My daughter had multiple congenital birth defects that led to a lifetime of complications. With medically complex kids you fix one problem and create two more.
She lived 11 years. It was probably 9 years too long. She lived most of her life in hospitals. Literally months at a time. She would sometimes be home a week or two and then end up back in. I don’t think she ever spent more than two consecutive months out of the hospital in her entire life, until she went on palliative care.
She was more comfortable in the hospital than anywhere else. How sad is that. She was the “warrior” kid. That was her whole identity. Making cards for her nurses and decorating her medical equipment and being Tough with a capital T. That was all she had. Never went to school, not in any meaningful capacity. Never played a sport or an instrument. Never had any real friends to speak of. Never had the health to take up any real hobbies. Just an entire life made up of surgeries, shots and nurses and fucking medical equipment to decorate. I gave her a pathetic life.
There wasn’t a single intervention I wasn’t willing to put her through to buy more time. She was the happiest, most accepting kid I’ve ever met but in the last six months she was done. I refused to listen. She asked me over and over again if she could just “stop”. I would push until she shut up and went along with what I wanted. Why did I do that. She wanted to make me happy but she knew she was done. Selfish. She died incredibly agitated and upset. I think she was scared to let go because she knew what it was going to do to me. I wasn’t strong enough to let go. I’m so so sorry.
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I’m sorry for your loss OP. It sounds like you gave her an extra 9 years and you did it because you loved her and wanted her to have a shot at life.
You will kill yourself with guilt.. you are her mom.. what else could you have done but fight for her? Idk if I would do anything different than you if I were in your situation. I’m so very sorry you have had to go through this. Your daughter left knowing her mom loved her so much that she couldn’t let her go. Rip to your lovely daughter. I’m so sorry.
You’re a good person who did the best you knew how to at the time. As she passed, she loved you – even though it was hard at the end.
You can remember how she lived or how she died. You know how she wants to be remembered.
She would forgive you, so forgive yourself.
What you and her both went through is horrific and I cannot imagine the guilt that must gnaw at you.
Her pain is gone now and she suffers no more. Her life was one of suffering and that became your burden, as well.
There is something here for you to learn, something profound and healing. I urge you to work on forgiving yourself for the most normal animal instinct in the world: keeping our children alive.
You did your best and never gave up hope. She touched lives and the earth was better off for her being here, even if her life wasn’t traditional or very long.
She loved you and you loved her. That is a miracle and that is enough. Please work on forgiving yourself and continuing to love others.
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First off, I’m so sorry for your loss. Second, it’s easy for strangers on the internet to say let go of the guilt. But life isn’t that simple. You’re going to live with it every day for the rest of your life. That being said, you can’t let it define you or what your daughter meant to you. Celebrate her life, try to remember the good times you had together. I bet she was happy to have the extra time with you.
These decisions can feel impossible to make in the moment. She is a peace and you need to do the work necessary for you to be at peace too. You loved her, and fought for her and there’s alot of healthy kids in this world that don’t have that.
I don’t normally comment but just want to say what others have said, you’re her mother and mothers are god in the eyes of a child. She saw that you cared and loved her, she was made conscious of that either by rapid maturity through hardship or divine intervention. That love you blessed her with was never mistaken for malicious intent, don’t confuse it. Children are smarter than we give them credit and most people fail to comprehend that fact because of detachment from their own childhood. She loved you and she loved that you tried. No child ever would want a mother who didn’t try, you’re her blessing.
I’m not a parent; I don’t think I’m brave enough.
You both were dealt a horrible hand and you tried so hard. Your love for her is evident in what you’ve said.
Now it’s time for you to let go of the guilt and heal.
Nurse here. I know you are riddled with guilt and it hurts but you are not being fair to yourself. Her life was not only doctors nurses and medical equipment. Her life was love and compassion poured onto her from all angles, none more so than from you. Listen to your own description of how happy and vibrant she was. A light in all that darkness. That light burned bright because of you. Because you filled her cup up with the light of your love and that enabled her to shine bright. You are not the first nor will you be the last mother to regret holding on too tight at the end. Its in our nature. Its our job. Give yourself grace. She wouldn’t want you to feel like this. It would devastate her to know you felt anger and despair over loving her too much, too hard. You need some therapy to vent your feelings. You deserve a safe place to cry through these intense emotions and process your grief. You have turned on yourself as a coping mechanism because focusing on the agony of your loss is too hard right now, but it isn’t your fault and you don’t deserve to harm yourself mentally. You need to redirect your grief with the help of a professional. Big hugs to you mama. You’ll get through this.
