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znarkm

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Everything posted by znarkm

  1. znarkm

    Looking for support (for daughter)

    Hi Everyone, Wow - Hard to believe it's been almost a year since I've posted here! It's crazy how time flies. I hope everyone is doing well and getting ready for the holidays! This update is going to be quick, which is a good thing. Lauren is doing very well. Every day continues to get easier for her, and she has really settled into her new norm. The days of thinking about "pre amputation" and "post amputation" are getting fewer and further between for Lauren, and she had an amazingly good semester at school. She's home now, and it's great having her here for the holidays! She continues to use her cosmetic arms regularly, and I think they've given her more confidence to go out and just be herself, even though they aren't functional unto themselves. Cold weather is always a little harder for Lauren given that it's not as easy to go barefoot or in sandals, but she doesn't let it get in her way, and it is truly amazing how her feet and teeth can do so much. The human body truly is amazingly adaptable. I'm going to try to post some new pictures here a little later so you can see just how far Lauren has come. I hope everyone is well. Best wishes for a fantastic holiday season. -Marion
  2. Hello Everyone, My name is Marion. My daughter, Lauren, who is 19, had both of her arms amputated (DSD) last month as the result of an absolutely horrific car accident. The others in the car suffered relatively minor injuries, thankfully. I know this is an extremely rare level of amputations, and I've struggled to find resources to help us through this all. It's obviously been devastating to our entire family. Lauren is doing better than I think many would have expected, but naturally is in a total state of shock. From a physical perspective, we've been told rather bluntly that prosthetics are going to be difficult due to the level of her amputations, but it's obviously something that we want to seriously explore when she's in a better place physically. For now, she's basically completely dependent on us, and we've hired a caregiver to assist. I think from her perspective, this is the hardest part, along with the obvious disfigurement to her body. Is there anyone out there who has been down this road? This is all so new to us and to be honest, we don't even know what we don't know yet, but we all have so many questions and it'd be great to hear from people who have been thru what we're now dealing with. Best, Marion
  3. znarkm

    Looking for support (for daughter)

    Hi Everyone, Oh my, I can't believe it's been so long since my last posting here. I hope everyone is doing well! Lauren is continuing to do very well. She has really adapted well, and makes progress every day. It's hard to believe how independent she has become compared to where we were and how she felt even months ago. Between her feet and other assistive devices, she can do so many things. There are, of course, still days where she misses her arms and feels down, but she's really made the leap to realizing that life is about so much more than her arms. She's still Lauren, and she's still amazing! She's doing well at school, and socially, it's so great for her. She's gotten more comfortable with her body image, too, and has started going out with her cosmetics more often. This has become her new normal, and she's living life. So that's the short update. I'll try to come back more often. I hope everyone has a great weekend! Best, Marion
  4. znarkm

    Looking for support (for daughter)

    Thank you for sharing this Johnny! This is great - And definitely reminds me of Lauren!
  5. znarkm

    Looking for support (for daughter)

    Hi Everyone, I hope you're all doing great! Just a quick update here to let everyone know that Lauren is continuing to do very well. She's home from college now for the summer of course, and it's been great having her back! She has definitely been relaxing, and has been keeping busy seeing her friends, hanging with her sister, and even taking some fitness and yoga classes. It's amazing to see her really resume the life she lead before the amputations. Things definitely have to be done differently, and often take more time and require help, but she's living - Rather than crying and feeling sorry for herself all the time. There are still definitely down moments, but it's been a remarkeable shift in Lauren's outlook, and I am proud beyond words at how well she's adjusting. Her legs and feet really do most of the work, and her flexibility has gotten even better - I guess that's one perk of being so athletic even before the accident! Lauren also has been using voice activation technology, as well as a mouthstick, to use the computer and iPad. She continues to wear her cosmetic arms when she goes out to nice restaurants and for special occasions, but now that it's getting so hot and sticky here in NY, she's been going without them more often - They get very heavy and uncomfortable for her. I hope everyone here is enjoying the summer - And I have a bunch of pictures that I'm going to download from my phone here in the next day or so that I'll post! All the best, Marion
  6. znarkm

    Looking for support (for daughter)

    Hi All, I trust you're all doing well! I know it has been such a long time since I have posted here - It's been crazy! Lots happening on the family and work fronts, and things are now just starting to settle down. Lauren is continuing to make progress and is doing very well, especially as she's starting to wrap up the semester at school. She has really continued to adapt and find new, innovative ways to regain her independence. It isn't always easy, of course, but I think she's found that she can do so many of the things she did before - albeit differently. Her progress continues to inspire everyone who interacts with her. I know this is a short update, but I will make an effort to post more frequently again. With all the best wishes, Marion
  7. znarkm

