Testimonies from Families & Caregivers with Direct Experience
These testimonies from families and caregivers of Pillow Angels share real life experiences that illustrate how the benefits of the Ashley Treatment are indeed real and life changing.
“My heart is with you. I have a 44 yr. old daughter that has gone through 22 surguries that I feel would have, could have been avoided if I'd done as you have done. The heartache, the pain that could have been avoided if I'd done as you have done. My daughter is now placed in a home but I feel I have failed her. I would give anything to have her with me and be able to be her caregiver. God bless you both and your child.”
“How different life will be for Ashley, your little 'pillow angel' then it was for Jimmy my brother who was 'profoundly retarded' and as a 'defectiive child' was placed in a state hospital and 'warehoused' for 25 years until transfered to a nursing home for further warehousing. Jimmy is at peace now. He died at age 48. Your decisions are the right one and any family member of a 'pillow angel' can not help but agree with you.“
“I just wanted to tell you that I applaud your strength, courage, and strong mind to find this help for Ashley. I believe this is a true gateway for other families in your situation. The Lord chose you to be Ashley's parents because He knew that you would follow through the hard times and lean on Him to provide this gateway. I saw my aunt go through the blessings and challeges of her pillow angel that passed away at the age of 18. She was blessed to have her those many years, but had to put her in a home because of the challeges that you foresaw. I also have a three month old and can only imagine her being in this state the rest of her life. My prayers are with you that you continue to lean on God for your strength. Again, I applaud you for finding the available resources and using the God given ablity to help your precious angel. I just wanted to send encouragement to stay on the healthy path you are on.“
“I just felt compelled to e-mail you. I too, have a daughter with similar disabilities-she even looks like Ashley. She is now 16 and had a severe brain injury at birth (no known cause although we believe it was related to a vacuum delivery). Sheis blind, has seizures, a shunt, CP, can't sit, stand, walk or does not know who we are. She is now about 100 pounds and is extremely heavy and in a lot of pain. It is extremely dificult to live with this and to watch your daughter go through so much pain (due to her CP and bilaternal hip dysplasia due to CP). If we had know about this procedure back in the 90's we probably would have moved forward with it. My daughter has no other disabilities either, will develop normally, all internal organs are perfect and will live a normal life. Only parents who have gone through this would understand. I understand your desire to make life easier for Ashley as well as the rest of your family. God bless you and have a wonderful New Year. “
“Not quiet sure how to start this letter...Firstly I think your amazing to have discovered a "solution" to many peoples problems. If that makes sense. We have a severly disabled daughter her name is Paige, and she is beautiful. She suffered perinatal Hypoxia at birth an now has severe cerebral Palsy, Epilepsy and Mycrocephaly. her brain has not grown since she was born. So as you can imagine i am very interested and am going to approach our pediatrician here in New Zealand as paige started Puberty about a year ago and she has severe Epilepsy many things start seizures ie pain, being uncomfortable ect. We also have a little help at home and the help are getting to the state were they are unable to lift her. She is now 8yrs of age and beautiful. So thank you i was inspired by your story.“
“My cousin, who is like Ashley, recently died because she was growing older. She developed some kind of disease due to unhygienic menstrual practices. The quality of life she received from her parents degraded once she grew up. Whom shall we blame for this? Parents who have three more kids and are working full time to provide better life for these kids? I support Ashley's parents' decision. Those talking about human rights have no idea what it is while taking care of these kids.”
“I've been a special needs peds nurse. My own special needs niece died at age 15 for resp. failure caused from a GM seizure caused from, out of control seizures caused from, hormonal changes during puberty!!!! She was in horrid pain from her cycle. She stopped using her crawler due to so much pain and discomfort from her size D breast. She weighed 100 lbs and we had no mechanical lifts and no waiver program to buy her one. IF WE COULD HAVE HAD "THE ASHLEY TREATMENT", I BELIEVE TALISA WOULD BE ALIVE TODAY. WE MISS HER EVERYDAY AND ONLY HAVE A GRAVE TO LOOK UPON. YOU DID THE RIGHT THING! DONT LISTEN TO THESE INGNORANT PEOPLE WHO HAVE NO CLUE. GOD BLESS YOU AND GIVE ASHLEY A KISS FROM ALL OF US! YOU DID THE RIGHT THING.”
