Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Kristy--I think the brochure is a great idea. Thank you for this and for everything you do! 1.) I worried about the effect long and short term on his sister, Forester. 2.) Both Fred and I worried that it was our fault for waiting so long to have kids. I don't feel the same way now, but I wished we'd decided to adopt a second child as we'd been considering, instead of having our own. 3.) I worried about telling family, although their reaction was by and large more supportive than we hoped. Having a child with a disability is a wonderful BS detector, weeding out superficial from genuine friends. 4.) I wondered if my son would be able to have children--the answer from the geneticist was probably not, although more tests do need to be done on men with MDS to see if sterility is always the case. MDS is confusing because of the broader range of possible manifestations than DS, but I think the brochure should be careful not to imply that there's definitely going to be a difference between a child with DS and a child with MDS since we know even from this list serve that this isn't always the case and since we need to be as cautious of potential health concerns associated with DS as parents whose children have the more common form of Down syndrome. I think we need to stress the positive social changes accounting for higher IQs and happier lives for all children with DS than in the past. If it turns out one's child with MDS has very few symptoms of Down syndrome, that's fortunate, and it is a definite possibility, but I don't think we want to lead parents to expect this is a given, or to contribute to any divisions that may exist between the Down syndrome and mosaic Down syndrome communities. Someone on this list serve told me early on to " expect the best and prepare for the worst " --this seems like really good advice for us as parents of kids with MDS, and I've taken it to heart. Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 The biggest question and most depressing thought I had.. Question.. What will her future be? - We don't know just like any child. She may go to college, she may not. She may get married, she may not. She may have children, she may not. Her children may have DS, they may not. Thought.. All my dreams for her are just flushed down the toilet. I dreamt about her going to college, being a mom, having grandkids. All of those things may still happen - but it is up to her and how I treat her effects how she grows up and what she expects of herself. Darlene > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Thank you Darlene I think those feelings are something we have all felt! Kristy Darlene Benoit wrote: The biggest question and most depressing thought I had.. Question.. What will her future be? - We don't know just like any child. She may go to college, she may not. She may get married, she may not. She may have children, she may not. Her children may have DS, they may not. Thought.. All my dreams for her are just flushed down the toilet. I dreamt about her going to college, being a mom, having grandkids. All of those things may still happen - but it is up to her and how I treat her effects how she grows up and what she expects of herself. Darlene > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Darlene I had the same feelings as well with Brannon. I also feared since he had MDS he could catch anything like a cold so easily I was worried about the hole in his heart which did close a year later. Also I felt it was my fault that he had MDS that I did something wrong during the pregnency even though I don't smoke or drink. Basically I just worried what would my child be like and would he be accepted by everyone. I worried how to tell my other family members and inlaws. I wondered how they would react. I wondered who I should tell and not tell. Those were the main things that bothered me when I first found out. a -- Re: Need your imput! The biggest question and most depressing thought I had.. Question.. What will her future be? - We don't know just like any child. She may go to college, she may not. She may get married, she may not. She may have children, she may not. Her children may have DS, they may not. Thought.. All my dreams for her are just flushed down the toilet. I dreamt about her going to college, being a mom, having grandkids. All of those things may still happen - but it is up to her and how I treat her effects how she grows up and what she expects of herself. Darlene > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 a, Thanks for sharing this. Lets also talk about the " telling and not telling " issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy and a Phipps wrote: Darlene I had the same feelings as well with Brannon. I also feared since he had MDS he could catch anything like a cold so easily I was worried about the hole in his heart which did close a year later. Also I felt it was my fault that he had MDS that I did something wrong during the pregnency even though I don't smoke or drink. Basically I just worried what would my child be like and would he be accepted by everyone. I worried how