Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 This is excellent. You should be proud! > > I wanted to share something about myself and my family that I am very proud > of, though I had no idea what I was getting us into at the time... > > > > Back in July, my physiatrist, Dr. Kristi Kirschner at the Rehab Institute of > Chicago, requested permission to use my story of living with Spinal Muscular > Atrophy Type 1, enduring two successful pregnancies, and being a wife / > mother despite the severity of my condition to a group of women executives. > Of course, I agreed and didn't even bother to ask questions...I am beyond > grateful to the three docs who stood beside us throughout our quest to > become parents, and would do most anything in support of them. Dr. Kirschner > wanted to conduct a follow-up video-taped interview for her presentation > (for those who may not know, my pregnancy with le was taped from > beginning to end by RIC and Northwestern Hospital staff, and continues to be > used amongst the medical education curriculum at Northwestern University), > and we arranged to meet with the appropriate interview / film crew in > mid-September. The day worked out well; the crew was very warm, > down-to-earth, and friendly, and the girls loved the attention being focused > on them being completely themselves, just being kids! After everything was > done and the film crew was packing up their equipment, Steve got to talking > to them and learned that the presentation was for a group called " 200 Women > in Power, " but, in reality, there would be a little over 400 women in > attendance. The name meant nothing to him, so he asked questions about it > and was told the members included women such as Diane Sawyer and > Courick (sp?), to name a few. Of course, he waited until everyone had left > to tell me, and suddenly I became quite nervous. Yes, I want to share our > story in an offer of hope to others, but I can be very shy and modest at > times! > > > > I was recently advised that the presentation went very well and all were > quite moved by my / our story, but had not had the opportunity to see the > final outcome of video footage. Yesterday, I received notice that the video > had been posted on the Rehab Institute of Chicago's website, and wanted to > pass it on to you. I am so proud of my girls and grateful to have someone > like Steve in my life who NEVER stops pushing and supporting me in turning > my dreams into realities! I will warn you, it is fairly long, at slightly > over 12 minutes...and if you get emotional over miracles, have a box of > tissue handy as you'll witness the birth of le (don't worry, it is > very family friendly). > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > Thanks for listening, and enjoy! > > > > Amy M. Marquez > > > > " You can go on living, or you can go on dying.the choice is yours! " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 WOW Amy, that was an amazing and inspirational video. I would like to have a family in the future, and your video gave me hope. it taught me that even though I have SMA that I could still have have my family. There could be high risks, but I'm willing to take those chances. that may have sounded crazy, but I really want to become a mommy one day. You know, all of the women on here with sma, that have children just inspire me really. Again Amy M. Awesome video =] > > I wanted to share something about myself and my family that I am very proud > of, though I had no idea what I was getting us into at the time... > > > > Back in July, my physiatrist, Dr. Kristi Kirschner at the Rehab Institute of > Chicago, requested permission to use my story of living with Spinal Muscular > Atrophy Type 1, enduring two successful pregnancies, and being a wife / > mother despite the severity of my condition to a group of women executives. > Of course, I agreed and didn't even bother to ask questions...I am beyond > grateful to the three docs who stood beside us throughout our quest to > become parents, and would do most anything in support of them. Dr. Kirschner > wanted to conduct a follow-up video-taped interview for her presentation > (for those who may not know, my pregnancy with le was taped from > beginning to end by RIC and Northwestern Hospital staff, and continues to be > used amongst the medical education curriculum at Northwestern University), > and we arranged to meet with the appropriate interview / film crew in > mid-September. The day worked out well; the crew was very warm, > down-to-earth, and friendly, and the girls loved the attention being focused > on them being completely themselves, just being kids! After everything was > done and the film crew was packing up their equipment, Steve got to talking > to them and learned that the presentation was for a group called " 200 Women > in Power, " but, in reality, there would be a little over 400 women in > attendance. The name meant nothing to him, so he asked questions about it > and was told the members included women such as Diane Sawyer and > Courick (sp?), to name a few. Of course, he waited until everyone had left > to tell me, and suddenly I became quite nervous. Yes, I want to share our > story in an offer of hope to others, but I can be very shy and modest at > times! > > > > I was recently advised that the presentation went very well and all were > quite moved by my / our story, but had not had the opportunity to see the > final outcome of video footage. Yesterday, I received notice that the video > had been posted on the Rehab Institute of Chicago's website, and wanted to > pass it on to you. I am so proud of my