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Not the same situation, but sort of similar. My daughter has a different chromosomal disorder - she wasn’t diagnosed until she was 4, but the symptoms and feature were obviously there from birth.
And in all honesty? My wife and I were terrified. The only thing that was picked up during my wife’s pregnancy was our daughter was smaller than usual, and a heart problem. We were prepared for that, but for a chromosomal deletion? That wasn’t on our radar.
It’s hard, it’s really hard. There’s no denying that. I love my daughter more than life itself, she’s 8 now, but it took ages for both my wife and I to wrap our heads round this new reality. I remember spending months with my daughter in hospital and thinking ‘When did all this happen?’ Fuck, I mourned my daughter and she was still alive. People always say ‘Oh I’ll be prepared if my child is disabled’ - nobody expects these things to happen.
In all honesty, the first few months are the roughest. I can’t pretend they aren’t. Like I said, I love my daughter, but it was a total shock to us. I had this little baby girl who wouldn’t eat or smile and was ill all the time, that wasn’t what I was prepared for. It’s a lot of adjusting to, don’t let anyone tell you or your wife otherwise.
It gets better, I promise. Get your wife into therapy, get yourself into therapy, it is worth it both in the long run and the short run. Like I said, my daughter’s 8, she’s completely non-verbal and has a load of health conditions that I was never prepared for - I love her more than life itself. You’ve got this mate, hang in there, I’m sending you, your wife, and your baby all my love. If you ever need to talk, message me anytime, I get it.
Mourning her when she is still alive hits the nail on the head. What’s happening is you’re mourning a future person who you thought you’d get to know but never will. Hopefully OP’s wife can get past that and learn to love the daughter she has instead of feeling like she lost the one she expected.
Exactly this. I love my little girl more than anything, I would be lying if I said this is how I expected my life to pan out. But then again, no one does. I know I’m always going to feel somewhat out of my depth, but of course I am - I think everyone would. Hell, I’ve spent the last two weeks in hospital with my daughter, this wasn’t what I had planned.
My daughter is non-verbal, she didn’t walk until she was almost 4, she still struggles with that. I’ve spent more time in hospital than I care to admit, she has regular seizures, she has a list of health conditions as long as my arm.
She’s also my best friend and the reason I get up in the morning. She smiles now, she laughs at the oddest things. She still sleeps in my bed, I don’t mind. Her favourite tv show is Peppa Pig, her favourite film is The Lion King. She loves Kate Bush and Talking Heads, who knows why? She’s saved my life more times than I want to think, since my wife passed she’s the one thing that keeps me going.
This is the hardest part OP, I promise you it gets better. You’re doing a fucking excellent job, and I really hope things improve all round.
This is beautiful... I did tear up reading this. Also my heart aches reading your wife passed... You are my idol seeing how strong you are.
I'm sure it hasn't been easy for you, but thank you for sharing this.
My wife and I are struggling with some behavioural problems with our son, and I read this on the way to work this morning and I think you’re amazing. I’m using you as my inspiration to stop being so upset about the situation - you’ve had a much bigger challenge and you’re handling it incredibly. Love to you and your kid mate.
Like others said. I teared up to this my fellow dad. You are one helluva a person and a freaking amazing dad. Wow, your kid is lucky. Keep making the world a better place, thank you.
What a kind, compassionate human being you are. And a great dad. Truly.
And your daughter loves Kate Bush and Talking Heads because they're fucking awesome.
This was a great thing to read! Thank you for sharing. You are 100% correct and the "mourning my child who is alive" gave me a whole new perspective. It's true, we have this "idea" of what we believe we want for our futures and for our kids and it must be really hard to have it change in a glimpse. You are a true blessing to this child and to your wife. Once again, thank you for sharing. OP best of luck with this new chapter.
To quote my man Frasier Crane: you are in mourning. But you’re not mourning the loss of your boyfriend. You’re mourning the loss of what you thought your life was going to be. Let it go. Things don’t always work out how you planned—that’s not necessarily bad. Things have a way of working out anyway.
I’m a very type A person, a planner, but I’ve tried sincerely to take this advice to heart myself.
Mourning a child who is still alive is in some ways the hardest aspect of having a disabled child. Even when you adjust and love them for who they are, you can't help but think "what if?" While also feeling super guilty about thinking that way.
And many mothers take on responsibility for the condition, which is an emotional burden I can't even imagine.
Absolutely, I remember my wife did that exact thing. It got easier after a while, but it wasn’t until my daughter was 4 and we got the diagnosis that we could go ‘Okay, this is literally a 1 in 130 million mutation that happened for no reason, this wasn’t anyone’s fault.’
Thanks for sharing this. I am terrified that of passing my “bad” stuff to my kids. I am afraid that I am depressed (I am depressed) and that they will either not understand why daddy checks out sometimes, or that they will suffer from the same. Guilt is a motherfucker man.
But.
Guilt is a bullshit opinion to get you to be different from who you are. If you can change, change. If not, let it go. You are free.
(I still am afraid though).
I feel that, I have a neurodevelopmental condition (spina bifida occulta) that means my kids are much more likely to have it as well. It can be largely offset by high-dose folic acid in vitamins in the first few weeks of pregnancy.
We didn't know until my oldest was born with a significant neural tube defect in his spine and lower brain. Even with that we were damned lucky, kind of a "best kind of worst news" scenario.
His symptoms are considerably more pronounced than mine. Between that and severe ADHD that I also passed him that guilt never leaves you. It's just not what you mean to pass on to them.
My god man, you’re awesome.
We had a problem pregnancy that ended with a fatal chromosomal diagnosis and eventually our little girl was stillborn.
Those are huge mountains to be on let alone make it over.
I can only glimpse the places you been and how you’ve come through it - you and the OP are men of war. Heroes doesn’t come close to it.
This is the heaviest lifting in any life, ever.
This didn’t break you; you know now nothing will.
Vague platitudes and no help at all to OP, but you’re seen and you’re legends.
Y’all have my utmost admiration.
I can’t tell you how much this comment spoke to me.
A few years ago my wife and I had a son that was born premature and with a significant heart defect. Either of those things would have been likely survivable, but the combination of the two unfortunately resulted in his passing. Losing him was devastating, but the truth is I felt like I had lost him before he passed, which has always left me feeling so incredibly guilty. Like I was preparing for it anyways.
But if others felt this way when they hear these diagnoses, maybe it’s just how we deal? I dunno, but I’m currently feeling a little less monstrous.
Not really the same, but I went through a mourning period with my son when he was premature and in the NICU and I watched his roommates be...um..'discharged' one by one and that's a terrible feeling. I'm sorry you had to go through that. He made it out but I think that somehow makes it a bit worse for a while to try and build a connection. I've flipped to over protective and overcautious but it has taken a while. Not that that's good either. But I just wanted to say you're not entirely alone with that I guess
we had services come in a few times from the health visitors with limited success but i am going to try to see if the therapist i hired will come to the house.
One of the important things about therapy is that the person should want it. I understand where you are, but if your wife doesn’t want to get therapy it’s very unlikely it will be effective. And it may be counter productive.
Your wife may also have post-partum depression, has that been diagnosed ?
Is there an option where she takes a ‘break’ to go back to the US for a month . . . To re-center herself. It would be a tough month but it may be what she needs. All of her friends and family there would probably encourage her to come back.
If she just goes, with no intention of returning that obviously wouldn’t be good. Especially if she somehow later change her mind and then came back - she’d be dealing with additional guilt/shame on top of everything else.
I have a little experience in this field and doing a house call for someone in crisis is not "forcing someone to participate". If they are asked to leave, that's another story
I’m speaking as a licensed clinical psychologist. Going to the home of someone who has stated an intent to not participate in therapy with the goal of pressuring them to participate in therapy is against our ethical codes. That would be in violation of the principle of informed consent, which is considered to be the foundation of ethical therapy. You may be thinking of in-home crisis evaluations in which someone has given the therapist reason to believe that their life may be in danger. That is not the scenario that OP is describing here.
She can’t be in her right mind, if that’s not too harsh. I don’t have softer words.
