My 7 yr old daughter had a bleed and surgery to remove an avm last Sept. We spent 74 days in the PICU and 30 days in peds rehab. Prior to the bleed school was very easy for her. She was reading well above her grade level and was very good in math also. As you can imagine things are very different now. She is having to learn things over and becomes very frustrated because she knows she should be able to do it. She has problems writing because of the weakness on her right side which also frustrates her. Although I am so thankful that she is here with us because based on medical facts her being here is a miracle, I find myself having trouble understanding why this happened and if she will ever be the same as she was before or even close. I feel extremely guilty for these feelings. God gave me back my child and I know that should be enough so why do I have days where I feel this way? I keep telling myself that we are only 3 months into her recovery from her last surgery and that she is still improving but I still have days like today. Any comments would be appreciated. Thanks.
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You don't need to feel guilty, especially not here. We all have days when we feel like that. Let's face it...what happened to some of us just plain sucks! And a 7 year old having to go through this is very unfair. It's sometimes hard to be grateful to be alive when we struggle daily to do the things we used to do with ease. I get it! But yes...she is very early into her recovery and she is young and resilient. Who knows how much more she'll improve over the next few months, years? So give her lots of hugs and tell her we all wish her well.
I know how you feel. I also have a love one that is a survivor. She is different then before tha avm. She has short term memory loss and is very tired most of the time. It is hard to see them changed but grateful they are here. It’s a rough situation but it is manageable. Having people out there that know and are going through similar situations help. And of course you feel guilty but that is part of this crazy life we are in. just remember there is a place to go to talk and you won’t be judged. Someone out there has gone through what you are and can relate and understand. Have faith…
It is my casual (non-medical) understanding that recovery will be represented by a new, yet complete individual. Hence the Butterfly logo and tagline.... "what the caterpillar considers the end of life, the Creator considers a miricle additionally, I consider myself approx. 60% the same girl I was before... the paralysis on my whole left side really sucks, though! other than that, i am still a stranger to myself most days but physical therapy and perserverance are working to correct that issue! you will be fine! Just b happy you get to embark on this journey with her! Be a friend and a supportor! i think the other thought here is "Let go and let God." Good luck and believe!
cheers,
Nicole
I think you are having natural and normal feelings. You are doing the best you can to work with her through this, and there is nothing you can do to speed up the process. As long as you are there helping her through the frustrations, you are doing the best job you can. Do not feel guilty because later in life when she is getting married or graduating from college, she will thank you for being strong enough to help her through! Best of wishes!
I recently met 4 AVM survivors with varied stories and varied degrees of recovery. Frightening to me as my 19 year old daughter was diagnosed less than a year ago. I walked away from that night in awe of each of them and realized that even if somem of the worse case scenarios happen, things can be overcome. One young mom told me that even though she is not the same as she was before, her worst challenge is diapering her little ones. She won't complain because she is grateful to be able to be a mom. You are likely and naturally mourning what was and hopefully will find a way to embrace the improvements she is making now and will continue to make in the coming months. Lots of people here truly understand when it seems like no one else you know does. You may need to remind me of all of this in the upcoming months! So glad to hear she is recovering and improving.
Thank you all so much for taking the time to help me feel better. Your comments were very helpful. It is nice to be able to talk to people who really understand what you are going thru.
I am glad that our comments were able to help. I hope you can continue to feel comfortable here. I know I do
I am sorry you are feeling guilty but there is no need to. Three months is not a long time for a brain bleed. I can’t promise she will have a full recovery, but it the norm to be where she is at for the 3 months mark. She has youth on her side so that is another positive. I wish you and your daughter the best. Keep us posted on her progress. I think you will be pleasantly surprised when you see how far she has come at the four month mark.
It is hard to see your child at any age go through these kinds of struggles. As many have already said 3 months is not a long time. She is young and the brain is capable of remapping itself. The brain needs time to heal. Inflammation can be a big factor in hindering our healing. I stay away from most diary and I have been taking turmeric and just started to take glocosamine grapeseed extract. Just make sure any supplements you get do not contain soy. I would check with her doctors first. Our brains do need good fats such as olive oil, coconut oil, and I use kerrygold irish butter which is made from grass fed cows. There is also a free site that helps with memory www.gamesforthebrain.com
She may find that she is just playing games but its actually working her brain, I also do those word find games. I do crosswords which I never did before I start it and then my husband does part of it and we keep passing it back and forth. There are many different ways to learn and trying something new like a new language can be fun for both of you that way she does not feel pressure cause it is not something she could do before and you can do it together.
Please keep us updated on her progress and also how you are doing
Angela
Hi I can totally relate to how you feel. My son was 8 when his avm ruptured and we almost lost him. At first all you want is for them to survive, but as time goes on you want them to be able to remember, to speak properly, to get back to normal. We are lucky, Jake is almost back to how he was before, but while he was recovering it was so hard, and you do feel guilty for not being satisfied with them just being there! Of course we are grateful to have our children back, but its natural to worry about what the future holds, and that doesnt mean you aren't grateful. Just give it time, give in to the feelings when you need to, and please try not to feel bad about it. Look to the future, we are a year down the line from Jakes surgery and hes almost back to how he was.
Once again I want to say thanks to all. Your encouragement has helped so much. It is such a blessing having people to talk to that understand what you are going thru. Kennedy has had a good week and I am trying to focus on all the positives. She improves each week. This is still very hard to go thru and I am sure I will turn to you all again in the future for advice. May God bless each one of you!
Have faith in what you believe in and it will come in time. Not always in the time we wish but eventually it will. Patience is very important. Glad to hear you are seeing improvement.
I have goosebumps after reading your post here.... I was nine years old when I had my avm rupture.... had to have two brain surgeries then... and then again at age fourteen the remaining avm was gonna rupture so they had to go back in. I also had a lot of weakness on my right side... I could hardly move my right hand and arm... but over time it came back... at 14 my whole right side was extremely weak... that has also come back. It takes a lot of time... patience and persistance. (encouragement from family and friends is sooooo important!!) I truely believe a lot of your recovery comes from your attitude and determination. The drs told my parents I wouldn't live... told them if I did... I'd be paralyzed.... I fought and am here!! I am no longer paralyzed. My surgery was thirty years ago.... and there are days even now I feel like Im still recovering!! Give her a BIG hug from someone who truely understands where she's at!!! I've been there!!
I know i keep repeated myself but thanks to all for the responses. They have helped so much! I have sent messages to some of you and I thank you so much for all your help. I am so encouraged by all your stories. May God bless each of you who are avm survivors and the rest of you who are relatives. Kennedy is so sweet when she tells people she is a miracle and an avm survivor! To us she is our hero! Thanks again. I hope to be able to encourage someone in the future with our story like you all have encouraged me!