There is absolutely NO reason for these parents to shoulder this kind of guilt. It's not their fault at all. I wish they could've sued the medical provider who put that child on an adult dose of Theophylline. An entire family's life destroyed and nobody is held accountable.
There's probably no proof, and meds are clearly labeled for interactions, possible side effects, etc. Read them folks. You Americans are always so ready to sue everyone in sight, rather than taking a second to remember that doctors hard working are humans.
In profoundly hard of hearing today wearing two hearing aids to be able to be part of the social world. Why was I born this way ? NO When I was three I developed an ear infection which turned into an abcess. My family doctor was on holiday and his practice was being covered by a document prescribed penicillin which my notes clearly stated was not to be prescribed for me but worse than that he prescribed an adult dose. The moment our doctor who was a family member returned he checked my notes and came knocking on our door at 11pm to check me out. I spent the next three weeks in hospital after being taken there directly by him. By time I was 6 I had hearing loss and attended out patients from then to now. I had damaged eardrum due to the strength of the eardrop ( also adult dose) that actually burned it. As I grew older I had several operations including plastirectomy I have worn hearing aids for over 25years now All because of a doctor's mistake.
Correct. Most people are NOT equipped to be full-time caregivers for one reason or another, and you don't know it until you're in that situation. I help care for my mother, and I'm only in my early 30s. She can do primary functions on her own (clean herself, use the bathroom, make basic meals etc.). I do all of the physical work - general tasks that she cannot do because she gets tired quickly; help her with her dialysis treatments every evening. Before this, throughout my late-teens and into my late 20s, I cared for my elderly father who was completely disabled from a stroke when I was 19; he died when I was 27. Now, in my early 30s, it's my mother. I know I could NOT mentally and emotionally deal with caring full-time for my mother if she were to become even more dependent than she is now. I've already given more than I'm capable. To be my mom's full-time caregiver would mean that all of my young adulthood was spent caring for my parents and not having my own life. I cannot do it.
My cousin had severe brain damage as a result from a birth injury.. we all love him so much. He never spoke words. His parents lovingly cared for him at home until his teens. At that time my Aunts age and physical ability and his size and needs just became such that they had to put him in a facility. They agonized over this decision. He lived there until age 28, dying of pneumonia. I miss him very much. I miss you Laban I love you
It's really a disgrace that her parents were just sent home with no social services assigned to help them. In a way, it's harder to deal with than the death of a child.
That was decades ago in the US. Medical knowledge has improved, is my impression. Although, today, one political party in the US still laughs it off. So, my hopes are diminished.
@@chuckthebrindlepittie6820in many ways it's not better. Many horrible things happen today as well. The things we are ignorantly doing today? Well, we're IGNORANT of them so we don't know they're wrong yet.
Totally agree. The things we are spending money on instead of on Elizabeth is to all of our shame. Lots of people screaming at each other about meaningless things when the answer is right in front of us
I was sent home with my son after his birth in 1987. He has a rare genetic disorder. I was given no instructions, nor guidance. The only thing I was told was that he wouldn’t live long…. He’s in his 30s now. 🤷
Oh no. Mom's mother telling her this was punishment for doing something wrong is one of the cruelest things I ever heard. God bless this precious family.
@@lovesallanimals9948 People like you blame a God you don't even believe in. There's all kinds of trials and tribulations in this life. You want paradise read His Book.
I am schizophrenic. This is often an extremely severe mental illness. I am an individual that probably can't live independently. I understand why my family has put me in a nursing home. I still love them. Amen.
These parents have succeeded as amazing parents. For Elizabeth and the other children. Please pass onto them @SBSK. Absolutely brilliant parents. Noone could have done any better
I couldn’t agree more. It sounds like their daughter is getting exceptional care. All children deserve care, and the other kids needed mom, too. I 100 percent believe they did the right thing in this case. Special people need special care, and sometimes professional care is the best. I wish that every person in her situation had a family like this behind them. Elizabeth is a lucky young woman, despite her disability. She is so loved and it shows. Her connection with her sister is so very special.
@@nerysghemor5781 That is 100% spot on. She is exceptionally strong, even if she doesn't see it herself. They all are and you can really tell how much of a loving family they really are.
I was judgmental about placing a child in a nursing home before I watched this video. I was a changed person after I finished watching. Thank you for opening my eyes and deepening my empathy. These parents tried and are trying their best. Big respect.
The only people who fully know how emotionally and physically draining it is to have a special needs loved one who needs 24-hour care are the caregivers and family members. It’s one of the most difficult and exhausting things someone could ever do, especially when you have a job, other children, a spouse, etc. You have a constant stream of nurses and therapists coming into your home. Sometimes, those nurses call in sick and you suddenly have to call in to your job because you don’t just have replacements that know your loved one’s routine/ schedule, medications, activities, etc. If a nurse quits, you have to train a whole new one and build trust with a brand new individual in your home. Those nurses generally have to be found and trained by you, as the parent/caregiver, too. You’re basically taking on a role as a charge nurse when you have a loved one that requires 24-hour care, so it’s almost like a second job. I’m glad you were able to get a glimpse and have your mind changed. These people need all the support and understanding they can get. 💜
@@sarahp8937Whatever they did to keep working with her and make her feel like smiling, even after going through such tough times together…I am so glad that they got to that place. ❤
@@missmew5240 I'm guessing that a facility was bought out by a new corporation or whatever and insurance changed. Or she could've been in a facility that only cared for children up to 12 years old. Then one that was up to another age. Sometimes a new corporation is in charge and staff changes and it's not an improvement, shall we say. There are several reasons like this that might've caused them to want to move her.Sometimes you find a fabulous facility but there's a long waiting list. So you place your loved one in the next best and fabulous facility until you are accepted.
@@missmew5240Things can change with time. Sometimes it’s because a facility closes its doors. Sometimes beloved staff leaves and is replaced with people who are not as competent. Sometimes care needs change, and you need to find somewhere else more qualified. Given how active her parents are in her life, I’m sure they have kept a very close eye on her and the care she receives. I think it’s wonderful how the mother is always committed to ensuring her daughter has the best care possible at all times, and will move wherever is necessary in order to do so.
sometimes its best to do. when my friend's daughter was born she was born with severe retardation and her parents had no choice. it sounds mean but when you are in the care of trained professionals you are more at ease with your loved one
@@KrystalHarwood-z1b taking care of a disabled person is incredibly hard. People who shame those who let professionals take care of them have no idea what it's like
@@KrystalHarwood-z1b my stepdad gave custody of his severely autistic son to the state, which was not uncommon at the time. He visited his son often, and took him places, but caring for an adult child with such severe needs was very difficult. Some people may feel it's unkind or unloving, but that's far from the truth. I have nothing but compassion for Elizabeth's parents.
People who say “I would never put my loved one in a nursing home “ don’t know what they are talking about. Unless you are in that situation you can’t say anything about it.
Well said! I’ve never been in this situation but it’s VERY easy for me to see how it’d be massively overwhelming-there’s no way I could personally handle it. What I can’t believe is how many other people are incapable of empathy and are so holier-than-thou. The majority of people really are trash and it’s ironic because they’re usually the ones acting morally superior.
Well I do cast a little bit of judgment but hear me out: Especially with non verbal folks, these care facilities are abusive. There was a case near me recently where a non verbal woman was you know what and got pregnant at a care facility. Hopefully they visit frequently and have found an extremely rare nice facility (though I’m convinced that those don’t exist sadly).
I've worked in a couple of nursing homes and you have to be so selective of the home you choose. I never witnessed any violence or aggression toward the residents but I did notice some negligent behavior. Elderly people usually don't have much of a drive to eat or drink, so an aide would ask once and if refused wouldn't offer water until hours later. They under-offered water to lower the amount of diaper changes. Keep in mind many of these places are understaffed and underpaid.
Came in to say the same thing. I work in healthcare and so often I see caregivers approaching or fully in burnout, where their own health is taking a back seat, and I’ve seen caregivers pass away before the care recipient because of it. Elizabeth’s dad hit the nail exactly on the head. They are 2 people providing 24 hour full care, likely total assist for many needs. In a nursing facility there are 3+ shifts with a full staff. I wish more people would acknowledge the benefit and quality of life that can be achieved for the family and the care recipient by embracing institutionalization. They can focus on being her PARENTS instead of having to focus on being CAREGIVERS.
@@rtracy1216true but there's also the fact that a lot of people get slapped around, sexually/financially abused, and also stolen from when they're in those facilities!🤮
That’s why it’s so important for families to do thorough research into each facility beforehand- it sounds like these parents have done that, and found great places for their child to thrive and have the best care possible. The ultimate act of love, in my opinion.
@@guardianangel9517 there’s also the fact that family members and loved ones are more guilty of that behavior than professional facilities. Why even bring this point to the conversation?
For those who are wondering, the medication that lead to Elizabeth's seizures (theophylline) is rarely used these days. It's still an important medication for those who need it, but thankfully we have many other options to treat asthma these days that are safer.
I hope it was rarely used in those days too! You have to have really severe asthma to need theophylline, and never at 18m in the U.K. you need to monitor levels etc.
I am a full time caregiver for folks with a wide range of developmental, physical, and/or mental disabilities. This video hit my heart in a special place. I’ve followed SBSK for several years now…but this one really hit home to what many of my clients and their families go through. Shout out to Elizabeth, her sister, and parents for being such an incredibly supportive family unit regardless of divorce/life changes/distance/etc.