to tell my other family members and inlaws. I wondered how they would react. I wondered who I should tell and not tell. Those were the main things that bothered me when I first found out. a -- Re: Need your imput! The biggest question and most depressing thought I had.. Question.. What will her future be? - We don't know just like any child. She may go to college, she may not. She may get married, she may not. She may have children, she may not. Her children may have DS, they may not. Thought.. All my dreams for her are just flushed down the toilet. I dreamt about her going to college, being a mom, having grandkids. All of those things may still happen - but it is up to her and how I treat her effects how she grows up and what she expects of herself. Darlene > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Kristy, At first I only told my parents and my inlaws. Keep in mind Brannon was almost 2 yrs when I found out. Other family members and friends knew something had to be wrong with him because he had low muscle tone which prevented him from walking and he wasn't talking. So I told those that were around him a lot. They were real supportive and they didn't treat him any different. I guess that was my main fear that they would treat him like he's dumb or something. I wanted him to be treated like any 2 year old child. At first I wanted to hide it from everyone that didn't know him personally. I felt it was none of their business and also worried how they would treat him Nowadays I brag on him so much it's not a big deal to say by the way he has MDS. Which makes people realize a child with MDS is no different from any other child besides their developmental delays. When I do mention MDS I get a lot of people asking what's MDS. So I get the pleasure to talk about MDS to them. Hopefully they've learned something and will tell someone else so more people know about MDS. I personally never got a reaction that upset me. Everyone has been supportive and has great expectations for Brannon. a From: Kristy Colvin Date: 01/07/06 11:03:31 To: MosaicDS Subject: Re: Need your imput! a, Thanks for sharing this. Lets also talk about the " telling and not telling issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy and a Phipps wrote: Darlene I had the same feelings as well with Brannon. I also feared since he had MDS he could catch anything like a cold so easily I was worried about the hole in his heart which did close a year later. Also I felt it was my fault that he had MDS that I did something wrong during the pregnency even though I don't smoke or drink. Basically I just worried what would my child be like and would he be accepted by everyone. I worried how to tell my other family members and inlaws. I wondered how they would react. I wondered who I should tell and not tell. Those were the main things that bothered me when I first found out. a -- Re: Need your imput! The biggest question and most depressing thought I had.. Question.. What will her future be? - We don't know just like any child. She may go to college, she may not. She may get married, she may not. She may have children, she may not. Her children may have DS, they may not. Thought.. All my dreams for her are just flushed down the toilet. I dreamt about her going to college, being a mom, having grandkids. All of those things may still happen - but it is up to her and how I treat her effects how she grows up and what she expects of herself. Darlene > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 The major question I had was where do I find someone who has a child with MDS. It took me about 8 years to find y'all, and that was by accident. I also had the questions of how could MDS occur, and why. Also, one thing that would have been helpful, was that just like kids with DS, MDS kids need the same screening ie-thyroid, routine c-spines, etc. Also, another thing, that we, as parents, need to be pro-active with our children, as no one is really sure of the full potential of their child. Just a few thoughts. Irene Kristy Colvin wrote: Hi Everyone, We are trying to make a brochure that will go out to new families who first get the dx of MDS with their child. This would essentally be at OB clinics and genetic counselor offices. I have most of the important information, but I thought I should ask all of you this question first... What were the big questions you had when your baby/child was first dx. Please include those questions you were afraid to ask. I would like to be sure that we answer all those fears that parents have. Thanks! Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 On telling or not. I still struggle with this issue. I tend to " play it by ear " . It depends on when, where or who we are with. As I was telling Kristy lately, I think I need a shirt for Nat, like my cousin with autism, " I'm retarted. What's your problem! " LOL!! Just a twist on what people percieve as " normal " . Irene who is now a Texas Transplant, partially due to last years convention , and mom to Nat 11 MDS, Luke 9, Emilia 6, Lilly 4, and Isaac 2 Kristy Colvin wrote: a, Thanks for sharing this. Lets also talk about the " telling and not telling " issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy and a Phipps wrote: Darlene I had the same feelings as well with Brannon. I also feared since he had MDS he could catch anything like a cold so easily I was worried about the hole in his heart which did close a year later. Also I felt it was my fault that he had MDS that I did something wrong during the pregnency even though I don't smoke or drink. Basically I just worried what would my child be like and would he be accepted by everyone. I worried how to tell my other family members and inlaws. I wondered how they would react. I wondered who I should tell and not tell. Those were the main things that bothered me when I first found out. a -- Re: Need your imput! The biggest question and most depressing thought I had.. Question.. What will her future be? - We don't know just like any child. She may go to college, she may not. She may get married, she may not. She may have children, she may not. Her children may have DS, they may not. Thought.. All my dreams for her are just flushed down the toilet. I dreamt about her going to college, being a mom, having grandkids. All of those things may still happen - but it is up to her and how I treat her effects how she grows up and what she expects of herself. Darlene > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 a - I also thought I had done something wrong - was this my fault because I was not on Prenatal vitamins due to she was unexpected or maybe it was because my diet was not as heavy on the vegetables as it should have been. We did not find out until she was 4 months old. I did tell everyone at first because I needed the emotional support. Everyone reacted fine (except me) - there was only one person who did not accept her for who she was and that wasn't until she was 14 months old and by that time I accepted her for being her. It took almost losing her at 6 months to make me realize that I loved THIS child and I did not want a replacement with perfect chromosomes. Darlene > > a, > Thanks for sharing this. Lets also talk about the " telling and not > telling " issue. Can you remember how you decided who to tell and who not to > tell? Did you get the reaction you were afraid of getting? Or, was it > completely different? > thanks > Kristy > > and a Phipps wrote: > Darlene I had the same feelings as well with Brannon. > I also feared since he had MDS he could catch anything like a cold so > easily > I was worried about the hole in his heart which did close a year later. > Also I felt it was my fault that he had MDS that I did something wrong > during the pregnency even though I don't smoke or drink. > Basically I just worried what would my child be like and would he be > accepted by everyone. I worried how to tell my other family members and > inlaws. I wondered how they would react. I wondered who I should tell and > not tell. Those were the main things that bothered me when I first found > out. > a > -- Re: Need your imput! > > The biggest question and most depressing thought I had.. > > Question.. > What will her future be? - > We don't know just like any child. She may go to college, she may > not. She > may get married, she may not. She may have children, she may not. Her > children may have DS, they may not. > > Thought.. > All my dreams for her are just flushed down the toilet. > I dreamt about her going to college, being a mom, having grandkids. All > of > those things may still happen - but it is up to her and how I treat her > effects how she grows up and what she expects of herself. > > Darlene > > > > > > Hi Everyone, > > We are trying to make a brochure that will go out to new families who > > first get the dx of MDS with their child. This would essentally be at OB > > clinics and genetic counselor offices. I have most of the important > > information, but I thought I should ask all of you this question > first... > > What were the big questions you had when your baby/child was first dx. > > Please include those questions you were afraid to ask. I would like to > be > > sure that we answer all those fears that parents have. > > Thanks! > > Kristy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Well the biggest and most depressing thought i had was after the genectist told my husband and i that mds kids are usually a little bit smarter then the ds kids, but our daughter would probably be mildly to severly retarted....that was just the most devastating words i had ever heard....but my thought was ok, we are going to have a child that is mildly to severly retarted, are we gonna be able to give her the care she needs...just wasnt sure this was a challenge we could overcome...and i was worried about her future, and her health (altho as of today she has had no health problems what so ever and she is 20 months-so we've been fortunate), if people would accept her. Of course it was just alot to take in. As far as who we told and didnt tell...the first ones we told were our mothers, and in no way did it change their view of her, infact i think they gave her " extra " love...lol...they wanted her to know for sure she was loved!! At first we only told the ones that was involved