These support opinions are mostly from private mail to PillowAngel@hotmail.com
“God Bless you and keep you and your family. I know he does. I read your blog and am amazed at the love and bravery you have exhibited in keeping Ashley with you and safe. I am a nurse, and hear the horror stories of childlike adult sized people and their difficulties.
Every Pillow Angel should be so fortunate as to get the medical treatment that Ashley has and such protective families.”
“Ashley's parents have made a terrifically difficult decision to do what is best for their child, but their true act of heroism is sharing it with the world, putting up with the slings and arrows of those that will never walk in their shoes, to help the few that will.”
“Ashley sounds like a true angel. We will also benefit from your decision. Instead of being stuck in bed most of the time, Ashley will be out in the world in her stroller, sharing her love and radiance among all. Thank you for sharing your angel with us!”
“Thank goodness for modern science! Thank goodness for parents that put mind and spirit over body. Thank goodness for parents willing to open and share this private ordeal so others can choose for themselves.”
“At first blush the Ashley Treatment seems extreme -- but really, aren't a few days or even weeks of post-op discomfort worth it for decades of a vastly improved quality of life?”
“I read your blog and news reports about your decision. I fully support your foresight and perceptive methods to help yourselves and your daughter manage what must be an extremely difficult situation. It is a shame that you have to go to such great lengths to explain yourselves to those who think that the caregivers' convenience is irrelevant or somehow unworthy. To the contrary, the caregivers' "convenience" is an important consideration in handling this situation. What you have done is very sound for Ashley and for you, and your ability to balance your needs, her needs, and the family's needs is a legitimate concern in making this type of intensely personal and purely private decision. Do not let yourselves feel guilty about this for even one second. And thanks for having the courage to make your rationale and situation public for others who may face the same situation but might not otherwise have thought of taking such steps. Good luck and God bless you.”
“You are beautiful. Thanks for inspiring me with your love and bravery.”
“I think your handling of the situation with your little girl is actually an elegant response to an awful life challenge. More power to you, and try to ignore all those foolish criticisms you've received. I admire your courage and imagination and intelligence.”
“Thank you for sharing your story. I can easily see how Ashley has a much better quality of life in her diminuitive body. Kudos to you for thinking outside the box and coming up with this treatment. I think many parents of severely disabled children would have chosen this route if they knew about it. I know that I would. Don't let the naysayers get to you. I think what you did is very right and very compassionate and loving.”
”I have read the story of Ashley on Fox News and then your blog...more than once...I want to write to tell you how incredibly impressed I am with you and your doctors. To make such difficult decisions about placing a loved child under anesthesia and surgeries must be hard, but to be able to plan for Ashley's future life and care is incredibly impressive. I applaud you and the doctors again for making such brilliant and forward thinking choices. I am hopeful that others will read about this and be able to "take a page" out of your story and perhaps help another beautiful human being benefit.“
“Thanks you for taking the time to explain not only your reasoning for your decision but detail of the procedures and Ashley's condition as well. You are incredibly brave and I have no doubt that while there may be those who critize, there will be a greater number who support your decision, I believe also that the example you set by your loving and pragmatic care for your daughter will open the door for others to use medical science and new technologies to help thier own children and loved ones enjoy a higher quality of life.
You have been given a rare opportunity to impact all of society and I applaude your acceptance and handling of that responsibility.”
“God bless you parents- you obviously have only your sweet daughter's best interests in mind and are doing everything you can to make her life as comfortable as it can possibly be. Shame on the people who judge you, it's easy to judge when you have no idea what it's like to see your child in agony. Any parent who reads your story can easily see that you love your child and are doing everything possible for her.
I was very impressed by your blog- you obviously are well educated people who have considered every possible option to help make Ashley's life more comfortable. Thank you for putting your story out there and exposing yourselves to the public ridcule in an attempt to help others and inform the public. As usual, the media has sensationalized the story and not reported all of the facts.
God bless you and your beautiful family!”
