Prayers Needed for my Grandson

[jazzieal]

You just quoted my very favorite quote of all times!

P.S I am trying to figure out if I am the fanatical or the regular????

Well marion I would say we are more fanatical than regular...and crops you cant be opposite because you are right there in the middle of the fanatics LOL...and besides we are the "Chatterboxes" LOL..
Thank you Terry for the sweet comments..they are treasured..I love that Saying about the Cancelled Check..ive saved that and plan to print it and put on my fridge..Im glad you found your way to SBM and Im glad you made the choice to be a regular..you will be in the fanatical group before long..I started out in the occasional group and look at me now!!!
I loved smile's comments..she summed up everything I think all of us feel..
Andrew is doing good..he had a good week last week also...his allergeys seem to be better and he's not having to be suctioned as much..Have to share this with you all..Andrew makes this , for want of a better word...snorting sound...kinda like when you need to blow your nose and dont have a tissue...but louder..usually when he made it you had to suction him or give him a breathing treatment..but we started noticing that when we talk to him and then stop..or leave the room...or move away from the bed..he will make that noise..and there isn't anything wrong with him..sometimes when we walk thru his room and say something to the nurse he starts snorting... we have decided it is his new way of
communicating with us..he used to cry out with this funny sound..like when we turned him or messed with him but he stopped doing that a long time ago..now he snorts..he will try to bring his eyes to focus on us.. sometimes he makes it.. most times not..and he makes this noise not all the time but a good bit...we havent gotten the smiles again but we do get to hear a noise from him from time to now and that makes us happy...he was 15 on March 27th..doesnt seem possible that he has been this way for 13 years..on the day he got hurt they told us he would not make it thru the night...hes a fighter..always was and always will be...and he continued to prove his doctors wrong.then..and now...hes a big boy but in my mind he is still 27 months old..I see him but my brain sees him as a baby..
he will always be a baby to me...
Big huggs to everyone..love you all Linda

[TerryW]

Some great news for us Jazz - although he could have kept up with the smile - typical teenager but the 'snort' can be heard and can attract your attention. I am one of those that believes that communication with people in Andrews position is absolutlety imperative. I was always totally convinced that Adam (the young man I worked with years ago) could hear quite well and he too responded (on occasion) in his own way. I recall the day he smiled for the first time (that symbol of his abilities didn't last too long - it was as though the effort required was just too great).

We used to talk to him absolutely normally without being patronising or sounding pitiful or depressed and yes - we even showed annoyance with him if he was being a bit 'bloody minded' during his physio periods. We would tell him what was happening in the world etc. we even used to talk about the weather when we ran out of other things to talk about. I sometimes thought if he could have talked his first comment would have been - "Shut-up the lot of you and give a guy a break - sheeeeesh!"

Thanks for the update and keep them coming on a regular basis if you are comfortable doing so sweety.

Terry.

P.S. I agree - Smile hit the nail on the head!!!!!!!

[pkdoll]

This is really strange pkdoll....I work in a residential post managing an elderly/disabled housing complex. I manage a team of staff each with their own complex which is where the difficult part requiring assertiveness comes in! We call it Sheltered Housing in England, they live independently but support is a 'pull cord' or button away. Is that the same as you? (PS You have a good husband there!)

Eng-that is not quite the same--what you are describing is called assisted living here. What I manage is actually a low income government subsidized housing for elderly/handicap--but they live independently. But close enough-

[jazzieal]

Some great news for us Jazz - although he could have kept up with the smile - typical teenager but the 'snort' can be heard and can attract your attention. I am one of those that believes that communication with people in Andrews position is absolutlety imperative. I was always totally convinced that Adam (the young man I worked with years ago) could hear quite well and he too responded (on occasion) in his own way. I recall the day he smiled for the first time (that symbol of his abilities didn't last too long - it was as though the effort required was just too great).