I’m so sorry, there are no words to describe everything you and your daughter have been through. I’m sending you so much love and healing doing this unimaginable time. My mother was in your shoes almost 50 years ago, and she still feels riddled with guilt even now, half a century later. All I can tell you is what I try to tell her. You HAD to give it all you had. Every cell in your body is biologically, psychologically and emotionally wired to do what you did. And imagine if you hadn’t tried so hard, hadn’t tried everything? Would you be able to live with THAT guilt? You forever would have told yourself that you should have done more, should have tried that other medication, or treatment, or procedure. I know it’s so difficult to accept, but you had to pick between two impossible, losing paths, and I think you picked the one that 99% of mothers would have. Please go easy on yourself. ❤️
Your daughter got from point a to point b, well cared for and knowing she was loved deeply, thats the goal for all parents. She knew she was adored and that you were more committed than words could ever convey to her well being. So many souls will never know such comfort and so, I’m so proud of you for being such a great mother in such circumstances. You did what you could in a situation that would hurt even he strongest.
i hope that the afterife is real so you get to see her again
Please look into Courageous Parents Network. They support families that are making or have had to make end of life decisions. You are not alone in this feeling, but your daughter knows now, I believe, that you kept her with you because you love her.
And there’s no knowing if you would still fell this crushing guilt if you had let her go earlier.
But I’m so sorry and I hope you find peace.
Courageous Parents Network
Have mercy on yourself. Sometimes there are no good choices and we do the best we can. Sometimes death isn’t peaceful. I am wishing you all the best in healing and I am so sorry that life dealt you an impossible hand. Take care.
I have no words. This is truly tragic. Give yourself some grace, you did what you could with what you had in the name of love, and she knows this. Rest in Peace sweet angel. I am sending you hugs.
OP, you were an amazing parent, the perfect parent for her.
We as parents judge our self very harshly, we are literally our own worst enemies.
The guilt that comes with grief is out of this world, how ever you made he life special, you were there for her a she loved you.
Please forgive yourself, your daughter wouldn’t even hesitate to accept your apology she would look at you All confused and say “what for?” Then she would have hugged you and gone about her day knowing you were always on her side.
It’s easy to look back at the end of the journey and say you made the wrong choice. But you are looking back with the entirety of the journey in view and with the benefit of hindsight. Not at each moment, at each time the doctors suggested to try something else, each day when your focus was on juggling care and appointments and medication and what needed to happen next and with the entire weight of fear for your child’s life bearing down on you. The decisions you think you ought to have made then were not the decisions you were able to make when in the thick of things.
So give yourself some grace. You wanted your baby to live. We are hard wired to do everything and anything to care for our children. I would give my life for my little boy, without hesitation. You did your best. I’m so sorry your child didn’t have the life you would have wanted for her, but I’m sure you loved her each and every day.
It sounds like you took good care of her. Maybe she wasn’t like many others but you said it yourself. She was happy.
You did what you thought was best at the time. Your efforts came from a good place, not maliciousness. Most importantly you gave her years and years and years of love. That is a very good mom.
Maybe you wish she had sports, or school, or other hobbies… But you said yourself, she was happy. She made her nurses happy, they probably made her happy, and I’m sure you were a big source of her happiness as well.
She didn’t have a typical life, no. You and her team gave her happy years. Be kind to yourself
As a parent, I completely understand wanting to try everything. to save your child. If she were an adult, maybe it would be different, as far as her choices. As an adult, you would reasonably feel that a kid, especially your own, shouldn’t die that young. I’m sorry for your loss, and a I feel for your grief. You were just trying to be the energy she didn’t have to keep going from the sounds of it. Maybe join an advocacy group or even therapy to help with what you’re feeling. I don’t see that you did anything wrong; it’s a hard situation to be in. If she had the choice to keep you around had she had the choice and you were in that situation, she’d likely have taken it to have more time. Most people try for more time. I hope you find peace.
I hear the depth of your pain, and I want you to know that your love for your daughter is unmistakable. Every decision you made came from a place of fierce devotion—not selfishness, but an overwhelming desire to hold onto her for as long as possible. That is a love so powerful it defies reason, and it is also a love that carries immense grief when faced with impossible choices.
You were her advocate, her protector, in a world that gave her no easy paths. The medical system is built on intervention, on fighting—it doesn’t always teach us how to recognize when the fight becomes its own kind of suffering. You were navigating a labyrinth with no clear exits, and you did so while carrying the weight of her life in your hands. That is an unbearable responsibility, and no parent should have to bear it alone.
