It's not easy to be a parent. Everyone knows that. But imagine how much harder it must be to be a parent when your child faces challenges that make life more difficult for them, and you.
Here parents of Reddit share whether or not they regret having their children -- children who are living with disabilities. The content is both shocking and all too human.
(Content edited for clarity).
The Regret Is Not Always For Yourself
“I have a 12 yr old with bipolar, ADHD, OCD, IED, CD, etc. So as mentally ill as it’s possible to be.
He’s spent multiple times in psychiatric hospitals, the medicines he takes make him feel really terrible, they’ve made him fat and his hair falls out. In order to make him compatible with society, it takes enough pills that he is a zombie. He has no personality and no enjoyment. You back off the pills and he then begins the rapid cycling. But for the few hours at a time he’s not cycling he’s amazing – funny, witty, compassionate, etc. Regardless I love him wholeheartedly.
Now… if I knew 13 years ago what I know now, I wouldn’t have had him. Not so much because it’s hard for me, but because every single day of his life is a struggle for him. He told me once he isn’t living, he’s existing. And he’s right.”
An Unexpected Source Of Gratitude
“I found out during my last pregnancy that my daughter had a severe form of Turner syndrome. She would be born with a heart defect, a kidney defect, and would’ve been intellectually disabled among a list of other things. I was against abortion and wanted to let life play out, so we decided to go through with the pregnancy despite numerous doctors warning us that our daughter would have a terribly tough life. She ended up stillborn at 25 weeks.
After seeing her, I felt absolutely ashamed – it was so abundantly clear that she was not built for this world. Had she survived, her every moment would’ve been suffering, all while waiting for transplants and procedures just so she could keep suffering. All of that, just so that I could feel better about my choice not to make a hard choice while I was pregnant.
I’m pregnant again now and have agreed with my husband that if the same thing happened again – we would abort.
It’s easy not to do something like have an abortion. But once that child is born, you (and the child) don’t get a choice. The medical system will do whatever it takes to keep them alive (including prolonging their suffering).
I should’ve stopped her suffering the moment I had the chance. That is the truly noble decision and is way less selfish than allowing my child to suffer just for my own pride. I am sooo thankful that she died!!!!”
It Makes You Stronger
“My son has a brain tumor. He’s had one since he was a baby and he’s now 9. It’s a slow growing one in his hypothalamus and as such can’t be removed. It caused him to not think he was hungry. He was starving himself as a baby. He’s had to have 3 rounds of chemotherapy. At 7, he started puberty. He has an implant similar to Norplant that keeps him from having puberty. It needs to be replaced every year.
Insurance is a nightmare.
Luckily, we live near one of the best children’s hospitals. They are amazing.
Sometimes, even after years, I’ll start crying at work. Sure he’s not on chemo now, but it feels like it’s best to let it go now instead of when he’s on chemo.
He’s so funny. After the pain of even touching anyone finally subsided and the Pavlovian response from touching subsided which took longer, he’s now also very loving and huggy.
He’ll still fly into rages at times, but more often he’ll hide if he doesn’t want to do something. I can’t punish him either. What can I do to him that he hasn’t already endured 1000x? Take away stuff? Sure, but this kid can sit there for an hour with nothing but his imagination. He does it in the MRI, of which he does every 3-6 months.
Withhold affection? In the past few months is the first he’s actually wanted to touch another human being for more than a couple seconds. Get mad at him? His little body has been wracked with pain so severe it has felt like everything is on fire. He’s had episodes where his limbs felt like steel and he can’t form words. What’s a little anger?
But overall, it has made e stronger better person. Problems seem so insignificant faced with this.
We have a special good night kiss/tee tee nose/fist bump/supernova explosion with sound effects every night. Every problem is swept away by this because all you have is this moment.”
Sometimes Life Wears You Down
“I regret having my 9-year-old with autism and oppositional defiance disorder every single day. She is very verbal and can be as sweet as a peach when she gets her way, but doing the hard work of parenting her correctly has been a nightmare.
She was an unwanted pregnancy when I was a dumb 20-year-old. I was in a lot of psych meds before I realized I was pregnant that I think messed her brain up. I had taken plan B perfectly like on the instructions the one time I had unprotected intercourse, I figured that would have been the end of that worry.
I didn’t realize I was pregnant until she was about 10 weeks gestation and immediately stopped taking my meds but alas, by the time I could get the money together for an abortion (the closest planned parenthood was a 7-hour drive so no-go there) the pregnancy was too far along. I wish I would have looked into adoption now.
Bio-dad has never been in the picture and the first five years were pretty rough but manageable since I had family help and a super supportive husband. Once she started kindergarten she was getting suspended from school constantly for stupid stuff like throwing an empty water bottle at the principal or hitting her teacher.
Her IEP was essentially worthless and I couldn’t hold down a job or go to school because I had no one to watch her every single week. At random times, I’d get called to take her home for 2-3 days at a time. So I did what I thought was best and we packed up and moved out of state with her to a much more supportive area with better schools.
