Congratulations on all your accomplishments Sommer. That is wonderful. And thank you for your response and encouragement. You are right; it is something that I have always struggled with since the moment I became a mother. But I am definitely getting better about not worrying as much and having faith in the Lord and in my son and all he is capable of.
Wonderful. Your positivity and self-awareness seems to have shown them huh? I couldn't agree more with you about frame of mind inherently affecting recovery and quality of life. Thank you Dave :)
Thank you Patti, sounds like you have had a rough road. My son is very much in the same boat as you with in-patient neuro rehab and the extensive therapy in order to improve his core strength and left sided ataxia.
I am so grateful for this site and the encouragement and wisdom that comes from the survivors and their families. It is truly a Godsend and has brought me a great deal of relief and comfort.
I wish you the best as well :)
Thank you so much for your prayers and positivity. I wish you the best as well. It is certainly comforting to have loved ones to support you and more importantly a faith that will sustain you with life lets you down. I realize things must be difficult for you and I cannot imaging what you have had to endure. But I believe that often times in this life change happens for a reason, and although we may not understand or like these changes God knows His purpose and will eventually reveal to us His purpose.
God bless you!
Than you Alan. Well said and great advice. I will never allow my son to give up no matter what anyone says although with his drive and determination I can't see him giving up anyway. You are so right..positivity and action are key to this process.
Hello John,
Thank you so very much for your reply. My name is Stacey, I am AJ's mom. I think there may have been some confusion and just wanted to clarify this. I am going to respond to your reply by the advice you gave me, which I want you to know I am very appreciative for.
(i)I feel like it is more frustrating for him rather than myself but I have the utmost faith in what the future will bring. Time is the best healer.
(ii)This is something that I struggled with early on. I had to literally sit on my hands not to do things for him that he was capable of doing himself. I have learned how to pull back. I do not want to give the impression that I am hard on my son but I am however adamant about what needs to occur in order for him to do his daily activities and the therapy necessary.
(iii)I am sorry you had to experience such selfishness and unprofessionalism when it comes to your doctors. Luckily my son has been blessed with a great neurosurgeon who has and still continues to be very positive while being completely honest about what can be expected.
(iv)I love your perspective on this and it is in fact memory is something my son deals with as well. Ironically I had head trauma when he was young and my short term memory suffered significantly. So he has been saying "Oh no mom...not again" for quite some time lol. I have learned ways of adapting and over the years do much better than I did when I was younger. I could still watch a movie I have already seen and may not realize it until halfway or sadly all the way through it thinking to myself "Something seems familiar about this" the same applies with the books I read. But it is manageable. As is this situation with my son. I know he is going to be alright and I just want him to have the best out of life and to enjoy and appreciate every single moment.
(v)I realize I am helpless in a lot of ways and really do not understand. Like today he told me to shut up. You have to understand he has never been disrespectful or ever uttered these words to me. He immediately apologized and I think he may have been thinking it and it slipped out. But I talked with him and i know i was getting on his nerves. I wanted him to know that I wasn't mad and I want him to be able to express himself and feel free to tell me at all times how he is feeling. Even if my feelings may get hurt a little we have always had an honest and open relationship and I definitely do not want that to change.
(vi)Kuddos to you for writing a book. That is an awesome accomplishment. I did start him writing journal entries on the computer when he got out of inpatient rehab and came home. He hasn't really wanted to play his video games which is something he loved rior to this event. I also explored some websites on the internet (including luminosity and brain gain website) and have found that the therapy that we do that is interactive is more productive. His vision also plays a part in his gaming and computer usage.
(vii) This is true. I have found that noise interference is a hindrance. It also seems like he has a difficult time concentrating on anything when we are in a "busy" place. This is getting better but then again I am not inside his head and do not know how much he is expressing or masking due to time and adaptability.
This was a very helpful response and thought provoking. Thank you and I wish you the best of luck in the future.
Thanks Al..this is so true.
Thank you Barbara. This is very encouraging. I must not forget I am in the presence of a miracle everyday I wake up and kiss my son good morning.
I plan on continuing and never giving up. I will do everything in my power to make his life better everyday because it is certain he makes my life better everyday by simply being in it <3
Yeah, that is not exactly therapeutic encouragement. Way to go on proving them wrong, although I know that accomplishment means far greater to you than those who dismissed your recovery in the first place. I appreciate your kind words and positivity.
I pray for the best future possible despite what people may believe. I think it is commendable all that you have accomplished and all I am certain you will continue to.
Thank you Susan.