Your daughter knew love because of you. Even in her suffering, she had you—someone who cared so deeply that the thought of letting go felt like abandonment. She didn’t just decorate her medical equipment; she made beauty in the places where most people would only see despair. That resilience, that light, came from her, but it was nurtured by you.
The guilt you feel now is part of the grief, but it is not the whole truth. The truth is, there was no “right” choice—only impossible ones. You did what you believed was best at the time, with the knowledge and strength you had. And when she asked to stop, it wasn’t rejection—it was trust. She trusted you with her pain, just as she trusted you with her love.
You are not a failure. You are a parent who loved beyond measure, who fought when fighting was all you knew how to do. Now, the hardest fight is learning to forgive yourself. She would not want you to drown in this guilt. She would want you to remember the love, the cards, the moments of connection—no matter how fleeting.
Be gentle with yourself. You deserve that mercy.
I would do the same thing if I were you. I am unapologetically selfish for the benefit of my child. Please know that your little girl knew that you loved her fiercely. That was a big comfort for her. It should be great comfort for you as well. May her memory bring you peace and comfort, rather than regret from now on.
It was a year ago that I lost my son due to congenital birth defects. He was just an infant, a baby that I barely remember holding. The pain, the suffering, it never seems to go away. It just lingers with you, long after they have passed. There’s nothing you can really do, but to live your life. It’s easier said than done, I know. All the support, it can’t help you grieve. Nothing can really. All you have is your memories. All the time that you had with them. Whether it was 11 years like you or 3 months like me, no one can take that time spent away from you.
I wish I could give you a giant hug and tell you that you did your best under impossible circumstances. I’m so sorry for your loss. She knows how much you love her.
Your post just made me cry and I cannot say that I understand because I don’t but I have a daughter with autistic and I find myself so worried and I feel immense feelings of guilt trying to give her a life of quality but all I can do is love on her and make her feel safe. God bless you, you are a wonderful mother and NO ONE can take that from you.
When we were in ICU at children’s, we met an old couple who had a 17yr old who couldn’t do anything on his own. Blind, deaf, severely mentally challenged, a lot of health issues, never ate, was in pain,couldn’t walk, only moaned. His dad stated it was no life to live. No joy. He said they did a huge disservice not allowing him to pass gently as an infant. He also worried about who would take care of his son if they pass before him. It was extremely hard to care for him. There was no quality of life. This always resonated with us when we had to make the hard decisions. You have her love, she had a nice quality of life. Don’t beat yourself up over loving your child. May you find peace in your memories.
She may not have had many of things but she had your love. I’m sorry for your pain and loss.
You faced something most people couldn’t imagine for 11 years and raised a kind, resilient and caring daughter in the face of insurmountable challenges. No parent ever gets to know what the right call is and for most of us it’s just navigating screen time and how many snacks they can eat. The decisions you had to make were impossible. You would feel just as awful had you stopped pushing any sooner, wondering if a better day was around the corner.
I’m so sorry you have had to have this experience but you deserve to feel proud of yourself for doing everything you could x
Some of us, under the same circumstances, would have done the same as you. You wanted to give her a shot at life, and you had hope.
As her mother it was your job to leave no stone unturned. It sounds like you did an amazing job. Even in her passing, you wish it could have been done better. This is not your fault, you do not pick your child’s date of birth, nor death. I hope you find some peace soon, as she has now.
I lost 2 babies before they were even actual babies (6-8 weeks pregnant.) I would have done ANYTHING just to meet them. I would have done this and more just to be their mom for one day. I truly believe you did what any loving mother would have done.
OP – I suspect you were surrounded by Medical staff that helped you stay on this path. I doubt seriously that anyone ever brought up how your daughter’s end would be if you continued on the path you were on. As a Retired physician I wouldc say part of this is the Medical establishment.. .If you want to feel angry then feel angry about these people letting you down. Do not blame yourself–you were caught up in the American Health System’s devotion to ” LIFE AT ANY COST’. We push to keep people alive when we should let them go. I had a patient who was a brain dead, lifeless, initially un- emotional “zombie” ( Family’s words) because the hospital staff coded him three times in a row. It affected the front part of his brain. The Family was so angry and upset that the ICU staff did that to their dad and then handed his shell over to the family. They told me repeatedly that they wish the ICU staff had let him die.. As he aged he got more and more hostile…… Please seek out a therapist you like OP. Your daughter fought so hard because she really loved you. I suspect she would show you great grace if you could speak to her now. As a doctor please accept my apology for not doing more to fight this system when I was part of it .I hope you can find peace. As others here are saying you were in an impossible situation- doing the best that you could. I pray that you find peace .
