I often listen to a Christian radio network called Air1, and they have these spots on called, "You are not alone."  It's real people talking about their own experiences and how they overcame them.

It reminds me of a post Debby made recently, and also a post about IowaChix losing her husband.  It is very important that people who are dealing with this disease, or taking care of a loved one who has this disease, can come here and get to know other people who are more or less in the same boat.  The worst feeling in the world is to feel as though no one else knows what you are going through.

It's good that this site is here.  I only wish more people "on the outside" knew about and understood what this disease does.  There are still many out there who are alone because they have not found this site.

DM

Diane...beautiful post !!!  I lost my sister to side effects of experimental medication that was treating her luekemia let her live for 13 more years..was 1962 when it started so no chemo, no bone marrow, no many things back then...she was 16 and I was 18 when she past on(1975)...No one to talk to even when I went off to college, no such thing as griefing, therapy or anything...especially for a deaf person like me...so when I posted that post for IowaChix...I knew what she was feeling (much harder when it is the spouse I am sure and I think they also have a new baby, too)...so this site has been wonderful for me....to others...the little smilies that gives hugs seem so real, too.  The live chats seem like everyone is so close.  Here I don't feel alone.
And Diane I have also enjoyed all your wonderful posts, too.  Much love,  carol

What a beautifly post.You said it all Diane.I know how hard it is to go through this with no one to talk to who could truely know what we were feeling. When Kahtleen was diagnosed I didn't have this sight.All we had were some sights we had found with some medical information.Some was good some was horrible. The waiting for surgery was so lonely,and filled with so many questions.Even just the little ones like "how much of her head would they shave",we had no clue and it just didn't seem important enough to bother Dr. Scott with.We then felt so very alone sitting in BCH as Kahtleen's condition worsened.We sat alone with her in ICU just praying for her life,even if she couldn't walk or talk.Having this sight to come to would have definatly been such a help durring all these ups and downs. I'm just very thankful it's here for families now. The process of learning about MM is never ending.I am still learning,and hoping that with every passing year there is more information out there.Thanks for the reminer Diane of how much this sight ahs done for us all.Just think some day our chidlren with MM will probably be here talking to others who have grown up with this disease.And new parents will be learning all about the future for their children who are newly diagnosed.
Mary Grace

yes Nancy, you are right. Like yesterday, my sister was going into a different world. I was trying to explain it to someone,, but I gave up. All I could say was that she seemed to be so lost, and not even realize it. And it broke my heart. I just wanted to sit and ball my eyes out for her, and for me too. She would talk to us about things that made no sense at all. Or we would be talking about something, and she would join in, with not a clue as to what was really being said. Almost like in a whole different dimension. But today, was better.  None of us are alone, thanks to DJ. I always sleep better at night after being on here. Even if it is just reading posts.  I don't feel "alone".

Nancy you are so right! The caring for someone with MM is neverending(especially if they have suffered severe strokes).Kathleen is doing amazingly well BUT that doesn't mean It's not there.We have so many specialists I've lost count.And I truely don't think they understand at school that she will still have some good days and some not so good.As her teacher put it some days "she's on", and some she's not.They seem surprised by this but I'm not and I try to remind them of what she is recovering from still....5 strokes! You see it's neccessary for them to understand so they don't mistake this for a behavioral problem and punish her. would you believe a PT last year wanted to come up with a punishment plan for her if she didn't work hard enough in PT!!!!! Well I can only tell you IT DIDN"T HAPPEN!! Keeping tabs on school and what's happenening and whats not ,along with the appointments ahve become a full time job.I don't remember what life was like before MM now.It's just a part of our life we have kind of settled into.Which is good , because we don't think about it everyday now.It's a lot like the process we went through when kahtleen was born with Down syndrome.The shock ,the feeling alone, the process of gathering any and all infomation we could get,the thoughts what if she didn't have DS and why her,but in the end it became only a small part of who Kahtleen is,and we feel  blessed to have been chosen as her parents. She has added so much to our famlily.She taught us patience,perserverence, and acceptance.As I have always said she is my hero!
Mary Grace

I absolutely understand what you mean! About 4 months after kathleen's strokes and surgery she started Kindergarden.They placed her in a self contained special ed classroom.(she had always been mainstreamed throughout preschool and did very well).Now because she was in a wheelchair she was treated so differently.Like she didn't know what was going on KWIM.She would just "shut down" in that room but when she went into the reg Kindergarden she was a totally different person.Laughing and working just like the other children.I fought a long hard battle to get her totally mainstreamed with an aid, but it was well worth it. She has so many friends. LOVES school, and is doing all the same work they are doing,in fact ehr reading is better than some of her first grade peers.Even though Kahtleen was born with down Syndrome we never really treated her differently than our other children.We also had all the same ecpectations (always with the knowledge that we could ACCEPT anything).Her big brother is her greatest motivator he shows her "no mercy" LOL
We learned a long time ago that her dissability is only a very small part of who she is.Thanks for the reminder....
Mary Grace

Nancy, I so identify with what you said about Mandy being with her old friend and in familiar settings.  I NEVER see Jessica happier than when an old friend calls or (more rarely) comes to visit or takes her out for an afternoon or evening.  When her best friend from college calls her on the phone, she laughs throughout the whole conversation.  This one friend has been especially kind and understanding, and has continued to call and occasionally visit.  The rest of her old friends, from high school and college, have moved on in their lives and most don't stay in touch too often.  Jessica has indicated to me that she feels like people who know her only "after" her strokes, even though they're kind to her and very thoughtful at times, think she's not very intelligent and treat her like a child.  The ones who remember her "before" treat her with more respect, and remember her when she was highly functional.  They remind her of that time, and she loves it.  I try to remember this when I'm frustrated about something she's trying to say or do, and having so much trouble.  I try to remind myself to treat her with the respect that I'd show her if she were a 28-year-old woman without her medical history.
Jennette