“Ashley is so blessed to have her family and her doctors! And, that blessing will reach other Pillow Angels because of your love for her and your wisdom in making the difficult decisions you have made for Ashley's sake. Ashley has surely made her mark on your hearts, medical history, and the world.
Thank you for sharing your story and the photos of Ashley. Her sweetness and your love for her shines through every one.“
“I'm writing to you to offer my support of your well-publicised treatments to maintain your daughter Ashley at her current size. I hope you aren't too affected by the 'human rightists' and 'serial campaigners' who make a career out of harping on about subjects of which they have no experience. I live in the UK but have worked in your country several times, and I feel the tide of political correctness which started in the US is now sweeping Britain. Here we have daily debates in the media about human rights for rapists and murderers, while we fail to look after our armed services properly. That is just one example. You are the people best qualified to know how to look after your daughter, and I notice that your decision to keep her at her current weight / height and puberty is fully supported by the doctors who treat Ashley.
Have pride in yourselves for making a difficult and contraversial decision, and don't let those who criticise your decision get you down, just because they have nothing better to do with their time. “
“I looked at the pictures of your pillow-angel, Ashley, and they said it all even before I read your blog. What a blessing she must be to you all and how blessed Ashley is to have such a wonderful loving family! I have added your beautiful family to my daily prayers and ask God to continue richly blessing you.
Please disregard any negativity anyone says to you. I think God says that judgement is his job- love is ours and you are doing your job better than any family I have ever seen or read about.”
“I say congrats because not only have you done such a brave thing for your child but congrats for letting the world know and for being so brave. I have a relative who cares for a son of 25 and altough he is not full male size he is too heavy for her and hoists etc can only do so much. It has become a daily struggle to cater for his needs as they both age. To know that you will always be able to hold your 'eternal child'with love and care is a gift she would if she could thank you for.
You are special people and Ashley is so lucky to have you both as parents.“
“I just read about your and Ashleys story on the BBC, and I wanted to tell you that I am supporting you 100% in your decision, and I think you have made the right thing for Ashley.
Do not let yourself influence by those critising you. The moral and the ethics is absolutely on your side. You have done what you could to give your little child as good life as possible. And you deserve every single bit of support from any human being because of that.
I hope you will receive tons of support from all over the world. You and Ashley truly deserve that.”
“I saw the pictures of Ashley and she is the most beautiful human being I've ever seen! Her simle is like the suns beautiful rays shinning down on Earth.And her eyes are like the glimming stars.I just want you to know that she is very blessed to have a family like you guys and I also want you to know that even though she may not sit up or talk or walk I can already see that she will be a vibrent gorgeous woman when she is an adult.And I also know that she has a great, loving, bright personality even through the eyes of the computer she is an angle from what I can see.I send all my love and wishes to all of you espesially beautiful miss Ashley.
Love Rachel Drebert,age 12 “
“I have seen Ashley's story, covered from a negative prospective on the news here in the UK today. In my life, I have never commented directly on a story, or approached a total stranger in this way, but felt I had to write.
Your beautiful daughter is clearly a very lucky, and very loved individual. Whilst I am sure there will be those who cannot understand the love you have shown, I just want to assure you that any open minded, intelligent human being - especially a parent who knows the love of a child - could only support the selfless manner in which you have taken these steps to protect Ashley's quality of life.
No amount of negative headlines or ill-informed comment could possibly take away the comfort that you must take from knowing that your selfless devotion is allowing Ashley to feel the love of a family throughout her life, and avoid the threats, distress and discomfort that a worthless physiological development could bring.
I truly wish you all health and happiness always, and am sure that I speak for the silent majority who admire and understand the love you have towards your child.“
“I came across your story on the Babycenter website, and the way it is portrayed, with minimal details and only stark statements, makes it very shocking. It compelled me to visit your website and learn the whole story.
I melted when I saw the pictures of your beautiful little girl. It is so easy to judge when we hear only stories, and can't picture the reality. Seeing the pictures of Ashley reminded me that I would do absolutely anything for the good of my own children, as you are clearly doing for yours.