I am glad Elizabeth was included in the interview. I feel like she was picking up on a lot of it, and she really appreciated this handsome guy, with good energy coming and talking to her (not just about her).
J ai beaucoup d empathie pour ces parents ❤étant moi même maman d un grand garçon de 43 ans polyhandicapé (cécité, autisme, psychotique ,incontinent) la vie est bousillée à jamais, et la médecine, en termes d avancée, est nulle !Ces choses ne devraient jamais exister, la vie est injuste 😢🇧🇪
@@patounyssen1631 PLEASE talk to a solid pastor of a bible based church, Jesus really loves you and He is near you. I lived in Europe if that's where you are and it's spiritually enemic. Read His Word. You need to be lifted up.
To Elizabeths mom, you are NOT WEAK. You are a mom that has all of her energy stolen. Your daughter is happy and has assistance 24/7. Sending you love and hugs.
I have a 22 year old non verbal autistic child with intellectual disability, challenging behaviour and epilepsy.Everything in my house is broken from him smashing it up.Hes physically perfect,very handsome,it breaks my heart when i think of the life he should of had.Hes with me full time.Ive been in psychiatric care 5 times.Its a hard old life.
There’s nothing that I could say to change your current circumstance yet I’d like you to know that the moment I read your comment I felt as if I understood in some way unknown to me how lonely you may feel sometimes. We are not truly alone even in our loneliness there is often someone who is willing to share a smile, a genuine kind word, a sincere hug, or just a gentle nod to acknowledge that they we are seen. You are not alone…
My 39 year old son is high func autistic but with heart of a saint. There is no use trying to make him see life as it is. I said to him when mom goes to heaven you'd give this house to a stranger wouldn't you? he said '''Yes because we're supposed to be nice to people'''. He also is handsome and tall, back in H S some girls wouldn't leave him alone. However he's very much into electricity and things of that nature. He's also a solid Christian. He got saved the day Franklyn Graham came to preach at church.
Oh my goodness, the Love and support I am feeling from everyone just floods my heart! Thank you for not judging me and giving your support and listening to Elizabeth's story. Her sister, Mary Kathryn, is responsible for making this happen. She contacted Chris and wrote a beautiful essay, asking Chris to give Elizabeth a chance to tell her story. And Chris, you did a wonderful job. You made us feel so comfortable and your questions were so poignant and you are doing such amazing work. I applaud your efforts to bring light and love to the disabled!
Well done Mary to yourself, your ex husband and children for telling Elisabeth’s story. Being vulnerable is a brave choice and only you and your family know the challenges that life has presented you with. Sometimes there is no reason or rhyme to life and we cope and survive in only the ways we know how to. I would like to say …I hope you have had a chance to unpack and unravel the experiences with a trusted person, either professional or friend wise, that allows you some solace and peace of mind. Allow the kindness you extended to your daughter and family members to be gifted back. Some times the weight of certain outcomes challenges even the most strongest and wisest… it’s a reflection of the seriousness of the task, not the judgement call on someone’s character . The discussion around stigma is most important, as often silence allows it to remain , as is. Wising you and your family moments of joy.
Mary you're so honest and sweet and you've been through so much. Its not you're fault ,none of you deserved this. I'm sending you so much love. My names Mary too ❤
You are a wonderful mom and you’ve done the very best for all of your children. This was absolutely not your fault. I can’t even imagine the pain you’ve gone through. Yet you’re still showing up for your daughter in every way. That is strength. ❤
Thank you for sharing your and Elizabeth's story. You are incredibly strong and did the absolute best you could raising all of your children. I am sorry you have had to bear so much guilt and grief. I see nothing but love, devotion and an incredibly resilient and loving mother.
@@leahtv7778 no, she's not 'normal' mentally, and she's not just paralysed. she's intellectually disabled. she never went to school. If you're talking about her intelligence, at no point did they say her IQ was 'normal'...
@@leahtv7778 This isn't true, I'm unsure where you got that from. Her entire brain was destroyed and she only has a small part of her cerebral cortex left functioning - that is not normal mentally. She likely has the mental capabilities of a small child.
I worked with developmentally disabled persons with medically complex diseases, for 16 years in a fantastic facility/school in NJ. The patients were very well cared for and happy. This mother should not feel guilty. Her daughter is getting great care.
Elizabeth's sister seems like such a genuine, thoughtful and resilient person. Elizabeth is lucky to have her, and she clearly is lucky to have Elizabeth.
It looked clear to me that Elizabeth's sister is one of her favorite people! She had the BIGGEST smile for her! It looks like she loves her family being around her.
@@marycox7933you must be so proud. I have a son like Elizabeth and 3 other children who I am going to show this video to someday when they are mature enough and the time is right. Mary Katherine’s testimony really choked me up in all of the best of ways. What a beautiful person she is and there’s no doubt in the world you and your former husband had a huge part in her character development, as well as your beautiful Elizabeth. Your story is beyond inspirational and y’all are heroes to me!!
It’s sad that the parents feel guilt about having her in the care institution due to stigma even though they visit every weekend and they didn’t want their other children to feel neglected
You didn´t institutionalize her and leave. Whoever thinks that severly lacks intelligence. What you did and continue to do is acquire the care she needs, and you never left her. Your incredible strong love and committment to Elizabeth is phenomenal.
Yes, sometimes you need to ensure the person you love has around the clock access to professional caregivers. As a disabled person, me and my family have found it extremely difficult and EXPENSIVE to find good help. And my needs aren't nearly as complex as Elizabeth's. I'm sure she's receiving the help she needs, and her family continues to show her the love and care that any human being deserves. ❤
@@kristymay9435The family says they spent every weekend growing up with her. The mother still spends every weekend with her. The father drives 12 hours every other weekend. These people need to work, they need to make money and rest. Without that, they can’t afford her medical care. It sounds like these people spend every day living for their daughter.
I hope this beautiful, loving mom is getting consistent, frequent, quality mental health care for herself. She clearly has so much deep pain, trauma from seeing her child suffer a traumatic brain injury, intense and layered guilt, religious trauma from her childhood, relationship issues with her own mother, and whatever else she struggles with that we know nothing about. This sweet woman deserves to have some of this heavy, heavy weight that she's been carrying around for the last 40 years lifted, and the only way to do that is to get consistent, ongoing professional help. It's an act of self love and she deserves it.
I used to be a carer for a wonderful, beautiful woman in her late 40s who has a very similar story to Elizabeth. She was born healthy, then when she was 18 months old she had a massive seizure which caused a severe brain injury. She is now non verbal, tube fed and unable to walk without 2 people helping her balance. All that out of the way, she is now 52 and incredibly happy and healthy despite her challenges. She always has a smile and brings joy to everyone around her, and she can communicate more with one look than most people can with a whole book!
People don’t understand how much effort it is to take care of a medically complex person. I’m not even as severely disabled as this girl but I know my family struggles to care for me and me myself. I completely understand why a family might need a higher level of care like a nursing home.
There really is a lot of unfair judgement about it. Just lifting someone, frequently, takes a lot of physical endurance that many people don't have. Add in age causing joint and back issues and it reaches a point that parents just can't do it themselves anymore. Institutional care can be excellent or it can be terrible depending on how a particular place is operated, but it's not always an act of neglect. My own grandmother, 99, is looked after my father who is himself in his 70s. He and his sister are still hemming and hawing over it, but her mobility and cognitive decline worsen steadily and I keep telling him he needs to research a placement now and not wait til it's too late to be choosy anymore. It's better than letting her needs go neglected because his bad back is getting in the way.
I do as well. I’m moderately to severely physically disabled (my abilities depend upon my pain levels as well as how much I can move) and I live with my mom. At 67, turning 68 in a few weeks, I don’t know how much longer she’ll going to be able to do it. She’s still working full time and caring for me full time. If she says she can’t do it anymore and I have to go into a care facility, I understand. I’d rather have her do that than run herself ragged and possibly put her own health at risk.
I'm a devout Christian, and a severely physically disabled person for most of my life. Not only is God not punishing her, God is absolutely not punishing Elizabeth! This is Elizabeth's life, and she didn't incur God's wrath as an 18 month old baby. Her mother learned some bad theology somewhere. This was not your fault, mama. You may know it at some level, but you're punishing yourself for Elizabeth's sake. You don't need to hold onto the shame and guilt anymore. You've done so well for your daughter. The Bible says to run the race, fight the good fight, and keep your faith. You have done well serving God in this life ❤ What more honorable, dignified way to live out a life than to graciously serve your disabled daughter and give her a safe life, cared for, ensured she's loved. God bless you and your incredible family ❤
U can't hear I take it ..at @726 she says "it's NOT your fault" turn on closed caption ...and no point does the mom say anything u heard . After u listen kindly F off!!!
I really feel for that mother for ending up in a psychiatric hospital twice over this stress. I'm very sorry for her, but at least she had resources to control her anxiety. That's something to always be thankful for.
Dear Elizabeth's Mother. I am not religious in the same way you are... And yet, when I look at my kids (all 4 are special needs to various degree), I like to tell myself that I am their mother beause I am just an awesome parent who is cabable of loving unconditionally, because with me they have the most fulfilling life possible. What I am trying to say is that, perhaps, you had Elizabeth because the Universe (or whatever diety you believe in) thought that she deserved the best mom ever and that best mom was you. It may not be my place to say, but you. are. a good. mother. Don't allow anyone to persuade you otherwise. It. is. not. your. fault.