I openly cried reading your post. I think you did what you thought was best, what was probably offered to you for her best. She loved you. All other words I could string together feels hollow and nowhere near what it would take to make you feel less heavy. My deepest sincerest apologies to you at this time. Life really can be painful. Remember the good times with your warrior.
Sweet momma, let the guilt go. She loved you dearly and to know you’re punishing yourself would do the real damage. You’ve been thru enough. It’s ok to forgive yourself. I went thru a similar situation with my parents, and my mother held onto her guilt for a long time and I hated to see it. She would forgive you. Her soul is free, I’m sure she would want the same for you.
You are her mom. You aren’t bad for wanting her to live, she is your child. Please seek counseling, you deserve to heal- even if you don’t think you do.
She knows you loved her that’s all you need to remember
My heart goes out to you. I hope you find peace someday. I’ll be thinking of you from time to time.
I’m a parent to a special needs child. We were once told she would never come home from the hospital. I have chosen to put my daughter through elective surgeries wondering if I was doing the right thing.
I’m saying this in the hope that you’ll hear me. I won’t claim to understand your journey, but I think I might empathize a bit more than most.
It is abundantly clear that every decision you made was out of love.
None of us ever know exactly what we are doing. We all try our best with what we have.
Try not to blame yourself for decisions you made out of love. You’ve already had to carry enough, don’t add that to the burden.
You know your daughter best. Do you think she would want you to carry this? Could you see a world where you honor her memory by finding a way to let it go?
It won’t be easy. You know that. But I bet you can do it if you decide to.
Know that an internet stranger sees you, hurts for you, and will be thinking of you. PM me anytime.
You love her. Don’t beat yourself up for trying to do what you felt was right at the time.
OP..can I recommend a book by Claire Mackintosh – ‘After the end?’
The author went through something similar like you and while the book is fictional it deals with a case like this with all possibilities mapped out. Might be helpful.
I’m sending you love and respect. You went through something unimaginable and yet your love shines through in every word.
You gave it your all, and that is all a kid could ask for.
And afterwards you might have regrets of some choices, but try to focus on the many good choices. It is easy to dwell on the negatives to forget the positives.
You decided to keep fighting, you were there to support her, you gave her a life filled with love and caring people. There are plenty of people who would have called it quits or would have silently waited for the end to come, but you wanted to keep fighting till the better end.
And don’t feel bad about not being able to let her go when she wanted to go. Once again, you are her parent and you want the best for your kid. And it can happen that what you think is best and what the kid thinks is best are two different things. I’m quite sure you had disagreements with your parents over things where they would refuse to hear your side. I sure had those moments, and I don’t hold them against my parents as I know they wanted the best. They just had a different vision of what was the best.
And I’m sure your daughter would say the same if she could speak to you about those things later on in life. She wouldn’t hold it against you that you wanted to safe her no matter what. It’s just very sad that she had to go while that disagreement was still storming in your relationship, I get it’s hard to find closure there without being able to talk about it, but remember it was just a stormy day in your relationship. There were plenty of days where you brought her love, sunshine, happiness and hope. And I’m sure she would have felt the same.
I wish you lots of strength, losing your kid must be really hard. So please don’t make it any harder on yourself than it already is. And consider talking about this with a professional, this is a very traumatic experience and looking for help to navigate your emotions around it is 100% okay.
I can’t imagine what you’ve been through and I don’t think there was ever any right way. You fought and gave her everything day you could and if you hadn’t you’d be completely torn up in a different way. I am so so sorry and I’m filled with grief thinking of you and your daughter
OP you have a very sad story. You had to be a parent with all the responsibilities that come with protecting your child, and they had multiple birth defects which led to all these complications. You stood by them and protected them from harm their whole life and gave them more attention than many kids will ever receive. You had to watch your child face fragility which is the scariest thing for a parent. You were there day in, day out in a support capacity without peace, for them. You had to bear doctors finding new things and suggesting new treatments which is exhausting. Remember to rest OP, it is time well spent.
