving for me. We had a very special relationship. He had a rough time at life and was always considered the "bad" kid and the scapegoat for everything. He and I got a log really well and he always looked forward to weekends he would spend with me and he "worshiped the ground I walked on". That relationship is gone and will never be recovered. He doesn't seem to remember that we had a special relationship. He doesn't seem capable of having emotion for people or things. He was always a very emotional and sensitive boy before.

I am grieving that he has never has a girlfriend. I am grieving that he will never have a license, something he very much looked forward to turning 16 for and is still fixated on. I am grieving that he may never lose his virginity. I am grieving that he may never have truly close friendships because people (including me) have a hard time seeing him through his disability.

I also think it is affecting the way I raise my DD. My wife was pregnant with her when the accident happened. But since that accident I am paranoid that one of us will get hurt. I am also paranoid that my DD will get injured and be forever changed. I try to force myself to relax and let her be the adventurous 15month old that she is, but I find I am becoming a bit of a helicopter parent and it doesn't feel good. I freak out that my wife trusts drivers to stop for her at a crosswalk. She hits the button and starts to cross the street. I freak out inside that she doesn't wait for all cars to stop before starting across the street. I think it drives my wife crazy. I try to say anything...but sometimes I do. I KNOW that my wife cares for my DD so much and would never do anything to harm her, and so I hate that I do not trust her to be careful enough.

FWIW- My nephew wasn't hit in a crosswalk or anything. He was hit solely by being a stupid reckless teenager. He darted across the street trying to beat traffic, was wearing all black and a car didn't see him and hit him going 90KM / hr. Not the drivers fault (although the driver was speeding) and the driver didn't even see him, so didn't even try to brake.

Have you had any experience with head injuries?
Have any of you learned to relax with your children after tragedy has struck your family?
I know my fears are somewhat irrational, how to I get beyond them and let my kid be a kid?

Thank you for reading if you have gotten this far. I have not yet said any of this stuff aloud and it does help to get it out.

[Ann-Marita]

I don't have any experience or wisdom to offer. But I just couldn't read and not respond.



I hope someone comes along to offer more than just a hug.

[blumooned]

No advice here either but

I don't think your fears are irrational - it sounds like you & your family have been through a lot. I have those fears just from reading about stories like yours, not from first-hand experience! Of course you want to do everything you possibly can to protect your LO. Just have faith in her (& your wife) that she will be a responsible person herself.

[KatWrangler]

I don't have personal experience with someone with a head injury. However, my Mom had a subdural hematoma and had surgery for it back in the mid 90's. Her memory was never the same.

My Mom now has Alzheimer's. I grieve the Mom I had as a child. She is gone and won't be coming back and that is hard.

My Dad died October 2007 of Alzheimer's. I felt the same grief and the new grief of what things would be like if he were still with us.

It hurts.

[ferretfan]

So sorry that your family has had to deal with such a tragedy. The aftermath of a brain injury can be very difficult to comprehend for people who have had no personal experience.

My husband suffered a brain injury in 2003, just before we were due to be married. He spent some time in a coma, had a bilateral frontal craniectomy (in layman's terms he had the front of his skull taken off to to counteract swelling), spent some time in inpatient rehab, and even more time in outpatient rehab. Prognosis was poor initially, but he's made a pretty good recovery. He'll never work, drive, or be remotely independent again, but he gets by. And therein lies the paradox, he's come so far, yet he's still missing so much. I've almost forgotton what the 'real' him was like and that can be difficult. Sometimes I wonder if it would have been easier on us all if he hadn't made it, and I feel terrible for thinking such things - but I'm only human.

We've had two children since the accident as part of my effort to continue our lives on a 'normal' track. Like you, I do spend a lot of time worrying about them and 'helicoptering', I can't seem to help myself. My older daughter (she's 5) is just starting to notice that there's something different about her Dad. I worry that our decidedly odd family dynamic (it's more like raising three children, than having a coparent) is going to have a detrimental effect on them; time will tell.

I've spent a lot of time greiving, and still do. I mourn the loss of a 'normal life' and the loss of the man that my husband was. Antidepressants have helped me immensely. Are there any brain injury support groups in your area? My husband's family, and another family who were in rehab with their daughter at the same time as him started a local support group. It's still going strong now. I've not been in a few years, but when it was all fresh and raw I found it very helpful to be among others who'd experienced similar events as I felt very isolated from even my closest friends and family when it first happened, it was just so difficult for them to understand.

[colsxjack]

Thank you for the replies.

Ferretfan - Thank you for your perspective. I am so sorry that you have had to go through that struggle.

I am sure that your kids will be fine. Their family is the norm for them. So although they may go through stages where they are frustrated or bashful about their differences, they will grow to ultimately be fine and proud of the family they have.

I probably should seek out some type of support. Or maybe even just volunteer at the local children's rehab. Help me get perspective and brain injured people as fully human. Sometimes it is hard when you are searching in someone you already know so well for the human that they were.

My nephew will be ultimately OK. He will probably never work much or live independently, but he can have some quality of life. I just hope to be able to build a relationship with him again. I am not sure how to and am kind of afraid of him right now. I dont know how to act with him.