Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 In a message dated 3/9/02 12:01:22 AM Central Standard Time, HFAUSTINI@... writes: > I just feel like I need to release some of my thoughts to someone before I > explode. Although in some ways I know some of you, I don't want to talk to > Hedi, I can really relate & understand what your feeling right now. Talking to someone & releasing what you've got pent up inside will do you a world of good & I know when you finished with your post, you felt as if the world had been lifted off your shoulders. I went through the same type of feelings & anxiety as your battling right now. Cody was diagnosed about the same time as Hailey. We didn't even have a computer, everything we could find were from autopsy reports etc. I've never been so low in my life & there seemed to be no hope. Add to this: I'd broken both ankles, ( no one would hire me due to it putting their insurance premiums in a higher category). I'd battled the system got my disability & was going back to school. We found out Cody was on the way & I quit school & tried with greater resolve to get a job to no avail. The house we lived in used to be a barn, I can remember my grandfather milking a cow in my living room. I'd earlier applied for a student loan & put the money back to keep me in transportation to get to school. Well, since that was history, I worked on the house to keep our baby from one day being embarrassed if he had a friend over. Keeping busy helped me keep my sanity knowing that thier was a problem, but not a clue as to what lay ahead. I went to see a shrink because I was about to LOOSE it. I started trying aniti depressants, & if they didn't work, I'd ask to try another. Thank God I did, I finaly found one that works for me & I still take them EVERYDAY. I've had a great many things screw up for me & if I didn't believe & pray simple prayers everyday, nothing would get me thru my life's ordeal girl. I know about the " greater plan " , been there done that, questioned & cussed & tried to reason it all out. We won't know until we pass to the other side. I thought about suicide, came close a couple of times but, I had to think about what was going to happen to Cody. I never knew what love was till that child came into my life. I had no idea what depth there was involved in that word. We've come close to loosing him a couple of times with his breathing shutting down when he has a seizure. I can't express what that does to you inside. I know that my life wouldn't be worth living without my boy. When it comes down to it, there's nothing you can do but pray.. Don't take no for an answer when dealing with Dr.'s, & don't waste a precious minute in your life doing anything but loving that baby, as none of us are promised tomorrow. The best advice I can give you girl, is don't sweat the little things, seek some help psychological help, venting to them, time to yourself & the proper medication will see you thru. Oh yes, one more thing. Spend some time on your knees humbly, asking for inner strength, help & guidance. <hug> Love ya girl, give that most precious child a kiss from me. ;-) Nothing but blessing ahead for you I hope, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 In a message dated 3/9/02 12:01:22 AM Central Standard Time, HFAUSTINI@... writes: > I just feel like I need to release some of my thoughts to someone before I > explode. Although in some ways I know some of you, I don't want to talk to > Hedi, I can really relate & understand what your feeling right now. Talking to someone & releasing what you've got pent up inside will do you a world of good & I know when you finished with your post, you felt as if the world had been lifted off your shoulders. I went through the same type of feelings & anxiety as your battling right now. Cody was diagnosed about the same time as Hailey. We didn't even have a computer, everything we could find were from autopsy reports etc. I've never been so low in my life & there seemed to be no hope. Add to this: I'd broken both ankles, ( no one would hire me due to it putting their insurance premiums in a higher category). I'd battled the system got my disability & was going back to school. We found out Cody was on the way & I quit school & tried with greater resolve to get a job to no avail. The house we lived in used to be a barn, I can remember my grandfather milking a cow in my living room. I'd earlier applied for a student loan & put the money back to keep me in transportation to get to school. Well, since that was history, I worked on the house to keep our baby from one day being embarrassed if he had a friend over. Keeping busy helped me keep my sanity knowing that thier was a problem, but not a clue as to what lay ahead. I went to see a shrink because I was about to LOOSE it. I started trying aniti depressants, & if they didn't work, I'd ask to try another. Thank God I did, I finaly found one that works for me & I still take them EVERYDAY. I've had a great many things screw up for me & if I didn't believe & pray simple prayers everyday, nothing would get me thru my life's ordeal girl. I know about the " greater plan " , been there done that, questioned & cussed & tried to reason it all out. We won't know until we pass to the other side. I thought about suicide, came close a couple of times but, I had to think about what was going to happen to Cody. I never knew what love was till that child came into my life. I had no idea what depth there was involved in that word. We've come close to loosing him a couple of times with his breathing shutting down when he has a seizure. I can't express what that does to you inside. I know that my life wouldn't be worth living without my boy. When it comes down to it, there's nothing you can do but pray.. Don't take no for an answer when dealing with Dr.'s, & don't waste a precious minute in your life doing anything but loving that baby, as none of us are promised tomorrow. The best advice I can give you girl, is don't sweat the little things, seek some help psychological help, venting to them, time to yourself & the proper medication will see you thru. Oh yes, one more thing. Spend some time on your knees humbly, asking for inner strength, help & guidance. <hug> Love ya girl, give that most precious child a kiss from me. ;-) Nothing but blessing ahead for you I hope, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 In a message dated 3/9/02 12:26:30 PM Central Standard Time, tlcare@... writes: > has a purpose in her life. She is teaching people the real meaning > of love, she is teaching acceptance. She is beautiful and has a very sweet > spirit about her. The people who take the time to know her are affected by > her and blessed. > I don't think ANYONE could have ever stated any better Virginia. I really can't tell you how much your thoughts & sharing them both effect & mean to me. <hug> Best, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 In a message dated 3/9/02 12:26:30 PM Central Standard Time, tlcare@... writes: > has a purpose in her life. She is teaching people the real meaning > of love, she is teaching acceptance. She is beautiful and has a very sweet > spirit about her. The people who take the time to know her are affected by > her and blessed. > I don't think