Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Hi Kristy: I'm glad to hear that Tim took the news well. If you don't mind me asking, what prompted you to tell him now? Can you share a little of how he responded to hearing he had mds. will be 8 in September. I haven't told her about her mds and I've always wondered how I would know when the time is right? ann (Mom to , mds almost 8 yrs old and 11 yrs old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 hey this is Sherri and Glenda. We new it would go great, Welcome to the group Tim, And e-mail me (Sherri) soon, We love you all. Glend aand Sherri PS. Every thing got so much easier for me when I got this group of kids that had the same thing I had to talk to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 anne, Tim had asked me a few years ago point blank, " Mom, do I have any problems that you are not telling me about because you don't think that I am old enough to understand? " I stood there dumb founded and said, " Yes " . I just wasn't ready to tell him yet! Plus, Tim is a smart boy, and we really didn't want him to use his mds as an excuse. He trys to use his adhd as an excuse! Well, back in April, he came home from school real sad, because the kids at school pick on him alot. And he said that he felt like he was the only one in the world that had the same problems he did, or felt the way that he did! That broke my heart! I told him that there are many people out there that feel the same way that he does! Also, you can imagine what it is like to be the president of an international organization and try to keep it a total secret from a nosey 15 yr old! Trust me, that is not an easy feat! We sat down with Tim and I first began telling him about the non-profit organization, and how it was made to help him and others like him. I explained to him about his chromosones.(he studied chromomsones last year in 8th grade)And, I showed him the mds reserch book. Tim was excited about it all. He took it great! He was not upset in the least bit! There are 2 ways to go about letting your child know about his/her mds. One, just talk about it freely in front of the child from the time that they are diagnosed. Then it will be common knowledge and no big deal.(I did this for quite a while when Tim was young, but then somehow we just stopped talking about it and it became a secret)Secondly, If you need to tell your child about it because you haven't spoke about it before, I suggest you wait for some sort of sign that implys that your child is ready. You know your child better than anyone else in the world! You will know the signs! I don't think that there is an age limit ever, because everyone is different. I pray that this helps you! --- MAN12959@... wrote: > Hi Kristy: > > I'm glad to hear that Tim took the news well. If > you don't mind me asking, > what prompted you to tell him now? Can you share a > little of how he > responded to hearing he had mds. will be > 8 in September. I > haven't told her about her mds and I've always > wondered how I would know when > the time is right? > > ann (Mom to , mds almost 8 yrs old and > 11 yrs old) > > Won't you please consider adding your personal story > on the MDS website today? > http://www.mosaicdownsyndrome.com > ************************************************* > MDS MESSAGE BOARD - > http://www.mosaicdownsyndrome.com/discus > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Dear Kristy, Good for you! I have wondered about that very thing with my own child when he is older. I am so happy to hear that everything went really well and that Tim is OK about it. I will come to you when I need help in the same thing! How about the other kids, do they now know? We have not told about his baby brother's MDS, but have told him about the heart and we pray together each night for further healing of his heart. I just don't want the diagnosis to limit him and I don't want to limit his brother's expectations of him. Well, anyway, that was such nice news today. I am sure you are ever so relieved! Peace, Barb Martz Mom to Jonas (MDS) 9.5 months & 6 years Great News! Hello everyone!Most of you know that I have not told Tim about hishaving mds. Well, today my husband and I sat down withhim and told him. Finally!!!!!!!!! He took it great,had alot of questions, and we all made it through justfine! I know that this will be especially good news tothe teenagers that have been dying to talk to him! So,now you all are welcome to talk with him about it! Ifeel as though a great burden has lifted from me, andnow I don't have to hide all my nonprofit work! LOLJust wanted to share the good news!=====Kristy Colvin:President (mom to Arron 19, 16, Tim 15(mds), Stevan 14, and Garrett 5.) The only handicap a person has, are the people around them!__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 In a message dated 8/13/01 5:27:03 AM Eastern Daylight Time, judy.green@... writes: << She's just like any 8 year old curious about herself - wants to be 18 so she can have " boobies " and boy friends and go dancing in night clubs like her big brother who is 19 !! >> Hi Judy: That gave me a good laugh this morning. I think is anxiously awaiting " boobies " also. Just yesterday, out of the blue, she asked me how to put on a bra, so I told her how. This morning, the subject of bras came up again and step by step she explained to her brother exactly how she was going to put on her bra! Since she's not even 8 years old yet I think she may be waiting a while for something to put in the bra. Our girls are growing up! ann (Mom to , mds who learned the bra lesson perfectly!