We used to talk to him absolutely normally without being patronising or sounding pitiful or depressed and yes - we even showed annoyance with him if he was being a bit 'bloody minded' during his physio periods. We would tell him what was happening in the world etc. we even used to talk about the weather when we ran out of other things to talk about. I sometimes thought if he could have talked his first comment would have been - "Shut-up the lot of you and give a guy a break - sheeeeesh!"

Thanks for the update and keep them coming on a regular basis if you are comfortable doing so sweety.

Terry.

P.S. I agree - Smile hit the nail on the head!!!!!!!

We talk to Andrew that way too..but I have a hard time not talking to him like a baby because to me his brain was damaged when he was a baby and somehow it doesnt seem like he would have the mind of a 15 yr old..we get our days and nights mixed up around here because the house never completely shuts down..I have terrible sleep habits but like you when I get sleepy I sleep..but sometimes I go and talk to Andrew and tell him he needs to go night night and so on and he will close his eyes and sometimes goes to sleep so I know he understands some of what we say...( or my voice bores him so he goes to sleep)...drs tell me he doesnt but they dont know EVERYTHING..he hates taking a bath..always has and still does...you can mention bath and he will close his eyes and play oppossim..lol

[TerryW]

Oh Jazz, you bring back so many memories for me - not unpleasant ones. I understand what you are saying about his age at the time of the accident - Adam was 23 when he had his accident so it was so very different. Adam used to do the same thing when it was bath time or when he required more personal attention - he used to show he was embarrassed at these times (understandably) and all of these needs were attended to by his mother, father and one chosen nurse. I was so touched reading that you go in and talk to him the way you do - I have only told one person within SBM (through a PM) but I now suffer brain poisoning from too much chemotherapy and I am quite self conscious about it - I feel I can mention it to you. One of the results is that I have become a very emotional person and unfortunately (due to the poisoning) I can't control it but I can picture you spending precious quiet times with your baby - a tear has formed. You are a very special person and one hell of grandmother.

F2F love, Terry.

P.S. I'm no doctor but no one has been able to convince me that people in the situation that Andrew is in can't hear - his age at the time of the accident may mean his language skills are as they were at the time of the accident but no matter how much criticism I am confronted with - I BELIEVE THAT THE HEARING WORKS JUST FINE IN THESE SITUATIONS.

[jazzieal]

No Terry...Im not special..nothing about me is special..Im just a grandmother and every grandmother would do the exact same things I have done....
Im sorry the chemo has caused you so many problems..its kinda like chosing the lesser of 2 evils I would imagine..you never have to be self concious here...emotions are not bad things..I think a man with a kind heart..who isnt ashamed to shed a tear, or say a kind word..is very masculine..sure doesnt make him any less a man...just the opposite..I never told my grandsons that boys dont cry..that men dont cry...that you are a "sissy" if you do...I tried to teach them to have feelings and never be afraid to show they have emotions..my middle gs has fallen in love for the first time and it amazes me to see him with the "love of his life"...I see that he paid attention to some of the things I tried to teach him.....LOL..

[spanielmom]

Jazz:

Had my monthly newletter from Women of Faith. This article was especially moving and I thought of you immediately. Hope you might enjoy reading it. You are everything this newsletter talks about and more!

http://www.womenoffaith.com/newsletter/april07/Devo.html

Love Spanielmom

[jazzieal]

Thank you for passing that along..it was a very moving article..

[eye]

When I want to be thankful for what I have, I just half to read all these's letters. When I want to see how love is shared among strangers I come here. When I want to be reminded of how we all want the same things in life (to love and be loved) I come here. We cry together and laugh together. I thank each and every one of you for proving that we are indeed brothers and sisters. Thankyou for keeping me humble............God Bless you all..............Lois.....Smilie........xoxoxoxo