in her everyday life. Then the more comfortable we became with it, the more people we would tell. Now for the most part, everyone we know has been told, and everyone has accepted her with open arms. Not one person has denied her. So overall we have been SOOOO fortunate. From: Kristy Colvin Date: 01/07/06 11:03:31 To: MosaicDS Subject: Re: Need your imput! a, Thanks for sharing this. Lets also talk about the " telling and not telling issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy Jess Check me out! --------------------------------- Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 hey i am a41 yr. old man with mds and i function in the so called real world. i been on my own since i was 16. Jessie Cullen wrote: Well the biggest and most depressing thought i had was after the genectist told my husband and i that mds kids are usually a little bit smarter then the ds kids, but our daughter would probably be mildly to severly retarted....that was just the most devastating words i had ever heard....but my thought was ok, we are going to have a child that is mildly to severly retarted, are we gonna be able to give her the care she needs...just wasnt sure this was a challenge we could overcome...and i was worried about her future, and her health (altho as of today she has had no health problems what so ever and she is 20 months-so we've been fortunate), if people would accept her. Of course it was just alot to take in. As far as who we told and didnt tell...the first ones we told were our mothers, and in no way did it change their view of her, infact i think they gave her " extra " love...lol...they wanted her to know for sure she was loved!! At first we only told the ones that was involved in her everyday life. Then the more comfortable we became with it, the more people we would tell. Now for the most part, everyone we know has been told, and everyone has accepted her with open arms. Not one person has denied her. So overall we have been SOOOO fortunate. From: Kristy Colvin Date: 01/07/06 11:03:31 To: MosaicDS Subject: Re: Need your imput! a, Thanks for sharing this. Lets also talk about the " telling and not telling issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy Jess Check me out! --------------------------------- Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 We also found out right after he turned 2 and were terrified of all the unknowns. The biggest challenge for us was that the doctor just pawned us off on someone else saying he never heard of it and couldn't help us. The genetecist and pediatrician at the counseling appt. made some comments determining certain things about him that we were frustrated with since no assessment had been done and they'd only just met him. I think those things gave us a bad taste for how other people might react. We were very private about it and only told family at first. They were accepting, but we got a lot of assumptions based on typical DS things (like, " they're always the sweetest people, " or other comments to their children about how he just doesn't know any better). We were frustrated by people assuming they know Down Syndrome so they know what to expect from our son, before even giving him a chance to show them. Granted, they were really loving and accepting, but almost in a condescending way. We also felt protective at first about telling people because of the comments we got at first, but after seeing the things posted on here have decided it's better that more people are aware of MDS itself, regardless of what they think of Aidan. It's still kind of a process though, trying not to " sell him out " to people before he can prove what he's capable of. Going back to the first question, I think our biggest fear when we first found out was, as someone else put it, that our dreams or the life we had created in our head for this child was now just a bunch of questions to be determined as life goes on. Kristy, I think the brochure is a great idea, not just for parents with a dx, but also for others who happen to see it and will remember the name when someone they know is diagnosed. Hope this helps! Aidan - MDS (3 1/2), a (2) and unborn baby Kristy Colvin wrote: Hi Everyone, We are trying to make a brochure that will go out to new families who first get the dx of MDS with their child. This would essentally be at OB clinics and genetic counselor offices. I have most of the important information, but I thought I should ask all of you this question first... What were the big questions you had when your baby/child was first dx. Please include those questions you were afraid to ask. I would like to be sure that we answer all those fears that parents have. Thanks! Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 and everyone else who has commented, Thank you so much for you comments. I am really enjoying all the stories and not only does this help me for the brochure, it also helps me for when I am counseling a new parent. Please, keep your comments coming! This is really a great discussion! Kristy and wrote: We also found out right after he turned 2 and were terrified of all the unknowns. The biggest challenge for us was that the doctor just pawned us off on someone else saying he never heard of it and couldn't help us. The genetecist and pediatrician at the counseling appt. made some comments determining certain things about him that we were frustrated with since no assessment had been done and they'd only just met him. I think those things gave us a bad taste for how other people might react. We were very private about it and only told family at first. They were accepting, but we got a lot of assumptions based on typical DS things (like, " they're always the sweetest people, " or other comments to their children about how he just doesn't know any better). We were frustrated by people assuming they know Down Syndrome so they know what to expect from our son, before even giving him a chance to show them. Granted, they were really loving and accepting, but almost in a condescending way. We also felt protective at first about telling people because of the comments we got at first, but after seeing the things posted on here have decided it's better that more people are aware of MDS itself, regardless of what they think of Aidan. It's still kind of a process though, trying not to " sell him out " to people before he can prove what he's capable of. Going back to the first question, I think our biggest fear when we first found out was, as someone else put it, that our dreams or the life we had created in our head for this child was now just a bunch of questions to be determined as life goes on. Kristy, I think the brochure is a great idea, not just for parents with a dx, but also for others who happen to see it and will remember the name when someone they know is diagnosed. Hope this helps! Aidan - MDS (3 1/2), a (2) and unborn baby Kristy Colvin wrote: Hi Everyone, We are trying to make a brochure that will go out to new families who first get the dx of MDS with their child. This would essentally be at OB clinics and genetic counselor offices. I have most of the important information, but I thought I should ask all of you this question first... What were the big questions you had when your baby/child was first dx. Please include those questions you were afraid to ask. I would like to be sure that we answer all those fears that parents have. Thanks! Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Thank you for your comment. My daughter is now 20months and anything but " retarted " (i hate that word), so I have high hopes that she will do ok in the real world, theres lots of options even if she is dependant. But seeing your comment gave me even higher hopes for her!!! I look forward to more comments from you!! Jess - Momma to 20 months Dennis Dixon wrote: hey i am a41 yr. old man with mds and i function in the so called real world. i been on my own since i was 16. Jessie Cullen wrote: Well the biggest and most depressing thought i had was after the genectist told my husband and i that mds kids are usually a little bit smarter then the ds kids, but our daughter would probably be mildly to severly retarted....that was just the most devastating words i had ever heard....but my thought was ok, we are going to have a child that is mildly to severly retarted, are we gonna be able to give her the care she needs...just wasnt sure this was a challenge we could overcome...and i was worried about her future, and her health (altho as of today she has had no health problems what so ever and she is 20 months-so we've been fortunate), if people would accept her. Of course it was just alot to take in. As far as who we told and didnt tell...the first ones we told were our mothers, and in no way did it change their view of her, infact i think they gave her " extra " love...lol...they wanted her to know for sure she was loved!! At first we only told the ones that was involved in her everyday life. Then the more comfortable we became with it, the more people we would tell. Now for the most part, everyone we know has been told, and everyone has accepted her with open arms. Not one person has denied her. So overall we have been SOOOO fortunate. Jess - Momma to 20months Jess Check me out! --------------------------------- Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 hey im as normal as normal as can be, my mds efects my nerves my coordination which im a slow learner in a few ways. i wish u daughter well in comming yrs. Jessie Cullen wrote: Thank you for your comment. My daughter is now 20months and anything but " retarted " (i hate that word), so I have high hopes that she will do ok in the real world, theres lots of options even if she is dependant. But seeing your comment gave me even higher hopes for her!!! I look forward to more comments from you!! Jess - Momma to 20 months Dennis Dixon wrote: hey i am a41 yr. old man with mds and i function in the so called real world. i been on my own since i was 16. Jessie Cullen wrote: Well the biggest and most depressing thought i had was after the genectist told my husband and i that mds kids are usually a little bit smarter then the ds kids, but our daughter would probably be mildly to severly retarted....that was just the most devastating words i had ever heard....but my thought was