Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Vicki, you're a very special person. I have no doubt that you'll make the right choices for . He won't be alone. And you sound like a fighter, too. Let's hope the surgery will go well and that you live a long and full and healthy life. Anne, mom of Penina (CHARGE, almost 3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Wow Vicki, you have a lot to deal with right now. I think all of us worry about what will happen to our children after we're gone, particularly when you know they'll need support for the rest of their lives. has a nice nest egg thanks to the law suit we filed against Chrysler after the deaths of our two children. But he needs someone who will care for him and make sure that his money is not squandered, and that his needs are met. I am kind of counting on my older children for that, or my sister in law who is a professor of special education at East Carolina University. But we need to get our plans tied down not because we are facing what you are, but anything can happen to anyone any time. It's so hard to see fear in our children, and I know what you mean about 's fear for you. I remember picking up our adopted son Seth from his foster mother in Guatemala. She had had him for 15 months from birth. He was terrified, and she was devistated, and we felt terrible. You just hate to do that to a kid, even though in the long run it was a positive thing for him. Thanks for sharing all this with the list. It reminded me of what we need to take care of for . And I also hope you'll use us as a sounding board about your heart surgery. When you face something like that I think it helps to have people to listen and we're out here. Tim Hartshorne wrote: > > > Dear Patty and Patty's mom, > > Reading your post was like hearing myself. I'm 's mom (23). I > haven't gotten into the heart of how we got . is adopted. > He spent the first 51/2 years of his life in a institution in the same > room with children who were dying. > I married at 18 and had my daughter Dawn when I was 19. At the age > of 23 I found out that I was born with a curvature of the spine (sway > back). Having my daughter had damaged my lower spine and I needed to > have a spinal fusion. Complications with the surgery and 2 months later > I came out of the hospital. I had one clot lodge in my lunge, blood > thinners made me hemorrhage on the spine and I was paralyzed from the > waist down. Took the body cast off and got me up walking to try and > prevent more clots. Didn't work developed clots in leg. They took me > back in for the 3rd surgery the put a restricting clamp on the lower > veina cave to stop the clots from going to my heart and lungs. Stopped > breathing , spent a week in intensive care on a respirator. God and > youth were on my side and I walked out of that hospital. The down side > was I was told that it was no longer a safe thing to have anymore > children. > This is were came into my life. We wanted more children so we > became foster parents. We were sent to the hospital were was to > work with a little girl who was micro cephalic. She was in the same room > as . I went to the hospital everyday for 2 weeks to learn how to > care for Kimmy. When she would be sleeping I would sit on the floor and > play with . He was so bright. He just glowed. There were allot of > things wrong with him. I know know that he was a CHARGE baby with > involvement in all areas. He had already had countless operations. All > without the love and support of a family. He and I formed a bond in that > 2 weeks. Everyday when it came time for me to go home he would wrap > those little arms around my neck and kiss me good-bye. The day to bring > Kimmy home with us came. All her bags were packed and sitting by her > crib. figured out that Kimmy was leaving with us. Came time to > leave and I went to to kiss him good-bye and he started to cry and > point his finger to himself and then to me. He had to be pulled off of > me screaming. I cried all the way home. I'm crying now. Silly me. The > memory still chokes me up. But good things came and we worked at getting > out of the hospital. It was a little difficult because he was not > from our area and we had to become foster parents of a county we didn't > live in. > Now I debated whether to even go into this on the list but I need > someone who understands what I am faced with at this point in time. > has come a very long way. I was really hoping for him to be able > to live with minimal support but that's not going to happen. The problem > is I just found out 3 months ago that I will be needing major heart > surgery in the next few years. My chances of surviving are not as good > as I would like to have. I am so worried about . I've been working > to develop a group home for and three other deaf people. With any > luck the home may be up and running sometime next summer. There are just > so many things to consider. I have been the major support for from > the beginning. I have to be very careful talking with about my needing > the operation because he get really scared. He knows to well what > happens in hospitals. You all understand how involved we get with our > kids. We have to be so many things for them during those growing up > years that such a close bond forms. I don't mean to sound like I'm > burying myself but the doctors are scaring me. The last time I was in a > hospital I almost didn't come home. > Oh , this has turned into a book. I'm sorry. Just needed to talk. > :-) > Vicki mom to (23) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Vickie, Anything we can do, please let us know. You