I don't believe she thinks it's her fault because it is the doctors fault. I believe it was the grief if losing the daughter she once has and should have had that brought her to her knees and to the psychiatric hospital twice. The guilt was from allowing that doctor to perscribe her that and giving it to her and now knowing better. But she couldn't have known better. She trusted the doctor, like most people used to. These days, doctors are not as trusted and it's why we go for 2nd, 3rd, 4rth opinions.
@@TheKatarinaGiselle I think she means Elizabeth's mother shouldn't believe what her own mother told her, that God is punishing her for something bad that she did. She said her mother told her when bad things happen to you, it's God punishing you. Smfh...
It was abusive of her mother to say that god punished her. So so abusive and traumatic. She is dealing with some generational trauma alongside the grief she has for what her daughter could have had. So complex but I think your message is beautiful.. she was chosen to be the best mom. I love that outlook so much.
bless this mom for opening up about her own psychiatric struggles, it’s not often talked about on the SBSK channel how much of a toll caretaking may take on someone!! this family is incredible
Shame on the Grandma telling her daughter that God is punishing her no wonder poor lady ended up In a physiatrist ward two times. Sounds like she didn’t have the support she needed most! Like the love and support she gives her own daughter❤ I’m Christian and my belief is God is a loving God not a vengeful God!!! Please forgive yourself! You did nothing wrong! P heal Jesus loves you for being a wonderful kind and caring woman!!
some people have that belief because then they can tell themselves that because they are "good" then nothing bad can happen to them like those "bad" people. But it's contradictory to the gospel entirely, Jesus directly refuted such a statement about a blind person before healing him in the bible. People like that haven't even read the scriptures they claim belief in.
I wonder if they have been able to put their trust in Jesus. Such an awful comment could def turn people from God. The amount of peace they could have. Their guilt gone and knowing they will have eternity in heaven together where Elisabeth is whole. I pray that for them
Her mother describing a knife going through her heart each time she sees her child in her injured state, is absolutely heart wrenching. These parents have had such a heavy cross to bear.
My son Brandon had a vehicle accident in 2013, he was 16 and had a brain injury. He couldn’t communicate at all really. He lived 3 years, most of the time in a pediatric nursing facility 2 1/2 hours from home. My brother bought a beautiful 5th wheel and put it at a park 1 mile from the facility. That enabled us to have a family member with him almost all of the time. We had a camera in his room connected to an app on my phone so I could see him anywhere I was at any time. We bought a van so we could take him to town, the lake, etc. I know the helpless feeling and the stigma of having your child in a facility. As they get bigger, it’s impossible to lift and move them to bath them, give them the. Are they deserve and work to survive, the list goes on!! We did bring him home before he passed and I am so thankful for that time. They have done AMAZING with Elizabeth for 37 years!!!!!! They can now put cameras in their rooms and they would feel so much more connected to her!! God bless this family! They will be with her restored one sweet day…
Elizabeth’s smile for her sister is next level awareness and love. Mumma, you are NOT weak, you’re realistic of her care needs and how to give her the best care.
My daughter was on cissapride as an infant for GERD In the early 90s. Gerd wasn't well studied then like now. I questioned the dosage with the major at walter reed, he insisted it was correct. I discovered she was given 10x the adult dosage, she was 3. I never gave her the dose prescribed, it seemed wrong. She told me her heart kept stopping. Her doctor was horrified and sent us to the ER for an EKG. The major got into trouble (military) and the medication was removed from shelves. My daughter is 31 now. We were lucky that she's ok. Prayers for this family.
Yes, Elizabeth's dad is correct - two people cannot handle the level of care the she needs. I know this just from a taste of it when my dad was ill. Even with my mom and all four of us siblings doing our best there were simply things we couldn't do, situations we were not equipped to handle whether professionally or physically. I'm so sorry her parents feel guilty - to me they are an inspiring example of a devoted and loving family. It's a privilege to learn about their experience. I'm grateful to them for being willing to share - and thank you Chris for providing this considerate platform!
I appreciate the fact you ask real legit hard hitting questions- you dont skirt the issues. These families get to really talk and open up and I think that could be insanely healing...they get to be truly heard.
I would absolutely put a child I loved who needed intensive care in the hands of people who could give it to her better than I. My exhaustion and lack of ability to work and sustain myself socially would not benefit any child. Much love to this whole family. I wish I had this close of a relationship with one of my sisters. ❤
I work at an intensive care nursing home for medically complex, fragile kids/young adults, and have seen many parents over the years. They run the gamut of involvement, but NONE of them can be judged by anyone not in their shoes. I'd give a lot to be able to ease this mom's pain.
I worked two summers in an ICF level facility. There was a teen girl that had developed meningitis at age 7-8 and was severely disabled as a result. Her dad was a widow and he came every couple of days to sit and talk with her. There was a tape of the girl reading before she became ill. Definitely made me sad to think of the lifestyle she had lost. Her dad was great. He’d sit with her in a rocking chair and talk to her for over an hour every time he visited.
The sister saying she talks to her sister on walks when they are hours away from each other is how I was with my best friend who passed away almost a year ago. Absolutely broke my heart but made me feel so unbelievably happy for them and their beautiful bond
I agree with what most everyone else here has already said; there's nothing to feel guilty about. Life threw an unimaginable challenge to your family, and you gave Elizabeth the best care possible. There is no shame in that. Everyone here in the SBSK comments wish Elizabeth and her family all the best in life!
These loving parents have never gotten over what happened to elizabeth😢…I think they made the best decision for them and Elizabeth….no one can judge other peoples decisions….i want mom to know this wasn’t ever her fault and I’m sorry her mom told her that…this family could benefit from some therapy…they need some healing….love to this family ❤️
These parents have absolutely nothing to feel guilty about! My brother used to manage a group home for developmentally disabled adults. I would visit often. The patients and staff were all like one big happy family. The staff had such affection for the patients, and the patients got such great care, better than they would've gotten at home with one or two exhausted, stressed parents. What a great family. I love the connection the sisters have -- soul mates. 💜
Heartbreaking how guilty Elizabeth’s parents feel. Not their fault in the slightest! Not to mention how the hospital left them without answers or support. It’s clear they made the best choice for Elizabeth, and love her very much.
Oh my heart broke a little when Mom said she is just weak. I don't see you as weak, you went threw so much hardship, pain and grief and managed to keep your daughters and yourself alive! You raised two wonderful women. If that is not strength, I don't know what is. And even if you wish you were even stronger - you are human and not made to be perfect.
As her personal friend I can tell you she's anything but weak! I tell her all the time she's one of the strongest, most compassionate, intelligent, beautiful and amazing people I know! And she's always concerned more about you than she is about herself. Her son is a very successful physician and her daughter is very successful also! Plus you can see what a compassionate heart her daughter Mary Katherine has. She did an incredible job under the most trying, difficult circumstances anyone can imagine... with grief that continues... and how can it not?
As her friend I can tell you she's a wonderful incredible mother... she's by that bedside every other weekend and Elizabeth's dad goes on the weekends that she isn't there.
My daughter died at birth, so a completely different situation, and yet so much of what mum and especially Dad said resonated with how myself and my partner feel. Sending Elizabeth and her family so much love and support xxxxxx
You had no previous warning, such as an ultrasound, during pregnancy, about the potential risks to your offspring, or the bleak odds/likelihood of having an unhealthy, disabled baby. So, never doubt yourself. I am very sorry.
So, So sorry! I know ,I don’t know you , but it’s got to be the most heartbreaking scenario ever. I hope you have a gentle journey on getting through the grieving process❤
Im sorry for your loss. I just had a baby and I can’t even imagine it but as I read your message and listen to this video, I slightly have an idea of the kind of pain you guys are feeling and my heart aches. I cried for you both. Just know there is someone out there in this crazy world thinking of you. Sending you all hugs! ❤️
It is impossible to imagine what this beautiful family has gone through during the last 37 years. What a candid, heartbreaking conversation. Elizabeth is a remarkable woman. Wow, what else can I say?
Mama, from every other mama out here, thank you for letting us share in some of your pain. I can only hope that you feel us out here, offering you the grace you can’t quite give to yourself yet. ❤
Her parents and sister are so amazing with her. I know how they feel. I had a daughter with a disability as an infant (spinal muscular atrophy). She was born in 1985. The hospital sent her home and taught me how to do NG tube feedings and that was about it. No further suggestions or anything from hospital staff. She lived for 7 months. To this day, I feel guilt and I miss her immensely. I did all I could do to keep her comfortable, loved and happy.
To the mom, you are in no way weak. You and your family have had a lot to deal with, some people would have totally given up. Even would have given up the child if something like this happened. I really hope this nice family doesn't beat themselves up too much. They seem very loving, caring, and strong to me 😊🫶
These parents deserve happiness. Its obvious they love Elizabeth. It shows. Based on this interview they've been fantastic and made the right decisions no matter how tough they were
I love how open they are that it was and is tragic for them. A lot of people always say they wouldn’t want it any other way, but of course you want your child to be healthy and I don’t think there is anything wrong with saying that if you could change what happened back then, you would.
