tag:blogger.com,1999:blog-7684525930962718074.post5604296510743340291..comments2023-05-08T08:53:10.566-04:00Comments on Miss Charlie: Our care plan...Shaunahttp://www.blogger.com/profile/01295902289838109583noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-7684525930962718074.post-24139278726696487072009-08-10T21:58:24.715-04:002009-08-10T21:58:24.715-04:00I am very behind on your blog since having Eva. If...I am very behind on your blog since having Eva. If you check old comments, I just wanted to let you know that I understand the decisions you are having to make for Charlie. I am making similar ones for Eva right now. It is so tough to walk that line between "giving up" and trying "too hard" to keep them alive. If you believe in having a higher purpose, I will tell you that one of Charlie's purposes on this Earth (and I am sure there are numerous others) is to touch my life even before Eva arrived. I remember reading your story and sharing your journey for more than a year on c-s.org. Once I had my own terminally ill child, it was your courage and strength in making the tough decisions that helped me stay firm in our decisions for Eva. We have decided to only allow interventions that will improve her life, not just prolong it. That was a lesson I learned from you and one that I repeat to myself every time doubt enters my mind. I ask myself again what will EVA gain from this. <br /><br />For what it's worth, I think you are doing a fabulous job for both of your children. I will continue to follow your journey on c-s.org and on your blog. You are constantly in my thoughts and prayers.Jessicahttps://www.blogger.com/profile/12287091373162278459noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-11003355634265709742009-07-09T07:33:06.602-04:002009-07-09T07:33:06.602-04:00Oh Shauna, I felt like I was reading my own though...Oh Shauna, I felt like I was reading my own thoughts; that's how much I agree with you. It's hard for other people to understand when they haven't experienced our situation, so just ignore anyone else's opinion and do what you know is best for Charlie. We've made the same decision you have, and what some people don't understand is that - in my opinion - it takes more love to let a child decide their own future, not less. You are awesome and I am thinking of you guys. BTW, I definitely know about taking a picture of every single smile, lol! They're so great, you just can't resist! I love that last pic of Charlie outside; her dress is beautiful!Adrianehttps://www.blogger.com/profile/06411467150718371127noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-46365502313029295902009-07-07T02:08:50.471-04:002009-07-07T02:08:50.471-04:00Shauna,
I think you are doing the best you can an...Shauna,<br /><br />I think you are doing the best you can and the best for charlie. (((HUGS)))!!!!!! Your a great mom and I pray every day for you, charlie and adrian. <br /><br />*Spoiledinmyhouseofblue from c-s.orgAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-48232972514537149682009-07-02T09:43:15.713-04:002009-07-02T09:43:15.713-04:00You're amazing. I think you're doing what&...You're amazing. I think you're doing what's right for Charlie.<br /><br />I'll be thinking of all of you.Bhttps://www.blogger.com/profile/09801892618080557925noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-18633132162866808282009-07-02T08:45:57.193-04:002009-07-02T08:45:57.193-04:00Just sending you many hugs of support.Just sending you many hugs of support.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-40257974360588249732009-07-02T01:04:10.159-04:002009-07-02T01:04:10.159-04:00I found your blog from your posts on the special n...I found your blog from your posts on the special needs board on mothering.com. It's very hard being 'in charge' of someone's pain and knowing what is the right thing to do. I admire your strength and dedication to Charlie. You are an inspiration to me. I cannot imagine making the difficult decisions you've made. <br /><br />I think of your family daily and wish you peace and wisdom. <br /><br />AngieAngienoreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-72530143639099217842009-07-01T10:40:09.140-04:002009-07-01T10:40:09.140-04:00HI Shauna, i agree you don't owe people an exp...HI Shauna, i agree you don't owe people an explanation but sure enough people like to judge even thoguh they have NO IDEA what we or more so our kids are going through. Giuli is also a modified code for no b/c they suffering is so great for her at times...it's hard to watch and making her suffer more b/c of what I WANT is selfish as you say. I wish i could help in any way...but i can't other than let you know what a beautiful little girl you have and what a great mommy you are. :)Vanessahttps://www.blogger.com/profile/14026680043397412448noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-77192698937959634532009-07-01T00:09:04.439-04:002009-07-01T00:09:04.439-04:00Shauna, You don't owe anyone an explanation. ...Shauna, You don't owe anyone an explanation. You are the only one who knows what is best for Charlie. I witnessed this first hand when my Grandfather passed away in Jan. I watched him suffer for 7 long months. After my Grandfather finally passed, it made me realize that as much as I love my Grandfather and didn't want to see him gone, he was absolutely miserable and did not deserve to suffer for as long as he did. :( I admire your strength and courage and wish you and your family all the well. You, Charlie and Adrian are in my prayers everyday. KateKatehttps://www.blogger.com/profile/08297081110455256439noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-20011703395289013872009-06-29T19:23:50.090-04:002009-06-29T19:23:50.090-04:00I found Charlie's blog when I was reading her ...I found Charlie's blog when I was reading her friend Ava's blog, and I was drawn in to her life. A few nights ago I stayed up until after 1 am reading every.single.entry. I was close to tears sometimes, but not because I was sorry for her--because she is so lucky to have a mom like you. It takes a strong mom to do all you do, to advocate for your child to the extent that you have.