OP you also have a beautiful story. A story of love and closeness, a story that makes you feel all fuzzy because she was a good kid with a personality and style of her own. I’m sure she was the little boss around those hospitals, putting smiles on people’s faces, giving them just as much as she was receiving in her own way. The people surrounding that kind of aura and strength will forever be happier in their lives and jobs for seeing the beauty in the practice and in life. Your child was able to put smiles and make people feel the way adults in their whole lifetime will never make others feel. That’s a special kid and a strong family right there, I cheers to you both tonight. She got that strength from you OP, her body was never yours to keep for life but all those beautiful memories are. Thanks for telling us about her.
You loved her and she knows that. So does whoever is watching. Much love to you. You did the right thing.
We all want our kids to live. We want the best. We want to fight for them and want them to fight as well. I can’t imagine what it was like. Is it selfish for you to want her to live? No. You loved her. You gave her everything you could. You gave her all your love and that’s what matters. I’m so sorry for your loss. It sounds like she was an amazing kid who truly touched everyone that was around her. Release the guilt. She would not have wanted that for you. The battle is over. Mourn her. Honor her memory and let go of the guilt. She loved you.
I’m so sorry life was this cruel with both of you, don’t beat yourself up, you did your best. From this post what I can say for sure is that it sounds like she was incredibly loved and that she loved you back just as much
I cried reading this. I also have a daughter and I would have done the same if I were you too. It’s because we love them. They are our babies and our happiness. It’s not your fault for just wanting to be with the most precious thing for longer. I truly hope you can find peace and cherish those moments you had with her. I hope her passing does not come with guilt and sadness but relief that you got to spend and make great memories with her
I don’t think your daughter would want you to beat yourself up like this. She would want you to be happy and live the life she wanted to.
I hope you find peace as best you can because your daughter has. I’m sure that’s what she would want for you.
It’s not your fault
I’m sorry for your loss, my dear. My prayers are to you and your family.
I know your daughter is beautifully at peace in heaven because that’s where my daughter is. And I know that theyre both safe and at peace now.
Please dont let the guilt eat you up. As I did. I’ve wasted so many years blaming myself for my daughter passing. Time I should have spent celebrating her life, instead of focusing on her death.
I used to think about how my daughter never was able to experience being pushed on a swing. Or feeling the sand between her toes, and the waves glide onto the shore grazing her feet. She never was able to run through the grass. Or to play tag. She never made any friends. So yes I know that feeling of a mother’s guilt all too well.
But you’ve also provided your own answer. Its not about the things we do in our life that makes our life worth living. Some people travel the world, and go on adventures. They jump out of a plane or go bungee jumping off a bridge. And they call that “living their life to the fullest.”
But I’ve been around death a lot. All the loved ones I’ve lost. Losing my daughter. And being in the healthcare field, I’ve lost a lot of great friends that I’ve made who came to me as a patient. I can promise you, 100%. When they’re near death, they dont reminisce about the adventures. They reminisce about the people.
The nurses who cared for your daughter, they hold your daughters memory in their hearts. Did you know that? I have patients who have passed a decade ago, that I still buy their favorite cake on their birthday, to celebrate their memory always. They’ve made an impact on my life while they were my patient. And I know that those who knew your daughter, do the same for her. They’ll remember her beautiful soul for the rest of their lives!
When youre done mourning, my dear, start to celebrate your daughter. Buy her favorite cake on her birthday every year. Buy things that you know she’d love. This year for my daughters birthday, I bought a beautiful ballerina diamond painting canvas. I finished it on her birthday. And i keep it next to her picture now.
You did what every mother would do in your situation. I know that, because its exactly what I did too.
Me being someone who always think of the kids, this is a post I have no comments for.
Oh my. I’m a dad and grandad. I have tears.
I worked in hospitals. My wife was a NICU nurse, our daughter is a nurse, married to a doctor. All of us know that there are many things worse than death.
That said, what you did is completely understandable because we aren’t taught that death isn’t always the enemy. Instead, we are taught that life at all costs is what’s important. I’m sorry you had to learn it the way you did.
Thank you for sharing this. It couldn’t have been easy.
You did the best you could do at the time in each moment.
It’s hard in the moment to distinguish between what you’re doing in a loved one’s best interest and what you’re doing to hold onto them as long as you can and to extend their life as long as you can.
Keeping them alive as long as possible is a deeply engrained instinct. ‘Well, of course we should do everything we can to save her. How could we not? We’re her parents. We have to save her.’
