In Need of Encouragement

As a parent of a child that has been struggling ever since Sept. 9th, 2011 when her avm ruptured and almost took her life I am in need of some encouragement. I know that I should be thankful that God spared her life but on days like this I find myself wondering why this had to happen in the first place. My daughter had so much going for her and the avm has taken so much from her. She went from being top of her second grade class to having to repeat the second grade and not really sure how well she will do with that. She was reading on a fifth grade level before and has trouble now it seems with everything. Why her is what I ask on days like today? None of my friends understand what it is like. I feel like I have noone to talk to. I just want some encouragement that there is still a chance my little girl will get back close to where she was. That is all I want! I miss her little personality so much!

Hi, krd, you always have someone to talk to -- just keep coming here to talk when you need to, and we will hear and understand.

I wonder if you would consider homeschooling next year instead of having your daughter repeat second grade. She could get a lot of individualized attention without the frustration of comparing herself to others. You could focus on what she needs the most and let some of the other stuff slide. You could give her breaks and let her take naps when she needs to and so on. And better still, you will be right there to share in each little triumph as she works her way to recovery.

I am sure that your daughter will continue to heal and recover. Don't try to hold on to friends who are bringing you down. Better friends will come. Best wishes!

She is SO early in her recovery. A year from now you will look back and see how far she has come but day to day, it will be difficult to see the small improvements, right? As her mother, you have to give yourself time to mourn the girl who was... and ONLY time will help you come to accept the girl she is now. Let yourself be sad!!!! and angry!!! Those are all NORMAL feelings and everything you have written above is NORMAL for you to feel. It's like the death of what you thought your life was going to be like. It took me a LONG TIME to come to terms with that fact. I just yearned for my "old life" back - before my son's AVM diagnosis. Although he did not have a bleed, the mourning of a life changed is the same. And I too, had so much anger and couldn't relate to so many people who didn't understand AND I felt SO alone.
But watch her go - because I bet she will amaze you in her recovery. Personally I believe recovery from a brain injury takes years and years and especially because your daughter is young and her brain is young, you will continue to see improvements for a long time.
Only the passing of time and getting used to your 'new normal' will help you. If there is a brain injury support group in your area, it might help you to go and talk to other parents there? The other thing that helped me was to educate myself on the brain and recovery from injury. That empowered me and the more I read, the better I felt.
My heart goes out to you. It's a slow process but it will get better.

As long as your little girl is alive…there is always hope! I have seen soooooo many incredible medical advancements in the last 24 years since my bleed. I just know the future will bring many more!!!

Your daughter looks so sweet! I’ve shed a lot of tears because I long for the person I used to be. But the funny thing is that slowly, I am morphing into just that person without even trying. As you know, every AVM is different but I noticed a huge difference a year after my AVF was obliterated. Mine was obliterated through embolisation but I think surgery is more traumatic. For me, it was difficult to even carry on a conversation with another person. I did it but I felt like a ping pong ball was bouncing around in my head. It took every bit of concentration even to have lunch with someone. Every day it became a bit better. I know I sometimes come across as preoccupied but it really is I just have to concentrate on one thing at a time. Your daughter has not reached her one year anniversary yet so there is still time. Even after the one year mark, ppl make progress up to 10 years. I think the fact your nearing the one year mark is what is alarming you. Your asking yourself “what, is this as good as it gets”? I thought the same thing at my one year mark. But I noticed more of an improvement after the one year mark so don’t worry just yet. I swear these brain things take time to heal. It will get better! don’t give up Hope!

Thanks so much. As for the homeschooling I have to be honest and say that I just don’t know that I could do it. I am not sure that I could have done it before Kennedy got sick. I admire parents that can do it but I just don’t know that I have the patience for it especially when I have a day like I was having when I wrote the above. I took a few hours for me yesterday and just had a little alone time and it has helped a lot. I explained to my husband that I really need to do this probably once a week. I love being with Kennedy but since I had to quit my job to help with her recovery I really don’t have any time to think about anything other than Kennedy. I feel much better now and am so thankful that I have people like all of you to talk to. Thanks so much!

Thank you so much. I don’t know of a group but I will check into it. The dr told us her recovery was going to be a marathon not a sprint. Boy was he right!

You are so right. Thanks so much!