“I have a 3 year old son with Lissencephaly (Miller-Dieker Syndrome) who is very similar to Ashley. One of my greatest fears is how will I take care of my precious son as he grows?? There is very little help now when he is still small and cute and so baby-like to outsiders. I have often thought how cruel to have a body grow when his brain is forever that of an infant. He loves to be held and cuddled and what a shame to have him lose one of his greatest joys because his mom can't lift him anymore. I ask anyone in doubt of your situation to spend a day with a family caring for a profoundly disabled child and see firsthand how emotionally & physically draining it can be. I love my son too much to hand over his care to anyone else and feel that the love & care he gets at home has brought him farther than the doctors ever said he would get. I truly feel you have given your daughter a longer quality of life and send my thoughts & prayer to all of you.”
“I've just stumbled across your story on the net. Without taking up too much of your time I would like to say that "Ashley's Treatment" is a wise choice. I was a caregiver to my disabled brother for many years before his death at 16. He was a tall, heavier child who suffered from bedsores. At one point he suffered a broken leg from being dropped during transit. He was too big to move to the couch for cuddles and required a special vehicle to go anywhere. If he had remained small and light we could have taken him on more trips, brought him into bed with us, cuddled him, carried him in our arms.”
“I am the mother of a special needs child. I honestly don't know what I would do in this instance. I try to live one day at a time. My little girl will eventually be too large for me to lift and I worry constantly about what will happen to her then. I applaud you for doing the best that you can to care for your daughter at home.
I can only hope that the world becomes more aware of the struggles that parents of disabled children face and will reach out to help them. Our children are beautiful and we are thankful for every moment that we have with them. Is it too much to ask that they not suffer needlessly? I have a friend with a severely disabled teenage daughter. When she has her period she does nothing but scream. Why is this necessary? It is just another thing that makes life difficult for this wonderful girl and her family.
God Bless Ashley and her parents. “
“I just had to e-mail you and let you know what a beautiful daughter you have. She could pass for being my daughters twin. My daughter was severly handicapped and after reading the article in People, I had to write you. DO NOT let anyone tell you what you did was wrong. I took care of my daughter Samantha for 19 years until July 05 when she passed away. I understand why you has her growth stopped. If I had known about it, I would have considered it myself. For all of those that do not know what it is like to watch as our children cannot feed themselves, play with their siblings or grow to be productive adults, shame on them for passing judgement. I watched as my daughter would go through her menstral cycle with cramping and discomfort. My husband and I know the physical strain it can put on a parent moving our children from the bed to the bathroom and vice versa. You are so brave. Thank you. If more people knew the sacrifices parents of handicapped children go through, they would not pass judgement. I wish you and your family only the best in the future. You will forever be in my thoughts and prayers.
All of my love to all of you “
“There are people who are like you and believe in you. We are a family in New Jersey who have a severely disabled girl named Julia. Very similar to Ashley, maybe a little worse. Just never let ANYONE tell you what is right or wrong when it comes to your daughter. I know your decision came with much thought, heart, and tears. You made the right decision and I admire you. I hope you always do what's right for your daughter because she is YOUR daughter and like me you will do what's best for her. Keep your heads high and just keep loving that beautiful girl. I wish you peace and many more happy moments with your family.“
“After reading your web site it's obvious you did the treatment for Ashley's comfort. I was a care giver for the disabled for 20 years and agree Ashley will have a better quality life. I have witnessed the sadness that families feel when they are forced to put their family member in a home. When the only reason is because they couldn't take care of them because of their size it was heart breaking. I truly believe a lot of severely disabled adults would have benefited from the Ashley Treatment. Only people who have taken care of, loved a pillow angel will understand. I applaud you for really thinking of your daughters future. I'm sure the reaction from some people is disheartening but it's only out of ignorance.“
“I would first of all like to commend you for your strength and love that you have for your child. I have a Bachelors of Science in Nursing--basically an RN. I have cared for adults like your child and applaud the decision that you made. For people to judge you is wrong. They do not know the pain and discomfort that these people quietly suffer. As a new graduate we were always taught that the family is extremely important to the patients treatment. Caregiver burnout leads to inadequate care for the patient. Since the child has the mentally and will always have the mentally of a child there isn't any reason for her to experience the pangs of adulthood. Her life will be better for this. I am watching Nancy Grace at this time, and I hear her speak of things that she knows nothing about. She compares your child to someone that I'm sure is just disabled. Disability is one thing, but when your mind fails to progress we should be proactive and stop thinking of ourselves and what the world will think. You did just that, the love you have for your daughter has shown through and perhaps it will be that beacon of light that will show the world that we can and should do more for those like Ashley. I will keep you in my prayers. Keep your head up during these times of unwarranted judgement. They forget that we should strive to understand and learn not condem and throw stones. People always fear that which they do not know.”