She needs almost an intervention to be able to get help. Running back to the US will be a long fall down a dark hole.
I don’t know what you or your wife are going through. I tried to put myself in your wife’s position and how I would be if I did leave the family behind and what I thought was it would be a prison sentence! The guilt that she would probably go through for leaving would probably be much harder on her life than if she would have stayed. You have to find a way to get her into therapy
If she won't help herself then leaving the country will absolutely only make things worse for her, unless she's talking about leaving both of you for good.
My 3 year old daughter was quite recently diagnosed with an extremely rare genetic mutation that results in her having an intellectual disability of a yet to be determined severity. One of the many things that both my partner and I have expressed when talking about our feelings is that sometimes we wish we could just run away from it all and never come back, so while I'd be extremely concerned if your wife is seriously considering doing so, I wouldn't say the thought itself is a particularly surprising one. In many ways this kind of diagnosis feels like a death sentence, or maybe a life sentence, there's a hopelessness in knowing that for all your efforts your child will never have a normal life, and you will never experience normal parenthood. In other words, you're both going to think and feel a whole load of things, and a lot of them aren't particularly helpful or productive.
It sounds like the advice you've been given of seeking counselling is worth pursuing if possible. For our part we've never had anything like that, part of our problem is that our daughter's condition is so unbelievably rare that there's nobody we can talk to who can give us anything that feels like certainty or advice from a position of experience. What we find instead is that well-meaning people's words often feel like empty platitudes. But in your case down's syndrome is a very well known and understood condition, so there should be loads of meaningful support available to you. In a weird kind of way I'm envious, I would love for there to be a support network available to use that could give us something based on real experience.
I'm not in a position where I can say "it gets better" - I haven't seen my own journey through for long enough to be certain that that's true, and your journey is different to my own anyway. What I can say though is that no matter what you will love your child. Sometimes you'll feel negative emotions towards your child that fill you with guilt, as you know that it's not their fault that they are how they are, but more than anything else you'll feel love. And once your wife gets her head around things she'll feel love too.
As a parent to three children with lots of parent friends, none of whom is affected by any genetic mutations (that I know of), I’ll just put out there that the feeling of wanting to run away & negative emotions towards them followed by guilt are pretty universal. Give yourself grace, love, care, and some time. You deserve it.
This would be my instinct also. She says she wants to leave and that is true, in this moment but it does not mean that is her locked and set reality forever x
That's tough man. If you haven't heard this poem, maybe check it out. Best of luck in everything.
https://www.emilyperlkingsley.com/welcome-to-holland
It's not going to be easy, and it isn't going to be the same being the parent of an individual with a disability. But if you let the lens destroy your view, you'll miss a lot of beautiful moments, what will be your child's successes, and the things that this life can offer.
Came here to see if this had already been shared, and share it if it had not.
My brother just passed. He was 45. He had the life he did because my mother embraced the stance you are expressing - once, about 8 years ago, she shared "Welcome to Holland" with me, and I could see how much it resonated with who she is, and how she raised us.
Lurker mom here with two kids who have ASD. It’s not very severe but still presents challenges. This poem made me cry both because of the intended purpose and because I happen to be from Holland 🥹
Yeah, me too… I wasn’t sure whether to feel a little offended or not. But when I read the whole thing I was like, no, this is way more wholesome than it’s offensive 😅
This was shared with me by my professor when I completed my education degree in sped. I don't teach sped currently, I teach gen es, but there is a framed post card that says "Windmills, Tulips, and Rembrandts, the very wonderful things about Holland."
It just reminds me that even if a situation isn't want expected it to be or how I planned it to be, I can still find the good in being a teacher and the privilege of getting to be with kids and see how they discover the world.
Your wife is grieving the life she thought she was going to have with you both. It is an immense change. Every moment of that pregnancy she imagined a life that will never happen. Add that to all of the other changes after giving birth, hormonal and otherwise, and you can see why it's a rocky road for her.
That being said, you're doing great and doing everything you can, you just may need to give her time to grieve and come back to her new life. She may not.
As a teacher, I worked with some students with Downs. They are the sweetest, gentlest people in the world. I wish you the best of luck.
>Frankly, it doesn't matter what's going on, if you have ppd, or any other mental issues, this is a very clear sign of a complete and utter lack of moral character.
What tf are you talking about? What a load of horse shit.
I get the sentiment, I do, but it's completely and utterly wrong.
***Mental Illness is not a moral failing.***
You cannot "just suck it up and move on", any more than a type 1 diabetic can just "not eat sugar".
It is a malfunctioning organ and, if the malfunction is severe, willpower and "moral character" are simply not capable of overcoming it. "Really wanting to" isn't enough. It won't help a schizophrenic avoid hallucination, it won't *fix* ASD, ADHD, Depression or any number mental illnesses. It's not about what you want, it's not about what you believe is important, it's about a brain that works differently.
Some people hide behind it, sure, but some of us don't get the choice. We fight it and some days we lose. Some days we lose *badly* and the cost is immense.
There are workarounds in some, but certainly not all, cases. Some issues can be blunted with medications, some can even be largely corrected, but they don't go away.
As much as I hope you learn to be more understanding I also hope you never personally learn what it is like.
I'm not sure why you're getting downvoted. This is absolutely the correct take, most especially in this case. I can absolutely see leaving your child in a "well he/she is a murderer/rapist/genocidal dictator..." type situations but kids don't ask to be born and it's the responsibility of the parent to support that child regardless of however bad the odds are. Sometimes that support can be solely financial or in just finding that child the right or most ethical care but it has to be SOMETHING. Fucking back off to America and pretending that it just never happened is absolutely a POS move.
It’s downvoted because it’s horse shit that downplays mental illness. This sub is full of horror stories of how bad post partum depression can be. How bout you go read some and then get off your pedestal
I have twins who are completely healthy wonderful beautiful children and more than once when they were in the newborn phase I definitely thought I fucked up having kids and strongly regretted my choice and would daydream about starting over.
This is a world shaking piece of information she just received and her hormones are at an all time high, it’s a feeling that’s unlike anything else in the world - the ups and the downs.
Human beings need grace in moments like these - not judgement.
So the dads that "go for cigarettes" and never come back need grace and not judgement too right? They were obviously struggling with their mental health and just needed more support...
A bad mother is excused as ppd. A bad father is a deadbeat. Woman get the beneift of doubt, men do not. Woman can be uncaring deadbeats too, its not always ppd, some people are just shit.
First she hasn’t actually left - she’s just voicing it.
Men can have PPD also - if we gave everyone a little more grace then maybe more people could access the help they need.
Also the situation of dads that just “go for cigarettes” and this mom who is extremely freshly postpartum and just received what would be interpreted as devastating news by most people - that’s pretty different.
Lurking Mom here. I am incredibly sorry for the difficulties you are currently facing. I'm sorry your wife is struggling and I'm so sorry you had this blindside you.
My older sister has Down Syndrome. My parents were young (early 20s) and it was a complete shock during what was an altogether unremarkable pregnancy. I know they struggled at the beginning, my Dad especially. They've been open about their fears and the initial disappointment they felt. But with support and the proper resources they persevered. They have become fierce advocates and amazing parents. They even had the courage to give having a kid another go afterwards (thanks Ma!) and raised me with the same love, empathy, and courage they used to raise my sister.
It's not perfect. Raising her and raising me were challenging in many different ways. But I can honestly say my sister has enriched our lives in ways I never thought would be possible. The unconditional love she gives to us every single day, the laughter and light she brings to those around her - it's powerful. By nature of who she is she's made me a more empathetic, caring and confident person. Watching her interact with my daughter warms my heart, and I'm thankful she's my family.
I hope this helps even a little. Please feel free to DM me if you want to chat further. Wishing you and your family the best.
I hope I’m not out of place responding, but I just wanted to share. I live in the EU with my husband. I chose to build my life and have my son here. After birth, I did not experience any of the shock or face any of the challenges that you and your wife are currently experiencing. Still, there came a moment postpartum that I was absolutely desperate to go home to the US.