I admire your decision to stay out of the media and focus on what's really important. You know that you're doing the right thing, and so does God, and that's all that matters. What everyone else thinks is meaningless. I admire you for brushing off all the negativity and forging ahead with dignity.
You are obviously a very special family, and you were blessed with Ashley for a reason. God must have known he was placing her in good hands. You are remarkable people, and we should all aspire to be more like you. You will be in my thoughts and prayers.“
“Hello, how are you? I was surfing the web and I read about your story and interest led me to your site. When I first read about it, i was unsure as to how to feel, however, I know how media often misconstrues things and that is why I looked at your site. I would like to applaud you and your family on the paths that you are taking to give this little girl the love that all children require. Often children with handicaps are "put away", or left to someone else to care for. Your daughter has an extreme disability and you love her as much, if not more, than your other children and it shows. Many will say it is selfish and done to make your lives easier. However, I see it as something that is making her life more comfortable and in the midst of it, making it easier for you to give her what she needs. If it were just to make your life easier, you would have put her in some hospital and visited her at your convenience. God created doctors, and doctors came up with the technology to do the procedures that were done to your child, so what is the problem? I only wish that more parents and families would love what they have created as you do. I wish you years of love, happiness and prayers. “
Your Mom or Dad will have to read this for you, but I know your bright eyes would smile if you knew. I decided to write because of the negative things some silly people are saying, but they don't matter. What matters are your wonderful parents, who obviously love you more than anything and are doing an amazing job caring for a special child.
How special? That's where the "Thanks" begins: I began this thinking that your parents must be living with a "fortress" mentality by now, hounded by media and blissfully ignorant preachings by people who have never experienced what they are going through. Thanks to you, I now see that they have not only gotten a very special daughter, but they have brought out the best in a very large number of people; people who love and support them because of their unconditional love for you, Ashley.
It takes a very special messenger to touch the hearts of so many truly wonderful people, and that messenger is you, Ashley. You may not actually say the words, but your life, and the care and love given you by your parents raises a joyful chorus that has been heard by literally millions. You've touched and changed lives, including mine. I'm a Gramma, and I promise that I will see and appreciate my son and my grand-daughters more, and I will think of you often and with gratitude.
If there is a Heaven as we are taught, waiting there will be your bike, and dolls, and an apple tree to raid in the summer, and friends with whom you can play jump-rope. If not, then Heaven is right here, right now, every day in the reflection of your incredible parent's eyes.
For you, Ashley. For you. All I can give you are tears, but they are tears of joy.
My love and support to you and your parents,”
“I, too, am in support of Ashley's parents for making a very difficult decision regarding their daughter's future well being. I was also fooled by the media headlines into thinking this case was about some demented parents who wanted to keep an otherwise normal child small. It irks me that they chose the headlines that they did.
As a social worker in a children's hospital (I'm in NY) I've been part of ethics committee meetings for various different reasons. Given all the information presented on behalf of this child and family I would have had no problem voting for them to proceed with the surgeries. My heart goes out to all parents with special needs children.”
“I am an RN who is caring for another Ashley in a homecare environment. I completely support you decision and even though I haven't read your blog--just glanced at it, can come up with many reasons that this is the kindest thing you have done for your daughter.”
“You have in my eyes made your daughter's life much better and given her the potential for a much brighter future. I think the Good Lord was very wise in choosing you for Ashley's parents. You are shining examples of Parents whose love for their child transcends the fear of how our "society" might judge them. I feel lucky to have found your story, your strength and love has touched me. And after seeing your beautiful daughter's pictures I know where much of your strength and love comes from... it shines brightly in her eyes. I really think your household is blessed with more than one angel.”
“god has blessed ashley, by having her born to such loving parents. She is a lot luckier than many of the disabled in this country. Your decision could not have been easy and as a nurse i know many of the caretaking issues you face day in and day out. God bless you.”