She has round the clock love care and support and in my opinion did much better being “institutionalized” then just being at home with her parents. Best of both worlds for her I’m sure. Bless this family ❤
How is it possible for this Mom to have a 39 Yr old daughter ? Wow - she is so beautiful. And she is very far from weak - so strong and brave. Thanks for sharing your story, Elizabeth . I'm sorry you have been so affected by the medication. I'm so glad you have such a loving family and that you have learned to smile again. Mom and Dad are so lovely. Give them my love and accept a great big hug from me. Janice 🇬🇧
This is such an important topic, all too often hushed up. This is such a strong family to be willing to discuss the taboo topic of parents who cannot handle what it takes to care for a disabled child. Chris, this might be one of the most important interview videos you've done on your channel.
I hope her parents read these comments and get to see how lovely they really are. They deserve to know how incredible they are for holding that space for their daughter as well as their other two children.
A neurosurgeon who recovered from a brain injury once told of feeling blissful because the logical side of her brain was not working properly so it may not always be as bad as it seems from the patient's perspective .
The emotional pain these parents have gone through is truly palpable. Yet, they are so loving and so concerned with all three of their children, it is really so touching. I'm so sorry this medical accident happened but it was not "karma" as the mom's mom sort of implied. It was bad luck. Yet, through the hard work of these parents, the family feels united, despite the medical needs and attention Elizabeth requires. Elizabeth does have the sweetest smile and seems to reserve her remaining cognition to connect with her family. Her sister is very compassionate, in all of her discussion of this situation. I wish the best for them.
Elizabeth IS responsive.She responds so warmly to her father, he must be a really good person. Good bless this family,I wish them everything wonderful 🙏💗🙏💗
If anyone that reads Elizabeth's story and is a neurologist or pathologist, or knows one, would you ask them, if she fell out of her stroller and hit her head the night that she went into status epilepticus, could this be the cause of her brain damage? The doctors never said it was from the medication. I have been searching for 37 years to find a reason with no answer. When she hit her head, she did not lose conciousness. But, she hit the back of her head very hard. Her Dad had her in the stroller and failed to secure the lock. I am not blaming him, just want to find an answer. Thank you, Mom
@@marycox7933 Just asked an MD/PhD. He said that while head injuries can potentially cause seizures, the medication is much more likely. In particular, seizures associated with theophylline may be more likely to result in status epilepticus and brain damage than seizures due to other causes. It’s possible the fall may have contributed. Severe head injuries are associated with seizures, but from what you describe the head injury doesn’t sound too serious. It’s also possible the fall plus the medication led to the seizure. Unfortunately, even today there would be no way to say for certain if it were just the medication, just the fall, or the combination. But no matter what the cause might have been it wasn’t your fault.
Thank you for coming on the show. I have a son with an undiagnosed condition, lots of medical trauma, the brain is affected. I am currently staying at a neurorehab center with him for intensive therapy and in the midst of brain injured children with their moms. It is so moving, it seems like every one of us has experienced a medical mishap done to our child and it is unfathomable what that caused exactly in each child but your story is on the extreme end of the spectrum. Bless Elisabeth and the parents! I hope you share more on other platforms because it is very good to listen to you and it helps me with my story. Much love from Switzerland!
There should be no guilt for having to put her in a care facility but that's normal for people who love their child or family member. They obviously do the best they can for her with the 24/7 care she needs. God bless🌸
The mom is so incredibly strong, you can feel her pain. She’s so obviously caring and loving, she did everything right and none of this was in any way her fault.
I worked as a 1 on 1 care for a guy who had a brain injury he got in his 40's. His wife divorced him, his children never turned up ever, but his mum and dad visited until they couldn't due to their age. We then took him to visit them at their home. They were always guilty about having him in a home but they couldn't care for him the same as we could (picking him up physically, showering, feeding, keeping on top of medication.) Sometimes you just need to rely on a specialist facility to care for these people, you can never do it at home.
SBSK is a such an amazing loving channel. The host (his name escapes me) is one of the kindest men I've seen him treat every single person including family with love, respect and like any other person
My heart goes out to Elizabeth and her family. When her mother said that her mother told her it was her fault it brought me to tears. It was never your fault. There was nothing you could or should have done differently. We all do the best we can with what we know at the time. Wishing all the best for this incredible family.
I am going through one of the toughest times of my life right now, but boy does this video provide some perspective. God bless these wonderful parents and their beautiful child.
There is absolutely NO reason for these parents to shoulder this kind of guilt. It's not their fault at all. I wish they could've sued the medical provider who put that child on an adult dose of Theophylline. An entire family's life destroyed and nobody is held accountable.
There's probably no proof, and meds are clearly labeled for interactions, possible side effects, etc. Read them folks. You Americans are always so ready to sue everyone in sight, rather than taking a second to remember that doctors hard working are humans.
@@HLl564oh come TF on. Doctors were prescribing alcohol and cigarettes to pregnant mothers at that time too 🤡 totally not the doctor’s fault huh 🤡
In profoundly hard of hearing today wearing two hearing aids to be able to be part of the social world.
Why was I born this way ? NO
When I was three I developed an ear infection which turned into an abcess. My family doctor was on holiday and his practice was being covered by a document prescribed penicillin which my notes clearly stated was not to be prescribed for me but worse than that he prescribed an adult dose.
The moment our doctor who was a family member returned he checked my notes and came knocking on our door at 11pm to check me out.
I spent the next three weeks in hospital after being taken there directly by him.
By time I was 6 I had hearing loss and attended out patients from then to now. I had damaged eardrum due to the strength of the eardrop
( also adult dose) that actually burned it. As I grew older I had several operations including plastirectomy I have worn hearing aids for over 25years now
All because of a doctor's mistake.
😢
@@HLl564 WRONG. THEY NEED TO BE HELD ACCOUNTABLE LIKE EVERYONE ELSE.
People who say they would never put their loved one in a facility has not walked a mile in your shoes.
It's a damn sight better than being overwhelmed
yep! ur completely correct
This👏🏻
Correct. Most people are NOT equipped to be full-time caregivers for one reason or another, and you don't know it until you're in that situation. I help care for my mother, and I'm only in my early 30s. She can do primary functions on her own (clean herself, use the bathroom, make basic meals etc.). I do all of the physical work - general tasks that she cannot do because she gets tired quickly; help her with her dialysis treatments every evening. Before this, throughout my late-teens and into my late 20s, I cared for my elderly father who was completely disabled from a stroke when I was 19; he died when I was 27. Now, in my early 30s, it's my mother. I know I could NOT mentally and emotionally deal with caring full-time for my mother if she were to become even more dependent than she is now. I've already given more than I'm capable. To be my mom's full-time caregiver would mean that all of my young adulthood was spent caring for my parents and not having my own life. I cannot do it.
My cousin had severe brain damage as a result from a birth injury.. we all love him so much. He never spoke words. His parents lovingly cared for him at home until his teens. At that time my Aunts age and physical ability and his size and needs just became such that they had to put him in a facility. They agonized over this decision. He lived there until age 28, dying of pneumonia. I miss him very much. I miss you Laban I love you
It's really a disgrace that her parents were just sent home with no social services assigned to help them. In a way, it's harder to deal with than the death of a child.
The support for families of children with special needs here in South Africa is non existent.😢
That was decades ago in the US. Medical knowledge has improved, is my impression. Although, today, one political party in the US still laughs it off. So, my hopes are diminished.
@@chuckthebrindlepittie6820in many ways it's not better. Many horrible things happen today as well. The things we are ignorantly doing today? Well, we're IGNORANT of them so we don't know they're wrong yet.
Totally agree. The things we are spending money on instead of on Elizabeth is to all of our shame. Lots of people screaming at each other about meaningless things when the answer is right in front of us
I was sent home with my son after his birth in 1987. He has a rare genetic disorder. I was given no instructions, nor guidance. The only thing I was told was that he wouldn’t live long…. He’s in his 30s now. 🤷
Oh no. Mom's mother telling her this was punishment for doing something wrong is one of the cruelest things I ever heard. God bless this precious family.
He hasn't blessed them yet.
@JJ-iq8mi my thoughts exactly what does gid have to do with any of it
@@lovesallanimals9948 People like you blame a God you don't even believe in. There's all kinds of trials and tribulations in this life. You want paradise read His Book.
I am schizophrenic. This is often an extremely severe mental illness. I am an individual that probably can't live independently. I understand why my family has put me in a nursing home. I still love them. Amen.
Amen ❤
They still love you too.
Bless you. xx
Nursing homes can be better than being at home for many people. Some people are happier in nursing homes.
A schizophrenic who supports Hamas… no surprise there. Yall are the reason we need loony bins.
Putting a loved one in a nursing home isn't a topic that is often discussed on this channel. It's good to see it. This was a fascinating interview.
I agree! I'm happy that we get to see this perspective.
These parents have succeeded as amazing parents. For Elizabeth and the other children.
Please pass onto them @SBSK. Absolutely brilliant parents. Noone could have done any better
@@mason74551No you're not.
God bless this family. ❤🙏
It’s a painful and difficult decision when it’s a parent, and I can’t imagine how difficult and heartbreaking it must be, when it’s your child.
"I'm just weak." Funny because I don't think I've seen many stronger people than this. Amazing family.
Agree her mom may have been broken a few times but it speaks volumes that she’s gotten back into life each time. A truly amazing family❤
That made me so sad because you can tell that she isn't weak.
I couldn’t agree more. It sounds like their daughter is getting exceptional care. All children deserve care, and the other kids needed mom, too. I 100 percent believe they did the right thing in this case. Special people need special care, and sometimes professional care is the best. I wish that every person in her situation had a family like this behind them. Elizabeth is a lucky young woman, despite her disability. She is so loved and it shows. Her connection with her sister is so very special.