ok, we are going to have a child that is mildly to severly retarted, are we gonna be able to give her the care she needs...just wasnt sure this was a challenge we could overcome...and i was worried about her future, and her health (altho as of today she has had no health problems what so ever and she is 20 months-so we've been fortunate), if people would accept her. Of course it was just alot to take in. As far as who we told and didnt tell...the first ones we told were our mothers, and in no way did it change their view of her, infact i think they gave her " extra " love...lol...they wanted her to know for sure she was loved!! At first we only told the ones that was involved in her everyday life. Then the more comfortable we became with it, the more people we would tell. Now for the most part, everyone we know has been told, and everyone has accepted her with open arms. Not one person has denied her. So overall we have been SOOOO fortunate. Jess - Momma to 20months Jess Check me out! --------------------------------- Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 I remember laying in bed just 1 hr after delivering Layla, the nurse who happend to be a friend of mine walks in and asks hey how was your triple screening and i said fine...she is like mmmmm well they are concerned because her eyes are very almond shaped...considering mine and daddys are very much the same way....2 dr's came by and said dont worry she is fine, finally what gave it away was her ekg, av canal, the cardiologist came in and said she has no visible ds marks i am thinking she is mds ( great bedside manor- very positive about mds babies and how they live healthy lives if encouraged to do so) i need to talk to the dr that did you triple and have do another test..the geneticist walked in later and said yep she is full down syndrome, she is going to be slow and maybe even retarted...i remember looking at him and saying your wrong..he said i have been doing this 24 years and i have only been wrong 3 times...my sister states you better be ready for the forth, as he walked out all i could do was CRY, CRY, CRY, AND CRY SOME MORE. i remember the results coming back a few days later when i heard his voice i went numb.....it brought me great joy when the geneticist said...will let me begin by apologizing we were both wrong..she is mds and i am sorry....so again i cried well dont get me wrong i was upset...and i kept thinking well she smile, laugh, walk, talk, live a productive life, and let me tell you, its amazing to see her talk, laugh, smile, recognize me (mommy), hit her toys, do all the things that people say she was not suppose to do...but she does....i handle things one day at a time, and i just kinda figure out the rest as i go...i love my chica...layla renae, she is my joy......but fear, tears, and all the stuff in between are the feelings in the beginning and now i live for the nows... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 just wanted to say i had those same thoughts when i had Amy and yes your right those things may happen one day and all i want is for amy to be a happy and independant individual marie mom of amy 7 Re: Need your imput! > The biggest question and most depressing thought I had.. > > Question.. > What will her future be? - > We don't know just like any child. She may go to college, she may not. > She > may get married, she may not. She may have children, she may not. Her > children may have DS, they may not. > > Thought.. > All my dreams for her are just flushed down the toilet. > I dreamt about her going to college, being a mom, having grandkids. All > of > those things may still happen - but it is up to her and how I treat her > effects how she grows up and what she expects of herself. > > Darlene > > >> >> Hi Everyone, >> We are trying to make a brochure that will go out to new families who >> first get the dx of MDS with their child. This would essentally be at OB >> clinics and genetic counselor offices. I have most of the important >> information, but I thought I should ask all of you this question first... >> What were the big questions you had when your baby/child was first dx. >> Please include those questions you were afraid to ask. I would like to be >> sure that we answer all those fears that parents have. >> Thanks! >> Kristy >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I remember it was two days after i gave birth to Amy and they came to do checks before discharging us and they said we are concerned about low muscle town. That they wanted to do tests the doctor then mentioned chromosome disorder and i turned around and said you mean down syndrome and they looked at me and said oh you understand. A week later i found out the results we thenhad to see a specialist who then told me never to expect Amy to do anything for herself i walked away thinking I will help her do all she can do. I think it was when she was 3 that they said it was mosaic down syndrome but they couldnt give me a lot of information on it and im so glad i found all of you. Amy proved everyone wrong she attends main stream school and is doing her sats this year even though she wont be top they are