    Looking for support (for daughter)

    Hi Everyone, So sorry for the long lag in posting... I hope everyone is doing well and having a fantastic holiday season! Everything here is status quo -- Which is to say that things are getting better for Lauren every day. She continues to really adapt and figure things out on a daily basis using a combination of her feet and her mouth, and is slowly but surely becoming more independent. Her confidence is also improving on a daily basis. Lauren did quite well in school this semester, and it has been great having her home for the holiday break! With the incredibly warm weather that we've had in NY, she hasn't even had to abandon her flip flops -- Which, of course, makes life easier. She's been spending time with her friends and her sister, and is taking a very well deserved break. Things continue to go well on the dating front for her, which is such good news.... That unto itself has been an amazing help for her confidence and self worth. Just wanted to send a quick update. I hope everyone has a very happy, healthy new year, and we are definitely looking forward to coming to the next conference this coming year!
  8. znarkm

    Looking for support (for daughter)

    Hi Everyone, I hope everyone is having a great Fall! Here in NY, the weather is finally getting a bit cooler, which is a nice change. Some exciting news -- Lauren is officially dating!! She met a wonderful young gentleman named James in one of her classes at school, and they seem to have hit it off. Lauren was surprised that he took such an interest in her, but he seems to be genuinely interested in her for who she is, arms or no arms. They went on a few dates, and Lauren just seems so happy. She called me up so excited the other day to tell us all about it. They went to a movie the other night, and he even held her foot like one might hold hands. Lauren's exact words were that he makes her feel so normal. I think that the fact that she see that she can still be attractive (even physically) is going to be a major, major step forward for Lauren. It was so exciting to here how excited she was on the phone that I just had to share the update. Everything else is going well -- She's doing well at school, and continuing to adapt and grow. All the best, Marion
  9. znarkm

    Looking for support (for daughter)

    Hi Everyone, I hope you're all doing well. I truly appreciate the well wishes. It means so much. Things are slowly but surely getting back to normal around here, which is good - Being busy makes it easier. Lauren is now back at school. It's amazing that just a year ago, we were so unsure of how she'd do, but now, one year later, she's excelling. She was very excited to get back to her friends and her routine, and since she took summer classes, she's back up to pace with her peers. She continues to have 24/7 help at school, which is so helpful for her, even as she has become more independent. After my mother's passing, Lauren spent a lot of time with us and her sister, and just spent time relaxing. I think she needed it, and she seemed energized as we left her back at school. I know that she's going to have a great year! She continues to make strides physically, as her phantom pain has gotten a lot better, and as her feet and legs have gotten stronger. I know that Lauren still misses the way things were, but she's so good at just continuing to adapt. The hot, humid weather in NY (and now back at school) has made it tough for her to wear her cosmetic arms, so she has been going without them, which I think has made her a bit more comfortable in her own skin. Every day, it gets easier it seems. I hope everyone has a great long weekend... And thanks again for all of the support. Best, Marion
  10. znarkm

    Looking for support (for daughter)

    Hello Everyone, I hope you are all doing well. My apologies for going "off the grid" here. It's been a bit of a tough time. Sadly, my dear mother passed away suddenly following a heart attack, about 4.5 weeks ago. It was quite a shock, as my mother had always been in perfect health and was as sharp and as "with it" as an 86 year old could possibly be. I've been back and forth between NY and Florida to be with my father (who is, so thankfully, in great shape) and to help him deal with her affairs. Lauren took "G-Mommy's" passing especially hard, as my mother was one of her biggest cheerleaders in the days and months following her amputations. Lauren would call my parents from college at least twice a week to check in and to keep them updated on her progress, and I know my mom would look forward to those calls. Lauren made an absolutely beautiful eulogy at the funeral. It's been an incredibly tough time for our family, but Lauren continues to be a rock - And to be my rock. Her strength and courage is what gets me thru all of this. With love and blessings to all, Marion
  11. znarkm

    Looking for support (for daughter)

