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.
Admiringly!“
“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” |