Odds are good that, even in her frustration and sometimes disagreement with your decisions, she knew your heart was in the right place. You’re human, and you did the best you had the capacity to do in the moment. You’d be second-guessing yourself if you’d made different decisions. You were stuck with no good options. As a friend once noted, there’s no good way to lose a child.
With hindsight, you’ve learned lessons I hope you never have to use. But, whether with children or parents, people can end up confronted with quality of life versus quantity / duration of life decisions for loved ones more than once. And, those of us reading your confession are learning from you.
Confessing is good. I hope it helps you let go of the guilt you’re feeling. You’ve been through enough.
I think there is no right or wrong answer and you have every right to feel the way you do. I am so sorry you lost your baby and I am so sorry the pain that you are having to endure. You didn’t know what the outcome would ever be and just did what you knew best. You were blessed to have each other.
https://www.scarymommy.com/melancolie-sculpture-grief —-wouldn’t let me just post the pic
OP, I will say this. It’s much better to regret doing too much than doing too little and constantly thinking about whether you could have done more, what you could have done, etc etc. You did the one thing that is programmed into great moms to do: protect their children and love them. I hope you learn to forgive yourself for being a loving and concerned mother— that is as human as it gets. Much love to you.
I’m so sorry for your loss. I hope you both find peace now.
I’m sorry you lost her baby but I hope she’s found the peace she always deserved. This is such a heartbreaking story.
Reading this whole thread has brought back so much sadness. My niece lived a life in and out of the hospital. Watching what it did to my brother and his now ex-wife (too much strain on the marriage) was heart breaking because there was no decision they could make that wasn’t going to feel like the wrong decision after the fact. If they didn’t fight to keep her alive, when she eventually passed they would have been eaten up by guilt for not trying to save their daughter but by trying everything to keep her alive, she suffered, especially at the end. She almost made it 8 years old. She was severely disabled, blind, suffered from seizures, never walked, and never ate. But what she did do was smile- a lot. OP, you did what every loving parent would do. Please try to give yourself some grace. If you hadn’t fought so hard to keep her alive, the grief and the guilt would’ve destroyed you. Just remember, she knew how much you loved her. That alone is a gift some children never receive. Wishing you peace and a respite from the grief.
I think you can live with yourself knowing you did everything for her, and took every opportunity to make her well that you knew how to take. I don’t think you would have been able to live with yourself if you didn’t give her That chance. If you let fate take its course.
She didn’t have a pathetic life. That child left this world knowing only unconditional love. You sound like the type of person who would have given that. It’s beautiful in its own right, even if it is extremely painful for those left behind.
It might be hard for you to process, knowing the context of everything. But your child was innocent. I’m sure, even through all that hardship, you still got to see her smile.
I’m so sorry to hear what you’ve both been through. I just want to assure you that the important things for kids isn’t playing an instrument it’s being loved! And if you were so emotionally intimate you were loved as fiercely as she could. I wasn’t sick as a child but from 5th grade onward my life has been similar. And I just wanted someone to be there and love me. I was adopted and they saw hospital stays as free childcare and though I’d beg terrified they refused to spend the night. Once at 16 I was septic and my mother insisted I just wanted attention and was fine and the only reason my doctor said to go straight to the hospital was because I called them (logic? Not even hey you lied to them) and my mom tried to get me to take the bus with two stops with a fever of 105 and projectile vomiting. I convinced my Dad to help (and he and I still talk but I’ve stopped with my mom as she’s been open that she never wanted kids really) but growing up is so frustrating because it was a lonely scary time and I was often blamed for causing problems.I was ready to go ya know since life was miserable and made a few attempts. It wasn’t until I got away from all that and have a relationship with my partner that is safe and I’m loved unconditionally and I did a lol of therapy I realized how damaging she was. I cannot imagine the decisions you had to make the closest would be when we had a quite young foster child who was alarmingly self violent and eventually had to get picked up by the police he looks like he’s six tiny and the police had to call out the ambulance to chemically restaurant him. We’d wanted the ambulance in the first place but like yeah I went into DKA 12 hours after and ended up in the ICU of the same hospital my poor partner. I have had so much guilt about that situation and I know objectively that in the end love just wasn’t enough. If it was you absolutely would have saved your baby girl. I don’t think she’d want you to be tearing yourself apart over her memory either.
Wellp. This fucked my heart into shreds.
Shhhh, settle down, it’s ok. You did what compassionate people do. In this situation if you had let her go earlier you might be beating yourself up for not doing more to keep her alive. Hard situation to know what’s right, but it’s done so let it be.
Forgive yourself. She did.