I pray that your surgery went/will go well. I also pray that your recovery will be everything you hope for and more. I am sorry for my naivety but I am unaware what an AVO is. I hope that it will forever be a thing of the the past though. It seems as if you have been dealing with this for a very long time and change is welcome. I hate that you had such a bad experience before and cannot imagine how you endured it. It is messed up. I believe like you that the body has amazing ways of dealing with pain and recovering from the blows that life may throw our way. I have full faith that my son will be restored and healed. It is simply a matter of time.
Be blessed Jan!
Love your attitude Lesley. I agree with you and Barbara in so many ways. I have no plans of losing hope and must remain the strong force backing my son as I am sure your family has done for you. We are fortunate to have this; I feel for those that travel this road alone.
I pray for the best in your future.
Thanks Kat.I am trying to provide these things for my son regularly but also trying to learn how I can be better at it. I still have a lot of questions and emotionally I am at a complete loss in how to help my son other than encouragement, prayer, and support. I have also talked with his neurosurgeon about him seeing a neuropsychiatrist or someone who specializes in dealing with emotional issues with TBI's.
Thank you for the wonderful advice and I wish you the best.
Aww I am sorry to hear that. Broken bones are no fun. I fell with my son while walking with my son and we both landed on my arm. Now it is broken. This makes caregiving very difficult but my son has come to rely on me for everything and is not very receptive to anyone else helping him.
It sounds as if our loved one are a lot alike in the aspect of needing rest.
Support group huh? Has that helped you?
Thank you Frank for the exercises. I am always looking for new tools for the toolbelt lol. We have tried swimming but only twice and he has yet to actually swim. He has just got in the water so it may take some time.
His AVM was in the left portion of his cerebellum so balance and coordination is a huge issue for him as well.
I am learning a lot and making necessary adjustments.
Thank you for your well wishes and I pray your therapy continues in a positive direction as well.
Thank you Susan for your response. My son is getting along rather well. Everyday is a learning process for us both it seems. I am sure one of the biggest issues my son deals with similar to yourself is people not understanding. I do my best as his mother but I am certain that I have no clue what is really going on in that pretty head of his.
I wish you the best of luck in your recovery process Susan. Stay positive and encouraged in all that you have already accomplished and all that is to come.
Hello Allison and thank you for the reply, it was touching and moved me. Happy 7th birthday! I must say I am quite impressed with you optimism and your drive. You are force all of your own. You should be very proud of yourself with every accomplishment.
I am very interested in your reference to manual physical therapy. I admire the fact that when you hit a plateau that you found another mountain,grabbed your gear and began your ascension to yet another goal mastered.
I don't plan on ever stopping. No matter at what point my son and I come to I plan of pushing forward and encouraging new challenges with support and backing so that he has what he needs to do what you have done.
Thank you again and I pray that you achieve all you set out to so in your recovery.
Thanks Armand, I am grateful for both my children in so many ways and completely understand your love for your kids and the difficulty that comes with the dreaded teenage years lol. My daughter just turned 11 but as a tween I feel like she will be the one I have to work harder at to maintain a good relationship with throughout the upcoming years. I had my son when I was 19 so we kinda grew up together and have always been close. This however has brought us so much closer.
I have explored so many options when it comes to his therapy and recovery process. I have a membership to Luminosity and trust me age has nothing to do with difficulty level. When he had trouble with the site I tried for myself...it was not that easy. Wonder what that says about my brain? His difficulty comes from his vision issues because that boy is smart as a whip. I also feel that his reaction time may be due to the area of his AVM removal. It may be something that I come back to later but I will not be renewing the membership when the time comes.
Thanks again and I wish all the best with your future. God bless you and your family.
Thank you Wendy. Sounds like you are doing good. I think you are right. I feel like it is important that I get past these stupid numbers and projections. I am by no means limiting or giving up on my son after a certain marker hits. I think that rest is definitely key to recovery and I do not feel that age has anything to do with this.
I appreciate all your advice and positive encouragement. You have been wonderful.
Hello Matt. Thank you for your advice. If he has muscle tightness he has not told me about it. I will be asking him and am thinking about encouraging stretching as well before therapy sessions. I am sure as an athlete he will appreciate this.
Sound like you are doing well and I pray things continue to improve for you.
Gordo I feel exactly the same way! I have been touched by all ot this. I have laughed and cried and just been really overwhelmed by all the responses and positivity flowing from such a great group of people. I am very fortunate to have come across this site and know that it will not only be beneficial for my son but has already proven to be essential for me. My son has similar issues as you with left sided ataxia and weakness. But I must say he get stronger every day and he amazes me with his progress. I am excited about the future and this site goes to show that healing has no time limit.