The weak thing would have been to refuse to admit that she needed additional resources. She did the strong thing. ❤
@@nerysghemor5781 That is 100% spot on. She is exceptionally strong, even if she doesn't see it herself. They all are and you can really tell how much of a loving family they really are.
Momma looks so good to have a 39 year old child. Goodness she's stunning and so sweet.
my jaw dropped, when she said 39. I thought she was going to say 12 🫢
@@Notaravisen Not a lot of sun exposure bitterness ,,habits like smoking ,and responsibilities of daily living etched in her face !
The girl is 39????
Yes, the daughter is 39.@@RetroAdventurer-k3m
@@NotaravisenThought the same thing. She's older than me.
I was judgmental about placing a child in a nursing home before I watched this video. I was a changed person after I finished watching. Thank you for opening my eyes and deepening my empathy. These parents tried and are trying their best. Big respect.
The only people who fully know how emotionally and physically draining it is to have a special needs loved one who needs 24-hour care are the caregivers and family members. It’s one of the most difficult and exhausting things someone could ever do, especially when you have a job, other children, a spouse, etc. You have a constant stream of nurses and therapists coming into your home. Sometimes, those nurses call in sick and you suddenly have to call in to your job because you don’t just have replacements that know your loved one’s routine/ schedule, medications, activities, etc. If a nurse quits, you have to train a whole new one and build trust with a brand new individual in your home. Those nurses generally have to be found and trained by you, as the parent/caregiver, too. You’re basically taking on a role as a charge nurse when you have a loved one that requires 24-hour care, so it’s almost like a second job. I’m glad you were able to get a glimpse and have your mind changed. These people need all the support and understanding they can get. 💜
I’m so proud of your open-mindedness! This trait will do you so much good! May we all keep learning, every day of our lives.
This is how we grow and become better people! Love this for you.
@@E4_MAFIA
This makes sense💜
@@guardianangel9517 I’m glad I could give you a little insight! 🤗💜
"There's no getting over it. There is adapting to it." Wise words.
The way Elizabeth looks at and reacts to her sister, I think that connection is 100% real
I felt that too
She was tracking her and smiling it is adorable.
100% very strong, mind to mind and soul to soul. Xxx
Bro when she said “I talk to her on walks when I’m all the way in Atlanta” and she literally made a noise like she was confirming it!!!
They are soul sisters and communicate through the heart.
“She didn’t smile for 20 years.” Bless these Parents!
I can't imagine how hard that would have been. Smiling, hugs etc are the rewards you get in return for the relentlessness of child raising
@@sarahp8937Whatever they did to keep working with her and make her feel like smiling, even after going through such tough times together…I am so glad that they got to that place. ❤
She looks very happy and content. But why so many moves to so many different facilities? 🤔
@@missmew5240 I'm guessing that a facility was bought out by a new corporation or whatever and insurance changed. Or she could've been in a facility that only cared for children up to 12 years old. Then one that was up to another age. Sometimes a new corporation is in charge and staff changes and it's not an improvement, shall we say. There are several reasons like this that might've caused them to want to move her.Sometimes you find a fabulous facility but there's a long waiting list. So you place your loved one in the next best and fabulous facility until you are accepted.
@@missmew5240Things can change with time. Sometimes it’s because a facility closes its doors. Sometimes beloved staff leaves and is replaced with people who are not as competent. Sometimes care needs change, and you need to find somewhere else more qualified. Given how active her parents are in her life, I’m sure they have kept a very close eye on her and the care she receives. I think it’s wonderful how the mother is always committed to ensuring her daughter has the best care possible at all times, and will move wherever is necessary in order to do so.
I felt emotional when her mother talked about how she felt guilty about leaving her at a care facility. Her parents are so sweet.
Exactly!
sometimes its best to do. when my friend's daughter was born she was born with severe retardation and her parents had no choice. it sounds mean but when you are in the care of trained professionals you are more at ease with your loved one
@@KrystalHarwood-z1b taking care of a disabled person is incredibly hard. People who shame those who let professionals take care of them have no idea what it's like
@@KrystalHarwood-z1b my stepdad gave custody of his severely autistic son to the state, which was not uncommon at the time. He visited his son often, and took him places, but caring for an adult child with such severe needs was very difficult. Some people may feel it's unkind or unloving, but that's far from the truth. I have nothing but compassion for Elizabeth's parents.
Sometimes people need more care than can be given by a non professional.
People who say “I would never put my loved one in a nursing home “ don’t know what they are talking about. Unless you are in that situation you can’t say anything about it.
Well said! I’ve never been in this situation but it’s VERY easy for me to see how it’d be massively overwhelming-there’s no way I could personally handle it. What I can’t believe is how many other people are incapable of empathy and are so holier-than-thou. The majority of people really are trash and it’s ironic because they’re usually the ones acting morally superior.
Well I do cast a little bit of judgment but hear me out:
Especially with non verbal folks, these care facilities are abusive. There was a case near me recently where a non verbal woman was you know what and got pregnant at a care facility.
Hopefully they visit frequently and have found an extremely rare nice facility (though I’m convinced that those don’t exist sadly).
I've worked in a couple of nursing homes and you have to be so selective of the home you choose. I never witnessed any violence or aggression toward the residents but I did notice some negligent behavior. Elderly people usually don't have much of a drive to eat or drink, so an aide would ask once and if refused wouldn't offer water until hours later. They under-offered water to lower the amount of diaper changes. Keep in mind many of these places are understaffed and underpaid.
@@princesspikachu3915I’m sure they were picky and/or knew someone.
@@princesspikachu3915I guess they found TWO "rare" facilities then.
“She didn’t smile for about …20 years”
“She cried for the first year or 2”
Bruh, this is heartbreaking.
100%
yea, a lot take life for granted.
My gut dropped
It brought to mind how amazing that must have been when she did start smiling. ❤
It feels like a Life story
There is nothing to be guilty about. Her quality of life improved because y'all provided her with round-the-clock care at a good facility.
Came in to say the same thing. I work in healthcare and so often I see caregivers approaching or fully in burnout, where their own health is taking a back seat, and I’ve seen caregivers pass away before the care recipient because of it. Elizabeth’s dad hit the nail exactly on the head. They are 2 people providing 24 hour full care, likely total assist for many needs. In a nursing facility there are 3+ shifts with a full staff. I wish more people would acknowledge the benefit and quality of life that can be achieved for the family and the care recipient by embracing institutionalization. They can focus on being her PARENTS instead of having to focus on being CAREGIVERS.
@@rtracy1216true but there's also the fact that a lot of people get slapped around, sexually/financially abused, and also stolen from when they're in those facilities!🤮
That’s why it’s so important for families to do thorough research into each facility beforehand- it sounds like these parents have done that, and found great places for their child to thrive and have the best care possible. The ultimate act of love, in my opinion.
@@guardianangel9517 there’s also the fact that family members and loved ones are more guilty of that behavior than professional facilities. Why even bring this point to the conversation?
@@guardianangel9517 Then solve that problem, don't blame caregivers for needing help.
For those who are wondering, the medication that lead to Elizabeth's seizures (theophylline) is rarely used these days. It's still an important medication for those who need it, but thankfully we have many other options to treat asthma these days that are safer.
Oh wow! You’d think the FDA would ban such a medication because of this horrible side effect. But, I’m it isn’t used unless it’s necessary.
That’s good to know.
The fdas history is One of the bloodiest ones you can look into
I hope it was rarely used in those days too! You have to have really severe asthma to need theophylline, and never at 18m in the U.K. you need to monitor levels etc.
@@CattyT1
Interesting 🤔
I am a full time caregiver for folks with a wide range of developmental, physical, and/or mental disabilities. This video hit my heart in a special place. I’ve followed SBSK for several years now…but this one really hit home to what many of my clients and their families go through. Shout out to Elizabeth, her sister, and parents for being such an incredibly supportive family unit regardless of divorce/life changes/distance/etc.
I am glad Elizabeth was included in the interview. I feel like she was picking up on a lot of it, and she really appreciated this handsome guy, with good energy coming and talking to her (not just about her).
J ai beaucoup d empathie pour ces parents ❤étant moi même maman d un grand garçon de 43 ans polyhandicapé (cécité, autisme, psychotique ,incontinent) la vie est bousillée à jamais, et la médecine, en termes d avancée, est nulle !Ces choses ne devraient jamais exister, la vie est injuste 😢🇧🇪
Thank you for your kind words of support!
Thank you for your kind words.
@@patounyssen1631 PLEASE talk to a solid pastor of a bible based church, Jesus really loves you and He is near you. I lived in Europe if that's where you are and it's spiritually enemic. Read His Word. You need to be lifted up.
To Elizabeths mom, you are NOT WEAK. You are a mom that has all of her energy stolen. Your daughter is happy and has assistance 24/7. Sending you love and hugs.
Thank you!
Thank you dear lady!
Thank you.
❤💯❤️🙏🙏🙏
I have a 22 year old non verbal autistic child with intellectual disability, challenging behaviour and epilepsy.Everything in my house is broken from him smashing it up.Hes physically perfect,very handsome,it breaks my heart when i think of the life he should of had.Hes with me full time.Ive been in psychiatric care 5 times.Its a hard old life.
I wish you the best for the future, you're incredibly strong ! Good luck
There’s nothing that I could say to change your current circumstance yet I’d like you to know that the moment I read your comment I felt as if I understood in some way unknown to me how lonely you may feel sometimes.