This pisses me off.
As a parent I am so sorry. That’s all I can say, but you fought to be her parent just like she fought for her life as your daughter. God bless you.
It’s seems crazy looking back, but at the time, it seems like the right thing to do, right? You did the right thing at the right time. You did, I did, we did. You are not alone.
I am so sorry for your loss. May your daughter rest in peace and may you find peace. Hold on to the love you both had for another.
You’ve got me tearing up. I’m sure no words can truly take away the ache of despair you’re in, but I just have to echo what others have said here—your love for your child was so great, so brilliantly strong, that you refused to give up on her. Try to give yourself the grace and mercy you deserve. There is hope at the hospital, and you wanted to give her that hope. Your goal at the hospital was to get her better, to do everything in your power to fight for her life. You are not a selfish person— you are an amazing parent that did your absolute best to save your girl. My deepest condolences for your loss. Your daughter sounds like a wonderful person 💔
Oh my dear. My heart just breaks for you both. I hope you know she would only wish for you to find peace now. I lost a baby, late in pregnancy. It destroyed me for a long time. There was a point where I realized I HAD to decide to survive the loss, and what’s more that my son would want me to not blame myself for the choices I made and would want me to find a way through. I honestly believe in therapy and just as much self forgiveness as we can muster. It is counter intuitive to EVERYTHING in a Mom’s DNA to let go of a child. You did what you thought was right and sure, in a bit of what you think was selfishness held on a little too long. But I can guarantee that any of us would likely have done the same. Try to apply the same grace to yourself as what you would tell another parent in your shoes. ((Hugs)) mama. I’m so sorry for your loss.
This is one of the most devastating posts I have read online, ever.
I am so sorry you had to go through this. You did the very best you could presented with the information you had available.
Your daughter is someplace else right now. She knows your pain, she knows your decisions, she knows your guilt, but most importantly…she knows your love. And she forgives you, just like any child in her position would.
Cut yourself some slack. Don’t give up hope for your future.
Hey OP, you did what every parent instinctually does. If you had “quit” sooner and gave up, you would still be second guessing yourself. What if this worked or that worked.
Whatever choice you made, was the right choice. You are a good parent. I’m so sorry about your daughter. She sounds like she was truly amazing. If you’re religious, I hope you take solace that she is with her creator.
Let go of any guilt or doubt you have, and just remember the laughs you shared with her.
I wish you the best of luck.
As a parent you did your very best You had the gift of her life and love for each other. As parents who have had a child die, we are always second guessing ourselves with “What ifs”. What if I had done this or that etc. Hindsight is always 20/20. Let the guilt you are feeling go. You did the best you knew how to care for her. May your memories of her bring you comfort.🩷
I don’t have any words to give except that I love you and I am so sorry. Please, don’t destroy your soul with guilt. She wouldn’t want that, and it’s the light that shines in you that will be a beacon of her through you to others. Give it time momma 🩷it’ll always hurt because you’ll always love her, but day by day you will learn how to carry that pain.
First responder here, could I ask you a favor? Could you give yourself the same type of grace and compassion you’d give your daughter or to another mother in your shoes?
You’re not evil, you’re not wrong, you’re not less of a mother/woman, you’re not selfish, and you’re not heartless or unloving.
You say your daughter was amazing? They get that way not just because of who raised them but who continues to raise them until it’s time. I wish there were more parents who love their children as fiercely as you do/did. I wish I could see more of that and less of the ones who don’t care or hell the ones who cause their child pain or worse.
Children start out loving and kind and it is the parents who keep them that way (or don’t) past a certain age (usually 7-8 is when they start learning other potentially negative behaviors in regard to others). Your beautiful little girl remained loving, kind, compassionate and all these other beautiful things because of the BEAUTIFULLY AMAZING mother she has/had!
You did not fail her, you love/ed her. There is no clear cut way to do life or death. You gave her the best you could give her and as a result she gave you the best she could give you and the way you speak of her is evidence that you were an amazing mother to your baby.
You did the absolute best you could with what you had. Please don’t take that away from yourself or your beautiful girl.
You got to see her grow and change physically, emotionally, characteristically, and mentally from infant, to baby, to toddler, to kid, to preteen through the years that you did get to have her and that deserves to be celebrated.
You gave her the greatest gift possible – a mother who cared about her more than anything, even beyond all reason. You weren’t being selfish, you were fighting for your kid.