OOps smiles did I see the word God.See yah do believe (yah slipped out).Well Smiles now you know why we are cousins.God did this and we both think alike at times(yegad)Terrys words are so touching.It wakes us up lekes a fresh morning breeze.I to live for today as tomorrow never comes.We are totured by the past so why not stay here at the present and make each present day a happy one and a safe one.
Jazz you are one Hell of a Lady and Friend. I have gotten very attached to you.Also to eng & sue & crops.we sort of bonded very tightly.I love hearing from you and all about Andrew. I have to tell you the hearing is always there unless you are deaf and cannot hear. You may think me silly but I even talk to the patient after they dies and I open the window so their spirit is free.I feel those last seconds after death that they can still hear.I knew a women once in a coma for 10years and when she woke up she knew everyone by name and what they actually said about her.I hope I have not mispelled.I do have that problem as well I may write odd stuff but if I offend everyone---please forgive. I have not been right since the surgery in 2002 and feel I have a little damage but of coarse the dr.say it is imposible. But I came out as a different person and now sometimes it is hard to get people to understand it is the new me.Some are cruel by saying at work I am faking to get out of pouring medications. But I felt I was unsafe to do this and spoke up.Now I just do the nursing part.Soon to be retired.But I may keep name in for casual nursing for mad money haha if they will have me.I am very nervous as sometimes I proof read and do not see my mistakes.I just hope I do not say I wish you were dead like I did in one letter and had some explaining to do ha ha.Sometimes what i am thinking will come out different on paper and I cannot see that difference as when i read it I am reading what I thought. I sure can get into trouble.They make fun of me at work as somedays my speech gets mixed up real bad and I get stuck on a word and they think it is funny. Little do they know they are hurting me deeply.peopel can be so cruel. So it is so nice to have people like you who balance my life very nicely.Thank you for being my friend jazz xo xo in a time when I was so dispair.You are one heck of a lady. thank you Terry for all your kind words. we have a nice group. Some may just set and read while others want to just chat. But it is so nice to just have a place to go when one is troubled or one cannot sleep.wonderful place we have. Guess I wrote a book huh.Luv yah all xoxoxooxoxo

[TerryW]

eye,

Reading your post was like reading my own story. In this thread (a couple of messages back) I made some comments to Jazz about brain damage from my chemo and it wasn't until this morning it dawned on me that I had made that announcement to everyone - I had gotten so into having a private discussion with Jazz over Andrew it slipped my mind that it wasn't just her and I on this thread. I am confronted by exactly the same things as you are regarding not having the brain I used to have. I read and re-read my post about 10 times looking for errors etc before I post them and even then I always worry I will be misunderstood.

I won't bore you with details but I have had more chemo and radio therapies than many because I have not been able to get my non-Hodgkins lymphoma into remission. Over a period of 9 years I spent a total of nearly 40 months on chemo to keep it as controlled as possible and as a result I have developed 'chemo-brain' - poisoning of parts of the brain from all the cyto-toxins. I have almost identical things happening as you do and yes, people can be very cruel at times. These toxic chemicals have also effected both my peripheral and central nervous systems. If I get upset about something it seems to be worse so I have become a bit of a hermit in a way to protect myself.

I think one of the reasons I write such long posts in here is because I want to keep using every part of my brain that I can and that includes my writing because it means so much to me. Sometimes I am unable to drive (on bad days) because I am not confident enough safety wise. Sometimes I won't post for a few days because that is when I am having a bad time with my brain and I make so many mistakes I just give up because it takes so much time and effort to keep going over everything fixing the errors. For example, this post has taken just on an hour and half to get on paper so far.

Any way, I just wanted to let you know that someone knows EXACTLY how you feel and you have this stranger from down under to say - I'm with you kiddo!

Kindest regards,
Terry.

[eye]

eye,

Reading your post was like reading my own story. In this thread (a couple of messages back) I made some comments to Jazz about brain damage from my chemo and it wasn't until this morning it dawned on me that I had made that announcement to everyone - I had gotten so into having a private discussion with Jazz over Andrew it slipped my mind that it wasn't just her and I on this thread. I am confronted by exactly the same things as you are regarding not having the brain I used to have. I read and re-read my post about 10 times looking for errors etc before I post them and even then I always worry I will be misunderstood.