girls and grateful to have someone > like Steve in my life who NEVER stops pushing and supporting me in turning > my dreams into realities! I will warn you, it is fairly long, at slightly > over 12 minutes...and if you get emotional over miracles, have a box of > tissue handy as you'll witness the birth of le (don't worry, it is > very family friendly). > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > Thanks for listening, and enjoy! > > > > Amy M. Marquez > > > > " You can go on living, or you can go on dying.the choice is yours! " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 Amy, That was awesome! I'm glad you were transparent about the experience, from both the positive and scary sides of the coin. I'm also grateful that such videos are being used to teach future medical leaders about this issue, and that the women execs of this country have now been informed of the fact that people with SMA are just normal folk who want normal families like people w/o SMA. Thanks for doing what you did! Blessings, Holly > > From: " Amy M. Marquez " <amym_dchj@...> > Date: 2007/10/26 Fri PM 12:38:54 GST > < > > Subject: Just wanted to share... > > I wanted to share something about myself and my family that I am very proud > of, though I had no idea what I was getting us into at the time... > > > > Back in July, my physiatrist, Dr. Kristi Kirschner at the Rehab Institute of > Chicago, requested permission to use my story of living with Spinal Muscular > Atrophy Type 1, enduring two successful pregnancies, and being a wife / > mother despite the severity of my condition to a group of women executives. > Of course, I agreed and didn't even bother to ask questions...I am beyond > grateful to the three docs who stood beside us throughout our quest to > become parents, and would do most anything in support of them. Dr. Kirschner > wanted to conduct a follow-up video-taped interview for her presentation > (for those who may not know, my pregnancy with le was taped from > beginning to end by RIC and Northwestern Hospital staff, and continues to be > used amongst the medical education curriculum at Northwestern University), > and we arranged to meet with the appropriate interview / film crew in > mid-September. The day worked out well; the crew was very warm, > down-to-earth, and friendly, and the girls loved the attention being focused > on them being completely themselves, just being kids! After everything was > done and the film crew was packing up their equipment, Steve got to talking > to them and learned that the presentation was for a group called " 200 Women > in Power, " but, in reality, there would be a little over 400 women in > attendance. The name meant nothing to him, so he asked questions about it > and was told the members included women such as Diane Sawyer and > Courick (sp?), to name a few. Of course, he waited until everyone had left > to tell me, and suddenly I became quite nervous. Yes, I want to share our > story in an offer of hope to others, but I can be very shy and modest at > times! > > > > I was recently advised that the presentation went very well and all were > quite moved by my / our story, but had not had the opportunity to see the > final outcome of video footage. Yesterday, I received notice that the video > had been posted on the Rehab Institute of Chicago's website, and wanted to > pass it on to you. I am so proud of my girls and grateful to have someone > like Steve in my life who NEVER stops pushing and supporting me in turning > my dreams into realities! I will warn you, it is fairly long, at slightly > over 12 minutes...and if you get emotional over miracles, have a box of > tissue handy as you'll witness the birth of le (don't worry, it is > very family friendly). > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > Thanks for listening, and enjoy! > > > > Amy M. Marquez > > > > " You can go on living, or you can go on dying.the choice is yours! " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2007 Report Share Posted October 26, 2007 That clip was fantastic!! Congrats! --- " Amy M. Marquez " <amym_dchj@...> wrote: > I wanted to share something about myself and my > family that I am very proud > of, though I had no idea what I was getting us into > at the time... > > > > Back in July, my physiatrist, Dr. Kristi Kirschner > at the Rehab Institute of > Chicago, requested permission to use my story of > living with Spinal Muscular > Atrophy Type 1, enduring two successful pregnancies, > and being a wife / > mother despite the severity of my condition to a > group of women executives. > Of course, I agreed and didn't even bother to ask > questions...I am beyond > grateful to the three docs who stood beside us > throughout our quest to > become parents, and would do most anything in > support of them. Dr. Kirschner > wanted to conduct a follow-up video-taped interview > for her presentation > (for those who may not know, my pregnancy with > le was taped from > beginning to end by RIC and Northwestern Hospital > staff, and continues to be > used amongst the medical education curriculum at > Northwestern University), > and we arranged to meet with the appropriate > interview / film crew in > mid-September. The day worked out well; the crew was > very warm, > down-to-earth, and friendly, and the girls loved the > attention being focused > on them being completely themselves, just being > kids! After everything was > done and the film crew was packing up their > equipment, Steve got to talking > to them and learned that the presentation was for a > group called " 200 Women > in Power, " but, in reality, there would be