We have been here for three years and it’s been terrible. Her professional supports – school, in-home therapist, the community have all been outstanding but I have no support for myself besides my husband and we are moving back to our home state in three weeks because I’m becoming too ill myself from all of this. She bites, kicks, screams, runs away into traffic, calls us grotesque names when she doesn’t get her way.
Wednesday I had to call the police because she refused to get into the car when it was time to go home and when I was finally able to literally drag her kicking/biting 70lb body into the car and close it she tried to bust the window open. She took an ambulance ride to the hospital and was a little angel for them when she calmed down and they said she wasn’t a threat and sent her home.
I am very bitter and resentful. I’ve done everything I can for her to give her a good life – she has in-home specialists come to teach her coping skills 5 hours every week, she is in one of the best school districts in Pennsylvania, I pay for acting and swimming classes for her but when I sit down and have to discipline her or make her do her homework, I get verbally and physically abused and there’s only so much one person can take when you give-give-give and get nothing in return. I feel guilty because her baby brother is neurotypical and we have a very strong bond and I love him more but I am becoming more apathetic every day to my toxic feelings towards my daughter.
Almost always I hope that when we move back home that she gets arrested and ends up in juvenile detention so she can see how good she has it at home with me and so I can get a break from her.”
It’s Not Always A Straightforward Question
“I have a son who was born with multiple problems, no official name for what it was, but chief among them is a congenital heart defect.
After he was born, we spent a month going back and forth to the NICU in the hospital. We had two other kids at home, so we couldn’t just move in like some other parents.
When he was released from the hospital, he came home on oxygen, a feeding tube, a physical therapy schedule, and so much medication that one of us was up with him every two hours. Nobody in the house was getting sleep. The dogs were relegated to living outside except when we were home because they decided the oxygen line looked like something to chew on.
Don’t feel bad for the dogs. Getting the baby out of the house during that time was such a chore that I hardly left anymore. Aside from his many doctors’ appointments all across town, I was pretty much just around to care for him.
My son died when he was three months old. I wasn’t home. Another friend dragged me out shopping. My husband knows infant CPR through his work. He tried. The ambulance arrived quickly, they tried. But in the end, well, there was just too much wrong with his little body.
I’m not sure I regret it. I waffle on that question. I remember days where I was so tired that I’d function only during feeding and medication times. But I also remember days where I was holding him and everything felt right like this is exactly where I’m supposed to be right now. I will say, the night after my son died, I slept a full 10 hours of deep, uninterrupted sleep for the first time in three months, and it was the best sleep I’ve ever gotten.”
It’s Hard And Overwhelming
“My son’s journey started at 3. He was kicked out of a private preschool. I just thought he needed extra help. Nope. Evaluations through school followed, he got a school diagnosis of ASD. His medical diagnosis of ASD, ADHD, Conduct disorder, Speech and Language Disorder, and unspecified emotional and behavior disorders followed. We are still trying to get him the right therapies.
During all of the above, my oldest daughter had her first psychotic break at 8 years old. I had been fighting with her school about the physical bullying that was occurring – they wouldn’t hear it. Well, she broke, ended up in the ER and then fast-tracked into emergent psychiatry care.
She was diagnosed with Schizophrenia, PTSD, MDD with psychotic features, and ADD. She spent almost this entire month in a mental hospital. She is so much different than before. So flat.
They are medically complicated and I love them, but this is so hard. I’m only 32. I’m overwhelmed and sometimes wish I didn’t have any children. But I do. So I will keep on keeping on.”
Waiting Is The Hardest Part
“My daughter was born with Zellweger’s Syndrome. It’s a severe rare genetic condition that we didn’t know we carried. What this means is my daughter will die before she is one. Maybe even before she is 6 months old. Because of her disorder, she basically has half a brain.
She can’t even feed like a normal baby… she has a tube in her stomach that we feed her through. Part of her disorder includes epilepsy. She will have anywhere from 5-20 seizures a day if her meds aren’t working anymore… my daughter is 9 weeks old and is on some of the most lethal pills out there just to keep her comfortable.
It’s so hard. We have nursing care 12 hours a day and she will never develop beyond a newborn. She is that mentally handicapped. She will never sit on her own, crawl, talk, or really do anything besides exist.
Is it hard… yes, every day is heartbreaking and a challenge. Waiting for the train to finally crash really sucks. Do I regret it? No. My daughter has made me the strongest person ever. I’m 24 years old. Having to think about DNRs and if we would intubate is not something a 24-year-old should have to think about. But she’s here to teach me something and make a difference. And she already has. Her doctors love her so much. She’s like a little celebrity.
We sing to her and talk to her and play music for her (she is blind but can hear and she does love music so much). We take her for walks because she loves the wind and birds. I know this because she can smile.
Would we do this again? Absolutely not. My husband and I want another child but we will be doing IVF with PGD to make sure this doesn’t happen again.
We didn’t know until she was born something was wrong. If I had known before we tried to conceive… we would’ve gone straight to IVF. Had I known when she was in the womb… we still would have had her. And that is just my personal choice.
I don’t regret her… but it’s really hard. Knowing your child could die at any moment sucks.”