We are not truly alone even in our loneliness there is often someone who is willing to share a smile, a genuine kind word, a sincere hug, or just a gentle nod to acknowledge that they we are seen.
You are not alone…
I am So sorry dear lady! I pray you can find help
I love you and I’m so sorry. You’re an amazing mom
My 39 year old son is high func autistic but with heart of a saint. There is no use trying to make him see life as it is. I said to him when mom goes to heaven you'd give this house to a stranger wouldn't you? he said '''Yes because we're supposed to be nice to people'''. He also is handsome and tall, back in H S some girls wouldn't leave him alone. However he's very much into electricity and things of that nature. He's also a solid Christian. He got saved the day Franklyn Graham came to preach at church.
Oh my goodness, the Love and support I am feeling from everyone just floods my heart! Thank you for not judging me and giving your support and listening to Elizabeth's story. Her sister, Mary Kathryn, is responsible for making this happen. She contacted Chris and wrote a beautiful essay, asking Chris to give Elizabeth a chance to tell her story. And Chris, you did a wonderful job. You made us feel so comfortable and your questions were so poignant and you are doing such amazing work. I applaud your efforts to bring light and love to the disabled!
Well done Mary to yourself, your ex husband and children for telling Elisabeth’s story. Being vulnerable is a brave choice and only you and your family know the challenges that life has presented you with. Sometimes there is no reason or rhyme to life and we cope and survive in only the ways we know how to. I would like to say …I hope you have had a chance to unpack and unravel the experiences with a trusted person, either professional or friend wise, that allows you some solace and peace of mind. Allow the kindness you extended to your daughter and family members to be gifted back. Some times the weight of certain outcomes challenges even the most strongest and wisest… it’s a reflection of the seriousness of the task, not the judgement call on someone’s character . The discussion around stigma is most important, as often silence allows it to remain , as is. Wising you and your family moments of joy.
You are a good woman Mary. Don’t ever forget that! Much love from Australia x
Mary you're so honest and sweet and you've been through so much. Its not you're fault ,none of you deserved this. I'm sending you so much love. My names Mary too ❤
You are a wonderful mom and you’ve done the very best for all of your children. This was absolutely not your fault. I can’t even imagine the pain you’ve gone through. Yet you’re still showing up for your daughter in every way. That is strength. ❤
Thank you for sharing your and Elizabeth's story. You are incredibly strong and did the absolute best you could raising all of your children. I am sorry you have had to bear so much guilt and grief. I see nothing but love, devotion and an incredibly resilient and loving mother.
Momma you are not weak. You are so so so strong and you did your best for Elizabeth to the best of your abilities
Thank you for your kind words!
Man, you can really see the tole it has taken these parents raising a disabled child/adult. Absolutely gut wrenching.
*toll
She's really smart too. She's normal mentally but lost her ability to control her body. Poor woman
@@leahtv7778 no, she's not 'normal' mentally, and she's not just paralysed. she's intellectually disabled. she never went to school. If you're talking about her intelligence, at no point did they say her IQ was 'normal'...
@@leahtv7778 This isn't true, I'm unsure where you got that from. Her entire brain was destroyed and she only has a small part of her cerebral cortex left functioning - that is not normal mentally. She likely has the mental capabilities of a small child.
@@leahtv7778they literally said she barely has any cerebral cortex function left.
I worked with developmentally disabled persons with medically complex diseases, for 16 years in a fantastic facility/school in NJ. The patients were very well cared for and happy. This mother should not feel guilty. Her daughter is getting great care.
The sister explaining the strong bond between them was so beautiful. I think she would be there for Elizabeth no matter what.
Elizabeth's sister seems like such a genuine, thoughtful and resilient person. Elizabeth is lucky to have her, and she clearly is lucky to have Elizabeth.
Watching her talk about her bond with Elizabeth was so profoundly beautiful ❤
Her sister is pretty.
It looked clear to me that Elizabeth's sister is one of her favorite people! She had the BIGGEST smile for her! It looks like she loves her family being around her.
@@ladyrazorsharp Thank you! Mary Kathryn is truly a wonderful daughter, sister and lady!
@@marycox7933you must be so proud. I have a son like Elizabeth and 3 other children who I am going to show this video to someday when they are mature enough and the time is right. Mary Katherine’s testimony really choked me up in all of the best of ways. What a beautiful person she is and there’s no doubt in the world you and your former husband had a huge part in her character development, as well as your beautiful Elizabeth. Your story is beyond inspirational and y’all are heroes to me!!
It’s sad that the parents feel guilt about having her in the care institution due to stigma even though they visit every weekend and they didn’t want their other children to feel neglected
It's not a mental institution itvis a medical care facility. Big difference. 😊
@@shawndewitt3587!!!
It's not due to stigma. They feel bad about it. Being in an institution isn't the same as being at home.
@@erin6945если человек нуждается в медицинской помощи, то нормально поместить его в больничное учреждение, это не грех, а необходимость
You didn´t institutionalize her and leave. Whoever thinks that severly lacks intelligence. What you did and continue to do is acquire the care she needs, and you never left her. Your incredible strong love and committment to Elizabeth is phenomenal.
Yes, sometimes you need to ensure the person you love has around the clock access to professional caregivers.
As a disabled person, me and my family have found it extremely difficult and EXPENSIVE to find good help. And my needs aren't nearly as complex as Elizabeth's. I'm sure she's receiving the help she needs, and her family continues to show her the love and care that any human being deserves. ❤
They live over 2 hours away and only see her occasionally. They left her.
@@kristymay9435The family says they spent every weekend growing up with her. The mother still spends every weekend with her. The father drives 12 hours every other weekend. These people need to work, they need to make money and rest. Without that, they can’t afford her medical care. It sounds like these people spend every day living for their daughter.
Thank you for your kind words!
Thank you for your kind words!
I hope this beautiful, loving mom is getting consistent, frequent, quality mental health care for herself. She clearly has so much deep pain, trauma from seeing her child suffer a traumatic brain injury, intense and layered guilt, religious trauma from her childhood, relationship issues with her own mother, and whatever else she struggles with that we know nothing about. This sweet woman deserves to have some of this heavy, heavy weight that she's been carrying around for the last 40 years lifted, and the only way to do that is to get consistent, ongoing professional help. It's an act of self love and she deserves it.
Thank you!
My heart just aches for Elizabeth's mom, her pain is so deep, so consuming.
I used to be a carer for a wonderful, beautiful woman in her late 40s who has a very similar story to Elizabeth. She was born healthy, then when she was 18 months old she had a massive seizure which caused a severe brain injury. She is now non verbal, tube fed and unable to walk without 2 people helping her balance. All that out of the way, she is now 52 and incredibly happy and healthy despite her challenges. She always has a smile and brings joy to everyone around her, and she can communicate more with one look than most people can with a whole book!
Thank you for your comment. Do you know what caused the seizure? I ask because I have a 13-month old.
@@AS-qg1xu I actually don't, I don't think her sister even knows, and she told me her whole story as far as she knows.
This man alone makes me believe in humanity alone I love you
People don’t understand how much effort it is to take care of a medically complex person. I’m not even as severely disabled as this girl but I know my family struggles to care for me and me myself. I completely understand why a family might need a higher level of care like a nursing home.
There really is a lot of unfair judgement about it. Just lifting someone, frequently, takes a lot of physical endurance that many people don't have. Add in age causing joint and back issues and it reaches a point that parents just can't do it themselves anymore. Institutional care can be excellent or it can be terrible depending on how a particular place is operated, but it's not always an act of neglect. My own grandmother, 99, is looked after my father who is himself in his 70s. He and his sister are still hemming and hawing over it, but her mobility and cognitive decline worsen steadily and I keep telling him he needs to research a placement now and not wait til it's too late to be choosy anymore. It's better than letting her needs go neglected because his bad back is getting in the way.
I do as well. I’m moderately to severely physically disabled (my abilities depend upon my pain levels as well as how much I can move) and I live with my mom. At 67, turning 68 in a few weeks, I don’t know how much longer she’ll going to be able to do it. She’s still working full time and caring for me full time. If she says she can’t do it anymore and I have to go into a care facility, I understand. I’d rather have her do that than run herself ragged and possibly put her own health at risk.
"I'm just weak...." Oh no no no, you are NOT weak. You are a human, and I think you are actually very strong. ❤❤
The mother’s mother telling her it was her fault is wrong. I’d call it evil. What a horrible thing to say to your child.
Ikr I was in disbelief. I had to rewindjust to process.
I'm a devout Christian, and a severely physically disabled person for most of my life.
Not only is God not punishing her, God is absolutely not punishing Elizabeth! This is Elizabeth's life, and she didn't incur God's wrath as an 18 month old baby. Her mother learned some bad theology somewhere.
This was not your fault, mama. You may know it at some level, but you're punishing yourself for Elizabeth's sake. You don't need to hold onto the shame and guilt anymore. You've done so well for your daughter.
The Bible says to run the race, fight the good fight, and keep your faith. You have done well serving God in this life ❤
What more honorable, dignified way to live out a life than to graciously serve your disabled daughter and give her a safe life, cared for, ensured she's loved. God bless you and your incredible family ❤
U can't hear I take it ..at @726 she says "it's NOT your fault" turn on closed caption ...and no point does the mom say anything u heard .
After u listen kindly F off!!!
@@bodyofhopeu need to become a devout reader. She NEVER said any of that 7:16 and on...