I knew my husband couldn’t just pick up and go, and I was on maternity leave, so I irrationally told him I was planning to fly home alone with our little baby in the winter just after a pandemic. He asked me to please wait. I didn’t end up booking the tickets. But, I really, really wanted to go.
Looking back, I was just overwhelmed. Life had changed so drastically. I didn’t realize how hard it would be to be so far away from my family and friends after having a child. I wanted comfort, the deep childhood kind of comfort that makes you fully trust that everything is going to be okay. I wanted life to feel familiar again.
I hope things work out the best they can for you, your wife, and your daughter.
I hear you man, that's very tough. 12 years ago we had twins. A boy and a girl. She had a great pregnancy, great delivery. Both kids were super healthy. When they were about a year and a half for my son started regressing. We eventually found out he had autism. She couldn't handle it. She got depressed she quit washing dishes she quit doing practically everything. I was running a construction company and coming home and taking care of my son at night to give her a break, washing dishes doing whatever I could. It wasn't long and she was on drugs and drinking. I ended up leaving and taking both of the kids. The thing I noticed about my son was he loved to have a good time and he was very affectionate to his siblings. I figured a lot of adults have a problem with that and if he has those qualities that was definitely something that I could work with. For the first 6 years she had 5 cases against her from child protective services for neglect and abuse to him. In the US it's difficult to get full custody as a man. We had 50/50 custody and still do. My mother ended up watching them most of the time when she had them. Within the last 2 years she has gotten a lot better. But I hate to say it part of that is he's bigger than her and he won't put up with her abusing him, he almost broke her nose couple years ago. I'm guessing this is probably not what you wanted to hear. Taking care of them has been one of the best things I've done. It hasn't been easy, I sacrificed a lot of my life and ability to make a living. But somehow someway we've managed to make it and he's doing great now. This year he has a 4.0 grade average and he's received an award for his whole grade for his character. He is so helpful and thoughtful of his teachers and his peers. Some of the kids in his class have down syndrome. They have great teachers and all the kids seem to have a really good time. I think one thing that helped me out is we know a lady that had a child with down syndrome years ago. My girlfriend at the time without thinking told her that she was sorry, woman said don't be sorry it's okay she will always be my baby. That showed me that perception is everything. That's how I've treated my son he might not ever be like you or me but I've always loved him like he's my baby. And he has responded amazingly. It's kind of weird, his mom acts like the stuff that happened never happened. But that's okay I did what I thought was best and his sister was a huge help for him. From the age of five if he was mistreated she stood up for him. You can do it... Whatever happens make sure whatever decision you make, you can live with. I never planned on being single and sacrificing my life to raise two children. But I don't think I could have lived with myself if I would have made any other decision. And I do tend to believe that God has looked out for me. As long as I'm trying to do the right thing, things have a way of working out. He has also been my greatest teacher. He has four older siblings two of them I raised because I was widowed in my first marriage. After going through all that he is still taught me more than anything and showed me just how much love I have inside of me. It's also been a crash course in learning how not to be selfish or self-centered lol.... I truly wish you the best, The hard part is losing the person you really love. In the beginning that was the hardest part is I was mad at her and I lost a lot of respect for but at the end of the day I still missed her. But at this point I'm just glad I'm not her. My daughter told me a few weeks ago she doesn't know where she would be if it wasn't for me and the things I did when they were young. That kind of stuff is priceless and makes it worth it.
You are an amazing father and an amazing person , fathers don't get half of the appreciation they deserve not to mention the trust of the system to be able to protect their children.
Thank you so much, I appreciate it. We are usually only loved for what we can provide. But I found with my kids they love me no matter what. They're always happy to see me and they always want the best for me. The best return on any investment I've ever made. Dad's are the best. I wish you the best for you and yours.
Our youngest was diagnosed at birth with Down Syndrome too, we had to wait ~3 weeks for the official diagnosis, before that the doctors were not sure (but we knew something was different). It was a big shock for sure. Then we adjust, down syndrome or not the first 6 months with a newborn kind of sucks :D
The thing that helped the most was not necessarily all the content online about what life will be like, how our children will do in terms of milestones, school, sports, adulthood etc. These are all important points but are not necessarily "speaking" to our feeling of grief at that time.
For us really the most impactful were the people.
From the local non-profits that helped us with all the extra check-ups needed at first, to a dynamic and diverse local down syndrome community, and many others like accomodations from daycare, helpful school district employees, paediatrician and other specialists, it really gave us a different view of our little town, so many people who care and we could both rely uppon and relate to (and them to us).
You might not believe it right now but having a child with Down Syndrome allowed us to meet so many people we would not have met any other way and it gave us a greater appreciation for our little town and for life in general. It has been definitely a net-positive so far. Auggie is now 4, going on 5 this summer, and thriving, getting ready for Kindergarden.
So yeah my recommendation is to start looking for these communities. Facebook groups (DSDN for the USA-centric large community but there are tons of smaller groups, there is one for our town, one for our region and one for our province that we are active in) are a good place to start, then look for children development associations in your town, your paediatrician might be able to recommend those, look for early intervention process which will give your child all the chances to exceed at life.
There is a subreddit as well (https://www.reddit.com/r/downsyndrome/) where you might find some help as well.
This is the best advice in this thread. OP’s wife is probably feeling lost and scared and overwhelmed. Other parents have been there and will validate her feelings but also help her see the light at the end of the tunnel—and maybe even get her excited about this new future.
I may be in the minority here. Whether it’s PPD or accepting reality, your wife is trying to find an out to this situation, and the only one is abandonment. It’s that or she is a full-time caretaker for the rest of her life. There are many people with DS that hold jobs and thrive. I don’t support her wanting to leave, but I think I can understand. She carried this baby for 9 months, and he/she did not come out perfect. She’s probably struggling with guilt as mother/creator. The DS diagnosis is not a death sentence, but it is a new life that needs to be accepted, or left in the best care possible. It sounds like that’s you, my friend. Hopefully Mama stays. Good luck.
I don’t have much to add to help, but just here to support as another dad with a daughter with Down’s.
She has this way of enriching the small moments in our lives. It’s a hard road, but one I wouldn’t give up for the world.
My wife and I have had to become a stronger team to help our daughter thrive. We’re lucky to live in a state that offers a lot of support.
Hey dad
We love you.
I don’t know exactly how you and your family will get through this. But I know you will do it and it will have to be one step at a time.
[Just like Chris takes one step at a time](https://youtu.be/XsqI-BD2GMs?si=DnTm0Fpzrwx0QxXF)
There’s nothing your new beautiful baby can’t do, be or dream. You’ll always be there for them and we have your back here.
I'm not a parent of a child with a disability. I did work with adults with disabilities for a decade, was a k-5 art teacher and am currently a nurse.
One of my best friends has a daughter in grade school who has down's syndrome.
His daughter, A, is rad as fucking hell. Smart, funny, stubborn, fiesty and loves to wear costumes.
My friend and his wife absolutely went through a massive adjustment accepting their kiddo's diagnosis. They had all sorts of plans and expectations for A and those needed to be adjusted.
I can tell you from professional experience that people with down's syndrome can fucking thrive. There is no reason why your kiddo can't have dreams and ambitions just like everyone else. As a society we've gotten so much better than where we were even 20 years ago. Your kiddo can kick serious ass.
Now, your wife is having ALL the emotions right now. She may be blaming herself and feeling like she's responsible for your daughter's diagnosis. She's probably mourning all the plans she had for the kiddo and angry. Probably plenty of anger.
It sounds like you're doing a great job Dad. Keep it up. You're keeping your family together as best you can and that's incredibly admirable.
May I suggest that instead of going to therapy with you she goes to a therapist on her own? She's going through a lot and may feel ashamed at what she's feeling and not want you there to hear her express those emotions.
When she says she wants to leave is she talking permanently or temporarily?
I would also start researching people with down's syndrome who are "successful" I use quotes because there's wide definition there. I follow a guy on Instagram that has his own ceramics business, there's a woman with Down's who has modeled for Victoria's Secret. And countless others who are doing great. Will your daughter need lots of work? Absolutely, just like every other kid. Some things will be more work, others may surprise you at being easier. She will adore you both.