“I read Ashley's story in this week's People magazine, and I immeadiatly wanted to know more about her and your story. I have worked with adults with disabilities for the past ten years, and last years my husband and I decided that we wanted to do more. So when a mutual friend came to us because she knew a young married couple who was caring for their nephew (who had cerebral palsey) and they were stuggling with giving him the care he needed. She asked if we would be interested in taking Tyler into our home and giving him the love and care he needed and so much deserved. We immeadiatly went to meet him and he has been with us since January 2006. We have plans to adopt him as soon as we can. He is about five foot tall, and weighs about 130 pounds. I am used to lifting and transfering clients that I worked with, but I do have to admit after doing it day in and day out it does start to hurt your back. And not only is it hurting our backs but it also hurts Tyler. We are currently in the process of getting him the lifts he needs for inside the house and in the van. I can completly understand all aspects of why you would want to give Ashley the treatments you have. There is no reason for her to have any more pain then she has already gone through. I often asked myself why parents of the clients I worked with would let their daughters go through the pain of a menstrual cycle, when they didn't have to. I sure you will find support from lots of parents that wish they could of gave their children the same treatment you have given Ashley. And if you do not just remember to stay strong and keep what is most important in mind, "What is best for Ashley and her quality of Life." Our family's thoughts and prayers will be with you.”
“I have been in the medical field for 37 years, as a Radiological Technologist (!0) and for the last 27 years as an Ultrasound Technologist. I have seen first hand the scared faces of disabled children and adults, having to have procedures that they did not understand. These procedures were necessary to give them the best care, but the size of some of these persons was a factor in how much they had to endure.
I wish that was the only issue that I felt compelled to share, but the next is the most compelling. I have had to do too many ultrasounds on females of all ages that had been raped by evil sick people. That has been the most pitiful experience for these disabled females I have known. Ashley will have a small body all of her life and this will give her caregivers the most gentle of ways to care for her. I have seen men in so large that it was difficult to care for them and I am sorry that this procedure isn't available to more families.
I have a disability that I have had to compensate for all of my life and when I was a child it almost ruined my Mother's back, I have been fortunate that I had my disability corrected for the most part and through surgeries and rehab. I live as normal a life as I know. I don't know life another way and I am thankful that I get up and walk everyday
Please accept my sincere respect for these things your family has done to give Ashley as normal a life as she will ever know. God Bless“
“It is so upsetting to hear the controversy about your beloved daughter. I know several people that have disabled children and know that it is not just difficult for the caregiver but also for the child to be moved and cared for as they grow to "normal" proportions. I am especially close to a family that recently experienced the death of the father. He was the major caregiver for his daughter who was a full grown adult. Even though she was on the small side, she was still more than most people could handle. As a result of her father's death, she had to be placed in a nursing home, a heartbreak for her mother. I think God approves of your decision to be able to hold, carry and caress your daughter. I applaud you for trying to prevent as much discomfort as possible for your child, for helping her to be able to experience a fuller life, and especially for making it possible for her to stay at home and be cared for by the people who love her most.
May God bless your family.”