saying she will be doing ok. Amy is now doing Karate and even though she is not as good as the others she loves the chance to be like her friends and im so glad i never believed what my specialist said as i wouldnt of been so determined to help Amy to be all she can be sorry to go on I just wanted to give you my experiance Re: Need your imput! >I remember laying in bed just 1 hr after delivering Layla, the nurse > who happend to be a friend of mine walks in and asks hey how was > your triple screening and i said fine...she is like mmmmm well they > are concerned because her eyes are very almond shaped...considering > mine and daddys are very much the same way....2 dr's came by and > said dont worry she is fine, finally what gave it away was her ekg, > av canal, the cardiologist came in and said she has no visible ds > marks i am thinking she is mds ( great bedside manor- very positive > about mds babies and how they live healthy lives if encouraged to do > so) i need to talk to the dr that did you triple and have do > another test..the geneticist walked in later and said yep she is > full down syndrome, she is going to be slow and maybe even > retarted...i remember looking at him and saying your wrong..he said > i have been doing this 24 years and i have only been wrong 3 > times...my sister states you better be ready for the forth, as he > walked out all i could do was CRY, CRY, CRY, AND CRY SOME MORE. i > remember the results coming back a few days later when i heard his > voice i went numb.....it brought me great joy when the geneticist > said...will let me begin by apologizing we were both wrong..she is > mds and i am sorry....so again i cried well dont get me wrong i was > upset...and i kept thinking well she smile, laugh, walk, talk, live > a productive life, and let me tell you, its amazing to see her talk, > laugh, smile, recognize me (mommy), hit her toys, do all the things > that people say she was not suppose to do...but she does....i handle > things one day at a time, and i just kinda figure out the rest as i > go...i love my chica...layla renae, she is my joy......but fear, > tears, and all the stuff in between are the feelings in the > beginning and now i live for the nows... > > > > > > Become a member of IMDSA today at http://www.imdsa.com > ************************************************* > Contact IMDSA Today at: > IMDSA~PO Box 1052~lin,TX~77856~USA~1- > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Your dreams for your child are not dead, just taking a different path. They(gene drs.) need to show empathy!!Not just be logical! Love your child like their your child! and expect the Most, kids try to live up to your expectations (or down to them!) Therapy is important for kids, but helps the parents -gives you ideas on how to help your child! Don;t borrow trouble -would you be asking about if your child willl get married if they did not have MDS? Some typical people do not get married! Take it day by day and plan for what you need to.. > >> > >> Hi Everyone, > >> We are trying to make a brochure that will go out to new families who > >> first get the dx of MDS with their child. This would essentally be at OB > >> clinics and genetic counselor offices. I have most of the important > >> information, but I thought I should ask all of you this question first... > >> What were the big questions you had when your baby/child was first dx. > >> Please include those questions you were afraid to ask. I would like to be > >> sure that we answer all those fears that parents have. > >> Thanks! > >> Kristy > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 The most important thing I have learned is not to put any limits on Adam (3 1/2 with mds). When he was little his muscle tone was so bad that his OT told us he might be four years old before he could walk. We refused to accept that and got a new OT that focused on the positive things Adam could do and did tell us things that he wouldn't be able to do. He walked at 15 months. Now he can count to 20 and recognized all of the numbers. He knows all of the ABC's and the sounds the letters make. He can even sound out words like cat, bat etc. He knows shapes and colors. If we show him a map, he can find Indiana, where we live. He has the leap frog toys and learned all of this on his own. He has a typical cousin the same age who doesn't know how to do these things. (oops - sorry - I'm a grandma and can't help bragging.) Anyway, we never let anyone tell us Adam can't do something. We just work harder at those things. No one looks at their new baby and knows what their learning capacity will be. I think it is ignorant for a doctor to proclaim that your child will be mildly to severly retarded (I hate that word). They told us that Adam would probably be just slightly above a DS child. So far, they have been wrong. Thank God, like your child, Adam has had no health problems. Good luck and remember, if you put limits on her, she will put limits on herself. Donna - gram to Adam 3 mds and Skylar 3 Jessie Cullen wrote: Well the biggest and most depressing thought i had was after the genectist told my husband and i that mds kids are usually a