I think you are right about the one year mark scaring me. She has come a long way but I guess I was just hoping that I would start seeing some more of that old personality coming back thru. I feel so guilty when I have days like I was having when I wrote the above. I know that I should be just thankful she is here and has recovered as much as she has. The PA that works with her neurosurgeon reminded me a while back that we also needed to take into consideration that her last surgery to put her bone flap back in was Nov. 10th and that even though it wasn’t as major a surgery as her other two it was still surgery on her brain. I guess if you look at it that way her recovery has even been a couple of months shorter. Can I ask you how your short term memory is? When she came home hers was really bad but I have noticed it has gotten better but some days it is better and then the next day it’s like we took a step backwards. Thanks so much for listening.

Thanks Jim for all the prayers and support!

Dear Krd- it’s funny that you mention that you feel like she is going back because I am having a horrible day remember names of anything. I’m blanking out on names in general and name of car repair shops. I had Apashia and I still have bouts of it, but only when I have bad days. I take vitamins for my memory as well as other vitamins but you have to clear all things with her Doctor because vitamins thin the blood. My AVF has been obliterated so I am on NO RESTRICTIONS.
You can’t compare me to your daughter. She has had 3 surgeries on her brain---- I consider all brain surgeries traumatic, although embolisation is a less traumatic type of surgery. I know you are searching for definitive answers but as much as i would like to, I can’t give them to you. I believe with all my heart she will make a full recovery. She has youth on her side. I think your surgeon is correct in starting the one-year mark after her last surgery. See part2

Part2. I feel like my brain was so messed up by one surgery that she been dealt a heavy blow with three surgeries. One year and one month from my surgery, I felt like the fog was lifted from my brain. That was me. She may take a year and 4 months or one year and six months. All I am saying is its still too early to tell. She still has time. My niece had a brain injury when she was 5 years old(car accident). The doctors gave her a 50/50 chance of survival. She recently just graduated from College. I say this because if she suffered any damage to part of her brain the other parts may be able to compensate for it. My heart goes out to you and your daughter. See part 3.

Part 3. I know that as a parent you would like to do something to help her. I don’t know what your belief system is and I make no judgements. You can pray(to God or the Universe) every night for a full recovery. If your comfortable doing so, you can put you hands above her head and set your intentions for a complete healing on the brain. You do it when she is asleep or you can let her know you are doing it. I took Reiki hand on healing classes, healing touch classes, and attending a healing school in France. When my kids were little, they used to request healing when they were sick. She may like you doing it. Its something you could do together every day. I hope this post helps you. Feel free to ask me more if it’s not clear. I’ll pray for your daughter every night.

It has helped. We are firm believers in God and I know that she is here because of Him answering so many prayers that were sent up for her. I do believe that her neurosurgeon was great and I believe that he used the talent that God gave him to help save her life. She has recovered in so many ways so much quicker than they expected. Her dr uses the word amazing every time we see him. Dwayne and I prayed Sept 9th for a complete recovery and I still do believe it but I have days where the devil whispers to me that it won’t happen nd I listen. Being patient is just so hard. I read so many stories where it seems kids recover so much faster and the deficits don’t seem as bad as hers and while I m happy for them I am also jealous. I know it seems to depend on many different things with the avm, size, location, treatment, etc. This journey has just been so emotionally hard that some days I just need some extra hope. I get that from people like you so thank you. This site has helped so much. I pray nightly for all the people I have met thru this site! Thanks again!

Dear krd,

I understand how difficult it must be for both of you and your circumstances. When you joined our community, you found a huge source of emotional support in me, as a former crisis counselor who has focused his training and years of counseling experience on helping fellow AVMer's cope with their situations. Do not hesitate to contact me at any time in any way possible...by E-Mail- ■■■■■■■■■■■■■■■■■■■■■■■■■, by phone *82 724 ■■■■■■■■, or here in our group in the chat room. The good Lord let me survive, and brought me here to help, encourage, strengthen and support my fellow survivors and uplift them with my friendship and encouragement. You are no longer alone! Best of everything for both you, your precious daughter, and family unit!

Sincerely,

Rob Forsythe

Mom, you have ever right to have bad days, but your baby girl needs your support and positivity. Please count on us to release your feelings and vent to us anytime you want! We are here to support you, Mom! Your daughter will be in my prayers! As she is so young, she will heal faster, so stay Strong!

Hi Krd-This is certainly the place for emotional support. It's good to see you raeching out to the community. I think anyone with an AVM has asked why me, why now, how come i'm not better, nobody understands what I'm going through, are all valid thoughts, felt by all of us at one point or another. Sometimes recovery takes longer than we would like, but that makes us fight harder to get better and heal. Your close friends and family should understand, or at least be a source of comfort to you,as this site can and will be for you. Don't give up and take everyday one day at a time. Always keep the faith, hug your little girl and reach out to your friends here. You are not alone and things will get better:)Hang in there Krd!!