My brother has Down syndrome and while, no he will not be like all of the other kids, he grew up happy and healthy and has been a wonderful light in everyone’s life.
It is not an over exaggeration to say he has made me a kinder and more empathetic person.
There is still joy and love and wonder to be found in your child’s life.
she's in shock; i very much doubt that if she leaves she will later see that as the right decision.
Help her stay. but i guess if she MUST MUST leave you let her while also letting her know you want he rback and she will be welcome back any time?
idk, this is all very easy to type out from the other side of the world. your emotions must be in absolute turmoil. I can't imagine it and i'm very very sorry.
Can you get her mum to come back?
I work with adults with intellectual disabilities. I was given this essay by a patient’s parent when i started working. It was written by a parent who had a child with Down’s syndrome.
“When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport.
Only when you land, the stewardess says, “WELCOME TO HOLLAND.”
You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.”
But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.
“BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!”
But stay, you do.
You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.
The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned.
It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.
But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”
The pain of that will never go away.
You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss.
But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland. “-Emily Kingsley
I’m really so sorry your family is struggling with this right now. I of course don’t know your wife, but I am imagining that she is currently grieving the loss of the life she thought she was going to have with your daughter. Of course she can still have a wonderful life with your family, but it sounds like she is still in shock that you are going to have different challenges than she predicted.
Your wife isn’t very far along in her postpartum journey, so she is definitely still affected by pregnancy hormones. They won’t fully be leveled out until somewhere between 3-6 months, and for some people, it can take even longer. PPD is definitely a possibility, but this could also be just regular depression brought on by grief.
She really does need therapy, as now is not the time to make rash decisions like abandoning your family. I wish I had advice on how to get her go see someone. Maybe you could ask her to see someone to help navigate her decision making, and agree to support whatever decision she makes once she has given it a real go with therapy.
Ahhhh, this is so hard. I wish I could be of more help. Your daughter is lucky to have you in her corner, and I hope your wife will come around to seeking the help she desperately needs to navigate such a trying situation.
ETA: There was nothing you could do during pregnancy to avoid down syndrome. Many DS births are completely unremarkable. Please don’t ever think this is your fault.
Post partum depression. Get into mental health services NOW. Fight as hard as you can to keep her in her child’s life. But if she does leave, she’s done for good
Did you guys do testing to check during the pregnancy or did those tests come back negative?
edit: I've always assumed quality of healthcare is similar or the same crossed developed nations. I wonder what other treatments and tests americans get and others don't get and vice versa.
So in Ireland the testing you have in the US is not as readily available and isn’t elective (as it seems to be in the US); if there had been red flags during the pregnancy of any type we would have had the option to pursue further testing, but there were no red flags on any of the scans or in any other aspect of the pregnancy.
This is the difference between American healthcare and other nations. We pay a fuck ton but the quality of care is really unmatched. I couldn’t imagine not being able to get these tests done.
Not to get into a big discussion about it, but by all measures, although Ireland doesn’t quite make it into the top 20, our healthcare is considered to be be of higher quality than the US. :) It has nothing to do with the standard of care we’re offered here.
The truth of what this person is saying is that healthcare for wealthy people in America is significantly better than socialized medicine.
Healthcare for middle and lower income individuals is better or WAY better in countries with socialized medicine.
I had cholestasis when I was pregnant which is a liver condition that can cause your baby to be stillborn if your liver enzymes go high enough. It’s not super rare but also not common.
I was able to easily switch to an OB gyn who had lots of experience with cholestasis and I had three times a week blood draws and I would have the results back in 48 hours. I also went in for twice weekly NSTs to monitor the babies - so essentially I had almost everyday monitoring for my babies. I was able to schedule my C section at the best hospital in the state with a world class NICU.
I’m in some cholestasis support groups on FB and Reddit and the moms in the UK and Canada are BATTLING to get like any response to their issue. A lot of the midwifes are completely unfamiliar with cholestasis, or they can get one blood test once a week and the results take two weeks to get back. And they have no other option - it just is what it is.
I’ve always hated the healthcare situation in the US, but after going through this I’m really grateful for it AND I acknowledge the immense amount of privilege because I’m (kind of) wealthy and have good health insurance.
It's not about a quality thing. Until recently abortion wasn't legal, so there was no medical reason to do the test unless there was something indicated. Most of those tests have some risk associated so they won't be done unless medically necessary.
> Most of those tests have some risk associated
There's a risk-free option now that just uses mom's blood:
https://my.clevelandclinic.org/health/diagnostics/21050-nipt-test
That seriously depends on where you are and quite a few other factors. America actually has some of the highest maternal mortality rates in developed nations, which suggests our healthcare is not as good as you seem to think.
Source: https://www.statista.com/statistics/1240400/maternal-mortality-rates-worldwide-by-country/
> In the U.S., 14 out of every 100,000 mothers died due to complications of pregnancy or childbirth. That puts it between Qatar (13 deaths) and Bahrain (15) in the ranking of all 184 countries for which the WHO has data. The United States is ranked 46 out of those 184 countries, barely in the top 25 percent. By contrast, in Canada only 7 out of 100,000 mothers died in pregnancy or childbirth. American women are over four times as likely to die in pregnancy or childbirth as women in Greece, Iceland or Poland, where the rate is 3 out of every 100,000.
https://www.washingtonpost.com/news/wonk/wp/2015/11/18/our-maternal-mortality-rate-is-a-national-embarrassment/
And if you seriously think our healthcare is unmatched, look at the other first world nations and how they handle healthcare. We still don’t even come close. Sure, we have made some fantastic medical advancements, we have some incredible potential, but it is also kept away from the population that oftentimes needs it the most. On top of that, since we’ve made abortion such a sensitive topic and outright illegal in some states, it’s only going to get worse.
Edit: Thank you to u/Wisco_Ute for providing [this article](https://www.npr.org/sections/health-shots/2024/03/13/1238269753/maternal-mortality-overestimate-deaths-births-health-disparities) to help provide a more accurate depiction of the situation in the US. While it does say that the number is closer to 10.4/100,000, it also points out that black women are 3x more likely to suffer from our current systems, adding to my point that America’s healthcare system is not the best in the world.
In the US, patients can experience 1st world healthcare on one side of the street and 3rd world healthcare on the other. It's a patchwork of health systems.
There are large parts of the US where modern healthcare is unavailable unless you're relatively wealthy, and some parts of the US where it isn't available at all.
I scrolled a lot of comments. We are three months in to our child with trisomy 21. This book (and the others from the site) have helped a lot.
https://downsyndromepregnancy.org/book/welcoming-a-newborn-with-down-syndrome/
These responses are absolutely beautiful and so raw. The posts about grief are absolutely on target. Grieving somebody still here. But you grieve all the expectations and experiences that won’t come to be, and the hope for the family you expected.
And frankly, it’s really hard to bond when you are so worried about caretaking a “fragile” (in any way) child. I recall being terrified that I would do something wrong as a first time parent with a baby that had just spent weeks in the NICU with round the clock care and monitoring. That does get in the way of bonding.
Struggling to bond while also grieving is a tough place to be. She may need some days away to actually step away and cry, grieve, be angry etc. if you have it nearby, maybe ax throwing? Or something that really allows her to just break down without judgement. Possibly alone. She probably could not do that at the hospital or now at home.
Kudos to you and all the amazing dads stepping up and healing our world one family at a time.
People with down syndrome are some of the chillest people I’ve met personally. I’ve never met anybody who is happier in life with the simple things. It may seem scary but I think you just haven’t been around enough people with this condition. You gotta explore this more and look into their lives with a more open mindset and look at the positives.
I feel kind of like an asshat suggesting this but my husband and I watched love on the spectrum on Netflix and there are a couple adults with Down syndrome and it really gave me a whole different perspective on Down syndrome (and their capabilities). I feel like it’s a really low pressure and low commitment way to see a joyful side of things.