<br /><br />You have given Charlie the best quality of life, despite all the medical roadblocks she has had. A lesser mother would have put her in a long term care facility and visited her regularly.You did not.Now you have really been given a tough thing to deal with. Not only do you have to deal with the decline of your child's health, and eventual death, but now you have to justify it to people. Never doubt what you are doing. You are making the ultimate loving choice for Charlie. You love her enough to let her go in comfort. No matter what other people say, you should get a mother of the year award! Charlie will live forever in so many hearts, regardless of how much longer she is on earth!sarahhttps://www.blogger.com/profile/01751389029725410849noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-33762468565459356902009-06-29T11:02:56.907-04:002009-06-29T11:02:56.907-04:00You are doing what is best for your whole family a...You are doing what is best for your whole family and especially Charlie. It is definitely the hardest decision you will ever have to make, and there's no 'right' or 'wrong' here. It simply is what it is. You would not have been given Charlie by God or the universe or fate or destiny if she wasn't meant to be your daughter, if you weren't strong enough to care for her, if you weren't smart enough to make these decisions for her. <br /><br />I admire you so much because you have not only cared for Charlie the best way you know how, but you have become so much more than a mother. You're a nurse, a caregiver, a Charlie enthusiast if you will. You spend the majority of your time living for her and that speaks volumes of your character. I know a lot of people just don't see her and the situation first hand, so they don't quite understand what it's like or why you've made certain decisions. I'm glad you chose to explain it so well to others and I hope they can understand now. You are an amazing mother and no matter what anyone thinks or says, you know what is best for Charlie. It's not fair that she's as sick as she is in the first place, but it's also not fair to let her suffer any longer than she has to.<br /><br />I'm so incredibly proud of you and I am especially proud to call you my big sister.<br /><br />Love and miss you... give those babies hugs and kisses for me!Sherrie Millerhttps://www.blogger.com/profile/03067541362565232497noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-38447591130269519002009-06-29T00:33:41.750-04:002009-06-29T00:33:41.750-04:00Shauna,
Unfortunately, I may be faced with a simi...Shauna,<br /><br />Unfortunately, I may be faced with a similar situation in a year or few with our youngest daughter, as her disease is progressive in its neurological decline. We are only at the beginning stages of her disease, but the questions still come up.<br /><br />As I read this post, I just kept finding myself shaking my head. I get it. I totally understand where you are coming from, because I have had this same conversation in my head many times. <br /><br />There is the fine line between medical intervention for quality of life to medical intervention because we, the parents, are afraid to let go of our child.<br /><br />{{hugs}}Carriehttp://www.littlemisshannah.comnoreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-88585874694496830132009-06-28T22:57:15.689-04:002009-06-28T22:57:15.689-04:00Shauna,
i've been following Charlie since you...Shauna, <br />i've been following Charlie since you were pregnant with her and i remember those days on c-s.org where we were all waiting for you to have her and then praying for you and her after she was born. You are a wonderful mom and are amazing for all you've done for her. You and Charlie and Adrian are in my prayers.Amyhttps://www.blogger.com/profile/07999590849653024877noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-32160917747137447152009-06-28T22:10:03.263-04:002009-06-28T22:10:03.263-04:00I think you are doing the very best thing for Char...I think you are doing the very best thing for Charlie. It must be so hard to know you are losing her, but at the same time, how lucky that you were chosen to be her mother. You've been given such an incredible gift.Super Ninja Mommyhttps://www.blogger.com/profile/06808891551387047619noreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-73858567522552725552009-06-28T20:04:03.009-04:002009-06-28T20:04:03.009-04:00I just wanted to say that I know you are doing the...I just wanted to say that I know you are doing the very best you can and the very best for Charlie. And she is probably one of the most loved little girls on the planet. As one who had to bury a child, sometimes, one of most loving things you can do for a child who is suffering or who is expected to suffer so greatly is to just let them go while surrounded by as much love as possible. And I am positive Charlie knows she is loved and cherished. We are thinking of you, Adrian, and Charlie...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7684525930962718074.post-18567877108368107482009-06-28T19:43:49.064-04:002009-06-28T19:43:49.064-04:00Shauna,
You have been and continue to be one of t...Shauna,<br /><br />You have been and continue to be one of the strongest moms I know! I admire you so much for putting quality of life above quantity and for putting Charlie's needs before your own.<br /><br />My prayers and positive thoughts are with you, Charlie and Adrian.<br /><br />KAK22 from c-s.orgAnonymousnoreply@blogger.com