    Hi All, I hope you're all doing great! We are in the process of trying to make the schedule work to attend the conference in Tucson. Lauren is doing a a summer program at NYU here in New York for a few weeks to get her back on track in terms of credits for college from when she had the accident, so we are just trying to work it out so that she doesn't miss any necessary days. We expect to hear back within the next day or two. Lauren officially finished the semester! Words simply can't express how proud of her we truly are. This has been the most trying year of our lives by far, but she's persevered and has made an enormous amount of progress. It's really hard to believe that one year ago, she was 100% completely dependent on others for even the simplest of tasks, and now she's able to write, eat, and excel in college, with just minimal assistance. I thank this whole group as well for all of the support and words of encouragement. Lauren has been relaxing a bit since she got home from school, and has really enjoyed being back with her closest friends, and of course, her sister. While she of course sill has her difficult days, they're getting less frequent, and I think she's moved past the "grief" stage and has accepted that this is the new normal. I really credit her going back to school and trying to get back into a normal routine for that progress. I also think that having a really good set of cosmetic arms has helped her self confidence in those sticky social situations as well. We had a visit with the Dr. and the prosthetist last week, and thankfully, everything is good on the health side, and her stumps have really healed very nicely. Certainly most, if not all of the scarring is gone, and the medication has really helped her phantom pains and sensations. While she's still not a good candidate for prosthetics, that day is getting closer thanks to all of the technological advances. It's amazing. I will keep you all updated as we make our plan for AZ - We are really, really trying to get there. All the best, Marion
  12. znarkm

    Looking for support (for daughter)

    Hi Everyone! It's been a crazy few weeks here, with some travel and family commitments. Lauren is doing well, and is getting ready to wrap up the semester at school. It's hard to believe that the year is basically done for her - and that it's been a year since she lost her arms. The amount of progress that she has made is remarkable - A year ago, we would have never imagined that she'd be back at school and doing even the simplest things for herself, and yet, thanks to hard work and an amazing attitude, Lauren has excelled. She still needs plenty of assistance, of course, but the progress has been amazing as she's really learned to use her feet and even her mouth. I have told Lauren about the event and about Tisha. I'm sure that once the semester is over, she will reach out. I agree - Meeting others who are in a similar situation (which for Lauren and Tisha, is very rare) is such a valuable thing. All the best, Marion
  13. znarkm

    Looking for support (for daughter)

    Thank you! Tisha is amazing - I just watched some of her videos. I will definitely tell Lauren to reach out to her. I appreciate it, and agree that finding someone else in a similar situation goes such a long way. It's hard to believe that the semester is starting to shift already to final prep and such - It's gone by so quickly! Lauren is doing very well and continues to adapt and adjust to her new life. Best, Marion
  14. znarkm

    Looking for support (for daughter)

    Cheryl, I hope you're recovering well - Sorry to hear you were in the hospital! Lauren came home for a long weekend this past weekend. It was great having her back home here in cold, snowy New York! With the temperatures so low, she obviously couldn't wear her flip flops, so it was a bit more of a challenge for her than usual, as we had to help her in and out of her boots. She handled it very well though! Lauren spent a lot of time with her sister and visited a friend who was also home for the weekend. It was too cold to walk around the city, so they just hung out and had a great time - It was really nice for her. Thankfully, the phantom pain has gotten a lot better... Though she still does have bouts of phantom sensation (i.e. feeling her hands). Though this is obviously frustrating, it's naturally much better than pain, so we'll take it. Valentine's Day was a bit rough for Lauren in terms of reflecting on her relationship status and her perceived prospects, but she pulled thru and I have no doubt that she'll find someone who loves her for who she is beyond her limbs. All in all, it was a good visit home for Lauren... and now she's back in warm weather at school, which she loves. Hope all is well, Marion
  15. znarkm

    Looking for support (for daughter)

    Thank you! And yes - We will definitely plan on attending in July. It would be great to meet everyone!
  16. znarkm

    Looking for support (for daughter)

    Hi Everyone, I hope you are all doing well - And greetings from snowy, cold NYC! I just wanted to send a quick update - Lauren is doing well. She's back at school now for the second semester and so far, it's going very well. We really enjoyed having her home for the winter holidays and for the new year. While there are still many things that she can't do independently, it's gotten so much better as she's adapted to using her feet and even her mouth. There are highs and lows, of course, but the lows are getting less frequent. She has been dealing with some bursts of phantom pain the last week, so we are getting that checked out - There may need to be a change in her meds. I will continue to keep everyone updated. And again, thank you all for your support.
  17. znarkm

    Looking for support (for daughter)