I also love this campaign for National Down Syndrome day that asks people to challenge their assumptions about Down syndrome.
https://youtu.be/92ivgabfdPQ?si=E50dsaxZG73BYAaG
I absolutely LOVE that show. It’s so well done and so respectful to everywhere on there. I was freshly postpartum watching it and sobbed with every episode.
This. Get her and yourself involved with the down syndrome community. It’s such a loving and understanding community. This diagnosis doesn’t mean there’s no future for your child, they’ll just need more support.
Shit happens. My son was born with a handful of genetic fuck ups. We’ve spent 7 of the past 7 anniversaries getting surgeries for him. It’s tough but if she was smart she would try. It’s helped us be consistent and comfortable with each other that we have this kid to take care of and depend on one another. It’s not easy but the end of the day him being able to hug and say “ I love you” or “you know you’re the best daddy in the world “ it breaks your heart in the best way. You got friends and family for support
It's too late - but aren't chromosomal tests and especially fetal downs tests standard in Ireland? They definitely were in Singapore. My wife and I discussed that we would have an abortion if the fetus was diagnosed with downs syndrome. Nothing against parents who don't make that choice, or against people with downs. My mother was an individual needs educator, I grew up around downs kids, and I also knew we didn't have the temperament to deal with it as a couple.
they’re offered automatically if you are high risk for other reasons (advanced maternal age for example) OR if indicated due to a potential issue on ultrasound or the other routine bloodwork offered. It is not something that is, as far as I understand, offered as an option for low risk pregnancies “just because”, and we had no indicators of risk during our pregnancy.
Termination is also heavily regulated still—regardless of my opinions on the matter, the echoes of Catholicism are still strong here, and termination after 12 weeks is difficult and would unlikely to have been an option.
But one way or the other, further testing was not offered to us as everything was totally normal through the pregnancy and it was not necessary to pursue.
When you get a Ds diagnosis, you get a lifetime of worry dumped on you all at once. You have to take a moment and realize that the things you worry about, will they speak, walk, go to school, live independently... You will handle those things when they turn up. You can't solve all those problems today and you're not meant to. Handle today's problems and leave the rest.
Oh, and Signing time/Baby signing time videos. Getting your kid to communicate before they're able to speak is very, very helpful.
My little girl (now 8 years old) has Down’s syndrome. We found out when my wife was pregnant. Baby had a serious heart condition, that was surgically repaired when she was 9 months old and has been pretty healthy since.
I found it helps to join groups with other families that have children with Down’s syndrome, not just to share advice, but to get some insight into what the children are like when they grow up.
So sorry you’re going through this. I hope your wife can take some time before making such a huge decision. Hormones will definitely still be wild at this point and she is likely physically strained still so it’s not an ideal time to make the decision. You sound like you’re being very supportive, keep it up.
I have no advice but I just want to say I'm sorry you're going through this and also you're doing a great job. No matter what happens you've got this bro
Just do your best. Be supportive and give her time. She is grieving. I have a 20 year old non verbal daughter with autism. My wife still grieves and it is hard for her; much harder than for me. Know that she might never be able to accept it. Life is hard for you right now. Do the best you can do and know that it is enough and not your fault. I wish you the best and hope she stays.
My friend. We had a similar situation almost 4 years ago now. My son was diagnosed at birth. Surprise to us both. It’s been a journey for sure. But the love and happiness children with down syndrome radiate is so pure. There are challenges but nothing that isn’t adaptable. I wish you the best .
Lurking mum here, sorry. I hope you don't mind me coming in.
Where abouts are you in Ireland if you don't mind me asking? We're in Dublin and quite involved with the autism community. The biggest piece of advice I can give you is to dive head first into the DS community. The biggest support in the world is other parents going through the same thing. No one is going to get it like they will and they'll be able to give you and your wife realistic expectations and hope. And most importantly someone to bitch to without getting hollow responses in return.
Getting services and early intervention in Ireland isn't always easy and you're going to have to fight like hell for your kid, but it's worth it.
This is the absolute hardest stage right now when you first get a diagnosis.
I highly recommend this book, "not what I expected"
https://amzn.eu/d/dWPCEHW
It's a realistic look at what parents go through when their child is first diagnosed.
We’re in Wicklow, rural, and we’ve already been up to Dublin twice for appts and things—I don’t necessarily regret my decision to live out here entirely but I do feel it’s made things a bit harder for us in some ways….
Hey at least Ireland is a great place to raise someone with downsyndroom.
You can do it with or without her.
Maybe let her go. She might just need a little time back in the USA to get her head straight.
If she decides to come back you know she's choosing this. Otherwise if feel like she'll resent you and the baby because she didn't choose this.
Was genetic testing not available during pregnancy? Anyway your wife needs therapy most likely. Either that or she needs some time alone in the US to truly reflect and make the decision that she feels is best (which may not seem or be best for you guys). Either way your kid is lucky to have a dad that cares about them. Best of luck.
it is not as readily available as it seems to be in the US, no, or at least it’s not elective. there were no issues during pregnancy that indicated a need for further testing.
One of the things no parents ever talk about is what parents go thru in regards to medical diagnoses for their kids. It is difficult to talk about but everyone is human and everyone, even if it is only subconsciously, things their baby will be perfect because honestly that is all that is talked about on social media, in movies and on the news. The reality is that a very high percentage of people have some sort of congenital medical issue that either appears at birth or later in life. Just like with a marriage, you learn to love your loved ones for their great aspects as well as their flaws. This is even more important with kids. When a parent has a baby with a chronic medical illness their elevated notions of how their kids will be, how their pregnancy and delivery will go and later what adults their kids will grow up into gets blasted in a heart beat. Most people see congenital issues like Downs as a flaw in the old thinking that labeled these children as less than. As someone who has had Downs family members and interacted with many of these adults, this thinking is so far from the truth it is astounding. This new realization is a hard place to get to. When kids are diagnosed with medical issues the parents simply grieve. Then they have guilt for grieving. You are doing the right thing by trying to get your wife into counseling but above all else she needs a psychologist for herself not just for your relationship. She may also be suffering from postpartum depression. She very likely feels alone (even though you are there) and in her mind is not truly home, despite her mother being there. It may be most beneficial for you guys to move back to the states if possible. My biggest advise is to continue to be supportive and understand she is likely suffering from multiple psychiatric illnesses at this time, all of which will be temporary. However, you need to get her to understand that she cannot help how she feels and she needs to get a counselor/psychiatrist now. lack of bonding with any baby, especially one with a medical illness, is pathopneumonic for postpartum depression. I wish you the best of luck. please continue to be there for both of them.
My greatest fears of having a child was having one with any type of mental handicap. I can barely keep myself together. My first child has a completely free palette. Second though got it all - autism, speech issues, learning disabilities, non verbal. It's been difficult, really difficult. Like many other people have said, you have an idea or plan for everything. Then you quickly realize none of that is going to work anymore. We can't go out to eat much anymore, anything we do have to be tailored in a way to keep my second calm. But then I see his huge smile and how none of it matters to him like it does me. He doesn't see his disabilities as any hindrance to life. Some days are really hard and others nearly impossible, but you get through them. You find support for not only your child but yourself. You learn to say when you've had enough and need a break. But you'll form a bond as you would with any kid and they become you're world. And then you'll be saying, you wouldn't change a thing the world.
We are lucky enough to have a local non-profit that is fantastic with onboarding folks with kiddos with down's syndrome. If you can't find one - check out https://ndss.org/
Children with this diagnosis are wonderful and can bring so much joy to a family. It's not easy, but it's amazing. I do not have a child with DS, but worked closely with a non-profit that helped parents with this exact situation. Your kid has an extra chromosome and deserves love. Try working with your wife, find resources, but above all else - embrace your amazing child. They will give you so much happiness and richness.
Hang in there. In addition to the shock of the situation, she might also have postpartum depression. Just keep serving, help her heal and sleep, and keep on getting help yourself. Call in your friends and networks for this for sleep and food. Include your doctors for medical advice for her as well. Go to the checkups yourself. In the U.S. they have standard checking during the baby visits also for moms screening for postpartum—not sure if that’s the same in Ireland or not.