are a brave woman and you have done a wonderful job with . Thank you for sharing such personal information with us. I think it makes all of us wake up and take a look at what we need to do to plan for the time when we are not around for our kids. We send you all the best and all the Charge family love! Jacque C. Austin and 's mom KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Note to Marilyn Ogan....suggestion for 2001 contained here... > > >Wow Vicki, you have a lot to deal with right now. I think all >of us worry about what will happen to our children after >we're gone, particularly when you know they'll need support >for the rest of their lives. <snip> This was one of the issues brought up at the " 13+ " breakout sessions and many people suggested having someone in 2001 who could help deal with these issues. A lawyer to help deal with legalities of kids relating to coming of age, someone who can help deal with living arrangements if assistance is needed for moving out of the house, etc. Dee (Kayla's mom) doesn't envision Kayla moving away from home, but it would be nice if A) there were options and to know what they were if they existed. At the same time, as Vickie and Tim have pointed out, some of those issues may confront us before we are ready! A lwyer might be able to help with guardianship issues as well.... Bob jamesgang@... Teacher to Kayla age 16 11 days before school starts again! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 In a message dated 7/30/99 10:47:48 AM Eastern Daylight Time, bobjames@... writes: << A lawyer to help deal with legalities of kids relating to coming of age, someone who can help deal with living arrangements if assistance is needed for moving out of the house, etc. Dee (Kayla's mom) doesn't envision Kayla moving away from home, but it would be nice if A) there were options and to know what they were if they existed. >> Bob, Voight here, I can't imagine Mark living away from home either! But I do have to be realistic, We won't be around forever to care for him. I would really like some sound advice from a Lawyer. And some options I'd be comfortable with, NOW THAT MIGHT BE THE HARD PART LOL! A great idea for the conference. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Vicki, I hope you get things in place with the other deaf folks and the home before your surgery, I " ll be thinking of you as I know you must be just about frantic right now with worry over . You've brought a lot of hope to me with your stories of , and I hope everything goes really well with your surgery almost on a selfish note, because I'd love to keep hearing your stories, and also because I'm really looking forward to meeting you and in Indy. Lots of love, Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Dear Patty and Patty's mom, > > Reading your post was like hearing myself. I'm 's mom (23). I >haven't gotten into the heart of how we got . is adopted. >He spent the first 51/2 years of his life in a institution in the same >room with children who were dying. > I married at 18 and had my daughter Dawn when I was 19. At the age >of 23 I found out that I was born with a curvature of the spine (sway >back). Having my daughter had damaged my lower spine and I needed to >have a spinal fusion. Complications with the surgery and 2 months later >I came out of the hospital. I had one clot lodge in my lunge, blood >thinners made me hemorrhage on the spine and I was paralyzed from the >waist down. Took the body cast off and got me up walking to try and >prevent more clots. Didn't work developed clots in leg. They took me >back in for the 3rd surgery the put a restricting clamp on the lower >veina cave to stop the clots from going to my heart and lungs. Stopped >breathing , spent a week in intensive care on a respirator. God and >youth were on my side and I walked out of that hospital. The down side >was I was told that it was no longer a safe thing to have anymore >children. > This is were came into my life. We wanted more children so we >became foster parents. We were sent to the hospital were was to >work with a little girl who was micro cephalic. She was in the same room >as . I went to the hospital everyday for 2 weeks to learn how to >care for Kimmy. When she would be sleeping I would sit on the floor and >play with . He was so bright. He just glowed. There were allot of >things wrong with him. I know know that he was a CHARGE baby with >involvement in all areas. He had already had countless operations. All >without the love and support of a family. He and I formed a bond in that >2 weeks. Everyday when it came time for me to go home he would wrap >those little arms around my neck and kiss me good-bye. The day to bring >Kimmy home with us came. All her bags were packed and sitting by her >crib. figured out that Kimmy was leaving with us. Came time to >leave and I went to to kiss him good-bye and he started to cry and >point his finger to himself and then to me. He had to be pulled off of >me screaming. I cried all the way home. I'm crying now. Silly me. The >memory still chokes me up. But good things came and we worked at getting > out of the hospital. It was a little difficult because he was not >from our area and we had to become foster parents of a county we didn't >live in. > Now I debated whether to even go into this on the list but I need >someone who understands what I am faced with at this point in time. > has come a very long way. I was really hoping for him to be able >to live with minimal support but that's not going to happen. The problem >is I just found out 3 months ago that I will be needing major heart >surgery