“You were faced with a nightmarishly difficult dilemma, and faced it with great courage, creativity, and love. I can't tell you how much I admire you. I am a 53 year old woman who never had children. Reason: I lack courage. I will keep all of you in my prayers.”
“I read with compassionate understanding Ashley’s “frozen-in-time” story (C/M 6/1), and the outcry from do-gooders and rights activists is not surprising. It is apparently all right to have “designer” babies, to have IVF when well past child-bearing age – but it’s not all right for a family to maximize a quality of life for a profoundly disabled child – if it conflicts with “rights”
Do any of these activists actually know what it is like for family carers to turn their home into a work-site, to care 24/7 – for the life of the child, and live the impact of that on their lives, and the lives of siblings - for the rest of their lives?
Invariably the answer is “no”.
More power to Ashley’s parents, whose motivation is love.
It’s about time these activists introduced both responsibility and reality into their “rights” debate.”
“Just to say I have been deeply touched by your devotion to your daughter. You have my strong support. Whatever people say I believe you have acted as responsible loving parents. Ashley is very special to God as are all of your family. He would not intend for her to be in lifelong discomfort and has provided the medical expertise that she needed. I pray that God blesses you all and that you may be an inspiration to others.”
“I am a social worker in the field of child protective services. I think this child looks, in the pictures, like a happy girl. Anything that allows her to live in such a supportive and inclusive family should be done. This is a brilliant idea, I don't know why it hasn't been thought of before. This child is thriving to the best of her abilities. I have been taught by many foster parents that a hopeless case is in the eye of the beholder, many people have taken children with severe problems and they have gone far beyond the doctor's predictions!!!”
“Just a note to say my thoughts and prayers are with you, along with my families. More people throw away their loved ones in institutions and let other people handle their problems, but you have steadfastly made a decision to love and care for your child. You are an inspiration, and I wish the Lord walk with you!”
“Bless you for wanting to care for your little pillow angel. I am a special educator and have worked with young children and young adults who are to big to be move around. To often these children are sent to institutions because they have become to large for the average parent to move and care for. Your choice is only a choice that you should make.
No one should criticize such loving parents who only want to do what is best for your child. God Bless you. You are giving your little angel a wonderful life considering her disibilities. Chin up and don't let the negative comments bring you down. You have done the best thing for all concerned.”
“May God Bless You... and your family for taking such good care of Ashley. If all parent's were as thoughtful, caring and responsible as you, there would be far less need for foster care. My prayers are with you all. Your Christmas card shows your love for your whole family and was very touching.”
“I had just finished watching the "Nancy Grace" show (with her usual opinions which I rarely agree with) and wanted to know more about why she, and her guest Mr. Long, seemed so disturbed with tonights topic. What did they research and have access to that I did not, or was not, aware of? I checked out your blog (the first blog I have ever tried to look up...due to limited computer skills). I commend you, salute you, bless you from my entire heart, and lastly, as strangely as this may seem...almost envy you. Yes, you read right...envy. Your spiritual strength, the God you know and understand, the love in your family, your unselfish thoughts and actions, your willingness, priorities and purpose in life...so many things that I could continue to mention. Your other children will witness unconditional, endless love that you extend, and will continue to extend, to not only Ashley, but to them as well, and all of God's children (no matter what the age) whose lives you touch.
As mentioned, your experience and the sharing of it, will change my life. I know this. I have no children...and have never had a husband or anything that resembled a partner with a common purpose or view on life (at the current age of 47) and I was feeling lonely and self pitying. With some inspiration as you have provided...I wish to embrace what I do have in my life (siblings) and refocus on love.”
“I am a school nurse in Southern California, who has worked as an R.N. with children in the hospital (Pediatrics, Neonatal ICU) and public schools (as a school nurse and Health Services Coordinator) for over 25 years. My daughter is a senior at San Diego State University, and sent your story & blog to me....I have never felt so compelled to write a letter to parents of a child with special needs as I do now.
