Miss the lives they had before they have ever heard the AVM acronym?
Please don’t get me wrong … My daughter is a miracle child. She’s the strongest and bravest little girl I can imagine.
Flash back 4 years: I had a good and rewarding career, middle class life and three children who were busy and exciting.
Now: My career is looking out for my AVM daughter (which does allow me a minimum-wage hard-labor job), low-middle class with few or no chances for a vacation and three very different children. My oldest is now a young adult glad to be out on his own in another state (still breaks my heart). My middle child is 13 and anxious to have a social life and can’t imagine being home on a Friday night. And my rock star, who struggles with every aspect of school, has daily headaches, has an extremely short fuse, refuses to eat most foods for some unknown reason, has many accommodations at school that she won’t use because she’s embarrassed and has to be monitored for a return of her AVM or seizures.
I am told I make things worse for her because I worry. I am told I make things worse by getting second opinions when I have questions about a diagnosis. I am told she needs someone she can trust.
Guess it puts me in my place – no idea where it is.
Tina, Don't be too hard on yourself. As a mom we always worry about our children - comes with the territory. If a second or even third opinion is what you need then go for it, get as much info that you can. Sometimes I will go into my room & just listen to music I haven't listened to for decades or go for a very long walk just to kind of chill out from everything. I hope that you can make some special time for yourself, to just let things go. It's amazing what a good cry can do for you!!!
I have to agree with DeeDee, don’t beat yourself up. Moms worry, period. I will say this though. It doesn’t help you or your daughter to think about what was before the AVM. It’s very natural to feel and do that, and it takes plenty of time to get there, but it does happen. That’s really hard to hear. But it can help a lot. I know it’s hard, but try to focus on the things she can do. Second opinions? Sure! I’m all about that. Even some doctors don’t know about AVMs, so ask one that does. We even have some commonly asked questions on this site at http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurg.... It’s a global list, but feel free to customize it to your daughter’s experience. Best of luck and know we always have your back. ;J
Hi Tina.......its purely my suggestion that...it is a situational demand that u will need to play the role of 2 people simultaneously, in ur daughters life....one is the mother n the other is a trust worthy friend.... ppl never feel odd to be around with loving n caring friends...but the problem for u in this role would be; u wud be often reminded of ur motherhood when behaving like a friend...its only how strong u can make urself..that will decide how much comfort ur child will njoy.... having said all this i still know EXACTLY how much pain n totally different life changes..... keep faith.... god does everything for a reason...take care... Santhosh :)
Of course I do! I'm speaking as the person with the AVM and as a mother. I miss being healthy and being able to take care of my family the way I did before I became disabled. I feel badly about my husband and daughter having to take over most of the things that I used to do with them...and I worry that my children won't remember the things I did with them (cub scout leader, chaperoning trips, or even driving them and their friends everywhere!). I don't want them to remember me as this sick lady who was dependent on everyone to go anywhere.
You are only human...of course you (and the rest of us) miss those easier times! As long as we don't dwell on them, we will be able to go on being strong for our families and ourselves.
Oh, and by all means continue to seek second and third opinions!
I feel the exact same way. What I wouldn’t give to go back to the way things were before Sept. 9, 2011. I thought my life was stressed then but now I know that I should have been thankful for that life. I still feel so guilty for feeling this way because Kennedy is alive but I miss the old Kennedy. There I said it. I hate seeing her struggle. I hate seeing her cry because school is hard and it used to be easy. I hate that I had to quit work and we struggle on one salary now. I hate AVM’s and the fact that my child was born with one and now is so limited on what she can do. With all that being said, I can’t change what happened. I just have to keep praying that she will continue to improve and have times where I just go somewhere and scream. I wouldn’t wish this on my worst enemy. It has been the hardest almost 19 months of our lives. Please know that I understand completely. If you ever want to message me or even call I am here. Take care! Kim
The flowers are more fragrant, the sunrises and sunsets more spectacular, friendships more valuable. Facing one's own mortality and how tenuous life's thread truly is has given me a life and an understanding of life that most people could never understand. We can't be wasteful with life but you can't be miserly either.
I'm coming at this from the perspective of an AVM survivor. She's just as afraid and worried as you are, but because of her age probably can't express it. You say your old life is gone...so is hers. Even though I am a survivor, I have felt like a totally different human being since my surgery. I was older, and able to articulate those feelings to my family and my doctors. Best way to describe it is "a stranger in my own body" Monitoring, and patience is what she needs right now.
My apologies, there was a bit of confusion in my reply. It was directed to a patient, not a relative/caretaker. I misread the original post and responded as such.
Have you tried counseling for her? I was very angry when I had mine bleed. I felt like I missed an entire month of my newborn’s life. Counseling really helped me work through my anger.
A friend of mine lost a baby at 20 weeks into pregnancy. Her older children (ages 2, 4, 10, 16) were crushed. Counseling greatly helped her kids let go of the anger of the loss and move forward.
As you can see from all of the replies that you are by no means alone. I am still morning the loss of my normal daughter pre-AVM. Everything in our lives changed the day we first heard those three little letters that have caused so much damage and pain. It has been 4 years since the nightmare began and I can tell you that it does get better. It will never be the same but you will adjust to the new “normal.” If I didn’t worry and ask for second opinions I am sure I would be called a neglectful mom. Never doubt yourself or you inner voice. Because you and I and every mother on this site was willing to move heaven and earth our babies are alive and we can help them cope with the difficult hand that they have been dealt. Keep your head held high and know that you are not alone and on this board you have found plenty of people to offer you support. Take care!
As a mother and a survivor I totally understand how you're feeling. As a mom I can also say I'm so glad it happened to me and not one of my children. I can't imagine how difficult it must be to watch your child go through this. You are doing an incredible job and fighting right along with your daughter. And I'll say it again, don't be so hard on yourself. No one gave us a how-to manual when we had children, let alone a child with this rare condition. I think she is lucky to have you!
I truly feel for you, my sone had an AVM 1/7/11 age 8, we were told to say goodbye I prayed so hard that I was not saying bye or leaving the hospital w out him. 2 years later now he is doing much better his right side still weak in the hand, and hpyerext rt knee wears 2 braces, he use to give me a hard time about school, at 1st than I got him a TSS ( like he own escort) at 1st (for about 6 months ) he thought she was a student teacher, that just sat by him and followed the class everywhere (but was actually asisting him only)...after a while he asked if she was really there for him, I told him the truth, he realized that school life was easier for him as she kept on track in all the classes and wasn't losing his place anymore. He is back to straight A's, but at home he does break down short fuse and acts like a baby at times, but he is here and its our job to help them worried about them and do anything to help them even if they dont like it. God Bless you and your daughter, its a miracle they are here! :)
Thanks for understanding, everybody. There are some days that feel almost normal. Then there are days when the half-hour search for the correct shoes takes a toll.
Teachers may end up having to teach my daughter how to use Braille. Her vision problems and headaches from AVM making reading and eBooks very tough. She’s been working on typing for a year. She’s up to 7wpm. She’s been learning some Braille letters and really seems to be taking to it, so that appears to be our next step.
We had an IEP meeting a couple weeks ago. Her IEP only addresses visual deficits. Four years after the first injury, these people were commenting that her executive functioning appears to be the highest priority. I managed to avoid laughing out loud (at the novel concept of just now acknowledging this).
I read an article the other day that talked about the grieving things like losing the child we once had and lost to a brain injury.