ANYONE could have ever stated any better Virginia. I really can't tell you how much your thoughts & sharing them both effect & mean to me. <hug> Best, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Heidi, Wow ! Did you read my letter to the Liss group the other night ? It sure sounds the same. I have been where you are right now. My is 14 , has PMG, Mitochondrial problem and uncontrolled epilepsy. did walk with lots of effort and sit unsupported . She is now unable to even stand for transfers. All this has happened in the last year and a half. I was so depressed last week because she was having a GI bleed. She no longer can even have anything in her stomach because it does not work. That is due to the mito problem. It is very hard watching your child fall apart. I too am a single mom. It is a heavy load and the hardest thing I have ever had to do. I fortunately am a christian and am blessed to know that my daughter is not like this because of a mistake that God has made. I know and have the joy to know that someday I will see my daughter in heaven in a perfect body . I could not do this without that hope. It is my comfort. She is like this because this is a fallen world. Not because of God. I do not expect you to understand, nor do I mean to preach to you. I am just say there can be joy and peace in this. has a purpose in her life. She is teaching people the real meaning of love, she is teaching acceptance. She is beautiful and has a very sweet spirit about her. The people who take the time to know her are affected by her and blessed. I get through this by trying to accept and look at what she can do. Which physically is not much. I look at the love she eminates. I am blessed to have her and be able to teach her about all that is good and to be able to give her a real mothers love. She will never hurt anyone or do anything to hurt others. She is here to LOVE and hug. So have a chocolate , get a jogger and take that little one out jogging and do as much as you can with her. She is a gift. Do all you want to do, go to the park, zoo, fair, beach, etc. It will help you and in turn help her. alicia is really sick but I have plans to take her and Amber out in a Large Twin Special needs Jogger and do as much as possible this summer. We really need to get out. You can write me or call me anytime. I will listen and love. Virginia ( single adoptive parent) mum to 14 PMG, etc and Amber 12 CP, scoliosis, ?retardation/atustic like behaviors (608)647-4375 tlcare@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Heidi, Wow ! Did you read my letter to the Liss group the other night ? It sure sounds the same. I have been where you are right now. My is 14 , has PMG, Mitochondrial problem and uncontrolled epilepsy. did walk with lots of effort and sit unsupported . She is now unable to even stand for transfers. All this has happened in the last year and a half. I was so depressed last week because she was having a GI bleed. She no longer can even have anything in her stomach because it does not work. That is due to the mito problem. It is very hard watching your child fall apart. I too am a single mom. It is a heavy load and the hardest thing I have ever had to do. I fortunately am a christian and am blessed to know that my daughter is not like this because of a mistake that God has made. I know and have the joy to know that someday I will see my daughter in heaven in a perfect body . I could not do this without that hope. It is my comfort. She is like this because this is a fallen world. Not because of God. I do not expect you to understand, nor do I mean to preach to you. I am just say there can be joy and peace in this. has a purpose in her life. She is teaching people the real meaning of love, she is teaching acceptance. She is beautiful and has a very sweet spirit about her. The people who take the time to know her are affected by her and blessed. I get through this by trying to accept and look at what she can do. Which physically is not much. I look at the love she eminates. I am blessed to have her and be able to teach her about all that is good and to be able to give her a real mothers love. She will never hurt anyone or do anything to hurt others. She is here to LOVE and hug. So have a chocolate , get a jogger and take that little one out jogging and do as much as you can with her. She is a gift. Do all you want to do, go to the park, zoo, fair, beach, etc. It will help you and in turn help her. alicia is really sick but I have plans to take her and Amber out in a Large Twin Special needs Jogger and do as much as possible this summer. We really need to get out. You can write me or call me anytime. I will listen and love. Virginia ( single adoptive parent) mum to 14 PMG, etc and Amber 12 CP, scoliosis, ?retardation/atustic like behaviors (608)647-4375 tlcare@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Thank you so much. Give Cody a hug for me and the girls. Gods Peace, virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Dear Heidi, Hi and I really hope you are doing a little better today. I have been there and at times I just wanted to die myself. I hated my GOD and couldn't understand why we were going through this. Having to deal with so much and going throuh a divorce! (Mine becomes final March 19th) All breakups are hard and it makes it doublelly hard when you have so much on your plate already. And the guilt of seeing your child have to suffer more pain is overwhelming. It's like they don't have enough to deal with already. Well I finally broke down and your letter seems tame to what I was feeling! Paxil was my answer. A low dose to help me get over the edge is how the Dr explained it. And it helped but it is only the beginning. My friends who I had always been strong for learned that - hey I wasn't that strong and were there for me! I realised that by acting so strong I was shutting them out. Sure they don't always understand but they listen and give me the comfort to know I am not alone. And for them, they also get to share in the love that only a special child can give and to rejoice in the milestones. And remember YOU are special too! Take some time for yourself. Go out get your nails done, eat a dinner without the kids and don't feel guilty. Your problems will still be there when your finished but you'll be able to deal with them a little better. Good Luck to you and I'll be praying for you ( I know you are not religious but it helps me when theres nothing else I can do!) Love (s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Heidi, Hope things are going better for you. Hope you are able to get some respite time so you can get out and treat yourself. It is tough being a single parent with NDA kids let alond a child with problems. Please know that we care about you and you can vent all you want. sometimes it helps just to know others are going through the same thing. Are there any support groups in your area? Do they have a social worker in your early childhood or birth to three program that you could ask about getting respite. Even a few hours a week would help. We all need time for ourselves. ((Hugs))) virginia mum to alicia and Amber Quote Link to comment Share on other sites More sharing options...
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