    Thank you! Yes, it's amazing to consider how far we've all come in just a couple of months. While Lauren still has a ways to go, the progress has been amazing and I can't express the joy I feel when I see her doing something that seemed completely impossible just a few months earlier. Her emotional progress has been great as well. I think that Lauren has accepted the fact that her life isn't really ever going to be the same again, but that doesn't mean that her life can't be just as good if not better than it was before - It's just going to be different. She does still have her down moments for sure, but that's still to be expected. Lauren is now home for winter break, and we're all so happy to have her back. Her sister, Alison, is especially happy to have her back! They've been catching up on "girl time", which is so good to see. It's amazing how much they love each other - Alison has been the most amazing sounding board and support system for Lauren. I wish everyone a wonderful holiday season, and will certainly keep you all updated. Thanks again for the amazing support!
  18. znarkm

    Looking for support (for daughter)

    Hello everyone! I can't believe it's been so long since my last note here - Time sure does fly. I hope everyone had a wonderful Thanksgiving! Lauren came home for the holiday, and is now back at school where she's prepping for the final exams. It's hard to believe that the semester just flew by. Thanksgiving went very well. We went to my sister's house, along with 20 other cousins and relatives. For many of them, it was their first time seeing Lauren since her amputations. Those types of situations are normally somewhat hard for Lauren, but she handled it really well and everyone was just so supportive and loving - Not to mention surprised to see just how much Lauren can do on her own! While Lauren did need some assistance eating her Thanksgiving meal, she was able to a really good job using her feet - I was definitely proud, and definitely happy to see just how much progress she's made since she was home last. She's also getting much better at dressing herself, which is a great accomplishment. One thing that we didn't think about upon her return to NY was her footwear. When she's down at school, where it's much warmer, she typically will wear flip flops or sandals that she can easily slip her feet in and out of, but here in NY, it's freezing, so she had to wear shoes and uggs that were much harder for her to take on and off by herself to get access to her feet. This is definitely a learning experience, and Lauren was so good at just going with the flow and trying to adapt. Her resilience is amazing. Lauren is back at school now getting ready for finals, and then she'll be back for winter break and the holidays. I can't wait to have her back home! All the best, Marion
  19. znarkm

    Looking for support (for daughter)

    Thank you, All! Lauren came home to visit last weekend and it was so good to see her! She is definitely making progress. It's hard to imagine that just less than 2 months ago, she was so completely dependent on others, and now she's able to do some things on her own, with just minimal assistance. She has gotten very good at feeding herself, and really only needs help with cutting. She's also gotten much better at dressing herself, and really only needs help with pants, dresses, etc. It's so amazing to see her do things like put a shirt on or brush her teeth! These things seem so mundane to us, but relative to where Lauren was just a few months ago, major progress has been made, and I know that she's continuing to develop her skills and her independence. She also is definitely gaining confidence. I think part of this is driven by her growing independence, but it's also being driven by the fact that she's surrounded by friends and a great support system at school who are rooting for her. While she still does definitely have her down moments, she's come to really rely on her friends to be there for her, and they have been! I hope everyone is enjoying fall, and I will definitely continue to post updates! Best, Marion
  20. znarkm

    Looking for support (for daughter)

    Hi Everyone, I hope you are all doing well and enjoying the end of summer/beginning of fall! I wanted to just give a brief update -- Lauren is continuing to make progress! She is doing well at school, and her grades are in-line with where they were previously, which is amazing considering the challenges that she now faces. She's honing her skills with her feet, and has made a lot of progress with being able to dress herself. While she still needs help of course, she is able to put on her own shirt, which even 4-5 weeks ago seemed like it would be so far away. She's also doing well with feeding herself, and only needs help with cutting - Again, major progress. Socially, her circle of friends remain her main support system - They are amazing. She is absolutely dealing with the stigma of being different, which is really hard, but she is coping. Lauren is going to come home this weekend for a visit - So I will post another update when I actually get to see her! Best, Marion
  21. znarkm

    Looking for support (for daughter)

    Thank you! BethMarie, we will absolutely try to make it to the meeting in July. It sounds great, and I think it would be a great experience for us both -- Especially for Lauren. Lauren seems to be doing well as she continues to adjust to her new norm at school. It's a struggle for sure, but she's managing and learning to accept it. She does definitely feel the effects of being "different" though, and that's tough for her (and for me to hear about). She went to a welcome back party this Saturday with some friends, and had a good time, but did note that many of the boys (who she used to be friendly with) wouldn't even engage with her really. I think dating and relationships will be the toughest part for Lauren now that she's back at school, and in an environment where relationships are blossoming. She is still absolutely beautiful, charming, and intelligent... and I know/pray that the right person will come along for her and will see her for those qualities rather than for her missing arms. Still, though, my heart breaks for her because I know that there are some who can’t look past it. This week, Lauren is resuming her PT/OT, so we are anxious to hear how that goes and excited about the progress that I am confident she will make. On my end, it’s weird not having her home! You’re right in that her care has been a 24/7 job - But that’s my job as a parent. It’s been relaxing, but like any parent sending her kid back to college, I miss Lauren! Her strength throughout this whole thing has been nothing short of an inspiration to me.
  22. znarkm