“I just heard of Ashley on a news program this morning and just read the blog with all the information regarding the "Ashley Treatment" and the reasons you decided to care for your daughter in this manner. I just needed to add my support to the support of others in your decision to make Ashley's life as comfortable as possible. I was blessed with four healthy children who are all now grown but have had the pleasure to know many special children in my lifetime. Several I can think of would have been so much better off if this treatment had been available for them. I've seen families broken apart by the demands of caring for adult children who could not offer any help for themselves. I've watched families in the terrible process of having to put children in care facilities because home care became impossible. You are very blessed to have a loving supportive extended family as well as a strong nuclear family and Ashley is blessed to have parents like you. You have upheld Ashley's right to life in the best way possible for her. I am greatly touched by your devotion to giving your precious, beautiful daughter the best life she can have.”
“To the Parents of Pillow Angel, Ashley, I have just read the article about the Ashley Treatment in People magazine, and I wish to show my support of your very difficult decision as I have a first hand insight as to the dilemmas you would face in the very near future had you not chosen this procedure.
My mother-in-law lives in upstate New York and has custody of Vickie, a ward of the state, who is severely disabled with barely a brain stem. Vickie is now thirteen years old and is 5'8" weighing about 150 lbs. Vickie began menstruating at nine years old, and she must be stimulated to have bowel movements, etc. Eventhough the state provides many amenities to make the caregiving less taxing, it is extremely difficult for my mother-in-law to move her and the care she provides 24/7 is becoming more difficult for her because she is 65 and her health is failing. Don't get me wrong, she loves this child more than life itself and has raised Vickie from the time she was six months old. My point is that I wish this information had been available years ago...that there would have been someone before you to face this challenge and give others in your position this opportunity.
I applaud your decision and your diligence in knowing what it will take to care for your daughter in the years to come. You have been blessed with a sweet spirit who is guaranteed a spot in heaven. I truly believe that these special children are sent to those who are capable of loving and deciding what is best for them, and that is your right.
Shame on those who criticize you and feel they know what is ethical. These are people who will never know the challenges you face or walk in your shoes. They have no idea of the love you have for your daughter.
I have no doubt that Ashley knows how blessed she is with you as her parents.“
“My heart aches when I read your story and both the supportive and non-supportive comments from people.
Ashley is a lucky young lady. I know the heart wrenching times you must have gone through to make the very difficult decisions you have made, and I applaud you.
I, too, had a profoundly disabled daughter. By reading your story, I think she was more disabled than Ashley but also very, very beautiful. She passed away at six years old. Even then, she was difficult to manage physically. I feel blessed that I was able to care for her at home. I did get some professional help with RN nursing care, but it is a tough, tough road. I would selfishly love to have her here now, but I know that if she had grown much more, I probably wouldn't have been able to care for her here at home. For some reason, the last thing I ever wanted to do was to place her in a facility.
I do not condemn you for what you have done but instead praise you. You have not taken away Ashley's dignity but instead have insured for her your loving care at home and a dignified life with the people who love her.
Someday I would love to meet you and Ashley.
Bless you and your little Pillow Angel“
“Our hearts go out to you and your family. I am the father of a child (now 16) born with Spina Bifida. Whitley is paralized from the waist down. We were talking about your daughter and the treatment that you were giving Ashley. Unless you have carried, pushed or assisted any disabled person you have no right to judge your path. Whitley agrees with me that if she was much smaller the effort she would need to" get around "would be much easier. She weighs about 120 lbs and is 4'-11" tall. She is a handful to lift. God bless you and Ashley and keep up the good work for her, God is guiding you in a good direction.“
“I have read your account of Ashleys treatment with enormous emotion and intense admiration for you and your family. Ashley is a beautiful young girl. You are so lucky to have her. The pictures of her show the face of God! I commend you on your decision to have Ashley undergo this treatment. Many years ago I worked in a home for severly mentally handicapped children. Many of these children were fully grown yet bed ridden most of the time. They had the mentality of a baby. The ability to hold them and caress them lovingly or sing them lullabys while rocking them in a rocking chair on our laps was impossible for us caregivers due to their size. Yet they loved this sort of loving attention....after all they were babies! Having them bedridden with little physical loving contact from their caregivers further harshened their existence. I think the treatment that Ashley has received provides her with more opportunities for normality...an easy going stroll in her stroller, sitting on your laps in front of the TV ... the love that any baby ... and indeed human being needs. Continue to cherish your time with Ashley. Children like this were given to us as gifts from God. We need to be so grateful for such gifts. Ashley is a small piece of heaven on earth.