U just made every devout Christian look awphul
She told her ‘it’s NOT your fault” 7:23
I really feel for that mother for ending up in a psychiatric hospital twice over this stress. I'm very sorry for her, but at least she had resources to control her anxiety. That's something to always be thankful for.
I hope she is not on psych meds
@@JFlower7 Why?
@@JFlower7I hope she has whatever meds she needs.
@@JFlower7 I agree, they gave me epilepsy! Thankfully no more severe brain damage though, like poor Elizabeth.
The feeling of fault is horrible
“Life doesn’t end but it sure changes”. Such an incredibly strong family with a great philosophy of life.
Thank you dear lady!
Dear Elizabeth's Mother. I am not religious in the same way you are... And yet, when I look at my kids (all 4 are special needs to various degree), I like to tell myself that I am their mother beause I am just an awesome parent who is cabable of loving unconditionally, because with me they have the most fulfilling life possible. What I am trying to say is that, perhaps, you had Elizabeth because the Universe (or whatever diety you believe in) thought that she deserved the best mom ever and that best mom was you. It may not be my place to say, but you. are. a good. mother. Don't allow anyone to persuade you otherwise. It. is. not. your. fault.
I don't believe she thinks it's her fault because it is the doctors fault. I believe it was the grief if losing the daughter she once has and should have had that brought her to her knees and to the psychiatric hospital twice. The guilt was from allowing that doctor to perscribe her that and giving it to her and now knowing better. But she couldn't have known better. She trusted the doctor, like most people used to. These days, doctors are not as trusted and it's why we go for 2nd, 3rd, 4rth opinions.
@@TheKatarinaGiselle I think she means Elizabeth's mother shouldn't believe what her own mother told her, that God is punishing her for something bad that she did. She said her mother told her when bad things happen to you, it's God punishing you. Smfh...
It was abusive of her mother to say that god punished her. So so abusive and traumatic. She is dealing with some generational trauma alongside the grief she has for what her daughter could have had. So complex but I think your message is beautiful.. she was chosen to be the best mom. I love that outlook so much.
Thank you dear lady!
bless this mom for opening up about her own psychiatric struggles, it’s not often talked about on the SBSK channel how much of a toll caretaking may take on someone!! this family is incredible
Thank you!
Her sister gives off an awesome energy, I smiled as soon as I saw her.
Her sister loves her too - you can see it
Thank you! She is an amazing daughter!
The way Elizabeth smiles as people talk to her is something that we can all learn from.
Shame on the Grandma telling her daughter that God is punishing her no wonder poor lady ended up
In a physiatrist ward two times. Sounds like she didn’t have the support she needed most! Like the love and support she gives her own daughter❤ I’m Christian and my belief is God is a loving God not a vengeful God!!! Please forgive yourself! You did nothing wrong! P heal Jesus loves you for being a wonderful kind and caring woman!!
some people have that belief because then they can tell themselves that because they are "good" then nothing bad can happen to them like those "bad" people. But it's contradictory to the gospel entirely, Jesus directly refuted such a statement about a blind person before healing him in the bible. People like that haven't even read the scriptures they claim belief in.
I agree ❤.
That was beyond evil!
Thank you for your kind words.
I wonder if they have been able to put their trust in Jesus. Such an awful comment could def turn people from God. The amount of peace they could have. Their guilt gone and knowing they will have eternity in heaven together where Elisabeth is whole. I pray that for them
Her mother describing a knife going through her heart each time she sees her child in her injured state, is absolutely heart wrenching. These parents have had such a heavy cross to bear.
Thank you for your kind words.
My son Brandon had a vehicle accident in 2013, he was 16 and had a brain injury. He couldn’t communicate at all really. He lived 3 years, most of the time in a pediatric nursing facility 2 1/2 hours from home. My brother bought a beautiful 5th wheel and put it at a park 1 mile from the facility. That enabled us to have a family member with him almost all of the time. We had a camera in his room connected to an app on my phone so I could see him anywhere I was at any time. We bought a van so we could take him to town, the lake, etc. I know the helpless feeling and the stigma of having your child in a facility. As they get bigger, it’s impossible to lift and move them to bath them, give them the. Are they deserve and work to survive, the list goes on!! We did bring him home before he passed and I am so thankful for that time. They have done AMAZING with Elizabeth for 37 years!!!!!! They can now put cameras in their rooms and they would feel so much more connected to her!! God bless this family! They will be with her restored one sweet day…
So sorry for the loss of your son and your kind words!
Thank you dear lady!
Elizabeth’s smile for her sister is next level awareness and love.
Mumma, you are NOT weak, you’re realistic of her care needs and how to give her the best care.
Thank you!
I wouldn’t even try to understand what they’ve gone through. These parents are angels.
Thank you for your kind words!
Elizabeth's sister speaks very profoundly. I wish this family a life of peace. Tragic, beautiful video.
My daughter was on cissapride as an infant for GERD In the early 90s. Gerd wasn't well studied then like now. I questioned the dosage with the major at walter reed, he insisted it was correct. I discovered she was given 10x the adult dosage, she was 3. I never gave her the dose prescribed, it seemed wrong. She told me her heart kept stopping. Her doctor was horrified and sent us to the ER for an EKG. The major got into trouble (military) and the medication was removed from shelves. My daughter is 31 now. We were lucky that she's ok. Prayers for this family.
A "major" prescribing? Why did you see a military man for medical care when doctors were available? I feel like this story is missing context
@fritzfxx Walter Reed is a military hospital. You can have Dr's who are Majors, Sergeant Majors, etc
@@fritzfxx see above
@KatieDeGo that's correct. At the time time, we were active duty military and she had her surgery there. Nothing is missing.
@@fritzfxxwhy did you have to be so rude? You can inquire about specifics politely without insinuating incompetence
Yes, Elizabeth's dad is correct - two people cannot handle the level of care the she needs. I know this just from a taste of it when my dad was ill. Even with my mom and all four of us siblings doing our best there were simply things we couldn't do, situations we were not equipped to handle whether professionally or physically. I'm so sorry her parents feel guilty - to me they are an inspiring example of a devoted and loving family. It's a privilege to learn about their experience. I'm grateful to them for being willing to share - and thank you Chris for providing this considerate platform!
I appreciate the fact you ask real legit hard hitting questions- you dont skirt the issues. These families get to really talk and open up and I think that could be insanely healing...they get to be truly heard.
I would absolutely put a child I loved who needed intensive care in the hands of people who could give it to her better than I. My exhaustion and lack of ability to work and sustain myself socially would not benefit any child. Much love to this whole family. I wish I had this close of a relationship with one of my sisters. ❤
It’s never too late❤
Brave, honest people. I feel strong respect.
Facts!
I work at an intensive care nursing home for medically complex, fragile kids/young adults, and have seen many parents over the years. They run the gamut of involvement, but NONE of them can be judged by anyone not in their shoes. I'd give a lot to be able to ease this mom's pain.
I worked two summers in an ICF level facility. There was a teen girl that had developed meningitis at age 7-8 and was severely disabled as a result. Her dad was a widow and he came every couple of days to sit and talk with her. There was a tape of the girl reading before she became ill. Definitely made me sad to think of the lifestyle she had lost. Her dad was great. He’d sit with her in a rocking chair and talk to her for over an hour every time he visited.
Thank you!
The grief is palpable throughout. So is the love. ❤
Thank you!
The sister saying she talks to her sister on walks when they are hours away from each other is how I was with my best friend who passed away almost a year ago. Absolutely broke my heart but made me feel so unbelievably happy for them and their beautiful bond
I agree with what most everyone else here has already said; there's nothing to feel guilty about. Life threw an unimaginable challenge to your family, and you gave Elizabeth the best care possible. There is no shame in that. Everyone here in the SBSK comments wish Elizabeth and her family all the best in life!
I have a 24yr old brain damaged daughter. When the mom said she worries about when she dies one day that just got me, that's my biggest fear!! 😢
I have a 30 yr old son in the same situation and I feel that way.
❤❤❤
God bless you all!
I give these parents so much respect because they never abandoned their daughter. TBI is probably the most horrific.
Definitely, and mental illness too.
Thank you!
The guy that is on these video is the nicest kindess person ive ever heard in my life.
He is a very impressive person!
he is an empath probably a hyoka very rare
@@burgundyjayde whatever he is it needs bottled
@@Autisticsenses He offered his daughter his shoulder and calm presence, and she drifted off to dreamland.
Chris is Amazing!
These loving parents have never gotten over what happened to elizabeth😢…I think they made the best decision for them and Elizabeth….no one can judge other peoples decisions….i want mom to know this wasn’t ever her fault and I’m sorry her mom told her that…this family could benefit from some therapy…they need some healing….love to this family ❤️
Thank you!
These parents have absolutely nothing to feel guilty about!
My brother used to manage a group home for developmentally disabled adults. I would visit often. The patients and staff were all like one big happy family. The staff had such affection for the patients, and the patients got such great care, better than they would've gotten at home with one or two exhausted, stressed parents.
What a great family. I love the connection the sisters have -- soul mates. 💜
Heartbreaking how guilty Elizabeth’s parents feel. Not their fault in the slightest! Not to mention how the hospital left them without answers or support. It’s clear they made the best choice for Elizabeth, and love her very much.
Thank you for your kind words!