    Looking for support (for daughter)

    Thank you Cheryl! I am happy to report that Lauren has survived her first week of classes! She has said that it is definitely a radical adjustment, and she's still processing it all and taking it in. It's going to take time. Her classes went well, and the note-taker is proving to be invaluable. While Lauren can write somewhat legibly holding the pen with her toes, it just wouldn't work in the context of a fast-paced class, so it seems like we have a good solution. She's getting used to her aid, and they're developing a good rapport from what I can tell and from Lauren says. It's a definite adjustment to having someone new shower you, help in the bathroom, etc, but she's taking it in stride. The hardest part does seem to be the social aspect, with all of the staring and such, as you would expect. Her friends are being super helpful and supportive, and Lauren is very happy to be back with them - And to see some of her friends from school who she didn't get to see over the summer after her amputations. I do think she's going to have to learn to become even more comfortable in her own skin and with her new body, but she's doing great so far! Best, Marion
  23. znarkm

    Looking for support (for daughter)

    Hi All, Lauren has officially started school! Yesterday was her first day back, and we're back in NY now. Overall, I think it was a very good day for Lauren. She is definitely excited to be back, as school really is where she should be now. She's always loved the freedom and independence of being away, as well as the social aspects of being at a large, dynamic university. I think being surrounded by her friends will only be a good thing for her, and I can tell you that they are all very glad that she is back. It is going to be a major adjustment in that some of that independence and freedom doesn't quite exist just yet, but it will over time. Lauren told me that it felt really weird to be sitting in a class and not have the ability to raise her hand, take notes, etc, but she does have a note taker in each and every class. She did mention that there were plenty of stares, but I (and she) are expecting that -- It is very, very rare to see a double arm amputee, let alone one of Lauren's age, and people are curious. She did not wear the cosmetics yesterday as the weather was so warm. The aide seems to be very helpful and kind, and Lauren is getting used to her. I expect this will take time as well, as there's no doubt that it's an adjustment to have someone brand new touching you, bathing you, feeding you, etc. We are excited to see how she progresses - And I am looking forward to my daily call from her! Thank you for all of your love and support!
  24. znarkm

    Looking for support (for daughter)

    Thank you Ann and Cheryl! We've been very, very busy getting Lauren ready for school! We flew down there last week to start preparations for her return (we're back in NY now), met with the therapists who she will be working with, and met with the 24/7 aide who will be with Lauren. She's very nice, and very willing to help, which is great. Lauren is definitely excited to get back to school, but I think she is nervous at the same time. It's absolutely going to be a challenge for her on many levels, but I know she's going to be able to conquer it. I think the emotional aspect of seeing people for the first time since losing her arms is going to be very hard for her, but I know that her true friends at school will help her get thru it. On the physical side, David and I are comfortable knowing that she's going to have the help she needs when she needs it, and that she'll be continuing her therapy. Lauren is continuing to make progress on all fronts, and her feet are getting more and more flexible as they continue to learn and adapt. She still needs help eating and still needs to be dressed, but she's making progress slowly but surely. She does sometimes get upset about the fact that progress seems slow, so we try to remind her that Rome wasn't built in a day, and that she's undergone a major, major physical change that will take time to adapt. I think she was initially expecting that it would be a matter of a few weeks until she was fully independent, but that's just simply not realistic, and it's going to be a marathon rather than a sprint. We leave Tuesday to head back to school to finish getting all set up - We will keep you posted!
  25. znarkm

    Looking for support (for daughter)

    The adaptive yoga class went very well! Lauren really had a good time, and told Alison that doing something that she always used to do made her feel normal. While it is a definite change from the way she used to do yoga, at least she was able to participate and enjoy herself! I'm also glad that this is a way for her to stay physically active. The girls had a great time together, and Alison is being amazing - Always willing to help her sister with anything and everything. In other news, Lauren's feet are feeling a bit better thankfully - And we are going back to the podiatrist tomorrow for the next round of shots. Also, her scars are beginning to fade a bit, which is very good news!
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