“I have read so many of your testamonies and e-mails from other families and wanted to add my two cents worth.
We, too, have a child (…, 5 1/2 yrs. old) who is severly disabled due to lack of oxygen/birth injury. He is tube fed, non-verbal, little to no voluntary movement, seizures, and so forth. Same as many families who have written in to you.
Since this story, and for me the past 24 hours in particular, I have tried to figure out where to go with this in our situation. I have had many thoughts and all seem to go to the direction of "Ashely's treatment" for ALL of the same reasons as you. In the end it can ONLY benefit the child and the added bonus is the family benefits in SO many ways. Mostly the family gets to enjoy having the family together. As my son is getting bigger (just this week, I threw my back out!), we are finding ourselves separating as a family. Sometimes we find one of us has to stay behind with [him] while the other takes our 8 year old, healthy, vibrant daughter to activities that she shouldn't be withheld from doing because of her brother's limitations.
I could go on, but you and so many other families on your blog have made all of these points over and over again. The only thing I would like to add, as I haven't seen this being reiterated as much as I'd like, is the size of the physical body corresponding with that of the age of the mental status. And as for socially accepting these children as they get older, I think is only POSITIVE. Right now, we get so many comments on how cute he is, the attention he draws from people in a social environment, that I don't see happening to older children or adults with severe disabilities, only them being shunned in the public eye. I have often worried about this and have tried to condition myself not to look ahead to those inevitable days. I know feel there is HOPE.
Thank you for being so courageous to try something new and sharing it with the rest of us. I feel Ashley has proven her "purpose" in life, which not many, typically-developed people can even say!
Love and prayers“
“I too am the mother of a profoundly retarded child.. Well she is 46 now and all the fear you have or had for your child I am living so I very much agree with you .. My little 5 pound daughter has grown into a over weight.. very big breasted woman that I can no longer lift. I had to give up lifting her 20 some reasons ago and only can get her home now if her adult brother is around in case I go down with her while I have her home for a week in .
She is mentally about 6 mos.. does not walk... after years of surgery and therapy .. doesn't want to walk.. seems to have no interest. She had speech therapy too. Her father has passed a few years ago .
She is like a baby.. has always been... I understand so much what you are going threw and I wish to tell you only someone like me can understand what you are truely going thru. I know you love her ,,,, I can tell my all your concerns.
I have to go see my daughter in a home where sometimes is less than I like. Short on help and or some of the help leaves alot to be desired! Some times when you ask them questions about your child they give you off the wall answers or don't know.
So you are doing the right thing.. the heck with what others think... My heart goes out to you both and to Ashley.“
“I am a mother of a 17 almost 18 year old daughter who got a bad DPT shot at 6 months and has never been normal since that moment in 1989. My daughter is now the most severe epileptic you will find. I signed a DNR 4 years ago. She has nursing care everyday when I can get it from 7a to 7p. Her father and I divorced because he wanted her to be put in a home and I said she has a home until I die and then her brother and sister have said they will make sure she is taken care of.
NOONE has the right to tell you what to do for your pillow angel. My daughter weighs 160 lbs and is 5' 4". She is very hard to handle. If we even suspect for a minute that she is due for a seizure we cannot leave our home or her side. It takes 2 sometimes 3 to take care of her during a seizure. There are days when I know it would be easier if she was smaller.
When her period started several years ago she could not handle it. She hid, was scared and made terrible messes. We had a wonderful pedi. and he put her on shots and she has not had one in over 4 years. I think I would lose my mind to have to handle that too.