Thank you. For your inspiration, your love of Ashley, your courage to be ground-breakers in special needs child care, and your willingness to share your personal story with many others. I work with students from ages 3 years to 15 years whose lives and safety (and comfort) are negatively affected by their maturing bodies...when they themselves have mental and physical debilitations so severe (from cerebral palsy, osteogenesis imperfecta, etc) that my heart breaks for them...even while I must continue to organize and implement their daily care in the public school setting.
Please know that Ashley & your family have inspired me and I will share your story with many other school nurses and families!”
“Being a parent is not for the faint of heart, the hopeless, or the deficient in courage and wisdom. We do the best we can with what we have within our reach today. Having two of my own I can understand the choices you've made for your family. God bless you.”
“Isn't it such a shame that people feel they have the right to trumpet their opinion without being fully in possession of the facts. A sad indictment of today's judgemental, accusatory society. …
To Ashley's mum & dad: Congratulations on your strength, courage and bravery. Sorry for the rant, but there are so many people out there shouting without a clue of what they speak. I have just spent the last three years nursing my 9-12 year old son through leukaemia and although my nightmare is over, I have nothing but praise for you and your decisions as during his treatment, he faced death's door several times and was dragged back by conscientious, dedicated medical staff. If there was anything I could have done at those times I would have done it. In order to ease his pain at one stage I OKed the removal of a spoonful of flesh from his lower back and another from his thigh. I also consented to injecting him with potentially fatal drugs in the hope that it would save his life. As a parent, you have to make those decisions - and you have that right!. Its alright for the blogging cognescenti to jump up and down and say how sick you are to prevent Ashley from having children, but they obviously have no idea how hard you must have thought about it and the hours you spent at night talking about your choices. (Ignorance is bliss!)
We can all see that you are intelligent, well informed people who are more concerned about your daughter's welfare than the obfuscated opinions of others. Moreover, I note that although you may be a religious family, you haven't tied yourselves up in the sentimental aspect of faith. All credit to you. God may love us all, but he doesn't interfere in our lives - does he?
Keep loving and caring for Ashley. Her eyes say everything.”
“I just read your blog about your beloved daughter, Ashley, and her special situation. What I took away from your story is the tremendous love you have for Ashley, as well as your other children, and the happy family life you have together. I believe God knew what he was doing when he blessed you with Ashley, and a blessing she most certainly is to all of you! I don't really understand the controversy as your decision to go forward with the treatment is obviously in her best interest. It is so obvious that no one could offer her everything she needs but you all, and the treatment will allow you to care for her the rest of your lives. I feel blessed to know your story and to realize your intense love & devotion to your family, and especially Ashley. I wish each of you much happiness and peace as you continue on your journey as a family.”
“Thank you for caring enough to find new solutions to old problems and for being willing to share your ideas with others. Our world needs more people like you. I have been a nurse for 38 years and believe deeply that you are on the right track. Your daughter is lucky to be in your care.”
“I am a 65 year old father and grandfather. Some of our family have been diagnosed with autism, very severe retardation etc. I have known and been involved with treatment, education and development quite fully since 1964.
I can understand your calling your loving child ‘pillow angel’ because that is exactly what I feel she is and your love for her and her responding love, comes through very clearly, not only in the lines but also between the lines, as you write about her.
Medical science offers us ways to achieve our ends of expressing that love, and you have accepted the best opportunity available, and I am confident that Ashley will accept and respond to that procedure in such a way as to allow that love to grow as our God wills it.
This will not stunt her growth - this will help to facilitate your and her love to grow, and remove many of the possible difficulties that would otherwise reduce the amount of energy that is available for relating to each other (especially those energies associated with direction towards even the tiniest developments in right and wholesome directions).
Your story has been heartwarming and gives reassurance; that we are living in a wonderful day and age and that we have been brought a long way from the mistreatment that was so prevalent 60 and more years ago.
It seems obvious to me that God’s Love prevails in your relationship with your child and that you are sharing that love and emitting it’s light for many, many people with open hearts, to feel it’s warmth and understand the rewards of accepting the challenge of such a delicate decision.”