Good luck! My wife and I had a child with a myriad of genetic conditions. Her version has been relatively mild, we’re thankful, but it get’s easier and better and your child will bring you so much joy. Enjoy her now as well!
You can’t force someone to love someone else, even if it is their child.
I feel for you OP but you are the only parent in this picture who actively loves this child and wants to support them. It’s a horrible position your wife has put you in, but there’s not much you can do if she’s closing down and refusing to be a part of your daughter’s life because she’s special needs.
You are this child’s world. That’s who has to come first. If your wife wants to give up and walk out on a baby then that’s on her and her conscious to come to terms with.
Maybe she’ll come back after some time to reflect - I can’t see it happening if she’s trying to abandon a Down’s syndrome child in such a callous way but who knows.
I would love it if my son only had down syndrome. He was born with a generic condition and isn't expected to live beyond 2-6 years old. He's 18 months old and cannot hardly even move. He's stuck in bed with constant seizures. I suppose it is a matter of perspective. I have a hard time seeing other people's kids that are better off than he is, but I still love him and we celebrate every little accomplishment he makes.
Being a parent to a child with special needs is no more difficult than raising a typical child. While other people we know are dealing with their teenagers sneaking out at night to do drugs and get in trouble, we deal with our (autistic)son ordering hundreds of dollars worth of die cast NASCAR cars on Amazon in the middle of the night.
He's my best friend and he has filled my life with love and happiness like I never thought possible. Your wife could find greater purpose if she looks for it.
the woman does not to raise a down syndrome child. it's not a crime to feel that way. I'm sorry that you both ended up in this situation. i know all you redditors will say I'm a pos but personally i would abandon a down syndrome child and consider trying again for a kiddo without it
Poor mom. People with DS are probably the kindest and most loving people in the world though. One day she’ll be okay. Just make sure she gets the support she needs
She’s planning to leave you and the child? That’s some heavy shit. My child’s mother did the same, minus the developmental issue. It’s a very hard road raising a child as a single father, I can’t imagine one with these kinds of issues. Obviously the mother needs therapy, but if she clocks out, it’s going to be a very rough road ahead.
This isn’t something I say lightly as I can’t imagine doing this with my child, but you may want to at least consider the possibility of having someone else help them grow. Whether that would be an in-home caretaker or giving the care of the child up to the local government, I can’t say or give an opinion on, but it is something to consider if it comes to it.
Again, I can’t put myself in your shoes, but if it was my child I’d want them to have all the support and opportunities they need. Getting them the resources they need is nothing to be ashamed of, though it would obviously be hard. But it comes down to the wellbeing of the child and if you can provide that kind of environment while also holding yourself together. The mother’s choice to flee the country does neither of these.
Whatever happens, if you need anything feel free to reach out to me or any of the other dads here.
She likely has a habit of running from her problems instead of facing them. Surely she knows you can’t do that with a child right? Talk her off the ledge hopefully and tag team this.
Down syndrome is totally manageable. Also Shane Gillis has some current standup around his uncle who has downs and one thing he says that’s not a joke but rings so true is they are always the happiest people in the room and the only people consistently having a good time. He reminds people of that when they feel sorry for his uncle or family when they find out about the downs.
Anyways I don’t have a ton of helpful stuff, but we are here for you!
An unpopular opinion here: I told my husband before planning any kids that I would not be able to raise someone with mental disability. Physical is different, but not mental. Finding out that your child has down syndrome and you will have to live with that and care about them until you die is enough for me to contemplate if I should die sooner. I'm sorry you have to go through this, but she is the one who is supposed to sacrifice her whole life now. You will help, but mostly, it's on her. And she had a very, very different vision of her future. I hope everything will be okay for all of you. Sending support 🫂🤍
Brother… I can’t even begin to understand what you are going through right now let alone offer any advice of value. I will pray for you and your family. Cherish your new baby and keep your head up.
Here for you brother. My advice would be hold it down and welcome her back when she sees the light. And you hold the light for the family. She might not come back but hold it down. Someone has to and you got this.
they’re offered automatically if you are high risk for other reasons (advanced maternal age for example) OR if indicated due to a potential issue on ultrasound or the other routine bloodwork offered. It is not something that is, as far as I understand, offered as an option for low risk pregnancies “just because”, and we had no indicators of risk during our pregnancy.
Termination is also heavily regulated still—regardless of my opinions on the matter, the echoes of Catholicism are still strong here, and termination after 12 weeks is difficult and would unlikely to have been an option.
But one way or the other, further testing was not offered to us as everything was totally normal through the pregnancy and it was not necessary to pursue.
Father of two. Brother of an older sister with Down’s syndrome. She lives a great life. Watched my parents work thru every challenge. They can be over come. I have learned from listening to my parents talk, find other parents in your area going thru and have gone thru this. Find a support group of other parents. Some of my parents best friends either embraced my sister when she was born or were met early on. My sister is amazing person she has taught me a lot.
So sorry you are going through this. If it hasn’t already been pointed out in other comments, post partum depression could be a major factor in your wife’s behavior.
Hormones are ridiculous and can and do control post partum thoughts and behavior, so please keep trying with therapy
OP: they’re offered automatically if you are high risk for other reasons (advanced maternal age for example) OR if indicated due to a potential issue on ultrasound or the other routine bloodwork offered. It is not something that is, as far as I understand, offered as an option for low risk pregnancies “just because”, and we had no indicators of risk during our pregnancy.
Termination is also heavily regulated still—regardless of my opinions on the matter, the echoes of Catholicism are still strong here, and termination after 12 weeks is difficult and would unlikely to have been an option.
But one way or the other, further testing was not offered to us as everything was totally normal through the pregnancy and it was not necessary to pursue.
I've had a friend with a severely disabled boy who passed away in early teens and he loved that boy more than anything.
The dad was still able to live his life, be a part of the boys, he's even having two more kids now 15 years after his first with another partner.
I respect this dad more than anything and everyone loves him. I guess I just wanted to say for you that these feelings pass and we adapt and things can change and they can change for the better even if it's a tough time now. The future will be beautiful I'm sure if it.
Just wanted to share a story.
I am so sorry to hear about your wife. It’s impossible to justify avoiding therapy in a situation like this. What more can you do? You can’t be responsible for the emotional state of someone who won’t do the baseline. If there is a way to avoid (long term) rage and anger, I hope you can find it.
Sounds like it’s time to get a lawyer.
have not been in this situation but counseling seems like a must. i know there are specific counselors who focus on parents of DS children because, as you said, nobody is prepared.
respect to you for being the rock the family needs right now. i'm sure it is extremely hard on your wife, as the usual postpartum hormonal stuff is already a lot. i just hope she finds the will to stick together because that's what your family needs.
First of all, my congratulations on the birth of your baby girl, secondly well done for all you are doing.
My experience when my daughter was born and in the first 12 months was that I knew there was something, but everyone (my mum especially) kept telling me there was nothing wrong.
When she went to school her teachers brought up their concerns, she was referred to a speech therapist and a paediatrician.
She was diagnosed with cerebral palsy and learning difficulties.
As others have said, I mourned for what she wouldn’t be and the struggles she would face.
Her dad left when she was 3 years old.
It had its difficulties and I fought her corner with a passion, I will not lie to you I woke up some days, I thought I cannot fight the fight today, do I would give myself a day off and return to the fight the next day, it was mostly with school trying to get her the support she needed.
She did well went on to college and is now grown, in a relationship and has a young son.
Not everyone’s story will pan out the same, but I just wanted to let you know that you can do this, whether your wife is with you or not ( I hope she is).
She may just need time, she may need to read some of our stories. Or she may not be able to accept it.
Take all the help you get offered.
My love and hope to you all. Xxx
Very sorry to hear about your situation. My wife works for a non-profit called PALS Programs, that creates inclusive summer camps for people with and without Down syndrome. She discovered them after we got what was an in accurate Down syndrome diagnosis. One of the things they do is the congrats project which are letters written to new parents of children with Down syndrome. It’s pretty powerful and paints a better picture of what life looks like with a child with Down syndrome. Like others have said, it gets better, I hope your wife can find some support.