in the next few years. My chances of surviving are not as good >as I would like to have. I am so worried about . I've been working >to develop a group home for and three other deaf people. With any >luck the home may be up and running sometime next summer. There are just >so many things to consider. I have been the major support for from >the beginning. I have to be very careful talking with about my needing >the operation because he get really scared. He knows to well what >happens in hospitals. You all understand how involved we get with our >kids. We have to be so many things for them during those growing up >years that such a close bond forms. I don't mean to sound like I'm >burying myself but the doctors are scaring me. The last time I was in a >hospital I almost didn't come home. > Oh , this has turned into a book. I'm sorry. Just needed to talk. >:-) >Vicki mom to (23) > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 1999 Report Share Posted July 31, 1999 Dear Patty and Patty's mom, Reading your post was like hearing myself. I'm 's mom (23). I haven't gotten into the heart of how we got . is adopted. He spent the first 51/2 years of his life in a institution in the same room with children who were dying. I married at 18 and had my daughter Dawn when I was 19. At the age of 23 I found out that I was born with a curvature of the spine (sway back). Having my daughter had damaged my lower spine and I needed to have a spinal fusion. Complications with the surgery and 2 months later I came out of the hospital. I had one clot lodge in my lunge, blood thinners made me hemorrhage on the spine and I was paralyzed from the waist down. Took the body cast off and got me up walking to try and prevent more clots. Didn't work developed clots in leg. They took me back in for the 3rd surgery the put a restricting clamp on the lower veina cave to stop the clots from going to my heart and lungs. Stopped breathing , spent a week in intensive care on a respirator. God and youth were on my side and I walked out of that hospital. The down side was I was told that it was no longer a safe thing to have anymore children. This is were came into my life. We wanted more children so we became foster parents. We were sent to the hospital were was to work with a little girl who was micro cephalic. She was in the same room as . I went to the hospital everyday for 2 weeks to learn how to care for Kimmy. When she would be sleeping I would sit on the floor and play with . He was so bright. He just glowed. There were allot of things wrong with him. I know know that he was a CHARGE baby with involvement in all areas. He had already had countless operations. All without the love and support of a family. He and I formed a bond in that 2 weeks. Everyday when it came time for me to go home he would wrap those little arms around my neck and kiss me good-bye. The day to bring Kimmy home with us came. All her bags were packed and sitting by her crib. figured out that Kimmy was leaving with us. Came time to leave and I went to to kiss him good-bye and he started to cry and point his finger to himself and then to me. He had to be pulled off of me screaming. I cried all the way home. I'm crying now. Silly me. The memory still chokes me up. But good things came and we worked at getting out of the hospital. It was a little difficult because he was not from our area and we had to become foster parents of a county we didn't live in. Now I debated whether to even go into this on the list but I need someone who understands what I am faced with at this point in time. has come a very long way. I was really hoping for him to be able to live with minimal support but that's not going to happen. The problem is I just found out 3 months ago that I will be needing major heart surgery in the next few years. My chances of surviving are not as good as I would like to have. I am so worried about . I've been working to develop a group home for and three other deaf people. With any luck the home may be up and running sometime next summer. There are just so many things to consider. I have been the major support for from the beginning. I have to be very careful talking with about my needing the operation because he get really scared. He knows to well what happens in hospitals. You all understand how involved we get with our kids. We have to be so many things for them during those growing up years that such a close bond forms. I don't mean to sound like I'm burying myself but the doctors are scaring me. The last time I was in a hospital I almost didn't come home. Oh , this has turned into a book. I'm sorry. Just needed to talk. :-) Vicki mom to (23) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 --Welcome Vicki and , You're storie brought tears to my eyes, you are an inspiration. My prayers will be with you these coming weeks. please let us know when your surgery will be, you will have many people praying for you from this list. Mom to , Kaitlynn & (18 months) Charge --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1999 Report Share Posted August 11, 1999 , Thank you, there are a lot of people praying and giving support this list and here at home. I thank God everyday for them. Vicki mom to (23) & Hay wrote: > > > --Welcome Vicki and , You're storie brought tears to > my eyes, you are an inspiration. My prayers will be with you > these coming weeks. please let us know when your surgery > will be, you will have many people praying for you from this > list. Mom to , Kaitlynn & (18 months) > Charge > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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