a little > over 400 women in > attendance. The name meant nothing to him, so he > asked questions about it > and was told the members included women such as > Diane Sawyer and > Courick (sp?), to name a few. Of course, he waited > until everyone had left > to tell me, and suddenly I became quite nervous. > Yes, I want to share our > story in an offer of hope to others, but I can be > very shy and modest at > times! > > > > I was recently advised that the presentation went > very well and all were > quite moved by my / our story, but had not had the > opportunity to see the > final outcome of video footage. Yesterday, I > received notice that the video > had been posted on the Rehab Institute of Chicago's > website, and wanted to > pass it on to you. I am so proud of my girls and > grateful to have someone > like Steve in my life who NEVER stops pushing and > supporting me in turning > my dreams into realities! I will warn you, it is > fairly long, at slightly > over 12 minutes...and if you get emotional over > miracles, have a box of > tissue handy as you'll witness the birth of le > (don't worry, it is > very family friendly). > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > Thanks for listening, and enjoy! > > > > Amy M. Marquez > > > > " You can go on living, or you can go on dying.the > choice is yours! " > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 This is amazing! All the best for you and your family! Camilla Germany > > I wanted to share something about myself and my family that I am very proud > of, though I had no idea what I was getting us into at the time... > > > > Back in July, my physiatrist, Dr. Kristi Kirschner at the Rehab Institute of > Chicago, requested permission to use my story of living with Spinal Muscular > Atrophy Type 1, enduring two successful pregnancies, and being a wife / > mother despite the severity of my condition to a group of women executives. > Of course, I agreed and didn't even bother to ask questions...I am beyond > grateful to the three docs who stood beside us throughout our quest to > become parents, and would do most anything in support of them. Dr. Kirschner > wanted to conduct a follow-up video-taped interview for her presentation > (for those who may not know, my pregnancy with le was taped from > beginning to end by RIC and Northwestern Hospital staff, and continues to be > used amongst the medical education curriculum at Northwestern University), > and we arranged to meet with the appropriate interview / film crew in > mid-September. The day worked out well; the crew was very warm, > down-to-earth, and friendly, and the girls loved the attention being focused > on them being completely themselves, just being kids! After everything was > done and the film crew was packing up their equipment, Steve got to talking > to them and learned that the presentation was for a group called " 200 Women > in Power, " but, in reality, there would be a little over 400 women in > attendance. The name meant nothing to him, so he asked questions about it > and was told the members included women such as Diane Sawyer and > Courick (sp?), to name a few. Of course, he waited until everyone had left > to tell me, and suddenly I became quite nervous. Yes, I want to share our > story in an offer of hope to others, but I can be very shy and modest at > times! > > > > I was recently advised that the presentation went very well and all were > quite moved by my / our story, but had not had the opportunity to see the > final outcome of video footage. Yesterday, I received notice that the video > had been posted on the Rehab Institute of Chicago's website, and wanted to > pass it on to you. I am so proud of my girls and grateful to have someone > like Steve in my life who NEVER stops pushing and supporting me in turning > my dreams into realities! I will warn you, it is fairly long, at slightly > over 12 minutes...and if you get emotional over miracles, have a box of > tissue handy as you'll witness the birth of le (don't worry, it is > very family friendly). > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > Thanks for listening, and enjoy! > > > > Amy M. Marquez > > > > " You can go on living, or you can go on dying.the choice is yours! " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Amy, That was great! I'm so glad you had doctors like this to help you make your dreams possible! Take Care, Kimi }i{ Visit my myspace page and blogs: _www.myspace.com/ksmile96_ (http://www.myspace.com/ksmile96) }i{ " And that last kiss I'll cherish until we meet again. And time makes it harder, I wish I could remember. But I'll keep your memory, you visit me in my sleep. My darling, who knew? " -Pink In a message dated 10/26/2007 10:41:25 A.M. Eastern Daylight Time, amym_dchj@... writes: I wanted to share something about myself and my family that I am very proud of, though I had no idea what I was getting us into at the time... Back in July, my physiatrist, Dr. Kristi Kirschner at the Rehab Institute of Chicago, requested permission to use my story of living with Spinal Muscular Atrophy Type 1, enduring two successful pregnancies, and being a wife / mother despite the severity of my condition to a group of women executives. Of course, I agreed and didn't even bother to ask questions...Of course, grateful to the three docs who stood beside us throughout our quest to become parents, and would do most anything in support of them. Dr. Kirschner wanted to conduct a follow-up video-taped interview for her presentation (for those who may not know, my pregnancy with le was taped from beginning to end by RIC and Northwestern Hospital