“There really are angels on earth, and they are not always the kind with wings. The are people like you!!
My husband and I adopted two special needs children back in 2000. We were told they had no disabilities, just our daughter had mild epilepsy.
Our daughter is now terminal. We have already been through so much, including bankruptcy, in taking care of these children. Annie has a IQ in the low teens, she continues to regress, and the more her body matures, the more she seizes, which decreases her life expectancy.
We applaude you both and your decision. If you don't do anything else, make sure that other parents have the same right to these types of decisions as you did. PLEASE!!! I live in Florida and would give any support necessary to be sure no one out there who "has no clue" will take this information and do something dreadful by taking indvidual decisions and rights away. We have already had to fight in the decision on how we will allow our daughter to die. We had to deal with outsider opinions and a full ethics committee and a state multi-agency meeting where someone had turned me, Mom, in for attempting to kill my child. Just like you, We strongly feel that unless you live this life, you have no clue.
We are extremely loving, caring and very self-sacrificing parents. We have and always will want the best for our children. After everything that I have read concerning your situation, I am sure there is a wonderful castle waiting for you all up in heaven. Our daughter has gained alot of weight over the last year, and has grown alot bigger. We can no longer hold her, carry her around, caudle her, or easily move her around. Her nurses have had to almost hurt themselves just to assist her onto a potty chair. I wish I had been given the information that you've had before. I would have desired the same thing. Annie loves to be held. And menstrual cycles increase her seizure activity. Which also decreases her life span.
Thank you, Thank you, Thank you!!!!!!!!!
God Bless your family, one day, God willing, a long, long time from now, our daughters will meet in Heaven. They will run and jump, climb trees, play and talk, talk, talk. They will do anything and everything they want!”
I have just read the story of your Ashley Journey, and am touched deeply.
We were likewise blessed to have our very own "Pillow Angel." Her name was Melanie, and she was indeed an angel among us. In her face we came to see the virtual Face of God, and to be in her presence was bliss for many people.
Our Melanie passed away five years ago at age 37......truly amazing, as she had never been expected to live at all. We, as you, truly treasured every moment we were given to have this treasure among us.
She, too, was our first born, and our other 3 children adored her as we her parents did. They grew to have an uncanny ability to view "the bigger picture" of our world and our universe, and to appreciate the seemingly tiny things in life as well.
This Christmas our 8-year-old granddaughter, Tess, wrote as one of her requests to Santa Claus, "Please let me have Mellie back to play with for a little while." Tess was only 3 when her cousin passed away, but it is apparent that those memories remain potent and beautiful to her. I am sure that her Santa request is filled even now, as her memories of Mellie, who was never really able to "play with her" at all, are what she shall have close in her heart always.
It is also apparent from the faces of those surrounding your Ashley that you feel the inexplicable joy and beauty that your precious one bears for all of you.
Thank you for enlightening your world, Ashley dear, and for sharing your radiance with all of us.
With heartfelt love, Mary”
“Thank you for standing up for YOUR daughter. I am so happy all the treatments and surgery were done BEFORE the crazy media got involved in the decisions YOU made for YOUR child. It is so very obvious that they were for her betterment. At least you didn’t have to go to an open courtroom to try to assist your own child. Glad the ethics committee agreed with you. (those were the ones that needed to assist in making the decision…not the crazy media)
Bless you for your love for Ashley, my prayers to her and you.”
“hi Ashley. how are you doing today. i was passing by & decided to make a stop and look at this lovely web site. nice pictures. wonderful familly. i read the whole thing & i just want to say that ashley has the best parents in the world. parents who care & know what's best for their daughter future life. good luck.
i'm a muslim but i will pray to god that one day ashleay will gain her streinght & walk. god bless her.”