little bit smarter then the ds kids, but our daughter would probably be mildly to severly retarted....that was just the most devastating words i had ever heard....but my thought was ok, we are going to have a child that is mildly to severly retarted, are we gonna be able to give her the care she needs...just wasnt sure this was a challenge we could overcome...and i was worried about her future, and her health (altho as of today she has had no health problems what so ever and she is 20 months-so we've been fortunate), if people would accept her. Of course it was just alot to take in. As far as who we told and didnt tell...the first ones we told were our mothers, and in no way did it change their view of her, infact i think they gave her " extra " love...lol...they wanted her to know for sure she was loved!! At first we only told the ones that was involved in her everyday life. Then the more comfortable we became with it, the more people we would tell. Now for the most part, everyone we know has been told, and everyone has accepted her with open arms. Not one person has denied her. So overall we have been SOOOO fortunate. From: Kristy Colvin Date: 01/07/06 11:03:31 To: MosaicDS Subject: Re: Need your imput! a, Thanks for sharing this. Lets also talk about the " telling and not telling issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy Jess Check me out! --------------------------------- Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 The most important thing I have learned is not to put any limits on Adam (3 1/2 with mds). When he was little his muscle tone was so bad that his OT told us he might be four years old before he could walk. We refused to accept that and got a new OT that focused on the positive things Adam could do and did tell us things that he wouldn't be able to do. He walked at 15 months. Now he can count to 20 and recognized all of the numbers. He knows all of the ABC's and the sounds the letters make. He can even sound out words like cat, bat etc. He knows shapes and colors. If we show him a map, he can find Indiana, where we live. He has the leap frog toys and learned all of this on his own. He has a typical cousin the same age who doesn't know how to do these things. (oops - sorry - I'm a grandma and can't help bragging.) Anyway, we never let anyone tell us Adam can't do something. We just work harder at those things. No one looks at their new baby and knows what their learning capacity will be. I think it is ignorant for a doctor to proclaim that your child will be mildly to severly retarded (I hate that word). They told us that Adam would probably be just slightly above a DS child. So far, they have been wrong. Thank God, like your child, Adam has had no health problems. Good luck and remember, if you put limits on her, she will put limits on herself. Donna - gram to Adam 3 mds and Skylar 3 Jessie Cullen wrote: Well the biggest and most depressing thought i had was after the genectist told my husband and i that mds kids are usually a little bit smarter then the ds kids, but our daughter would probably be mildly to severly retarted....that was just the most devastating words i had ever heard....but my thought was ok, we are going to have a child that is mildly to severly retarted, are we gonna be able to give her the care she needs...just wasnt sure this was a challenge we could overcome...and i was worried about her future, and her health (altho as of today she has had no health problems what so ever and she is 20 months-so we've been fortunate), if people would accept her. Of course it was just alot to take in. As far as who we told and didnt tell...the first ones we told were our mothers, and in no way did it change their view of her, infact i think they gave her " extra " love...lol...they wanted her to know for sure she was loved!! At first we only told the ones that was involved in her everyday life. Then the more comfortable we became with it, the more people we would tell. Now for the most part, everyone we know has been told, and everyone has accepted her with open arms. Not one person has denied her. So overall we have been SOOOO fortunate. From: Kristy Colvin Date: 01/07/06 11:03:31 To: MosaicDS Subject: Re: Need your imput! a, Thanks for sharing this. Lets also talk about the " telling and not telling issue. Can you remember how you decided who to tell and who not to tell? Did you get the reaction you were afraid of getting? Or, was it completely different? thanks Kristy > > Hi Everyone, > We are trying to make a brochure that will go out to new families who > first get the dx of MDS with their child. This would essentally be at OB > clinics and genetic counselor offices. I have most of the important > information, but I thought I should ask all of you this question first... > What were the big questions you had when your baby/child was first dx. > Please include those questions you were afraid to ask. I would like to be > sure that we answer all those fears that parents have. > Thanks! > Kristy Jess Check me out! --------------------------------- Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
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