You are allowed to be as sad as you want for as long as you want – few can imagine what you have gone through. You are not allowed to talk shit about how you handled that tragic experience. remember if she never knew anything else then she wasn’t nearly as sad about what she missed out on as you are.
Wow. Just reading your story makes me love your kid. I’m going to cherish my kids even more. You’re a lesson for everyone who hears your story to fight against the pain and find joy where you can.
I am so sorry for your loss.
My husband and I took the opposite decision than you and I spent years riddled with guilt. My son was born with a brain tumor incompatible with life. He couldn’t swallow, barely breathing on his own. We decided for palliative care and he passed after 4 long, yet short days. I then spent years wondering if I should have done the shunt surgery, the breathing and feeding tube, just to have him with us a few more months, maybe a year.
People with medical complex children are given impossible choices for a test we did not study. There’s no article about infant palliative care in any of the baby apps, we do the best we can with as little information we’re given.
Be kind to yourself, remember the good moments with your daughter and try to bury the rest.
My heart goes out to your soul, I really hope you find peace and honor your little angel by living the life she would’ve loved you to have, she fought for your happiness, live to show her that she doesn’t need to worry about you anymore and she’ll be at peace from wherever she is now.
Her life was better because you were in it.
I really wish I had more to say, I’ve been crying ever since I saw this post. This is such an incredibly huge weight to carry, I can’t even begin to imagine it. If I could give all the love in my heart to yours I would, and I wish that I could.
You did your absolute best. And I know you wish you had done it different and hindsight is a b*tch sometimes. You made moves that were based on the fear of losing your love, someone you held so dear and who was literally a part of you. I don’t think there is a loss more devastating than that of your own child. Of course you held on. Of course you did everything you possibly could to give her the chances you could. Of course you didn’t want to give in and let her quit on you. Of course. No one in their right mind would think otherwise. Whats done is done, and she would not have held on for you in vajn, please trust that. You deserve to forgive yourself for what you didn’t know, and what your heart was too far in grief to see. This isn’t just about the last several months of grief, or the grief that followed. It’s the years of watching your baby keep fighting for life, wanting to see her thrive and knowing that eventually it may catch up. That is so deeply heavy, and I am just so sorry. You deserve to find peace with this. You really do.
A therapist once told me that “you are the same person now, as you were then, just with clarity that passing time brings”. The point is you weren’t a bad or selfish or different person 9 years ago when you were making the choice to seek care for your daughter. You were a parent, who loved their daughter fiercely, and made the decisions they thought were best with the knowledge they had at the time. You couldn’t yet see the end. You didn’t know how it would end. There was hope. Hope keeps us pushing. There was always a next step, a next procedure, another chance, something to be doing.
But now the hope is gone. But the love remains. With no place to go. And that’s grief. And with grief comes anger. But you have no receptacle for the anger that makes any sense, so it goes inward. It’s natural, but don’t linger here. This is where you can get stuck.
Be kind to your younger self. They didn’t have the benefit of seeing the whole journey like you do now. You aren’t a bad or selfish person for wanting your daughter’s journey to be longer than what she was given. And I’m willing to bet, that between the surgeries, shots, and “fucking medical equipment” there were moments of happiness, silliness, and obviously so, so much love.
I don’t hold any hard beliefs about what comes after this world. But I do believe, without a shadow of a doubt, that your daughter holds no resentment towards you, or your choices.
Cherish her memory. Honor her story. Tonight I add you in my prayers that peace finds you and your family.
A mother can’t less go.
I know we’re supposed to be strong. But that’s the one thing we can’t do.
We can’t let go of our children. They are our soul pieces and even if our hands let go, our souls can’t.
Even if she died agitated and upset, the last moments don’t matter more than all the rest. They all weigh the same and from what you’ve said, the good seemed to have to far out weighted the bad.
And she got to live and be loved and you got to love her and it doesn’t matter if it was for one year or a thousand years, it happened and the love was there and still is there in your heart.
I’m so sorry you and your daughter had to go through this, and that you have to continue thought this.
@A@
Damn, I’m actually tearing up. That’s a shitty situation, on all ends I’m so so sorry. Being a parent isn’t an easy job. Things won’t ever be cut and dry. One of the biggest things a parent can do for their child is love them. You sound like you did a pretty good job of that.
Please forgive yourself. Your daughter forgives you too. You tried your best and did what any parent would do for a child they created and loved. You only wanted to make things better and I think thats more than okay. I am so sorry you and your daughter went through this. She is watching over you!
You were in a shit situation and you didn’t know how it would go.