“I have been a special ed. teacher for 15 years and the mother of a special needs child. What you are doing for your daughter takes great courage and I applaud you for it. It is so easy for those who do not have a clue as to what you are going through to make judgments. As I teacher I see so many kids labeled severely and profoundly challenged that grow up physically but not mentally. How much better their lives would have been if they had stayed anywhere close to their intellectual age! Because of your tough and courageous choice, Ashley will live a better life. The idea that this sets a bad example for others is silly. You did not make these decisions in your own best interests, you made them for hers. That is what parents, all of us, are supposed to do. You can't be concerned because someone, somewhere may make a bad decision based on information from Ashley. That is not fair - especially to Ashley. May your Pillow Angel continue to be happy and bring you joy for many years to come.”
“I know you are a busy and devoted family so I will keep this brief.
As a special education teacher, I was intrigued and morally perplexed when I heard your story on NPR. I went back and forth weighing the pros and cons. After looking at you website, and reading the experiences of other parents with children in similarly difficult situations, I understand and agree with your decisions regarding your daughter. As a professional, I am going to do my part in creating greater understanding by disseminating this information to my peers.
I have to admit that we sometimes lose sight of the importance of supporting the family, when faced with wading through the rules and regulations that govern our schools. Thank you for reminding me to look at the whole picture, not just my perspective. I think you have done an excellent job as parents, and I hope that your path is paved with the support and love that you all deserve.”
“I'm a 35 y/o mom of 2 healthy teens in northeast Louisiana and this is the first time I have ever done something like this so bare with me!
I first heard about your daughter on the news, went to the site and read your story. I know that in the grand scheme of things I am just another e-mail but I feel as if I need to give you and your family my full support on your decision. In the post I made as Southern Mother on the MS NBC site, I explained I am a nurse-I have worked 8 years in long term care-I have cared for people with your concerns for Ashley later on in life. I see your decision as something made in the best interest of your child. Isn't that what every parent that ever heard your story wants--a better life for their children??? And just maybe, if there were more caring parents, we wouldn't have this kind of debate. I am truly sorry that you have to be faced with this kind of most difficult decision but I give you alot of praise and respect. And I also hope that through your family's strength and courage, this will pave the way for others to have the resources and the right to make their children's lives better.
Thank you so much for taking time from your lives to listen to me. My prayers are with you and yours.”
“saw your story and the headlines and I just wanted to say that as the father of three children (and a fourth – actually the first – that my wife and I gave up for adoption in college…with whom we recently reunited…21 years later J ), I absolutely support your decision(s). First of all, 99% of all parents are truly trying to do what is in the best interest of their children…most non-parents don’t quite comprehend the innateness of that trait. Second, unless someone has dealt with the practical issues you are dealing with, they really can’t understand the “complete” scenario – they just get the little soundbites and snapshots they hear or read about. Finally, your arguments in defense of your decision (as if you had to provide any defense), are absolutely right on the mark. You are clearly extremely loving parents. You deserve to be held up as examples of completely selfless parental love, not as the centerpiece for an ethics debate. Good luck…and realize that for every email of chastisement that you receive, there are probably 100 people that agree with your decision…and for every email of support, there are another 10,000 that just didn’t write.”
“Dear Loving Parents:
When will our country stay out of the business of those trying to deal with their personal situations. More press is given to your family than those families who unfortunately must warehouse their children and walk away. Where is the intervention for abused, tortured or unloved children. Thats no news unless highly extreme newsworthy.
The courts should not rule or criticise those who must make the hardest decisions parents must make to keep their child at home. Ashley "has" a life with love and family interaction and a chance to experience the joys of life as she can. Not in room 24/7 with little stimulation.
Be at peace!!”
“Well if you actually realize that the child will have no clue what her parents have done, then you certainly realize that she doesn’t even know what breasts are and she never will. This child's disability makes her a perpetual infant for the rest of her life.
She will recognize the sounds of her family member's voices.
She will take pleasure in vivid colors and shapes.
She will take pleasure in physical stimuli.
She will NEVER willingly engage in sex. She will NEVER engage in a friendship, let alone even simple conversation. It's not like she is mildly retarded or has downs syndrome. It cannot even be proven that this 9 year old visually recognizes her own family.