I have cried tears for you today because I know how terrible people can be. Until they are in your shoes they will never know how lucky your daughter is and how blessed you are to be chosen as her parents. Bless you and continued strength in your special walk with your angel.”
“I have worked with severely disabled children in an institutional setting and I am sure you are receiving a lot of negative e-mails. If this gets read please know that I support your decision and know that whatever you can do for Ashley that will make her life more comfortable and that will enable her to be included in activities in any way is all good! I have dealt with 17 yr old girls that are in diapers and physically able to get around but with the mental capacity of an infant. Puberty and menstruation was a cruel twist of nature in a world that was already fraught with pain and confusion. Obviously we are not talking about a child with a degree of brain damage that could possibly be taught to dress and bath and communicate -- many people do not realize the degree of brain damage that you are dealing with. In short, please be encouraged by the thought that there are people like me that have some small idea of what you are dealing with and support your decision.”
“My oldest daughter and I saw your story on TV, it moved the both of us because we too are a family with a disabled daughter. I am so sorry for all the bad comments people have said, but I believe you did the best thing for Ashley.
My daughter's name is Ashlynn she is 20 months old and like Ashley, Ashlynn does not talk, walk or tell me where it hurts.(usually its a guessing game). Ashlynns future care is a daily descussion in our home. I stopped working and going to school and devoted my life to her. Ashlynn weighs 32 pounds and is 33 inches long, she is fed through a feeding tube and it is getting harder for me by the day to get her up and down our stairs, lift her, bathe her, get her inside and out of the car. I know exactly what you have gone through. NOBODY KNOWS EXCEPT THOSE WHO LIVE IT EVERYDAY.
I hope that her smiles continue to give you strength and fill your hearts with love. My prayers will be with you always.”
“I will keep this short...I know you're getting tons of email about this..but this is so amazing to me...I couldn't BELEIVE it when I saw it. It MADE ME CRY WITH GRATITUDE..
My son, Brenden, has just recently turned 7 years old. He has Nonketotic Hyperglycinemia. (NKH info website at http://www.nkh-network.org/) He is hyptonic and has a g-tube for feeding. He is my WONDERFUL PILLOW ANGEL (photo attached.) He is precious and special, but getting bigger all the time. I can barely lift him anymore.
I applaud your love for your special child...I know exactly how you feel and Brenden is also such an incredibly important family member. It makes me cry to think that someday I may not be able to take care of him. The Ashley Treatment has given me hope that my son may be able to stay with me for as long as I live. THANK YOU.
When you have a moment, could you please email me links to any info you can so I can bring up this type of treatment with Brenden's doctors??? If you have email links to the Doctors who assisted you in your decisions and treatments, can you give them out??
I appreciate ANY help you can give. As soon as possible, but I understand how busy you are.”
“I am so very moved by your story. I have a 4 year old pillow angel; we are also in the Seattle area. We have no idea why Wyatt is this way and thought we were alone dealing with this mysterious condition. My husband and I are contemplating having other children (Wyatt is our first) but I am terrified. At the same time I am so sad that my son can’t hug me or tell me he loves me. I want the chance to have a typical child, but at the same time, I am scared that I won’t have enough energy to care for Wyatt or that I might be even sadder about Wyatt’s condition if I have another child.
Wyatt is “perfectly healthy” in all other ways and I have often dreamed of keeping him little so I could hold him and cuddle with him, which seems to be his favorite thing.
I am crying as I write this because I saw on your website that you have 2 typical children and you look like a happy family. That there might be hope for MY family? That there is someone else who understands what we are going through? I am overwhelmed.
I wish you the very best. I know you have thousands of emails and I may not ever get a reply, but I’d love to hear from you, borrow from your strength, help you any way I can.”