I won't bore you with details but I have had more chemo and radio therapies than many because I have not been able to get my non-Hodgkins lymphoma into remission. Over a period of 9 years I spent a total of nearly 40 months on chemo to keep it as controlled as possible and as a result I have developed 'chemo-brain' - poisoning of parts of the brain from all the cyto-toxins. I have almost identical things happening as you do and yes, people can be very cruel at times. These toxic chemicals have also effected both my peripheral and central nervous systems. If I get upset about something it seems to be worse so I have become a bit of a hermit in a way to protect myself.

I think one of the reasons I write such long posts in here is because I want to keep using every part of my brain that I can and that includes my writing because it means so much to me. Sometimes I am unable to drive (on bad days) because I am not confident enough safety wise. Sometimes I won't post for a few days because that is when I am having a bad time with my brain and I make so many mistakes I just give up because it takes so much time and effort to keep going over everything fixing the errors. For example, this post has taken just on an hour and half to get on paper so far.

Any way, I just wanted to let you know that someone knows EXACTLY how you feel and you have this stranger from down under to say - I'm with you kiddo!

Kindest regards,
Terry.

Awe you are so sweet.Glad you know what I mean. I went to work on 12 hour day and had a reall hard time. I went to my supervisor to let her know I am not on medications as I had a hard time to focus and slurred speech and stuck on words. As usual same girl made fun of me. But hey I believe in carma.So next day I traded shifts and did a night shift.Some days it is hard to function and those are the days I would like to crawl in a hole and hide till the storm passes.Today is a good day so i live for today and we are going to have a family thing and watch some movies and make pizzas
I do not mind you discusing your health. Keep us informed okay.By the way you are an very intelligent man when it comes to writting. I look up to you for that.Have a nice day Terry

[makeyesup]

Terry

Terry,

We all have memory or brain problems, many not caused by anything except age and just plain not concentrating on what we are doing. Your words are from the heart and I sincerely believe that everything comes from there. The brain is only a conductor for our true selves.

You are a delight to have around. Don't ever feel that something you say could be construed incorrectly. We are all different and unique and everyone here believes that they are all one family.

Maureen

[jazzieal]

My dad had a brother that had CP..my grandmother told me he got into many a fight because of kids making fun of other kids..because of Buddy he was really sensitive about that..and was all of his life..my parents taught us to never make fun of any one because they are different or because they are fat or skinny or whatever..everyone is different, some people take it as a joke..some people take it as an insult..and it hurts others so bad they never get over it..and after awhile it piles up on them and it affects their entire lives..such is the case in what happened at Collumbine and Virgina Tech and countless other senseless murders...especially where children are involved...would it not be wonderful if "just because we are all human beings occupying this planet together" that we would learn not to say those unkind things or make fun of anyone for any reason..there are pleanty of other ways to have fun that is not at the expense of anothers feelings..eye and Terry, we understand your problems and you wont ever be made fun of here..eye I have learned when you are having a bad day..I can tell it and I know it will pass..Terry we are learning you dont post when you are having a bad day..but if you want to.. dont ever worry we will take anything wrong..we understand...Im not saying dont joke around or kid with others..just know before you do how that person is going to take it..its mostly the children I worry about..I dont think other kids really understand how badly and deeply their words go at hurting another child..I think a big start to ending all the school violence would be a class ..starting in kindergarten, teaching this to kids..Ok my friends Ive ranted enought on this subject..gotta go..love and hugs to all..jazz

[nanwu]

I taught my kids at a very young age to respect everyone for there own unique abilities, I was a care mum for many years (caring for kids with disabilities (I hate that word) so parents and other family members could have a break). My children loved our extended family. and looked forward to all the happiness that the children who came to stay with us brought with them. It has helped them to accept people from all walks of life and all abilities and I am so proud of them for that.
Never be ashamed of who you are for everyone is unique and has something to offer some one else

[TerryW]

Maureen, Jazz, Nan

That's why I post here - there is something totally indescribeable about this community - something moves within it linking the hearts of many who have never met - providing a sanctuary for those who need it - I'm encouraged - thank you.

Terry