staff, and continues to be used amongst the medical education curriculum at Northwestern University), and we arranged to meet with the appropriate interview / film crew in mid-September. The day worked out well; the crew was very warm, down-to-earth, and friendly, and the girls loved the attention being focused on them being completely themselves, just being kids! After everything was done and the film crew was packing up their equipment, Steve got to talking to them and learned that the presentation was for a group called " 200 Women in Power, " but, in reality, there would be a little over 400 women in attendance. The name meant nothing to him, so he asked questions about it and was told the members included women such as Diane Sawyer and Courick (sp?), to name a few. Of course, he waited until everyone had left to tell me, and suddenly I became quite nervous. Yes, I want to share our story in an offer of hope to others, but I can be very shy and modest at times! I was recently advised that the presentation went very well and all were quite moved by my / our story, but had not had the opportunity to see the final outcome of video footage. Yesterday, I received notice that the video had been posted on the Rehab Institute of Chicago's website, and wanted to pass it on to you. I am so proud of my girls and grateful to have someone like Steve in my life who NEVER stops pushing and supporting me in turning my dreams into realities! I will warn you, it is fairly long, at slightly over 12 minutes...and if you get emotional over miracles, have a box of tissue handy as you'll witness the birth of le (don't worry, it is very family friendly). _http://www.ric.http://www.http://www.rihttp://www_ (http://www.ric.org/videos/case_studies/index.aspx) Thanks for listening, and enjoy! Amy M. Marquez " You can go on living, or you can go on dying.the choice is yours! " [Non-text portions of this message have been removed] ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 That was amazing Amy! Truly inspiring. > > I wanted to share something about myself and my family that I am very proud > of, though I had no idea what I was getting us into at the time... > > > > Back in July, my physiatrist, Dr. Kristi Kirschner at the Rehab Institute of > Chicago, requested permission to use my story of living with Spinal Muscular > Atrophy Type 1, enduring two successful pregnancies, and being a wife / > mother despite the severity of my condition to a group of women executives. > Of course, I agreed and didn't even bother to ask questions...I am beyond > grateful to the three docs who stood beside us throughout our quest to > become parents, and would do most anything in support of them. Dr. Kirschner > wanted to conduct a follow-up video-taped interview for her presentation > (for those who may not know, my pregnancy with le was taped from > beginning to end by RIC and Northwestern Hospital staff, and continues to be > used amongst the medical education curriculum at Northwestern University), > and we arranged to meet with the appropriate interview / film crew in > mid-September. The day worked out well; the crew was very warm, > down-to-earth, and friendly, and the girls loved the attention being focused > on them being completely themselves, just being kids! After everything was > done and the film crew was packing up their equipment, Steve got to talking > to them and learned that the presentation was for a group called " 200 Women > in Power, " but, in reality, there would be a little over 400 women in > attendance. The name meant nothing to him, so he asked questions about it > and was told the members included women such as Diane Sawyer and > Courick (sp?), to name a few. Of course, he waited until everyone had left > to tell me, and suddenly I became quite nervous. Yes, I want to share our > story in an offer of hope to others, but I can be very shy and modest at > times! > > > > I was recently advised that the presentation went very well and all were > quite moved by my / our story, but had not had the opportunity to see the > final outcome of video footage. Yesterday, I received notice that the video > had been posted on the Rehab Institute of Chicago's website, and wanted to > pass it on to you. I am so proud of my girls and grateful to have someone > like Steve in my life who NEVER stops pushing and supporting me in turning > my dreams into realities! I will warn you, it is fairly long, at slightly > over 12 minutes...and if you get emotional over miracles, have a box of > tissue handy as you'll witness the birth of le (don't worry, it is > very family friendly). > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > Thanks for listening, and enjoy! > > > > Amy M. Marquez > > > > " You can go on living, or you can go on dying.the choice is yours! " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Amy: You are truly an inspiration. This is a wonderful Video. You are a miracle and so are those two beautiful girls of yours !! Thank you for sharing!! You have a great family!!!! Jeanna --- <sweetleo03@...