“Ashley is a beautiful little girl and I wanted to let you know that my husband Ron and I fully support what you are doing. We had our own pillow angel for nearly 12 years. Our sons have grown into gentle, compassionate men by having their sister in their lives. Like you, we tried to provide the best quality of life possible for her. As she grew physically bigger, it was a greater challenge to provide this quality. Although we had a lift van and wheelchair, getting her out in public was harder (just think pushing an adult sized heavy wheelchair through a snowy parking lot or carrying her across a sandy beach to a lounge chair at the waters edge). Also, picking her up and dancing around the room with her throughout the day went from every 30 minutes or so to once or twice a day just due to her size. As you say, concern about developing pressure sores became more of a reality although she never had one except when she was hospitalized. We ended up having some great caregiver help which was appreciated for dressing and bathing but they still imposed on our family privacy. There was also a difference in the comfort level of our home- some caregivers stole, even from our sons, and thus we always had to be diligent about where we put down our wallets. When Rachel died at 11 years, 10 months, her neurologist said it was likely due to several factors, probably the hormonal changes impacting her brain as she entered adolescence.
Please continue to stand unwavering, knowing that there are many parents behind you. We never had heard of, nor considered the option for our daughter but we would be doing it right beside you now if we could.”
“Our family was also blessed with a 'Pillow Angel' child, Wayne. The stories between Ashley and Wayne are very similar with the exception that you had the opportunity to take medical action that we fully support. I would like to share a brief story below with you as when I think of Wayne and Ashley, I come to the same conclusion, they continue to thrive because of love of their parents and extended family.
Wayne was my cousin, he was born in the late 1930's. My aunt was very small and there were complications in the delivery which created Wayne to have further disabilities than Ashley. With that being said, my uncle could not handle it (I never met him) and my aunt, grandparents, and my parents supported the care of Wayne. In the 1950's, my aunt met and married a wonderful man, Kenny; 'he' was my uncle. Kenny adopted Wayne and gave similar love and attention to Wayne. Bottom line, Wayne lived to be 61 years old! It is a true story of unconditional love!
During the last 20 years, or so, of Wayne's life, his body and weight continued to grow. Exactly what you concerns were with Ashley did occur. Although my aunt and uncle took care of Wayne until his death, ventures out of his bed were extremely limited (hospital visits) and his care became more difficult due to his size and weight.
Although Wayne could not talk, there were ways that he communicated as Ashley appears to do. I know, and firmly believe, Wayne knew he was loved dearly. He was my aunt's 'precious child'. In so many ways, the entire experience has made me a better, and kinder, person. My family, and I, fully support your decisions.
Our love and prayers are with you.”
“I feel very strongly that you are doing the right thing – not just morally, but as care providers.
My sister died last year at the age of 38. She was mentally retarded all her life. Julie lived a rich life because she had a loving family - the same family that had to watch over her as she had the intelligence level of a four year old. It is almost impossible to explain to other families what this kind of care means if one has never experienced it.
I read your explanation very carefully and can only feel a strong sense of connection. Julie was also very small – all her life she was tiny. However, she did mature and put on weight. As my mother grew older, Julie’s maturation and weight worried her. Julie talked and acted like a four year old, but she also appeared to be a very friendly tiny girl with large breast and hormones that confused her. Julie had a number of care providers, but all worried that she could become victim of someone’s abnormal desires and her inability to understand sexually.
As care providers, my heart and mind goes out to you. I also thank you for attracting attention for those families who have it so hard when it comes to loving their children – no matter what.”
“My best wishes to the sensitive, brave and intelligent parents of Ashley to have gone beyond the norm to provide the best care they themselves can provide to their pillow angel! Kudos! Great!!!
I can totally relate to your situation as I have 2 little Pillow Angels of my own,12 years old. I have expressed and discussed the possibility of similar treatments for my daughter before but was given the legal and ethical excuse saying that it was not optional. Your experience has given me the strength to revisit the situation with the Doctors. Thanks a lot and you have infinitely given hope to many parents and tons of comfort to so many pillow angels.
I am so sorry to see that people have now become so thoughtless and illogical that they see bad intention in everything...if these people were really concerned and had done something about it,we would not have the horror stories of abuse and total neglect of human beings who cannot take care of themselves. I do not want my children to become a statistic and will do everything to keep them with me till God wants to take them in his arms from mine. I am very fortunate to have tremendous support from my family and very caring additional support so that I can continue caring for both my Twin Pillow Angels but the issues of weight and height do impede the quality of care we can provide the children even with best intentions.