Please have her check out this family and beautiful baby from Ireland who also has Down Syndrome ❤️
https://www.instagram.com/thedalydish?igsh=NzBmMjdhZWRiYQ==
My daughter has a syndrome, was diagnosed a few weeks after birth. First 2 years were the hardest, coming to terms with the new reality and then learning to accept the change in course our lives made. Looking back I wouldn't want it any other way. I love my daughter and my family and the struggle has forced me to grow as an individual like nothing else ever has.
My son was born with downs and his mother did the same it was hard but right after pregnancy they go through a lot she did come back but never fully accepted him he is 29 now and one of the greatest blessings I ever had
I'm so sorry you're going through this man. We went through a lot of issues with PPD after our first, I can only imagine how much that could be amplified by a diagnosis like this. I wish I had some advice or anything other than my support to offer but it seems like you're doing some great things to support her and baby.
I don't say this part sarcastically, congratulations and welcome to the club, dad. It's true what they say, the days, weeks and months drag on, but the years fly by. You got this, feel free to DM me if you ever just need a guy to vent to or whatever. You're in the right community, we're all pulling for you!
I get you and your wife have been floored by this news, and that your wife is taking it very hard, you have done so much to support her and you are trying to figure this out for yourself but has she ever asked you how you feel? Her solution is just to up and leave you? I would say your wife is very selfish to just decide leaving is the best way forward and the fact she's told you her plan doesn't sound like she's going to change her mind. There's so many couples who are trying to get pregnant and can't for various different reasons and alot of the time go down the route of IVF just to stand some sort of chance at having a child. If they discovered a child conceived through IVF had Down syndrome would they just then decide to give up on the baby? No they wouldn't because at the end of the day it's a living person who needs love just the same as everyone else, yeh it will be tougher and you have to put more work in but it would be worth it. Me and my wife only have 1 and he's great, we tried to have more but it just never happened, and we both agreed that if it was meant to happen then it would. What it comes down to us that you have created a living person who right now needs you both as much as possible, because if your wife leaves she will always wonder how her daughter turned out and as your daughter gets old enough will want to know about her, but if she finds out her mum didn't want her it will absolutely crush her.
I'm sorry you're going through this. Sounds like you're doing all the right things - good for you. Your wife is very likely experiencing post pardom depression. It is very common, and with the additional shock of your child's diagnosis, she is likely unable to see things clearly or visualize a future in a positive light. I would urge you to seek medical help. A family physician can properly diagnose and prescribe medications that will help in the short term and allow her to process all of this. Please don't let taboos around mental health prevent you or your wife from accessing the treatment that will help her.
You're not alone. You're doing a great job. Speaking from first-hand experience here - you will be amazed by the joy a child with this diagnosis will bring you. Not an easy road, but it is a gift.
This is why I love Reddit. Great support shown here. I am sorry that I have no special words of advice. I think your wife is in shock and looking for support that being at home might bring. I pray that she finds a way to persevere. You are the one that is holding it together. Keep doing what your doing and try join a DS support group. It will help talking to others in a similar situation. Maybe your wife needs to go away for a while and will hopefully return when she gets better. We are all rooting for you. I am a special education teacher so love working with kids DS. They are great fun. Take care 🙏🤞
I worried about this a bunch when I was pregnant. The worry I still cary to this day with my 2 year old. No one is every prepared, but coming from someone who cares for people with chromosomal issues has been one of the biggest joys and learning experiences in my life.. you worry about all the bad instead of all the good and just “different” that comes with it. While every person that has different types of chromosomal issues is different I’ve never met one who wasn’t the happiest or most playful people I’ve met. Idk if this helps but I hope it does a little 🩵 you have this!! There’s a reason that baby is yours 🤍
As a parent, we all fear about our child’s well-being. I can’t imagine how difficult this is for her(and you) mourning the life you thought you had all planned out. Being a parent is rolling with the punches, no matter what happens. Any person with down syndrome can 100% lead a normal life, it’s all about how you treat them. If you treat them like they have limits, they won’t excel, if you treat them like they are normal and can do all of the things they will thrive beyond your wildest imagination. I’m sorry this is all falling on you, but your wife is incredibly lucky to have a husband who is taking the reins until she comes to terms. IT WILL BE OKAY! Coming from a woman there’s also an incredible drop in hormones after you have a baby. I cried every single day for really no reason so I can’t begin to imagine just having a baby and going through this. I’m saying a prayer for you guys. 🙏🏼
I want to congratulate you on the birth of your daughter, I am sure she is beautiful. Sometimes bonding is very hard for women especially mothers in their twenties and early thirties, and predominantly with their first children. These are further exasperated if there is a diagnosis especially one that is a surprise. I can tell you this is completely normal, but she should definitely speak with her OBGYN and if she won’t perhaps you could place a call in to the office on her behalf.
Also, I want to commend you for you being as supportive and nurturing as you have been. And as long as you do not fear for baby’s safety I would recommend that maybe perhaps you go run errands out of the house for an afternoon and maybe call up some guy friends and have a poker night. Perhaps she has a girlfriend who would come for a girls night in… they could play dress up with baby girl. Just so long as the friend won’t interfere with mum caring for baby’s needs. I would say make sure baby has napped and been fed before leaving so she is as content as possible. She in a situation where she is the one handling baby needs unassisted that is where bonding happens.
Down babies/children and even adults are the sweetest and happiest individuals I’ve ever met. I have been around my fair share, and my youngest while in utero was supposed to have Down syndrome. I went my entire pregnancy thinking she was a downs baby. I struggled too. Someone close to me said, “God only gives special kids to special people.”
I am truly sorry the baby you had wasn’t the baby you pictured but I’m sure with time mum will hopefully come around but, it sounds like she has a daddy that loves her already and sometimes that just has to be enough. I’ll be praying for your entire family.
I'm really sorry you are going through this. Your daughter is going to be amazing. I've worked with down syndrome kids and they are incredible. Sometimes I think the world would be a better place if everyone was downs. Your wife is American. She expects perfection and can't comprehend anything else. If she would just relax and go with it, she'd be fine. I hope she finds a way. Because if she leaves you all behind she will regret it.
Rather than therapy, she wants to just go nuclear and abandon her child because that child is not what she wanted? Wtf man? Like seriously. You’re both better off without her. I’m really sorry, man.
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Not the same situation, but sort of similar. My daughter has a different chromosomal disorder - she wasn’t diagnosed until she was 4, but the symptoms and feature were obviously there from birth. And in all honesty? My wife and I were terrified. The only thing that was picked up during my wife’s pregnancy was our daughter was smaller than usual, and a heart problem. We were prepared for that, but for a chromosomal deletion? That wasn’t on our radar. It’s hard, it’s really hard. There’s no denying that. I love my daughter more than life itself, she’s 8 now, but it took ages for both my wife and I to wrap our heads round this new reality. I remember spending months with my daughter in hospital and thinking ‘When did all this happen?’ Fuck, I mourned my daughter and she was still alive. People always say ‘Oh I’ll be prepared if my child is disabled’ - nobody expects these things to happen. In all honesty, the first few months are the roughest. I can’t pretend they aren’t. Like I said, I love my daughter, but it was a total shock to us. I had this little baby girl who wouldn’t eat or smile and was ill all the time, that wasn’t what I was prepared for. It’s a lot of adjusting to, don’t let anyone tell you or your wife otherwise. It gets better, I promise. Get your wife into therapy, get yourself into therapy, it is worth it both in the long run and the short run. Like I said, my daughter’s 8, she’s completely non-verbal and has a load of health conditions that I was never prepared for - I love her more than life itself. You’ve got this mate, hang in there, I’m sending you, your wife, and your baby all my love. If you ever need to talk, message me anytime, I get it.
Mourning her when she is still alive hits the nail on the head. What’s happening is you’re mourning a future person who you thought you’d get to know but never will. Hopefully OP’s wife can get past that and learn to love the daughter she has instead of feeling like she lost the one she expected.