> wrote: > That was amazing Amy! Truly inspiring. > > > > > > I wanted to share something about myself and my > family that I am > very proud > > of, though I had no idea what I was getting us > into at the time... > > > > > > > > Back in July, my physiatrist, Dr. Kristi Kirschner > at the Rehab > Institute of > > Chicago, requested permission to use my story of > living with Spinal > Muscular > > Atrophy Type 1, enduring two successful > pregnancies, and being a wife / > > mother despite the severity of my condition to a > group of women > executives. > > Of course, I agreed and didn't even bother to ask > questions...I am > beyond > > grateful to the three docs who stood beside us > throughout our quest to > > become parents, and would do most anything in > support of them. Dr. > Kirschner > > wanted to conduct a follow-up video-taped > interview for her presentation > > (for those who may not know, my pregnancy with > le was taped from > > beginning to end by RIC and Northwestern Hospital > staff, and > continues to be > > used amongst the medical education curriculum at > Northwestern > University), > > and we arranged to meet with the appropriate > interview / film crew in > > mid-September. The day worked out well; the crew > was very warm, > > down-to-earth, and friendly, and the girls loved > the attention being > focused > > on them being completely themselves, just being > kids! After > everything was > > done and the film crew was packing up their > equipment, Steve got to > talking > > to them and learned that the presentation was for > a group called > " 200 Women > > in Power, " but, in reality, there would be a > little over 400 women in > > attendance. The name meant nothing to him, so he > asked questions > about it > > and was told the members included women such as > Diane Sawyer and > > Courick (sp?), to name a few. Of course, he waited > until everyone > had left > > to tell me, and suddenly I became quite nervous. > Yes, I want to > share our > > story in an offer of hope to others, but I can be > very shy and modest at > > times! > > > > > > > > I was recently advised that the presentation went > very well and all were > > quite moved by my / our story, but had not had the > opportunity to > see the > > final outcome of video footage. Yesterday, I > received notice that > the video > > had been posted on the Rehab Institute of > Chicago's website, and > wanted to > > pass it on to you. I am so proud of my girls and > grateful to have > someone > > like Steve in my life who NEVER stops pushing and > supporting me in > turning > > my dreams into realities! I will warn you, it is > fairly long, at > slightly > > over 12 minutes...and if you get emotional over > miracles, have a box of > > tissue handy as you'll witness the birth of > le (don't worry, it is > > very family friendly). > > > > > > > > http://www.ric.org/videos/case_studies/index.aspx > > > > > > > > Thanks for listening, and enjoy! > > > > > > > > Amy M. Marquez > > > > > > > > " You can go on living, or you can go on dying.the > choice is yours! " > > > > > > > > [Non-text portions of this message have been > removed] > > > > > www.our-sma-angels.com/elizabeth/ http://www2.caringbridge.org/il/elizabeth/ Jeanna Huette caretaker/grandmother to Even terrifying things that hide in the shadows can be overcome by the light of consciousness. However, the problems start when we choose denial over awareness, allowing our fears to grow. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 some good news: My friend that has been very paranoid about the swine flu and had been asking me for information had scheduled an appt for her 2 yr old and herself to get the vaccine yesterday. She text me thurs night and told me to convince her not to do it. So, I gave her the same info I had been...and to be honest, I was kind of annoyed that she was still debating it, because in my mind, that told me she had not been reading anything I had sent her. I even sent her the package inserts. Anyways, I used the mercury thermometer as an example, how we are told not to touch it if it breaks, and that there was more mercury in the shot she was about to have injected into her son.Well, I didn't get much sleep the past couple of nights, because I really thought I had failed. She didn't say what she was going to do. Well, I called her this morning, and she told me she had cancelled the appt!! She said that the example of the thermometer was her " ah-ha " moment, and that it just clicked what she was about to do. I wanted to do cartwheels when I got off the phone, I was so happy! Finally, I got through to someone...it seems like I stand alone a lot, so it was nice to know that someone finally listened. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 wonderful Keep giving her doses of info as she is still in a very precarious state Sheri At 11:39 AM 10/31/2009, you wrote: > some good news: My friend that has been very paranoid about the > swine flu and had been asking me for information had scheduled an > appt for her 2 yr old and herself to get the vaccine yesterday. She > text me thurs night and told me to convince her not to do it. So, I > gave her the same info I had been...and to be honest, I was kind of > annoyed that she was still debating it, because in my mind, that > told me she had not been reading anything I had sent her. I even > sent her the package inserts. Anyways, I used the mercury > thermometer as an example, how we are told not to touch it if it > breaks, and that there was more mercury in the shot she was about > to have injected into her son.Well, I didn't get much sleep the > past couple of nights, because I really thought I had failed. She > didn't say what she was going to do. Well, I called her this > morning, and she told me she had cancelled the appt!! She said that > the example of the thermometer was her " ah-ha " moment, and that it > just clicked what she was about to do. I wanted to do cartwheels > when I got off the phone, I was so happy! Finally, I got through to > someone...it seems like I stand alone a lot, so it was nice to know > that someone finally listened. > >~ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.