As you mentioned the decision for the procedures was easy and I can see how I would too do it in a matter of seconds because I can see the pain of the child in her eyes even though she cannot verbalize it or has not reached the point where she will start crying. ( my children have a high threshold of pain recognition so unless it reaches beyond their tolerence level you cannot get a reaction!) I know what happiness they get when I can hold them in my arms and you should just ignore all these "ethicists in words only"....I have read this whole 'Man should not play God' when In-Vitro Fertilization was introduced...today it is a common procedure nobody even bothers to think twice about! I have not seen such a response even against Dangerous and totally Frivolous Cosmetic Surgeries - they are totally legal and ethical - Don't We play God in those cases? What ethical or moral standpoint can these so called God Fearing souls give to them? Haven't we got Breast implants reapproved by FDA again? It is so disgusting to see people being Hypocrites!
All in all I empathize with you as these hurting comments will affect you and you family..I will pray everyday for your healing and ask God to give everyone the strength he has bestowed on you to do GOOD! You are very courageous to have opened the doors, knowing what was coming! Keep the Supporting and Soothing words in your heart and Ashley's smiles are all worth it!
Love from Mother of Two Pillow Angels “
“My aunt and uncle raised and cared for a severely retarded woman, my cousin, for decades until their death. It was difficult for them to manage my cousin, who was able only to walk a few short steps at a time and was a full grown and somewhat overweight woman. They would not put her in a nursing home or other care facility because that was not their way. She is in a care facility now, as her parents are dead. My point is that caring for someone at home is difficult enough but it gets tougher as one gets older. So, if these parents want to make it easier for them and their daughter, bless them! They sound like loving parents and deserve all the support they can get.”
“I just read the article in People magazine - and I felt very compelled to contact you and wish you well. I have worked with developmentally infants, children and adults for over 25 years. These beautiful individuals were placed in long term care, partially because of the times (just put him in a home, you can have more healthy children), partially due to families not able to care for their loved one, and finally, because the "child" grew too big for their now older parents to care for. There is just not enough financial, community, governmental support to allow all of these individuals to stay home.
As I said, I have been involved with this population for a quarter of a century. The population I served was severe and profound, many like "Ashley". As I watched these beautiful babies grow into children, I got to know them as individuals with different personalities. As I watched them grow from children to adolescents and adults, I wondered "of all of the physical and mental attributes these individual lack, why God, was their reproductive system left intact?"
The females, once they reach puberty have to suffer not only the monthly discomfort, including PMS. If they reside in a long term care facility in Illinois, the State pushes for them all to get gynecological exams and mammograms, even though statistically, unless there is a familial history of breast or productive organ cancer, these individuals are at extremely low risk for cancer. Also, they receive regular breast exams by a physician at least once a year.
At best these tests are uncomfortable, and those of us not developmentally disabled can understand the procedure, why it is done, and what to expect. The DD woman has to be held down, physically restrained, to complete the procedure. No one could tell them why this is being done to their body...or prepare them emotionally for what is about to take place. Sometimes, the individually is strong enough, scared enough, or "non-compliant" enough to require a sedative for these procedures to be done.
Besides the monthly discomfort, there is the subject of feminine hygiene. Many of these women are incontinent and rely on others for their hygiene needs.
I come from a city that recently reported a pregnancy at a local long term care facility for children and adults. That pregnancy was a result of a sexual assault by an employee. The pregnancy wasn't recognized until she was six months along. She couldn't tell anyone, no one noticed and she eventually finished the pregnancy, caesarian delivery and due to her level of disability, has no idea she has a daughter.
I have also seen many, many devoted parents, place their previously cared for at home children, before they "grow to big, and heavy" for their parents to care for at home. Lets face it, by the time our children are adults, we as parents are no longer young. We may have health problems, etc. that interfere with our ability to pick up, roll, diaper, dress, and bathe a 100 or 150 pound individual.
Although your decision is controversial, and not for every DD person, I applaud your stand to give "Ashley" the quality of life she deserves.
My very best wishes to you and your family”