You are putting your own adult thoughts and feelings into a child that is NOT CAPABLE of EVER having them.
I'm not the one with no clue, thank you.
If you knew enough about disabled children you would take one hard look at those pictures of this child and easily see that she is well cared for.
1. She is clean well dressed
2. Her "beds" are always comfortable with lots of padding.
3. (most importantly) Her body is relaxed, not stiff. Why is this important? Because is shows that she IS moved a lot. People who lay in the same position for any length of time will display signs of "stiffness". Hands will ball up into partial fists and fore arms will draw up to the breasts, legs will not bend well at the knee and will tend to stick straight out in front and chins will often point toward the chest.
This child IS well cared for and moved constantly. The problem that some people are having is that this child LOOKS normal. If she had an arm growing out of the center of her forehead, maybe people would leave these poor parents alone and not scandalize their PERSONAL decision.”
“I know 2 families with disabled children, one child was much like this child. As she grew and aged her body twisted till even being propped up became painful. The other child was so large he would have spent his adult years in an institution. He died at 14 from medical error in a hospital. Both children did not survive beyond their teens and never had to be away from the love and care of their family. This procedure is not for the convenience of the parents, the most convenient thing for the parents would be an institution. It assures the child of care by people who love her. There will always be a chance that a cure will be found but that is remote. In an institution setting the child would probably not survive to reach that point anyway. With the mind of a 3 month old she is aware of love and kindness. She probably recognizes her parents. The best gift they can give to her is doing everything possible to keep her where she is loved and properly cared for. The equipment and help needed to care for a disabled adult at home is prohibitive to all but the wealthy. Most people faced with this are forced to legally abandon their grown child and let the state take over. Of the two options keeping the girl small and easily handled is to her best interest.”
“I have just read your entire blog along with all the comments you had from e-mail. I am overwhelmed and moved, to say the least. I know you did the very best thing you could for your daughter. I feel as another person did who commented why hasn't somebody thought of this before. Just think of all the lives it would have changed. I admire you for your courage and strength. I admire you for your desire to take care of your dauhter and not turn her over to some agency or home for her care. She is a beautiful little girl who does indeed look like an angel. May God keep blessing you forever.”
“I challenge anyone to read the entire blog and have anything critical to say about these parents. They have made an amazing discovery about the care for severely disabled children that could prevent endless heartache and pain for everyone involved.
Especially in light of my own sick twinge of envy when I hear of someone having a hysterectomy, and my nearly lifelong consideration of when a breast reduction would be imperative vs. just cosmetic.”
“I started watching NG last night and haven't read the parents' log but I heard that Ashley is in essence a 3-mo-old baby and so I have no problem at all with the parents' decisions.
I often agree with NG but last night she got on my last nerve. She kept going on about this as if Ashley had a normal mental and physical development. As if it would be desirable for this BABY to have the body of an adult female and the size as well. That's nuts!!
I support these parents and wish them well in doing their best to care for their child.”
“I hope that you do not mind one more e-mail, as I'm sure that you are overwhelmed with letters. I am a 20 year Emergency Department physician and have served on our hospital's multidisciplinary ethics committee for more than 12 years.
I felt compelled to write to disagree with ethicist Caplan's (U of Pennyslvania) assessment that "Ashley's Treatment" was not for direct patient benefit. Your blog and others' messages make perfectly clear that each decision was made in Ashley's best interest, and for her safety and comfort. I have seen many disabled teen-aged patients in the ED whose care has had to be transferred out of loving homes into institutional facilities, much to the patient's detriment. You know the stories -- falls, bed sores, wound infections, STDs, heart-breaking pregnancies and more. You would have had my complete support had I served on the ethics committee that reviewed Ashley's case. By "pioneering" and publicizing these options, I am certain that many others will benefit from your bravery!
Bless you for all that you've done for your "pillow angel."My sincere admiration and best wishes”