Oh my heart broke a little when Mom said she is just weak. I don't see you as weak, you went threw so much hardship, pain and grief and managed to keep your daughters and yourself alive! You raised two wonderful women. If that is not strength, I don't know what is. And even if you wish you were even stronger - you are human and not made to be perfect.
As her personal friend I can tell you she's anything but weak! I tell her all the time she's one of the strongest, most compassionate, intelligent, beautiful and amazing people I know! And she's always concerned more about you than she is about herself. Her son is a very successful physician and her daughter is very successful also! Plus you can see what a compassionate heart her daughter Mary Katherine has. She did an incredible job under the most trying, difficult circumstances anyone can imagine... with grief that continues... and how can it not?
Thank you for your kind words!
As a mother this breaks me to my core.... Shes a great mother.
As her friend I can tell you she's a wonderful incredible mother... she's by that bedside every other weekend and Elizabeth's dad goes on the weekends that she isn't there.
Thank you!
My daughter died at birth, so a completely different situation, and yet so much of what mum and especially Dad said resonated with how myself and my partner feel. Sending Elizabeth and her family so much love and support xxxxxx
I'm so sorry. That's awful.
You had no previous warning, such as an ultrasound, during pregnancy, about the potential risks to your offspring, or the bleak odds/likelihood of having an unhealthy, disabled baby. So, never doubt yourself. I am very sorry.
So, So sorry! I know ,I don’t know you , but it’s got to be the most heartbreaking scenario ever. I hope you have a gentle journey on getting through the grieving process❤
Im sorry for your loss. I just had a baby and I can’t even imagine it but as I read your message and listen to this video, I slightly have an idea of the kind of pain you guys are feeling and my heart aches. I cried for you both. Just know there is someone out there in this crazy world thinking of you. Sending you all hugs! ❤️
So sorry
It is impossible to imagine what this beautiful family has gone through during the last 37 years. What a candid, heartbreaking conversation. Elizabeth is a remarkable woman. Wow, what else can I say?
Thank you!
I will keep saying this..Parents of Special Needs Children are the Hero's of our world ..God Bless.
Mama, from every other mama out here, thank you for letting us share in some of your pain. I can only hope that you feel us out here, offering you the grace you can’t quite give to yourself yet. ❤
Thank you!
Her parents and sister are so amazing with her. I know how they feel. I had a daughter with a disability as an infant (spinal muscular atrophy). She was born in 1985. The hospital sent her home and taught me how to do NG tube feedings and that was about it. No further suggestions or anything from hospital staff. She lived for 7 months. To this day, I feel guilt and I miss her immensely. I did all I could do to keep her comfortable, loved and happy.
I am so sorry for what you have gone through. You deserved much more support from the medical community than you received.
@@jeanetteh.9240 Thank you for the kind words. It was a very rough and emotional time in my life.
I'm so sorry for your loss 🙏🏽😢 I hope she's resting in peace 🙏🏽
So sorry for your loss!
I watch so many gruesome stuff on the news that desensitizes people...then I come on youtube and I see this...And start to cry...
To the mom, you are in no way weak. You and your family have had a lot to deal with, some people would have totally given up. Even would have given up the child if something like this happened. I really hope this nice family doesn't beat themselves up too much. They seem very loving, caring, and strong to me 😊🫶
These parents deserve happiness. Its obvious they love Elizabeth. It shows. Based on this interview they've been fantastic and made the right decisions no matter how tough they were
Thank you!
I love how open they are that it was and is tragic for them. A lot of people always say they wouldn’t want it any other way, but of course you want your child to be healthy and I don’t think there is anything wrong with saying that if you could change what happened back then, you would.
She has round the clock love care and support and in my opinion did much better being “institutionalized” then just being at home with her parents. Best of both worlds for her I’m sure. Bless this family ❤
How is it possible for this Mom to have a 39 Yr old daughter ? Wow - she is so beautiful. And she is very far from weak - so strong and brave.
Thanks for sharing your story, Elizabeth . I'm sorry you have been so affected by the medication.
I'm so glad you have such a loving family and that you have learned to smile again.
Mom and Dad are so lovely.
Give them my love and accept a great big hug from me.
Janice 🇬🇧
Thank you!
This is such an important topic, all too often hushed up. This is such a strong family to be willing to discuss the taboo topic of parents who cannot handle what it takes to care for a disabled child. Chris, this might be one of the most important interview videos you've done on your channel.
Chris, you have an amazing gift!
Bless this family. You can see exactly how much they love Elizabeth and how well they’ve taken care of her.
Thank you!
I hope her parents read these comments and get to see how lovely they really are. They deserve to know how incredible they are for holding that space for their daughter as well as their other two children.
The mother looks so beautiful despite her age.
She's a personal friend and yes, she's absolutely beautiful-inside and out! ❤
@@lisaheltonhudsonshe & her husband are incredible parents & it’s clear they are great people. ❤
Even though she has a brain injury I believe she's somewhat happy and smiles and has a loving family it's taken a tole on them my heart goes out
A neurosurgeon who recovered from a brain injury once told of feeling blissful because the logical side of her brain was not working properly so it may not always be as bad as it seems from the patient's perspective .
Who? @@celestialcircledance
The emotional pain these parents have gone through is truly palpable. Yet, they are so loving and so concerned with all three of their children, it is really so touching. I'm so sorry this medical accident happened but it was not "karma" as the mom's mom sort of implied. It was bad luck. Yet, through the hard work of these parents, the family feels united, despite the medical needs and attention Elizabeth requires. Elizabeth does have the sweetest smile and seems to reserve her remaining cognition to connect with her family. Her sister is very compassionate, in all of her discussion of this situation. I wish the best for them.
Thank you!
These parents are such sweet and caring people. The mother is carrying the weight of the world on her shoulders, i hope she can find peace❤
Thank you!
Elizabeth IS responsive.She responds so warmly to her father, he must be a really good person. Good bless this family,I wish them everything wonderful 🙏💗🙏💗
Thank you!
If anyone that reads Elizabeth's story and is a neurologist or pathologist, or knows one, would you ask them, if she fell out of her stroller and hit her head the night that she went into status epilepticus, could this be the cause of her brain damage? The doctors never said it was from the medication. I have been searching for 37 years to find a reason with no answer. When she hit her head, she did not lose conciousness. But, she hit the back of her head very hard. Her Dad had her in the stroller and failed to secure the lock. I am not blaming him, just want to find an answer. Thank you, Mom
@@marycox7933 Just asked an MD/PhD. He said that while head injuries can potentially cause seizures, the medication is much more likely. In particular, seizures associated with theophylline may be more likely to result in status epilepticus and brain damage than seizures due to other causes.
It’s possible the fall may have contributed. Severe head injuries are associated with seizures, but from what you describe the head injury doesn’t sound too serious. It’s also possible the fall plus the medication led to the seizure. Unfortunately, even today there would be no way to say for certain if it were just the medication, just the fall, or the combination. But no matter what the cause might have been it wasn’t your fault.
Thank you for coming on the show. I have a son with an undiagnosed condition, lots of medical trauma, the brain is affected. I am currently staying at a neurorehab center with him for intensive therapy and in the midst of brain injured children with their moms. It is so moving, it seems like every one of us has experienced a medical mishap done to our child and it is unfathomable what that caused exactly in each child but your story is on the extreme end of the spectrum. Bless Elisabeth and the parents! I hope you share more on other platforms because it is very good to listen to you and it helps me with my story. Much love from Switzerland!
Thank you! God bless you and your son!
There should be no guilt for having to put her in a care facility but that's normal for people who love their child or family member. They obviously do the best they can for her with the 24/7 care she needs. God bless🌸
This family is very special. Their love and devotion to their children including Elizabeth is amazing.
Thank you!
The sadness and grief in the parents, especially mom, is so flipping sad. They don’t deserve to live in perpetual sadness and grief.
@Elizabeth’s mother. You are not weak. Please don’t say that. You are super strong and amazing. You haven’t let your daughter down in the slightest.
Thank you!
This must have been so tough for the parents and the siblings as well...
She smiled after 20 years omg!
Thanks for sharing their story!
Im sure that smile was a beautiful ever lasting gift for the family
@@xx-el9gl yessss
Her smile when he was talking to her was everything. Wonderful to see how they interact with Elizabeth❤❤❤
Elizabeth really lit up with her sister....
I wish I could hug you sweet momma....
Thank you!
The mom is so incredibly strong, you can feel her pain. She’s so obviously caring and loving, she did everything right and none of this was in any way her fault.
I worked as a 1 on 1 care for a guy who had a brain injury he got in his 40's. His wife divorced him, his children never turned up ever, but his mum and dad visited until they couldn't due to their age. We then took him to visit them at their home. They were always guilty about having him in a home but they couldn't care for him the same as we could (picking him up physically, showering, feeding, keeping on top of medication.)
Sometimes you just need to rely on a specialist facility to care for these people, you can never do it at home.
This channel always helps me feel better
Bless you parents, I can't imagine what you went through.
This poor momma. Felt myself wanting to reach out and hug her the entire interview.
SBSK is a such an amazing loving channel. The host (his name escapes me) is one of the kindest men I've seen him treat every single person including family with love, respect and like any other person
My heart goes out to Elizabeth and her family. When her mother said that her mother told her it was her fault it brought me to tears. It was never your fault. There was nothing you could or should have done differently. We all do the best we can with what we know at the time. Wishing all the best for this incredible family.
Thank you!
I am going through one of the toughest times of my life right now, but boy does this video provide some perspective. God bless these wonderful parents and their beautiful child.