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Glad Tim took it so well, Kristy. asked a few months ago why she had a helper in class - that's what brought it up with her. We just sat her down and explained what mds was and she was OK with it. She wanted to know all the differences like " have I got mores bones ? " and " have I got more brain ? " lol also asked which of her friends had mds so we sat her down and showed all the children on here, Children doing just the same as her. She's just like any 8 year old curious about herself - wants to be 18 so she can have " boobies " and boy friends and go dancing in night clubs like her big brother who is 19 !! Judy (mum to 8 yrs mds) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Dear Kristy, I am so happy for you now that you have that huge load off your shoulders. I know it must have been so difficult getting up the courage to tell Tim that he has MDS. What a relief that he took it so well. I knew that God would give you the right words and the right timing. I'm sure there are a lot of eager teens waiting to talk to him from this group. Isn't it wonderful that he has gained some new friends in the process! God Bless! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Kristy, That IS great news. We've gone back and forth about when to tell (11) but we can never seem to agree -- or more specifically -- we agree to put it off and think/talk about it later. Congratulations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Dearest Kristy, Congratualations! It must have been very hard on both of you to have kept it from Tim all this while. Tims' mds must be really very mild. How is doing in school? I hope to be able to be as strong as the people in this group... it's really not easy but I know where I can find help. Take care and God Bless all___________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Congratulations Kristy on overcoming one of the hurdles involved with raising a child with mds. I hope to keep talking about it in front of Caleb, but like you had mentioned, it just does not come up that often. I am so glad Tim took it well, and don't you feel purged and unburdened? I am sure Tim feels relieved also! I hope everyone is doing great, and take care. , mom of Caleb, 3, mds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 I just got confirmation that for the Lyme-Autism Conference next month at our dinner gala we will be doing a full screening of the movie: Under Our Skin About the movie: In the early 1970's, a mysterious ailment was discovered among children living around the town of Lyme, CT. What was first diagnosed as isolated cases of juvenile arthritis, eventually became known as Lyme disease, an illness triggered by spiral-shaped bacteria, similar to the microorganisms that cause syphilis. Today, many of those untreated will suffer chronic debilitating illness. Some unknowingly will pass the disease on to their unborn children. Many will lose their livelihoods, and still others, their lives. Yet Lyme disease is one of the most misunderstood and controversial illnesses of our time. Difficult to test accurately, tens of thousands of people go undiagnose— or misdiagnosed with such conditions as fibromyalgia, chronic fatigue, autism, MS and ALS. The Centers for Disease Control admits that more than 200,000 people may acquire Lyme disease each year, a number greater than AIDS, West Nile Virus, and Avian Flu combined. And yet, the medical establishment—with profound influence from the insurance industry—has stated that the disease is easily detectable and treatable, and that “chronic Lyme†is some other unrecognized syndrome or a completely psychosomatic disorder. UNDER OUR SKIN is a powerful and often terrifying look not only at the science and politics of the disease, but also the personal stories of those whose lives have been affected and nearly destroyed. From a few brave doctors who risk their medical licenses, to patients who once led active lives but now can barely walk, the film uncovers a hidden world that will astound viewers. While exposing a broken health care and medical research system, the film also gives voice to those who believe that instead of a crisis, Lyme is simply a "disease du jour," over diagnosed and contributing to another crisis: the looming resistance of microbes and ineffectuality of antibiotics. As suspenseful and hair-raising as any Hollywood thriller, UNDER OUR SKIN is sure to get under yours. HONORS Audience Choice Award Finalist, Tribeca Film FestivalBest Socially Conscious Documentary Nominee, IFP/Fledgling FundOfficial Selection, AFI/Silverdocs Documentary Film Festival www.underourskin.com Tami DuncanPresident and Co-Founderwww.liafoundation.orgWondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. Quote Link to comment Share on other sites More sharing options...
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