It Can Take Time To Come Around
“My 9-year-old has autism, and we were told he would never even talk, let alone do all the social things other kids do. We had his birthday party yesterday, and while you’d think he’s only 5 or 6 when he talks, he TALKS. Not only that, he socializes. He’s awkward as anything about it and tends to just turn tail and wander off when he suddenly needs a break from everything and people, but he does interact.
When he was first diagnosed, I’ll admit that yes, I had some regret. I felt like an awful mother for it, too, then came to terms with the fact that my feelings were NORMAL and I needed to get used to him and everything required for his disability, including therapy 5 days a week, 45 min away in another city.
It took time, but now, no, I do not regret it or him. I’ve learned to take things as they come and cherish all of the milestones my son achieves. After all, they were things everyone said he’d never do!”
“It’s Too Hard For Me”
Africa Studio/Shutterstock
“There were times where I wanted to end my own life. There were more times where I sat down and wanted to trade it all for 5 minutes with my mom who died while I was in Afghanistan. Her legacy through me is a low functioning autistic child with less than 40 years to live due to the to onset of seizures.
Life isn’t fair. Life is hard. People say push on for your kids… but for me… it’s getting harder and harder. I won’t last like this very long.
I’m full of regret. I’m tired of the people with normal kids telling me what to do and what I’m doing is wrong. I’m tired of people with family telling me that 24/7 care for a child is not so hard. I’m tired of the annoying kids who say they have it so much harder because they have some nonsense self-diagnosed mental disorder telling me that autism is not so bad. I’m tired of myself of not being able to control the nightmares I have asleep and awake. It’s just me and her against the world. My parents are dead. I have no relatives. Wife’s family is dead. She has no relatives.
Wife had more courage than me and she already tried to kill herself.
I’m sorry I’m not like the other parents with a million support groups praising each other about milestones with a happy go lucky attitude. The clown suit I put on every day will get worn out some day.”
There Wasn’t Enough Time To Know
“My daughter with Ohtahara Syndrome would’ve faced a life of 24/7 dependent care, for however long she could’ve lived on a ventilator/feeding tube. This syndrome presents with no possibility of normal brain function from birth.
Upon hearing that, my husband and I decided to take her home from the NICU and let her pass with palliative care. We had no interest in keeping her body alive if there was no chance of consciousness. She lived a total of sixteen days.
Had we gotten a more ‘gray area’ diagnosis with at least some hope for some kind of life but severe disability, I wouldn’t have been able to do it. Just maintenance of the feeding tube was too much for me to handle emotionally. Especially since we have a healthy son. It would’ve torpedoed our lives and his.
I feel devastated to have lost her but also extremely grateful that her prognosis was so severe. The decision was basically made for us. Unfortunately, they did not find the causative gene so there’s nothing we can test for in future pregnancies. That’s the scariest thing.
My brain-dead daughter passed all of her prenatal screenings with flying colors and was even sent home from the hospital a healthy baby who passed her infant hearing test! We’re at a medically excellent institution. It just goes to show that rare genetic disorders can’t always be tested for or diagnosed accurately.”
“Not Regret But If I Had A Time Machine”
“I have a six-year-old with moderate to severe autism. I don’t regret having him, he can sometimes be very loving and sweet. But he always makes me question how good I am of a mother. When we first found out he was different I became very proactive to try and catch him up with his peers. I created materials we could not afford and took him out all the time to try and get him to have a normal childhood. But even before his brother came along I was already worn out. Having no help or respite it gets so wearing. We are constantly getting screamed at, having things thrown at us, being hit, being bitten, etc. I have had to worry that people will call child protective services on me because I had to drag him out of the lanes of traffic.
I don’t regret having him 95% of the time. But that 5% instantly makes me feel like a bad parent. He strains our family life and my marriage. If I had known this is how it would be I wouldn’t have had him.”
There’s Always Somebody Worse Off
“Some days I do, however, most days I don’t. I would rather that he was ‘normal’ as opposed to not existing at all. Sometimes I envy him, he doesn’t have a care in the world because he doesn’t have the mental capacity to do so. End of the day, the fact of the matter is, we can’t go back in time and make changes. We have to accept life.
My son will be 20 years old next year, he’s on the spectrum, has a type of dwarfism and epilepsy, unlike a lot of young adults he goes to respite with, he is very much easy to manage. He never throws a tantrum and therefore makes his caregivers work a little easier.
As they say ‘there is always somebody worse off than you.'”
It’s All About Balance
“I’m a father of an 11-year-old son on the spectrum with severe ADHD and IED.
He’s funny as anything and the most loving person on the planet. More than that, he’s his own person no matter what. Wearing boots with shorts? He doesn’t care about that because he wanted to wear both. Hat pulled down so far it makes his ears stick out? That’s how he likes it.
He’s honestly made me reevaluate my own social stigmas and hang-ups.
All of that said, he’s the reason we stopped at 2 kids.
My wife had severe depression during pregnancy and the ‘safe’ antidepressant that she was on is now linked to autism, so there’s that aspect of it, too.”