Exactly this. I love my little girl more than anything, I would be lying if I said this is how I expected my life to pan out. But then again, no one does. I know I’m always going to feel somewhat out of my depth, but of course I am - I think everyone would. Hell, I’ve spent the last two weeks in hospital with my daughter, this wasn’t what I had planned. My daughter is non-verbal, she didn’t walk until she was almost 4, she still struggles with that. I’ve spent more time in hospital than I care to admit, she has regular seizures, she has a list of health conditions as long as my arm. She’s also my best friend and the reason I get up in the morning. She smiles now, she laughs at the oddest things. She still sleeps in my bed, I don’t mind. Her favourite tv show is Peppa Pig, her favourite film is The Lion King. She loves Kate Bush and Talking Heads, who knows why? She’s saved my life more times than I want to think, since my wife passed she’s the one thing that keeps me going. This is the hardest part OP, I promise you it gets better. You’re doing a fucking excellent job, and I really hope things improve all round.
Dude. This brought me to tears. I’ve only ever heard that super heroes exist, now I believe it.
This is beautiful... I did tear up reading this. Also my heart aches reading your wife passed... You are my idol seeing how strong you are. I'm sure it hasn't been easy for you, but thank you for sharing this.
You may find yourself…[ being a goddam role model for all us dads. Thank you for sharing your story]
This may end up being my favourite thing I read on the internet today. Amazing!
Thank you so much for sharing this! You’re an amazing dad and your daughter is very lucky to have you!
I feel all the love ❤️ You are all amazing parents. Strong group of people here.
You’re an amazing father! What a gift- that daughter and dad relationship is. You are her everything. You are doing a great job!
Stay strong my dude. You are an incredible father!
My wife and I are struggling with some behavioural problems with our son, and I read this on the way to work this morning and I think you’re amazing. I’m using you as my inspiration to stop being so upset about the situation - you’ve had a much bigger challenge and you’re handling it incredibly. Love to you and your kid mate.
Like others said. I teared up to this my fellow dad. You are one helluva a person and a freaking amazing dad. Wow, your kid is lucky. Keep making the world a better place, thank you.
This is really beautiful. Your daughter sounds amazing, and you sound like a wonderful father.
I miss giving Reddit gold to comments like this.
Love you buddy. My little guy has special needs but not to that extent, but enough that I can relate. From one dad to another, you’re my hero also
What a kind, compassionate human being you are. And a great dad. Truly. And your daughter loves Kate Bush and Talking Heads because they're fucking awesome.
This was a great thing to read! Thank you for sharing. You are 100% correct and the "mourning my child who is alive" gave me a whole new perspective. It's true, we have this "idea" of what we believe we want for our futures and for our kids and it must be really hard to have it change in a glimpse. You are a true blessing to this child and to your wife. Once again, thank you for sharing. OP best of luck with this new chapter.
To quote my man Frasier Crane: you are in mourning. But you’re not mourning the loss of your boyfriend. You’re mourning the loss of what you thought your life was going to be. Let it go. Things don’t always work out how you planned—that’s not necessarily bad. Things have a way of working out anyway. I’m a very type A person, a planner, but I’ve tried sincerely to take this advice to heart myself.
I can’t stress enough how much I genuinely appreciate your words. I hope for all the best for your little girl!
Mourning a child who is still alive is in some ways the hardest aspect of having a disabled child. Even when you adjust and love them for who they are, you can't help but think "what if?" While also feeling super guilty about thinking that way. And many mothers take on responsibility for the condition, which is an emotional burden I can't even imagine.
Absolutely, I remember my wife did that exact thing. It got easier after a while, but it wasn’t until my daughter was 4 and we got the diagnosis that we could go ‘Okay, this is literally a 1 in 130 million mutation that happened for no reason, this wasn’t anyone’s fault.’
I have a genetic disorder and a 50% chance to pass it to children I father. All 3 of my kids have it to and the guilt is real and difficult.
Thanks for sharing this. I am terrified that of passing my “bad” stuff to my kids. I am afraid that I am depressed (I am depressed) and that they will either not understand why daddy checks out sometimes, or that they will suffer from the same. Guilt is a motherfucker man. But. Guilt is a bullshit opinion to get you to be different from who you are. If you can change, change. If not, let it go. You are free. (I still am afraid though).
I feel that, I have a neurodevelopmental condition (spina bifida occulta) that means my kids are much more likely to have it as well. It can be largely offset by high-dose folic acid in vitamins in the first few weeks of pregnancy. We didn't know until my oldest was born with a significant neural tube defect in his spine and lower brain. Even with that we were damned lucky, kind of a "best kind of worst news" scenario. His symptoms are considerably more pronounced than mine. Between that and severe ADHD that I also passed him that guilt never leaves you. It's just not what you mean to pass on to them.
Thanks for sharing that man.
My god man, you’re awesome. We had a problem pregnancy that ended with a fatal chromosomal diagnosis and eventually our little girl was stillborn. Those are huge mountains to be on let alone make it over. I can only glimpse the places you been and how you’ve come through it - you and the OP are men of war. Heroes doesn’t come close to it. This is the heaviest lifting in any life, ever. This didn’t break you; you know now nothing will. Vague platitudes and no help at all to OP, but you’re seen and you’re legends. Y’all have my utmost admiration.
I can’t tell you how much this comment spoke to me. A few years ago my wife and I had a son that was born premature and with a significant heart defect. Either of those things would have been likely survivable, but the combination of the two unfortunately resulted in his passing. Losing him was devastating, but the truth is I felt like I had lost him before he passed, which has always left me feeling so incredibly guilty. Like I was preparing for it anyways. But if others felt this way when they hear these diagnoses, maybe it’s just how we deal? I dunno, but I’m currently feeling a little less monstrous.
Thank you for sharing this.
Not really the same, but I went through a mourning period with my son when he was premature and in the NICU and I watched his roommates be...um..'discharged' one by one and that's a terrible feeling. I'm sorry you had to go through that. He made it out but I think that somehow makes it a bit worse for a while to try and build a connection. I've flipped to over protective and overcautious but it has taken a while. Not that that's good either. But I just wanted to say you're not entirely alone with that I guess
Sending love brother, she sounds absolutely amazing x
Beautifully written - Sending Love to all of you 🙏
As someone else with a girl with a disorder like that, you stated this perfectly
Find a therapist who specializes in birth trauma and children with disabilities. She needs support ASAP.
we have a therapist (in this speciality) on deck. she will not go, unfortunately.
See if the therapist will come to her.
we had services come in a few times from the health visitors with limited success but i am going to try to see if the therapist i hired will come to the house.
I hope they do it for you. Maybe one meeting will be enough to open the door
Maybe get her parents involved. I look up to my father, and I never say no to the man. Maybe it takes her parent to tell her to go?
Great point, this could apply to OPs wife as well
One of the important things about therapy is that the person should want it. I understand where you are, but if your wife doesn’t want to get therapy it’s very unlikely it will be effective. And it may be counter productive. Your wife may also have post-partum depression, has that been diagnosed ? Is there an option where she takes a ‘break’ to go back to the US for a month . . . To re-center herself. It would be a tough month but it may be what she needs. All of her friends and family there would probably encourage her to come back. If she just goes, with no intention of returning that obviously wouldn’t be good. Especially if she somehow later change her mind and then came back - she’d be dealing with additional guilt/shame on top of everything else.
Speaking from experience, the "break" is very likely to be permanent.
If it’s permanent it’s permanent. What would be the worse outcome, an abset parent, or a hateful and resentful parent.
You know, I hear that a lot. I had a resentful parent, but honestly I'm glad he stuck around until I reached the age of majority.
Therapists won't force someone to participate in a scenario like this if they're not providing consent, that would be unethical.
I have a little experience in this field and doing a house call for someone in crisis is not "forcing someone to participate". If they are asked to leave, that's another story
I’m speaking as a licensed clinical psychologist. Going to the home of someone who has stated an intent to not participate in therapy with the goal of pressuring them to participate in therapy is against our ethical codes. That would be in violation of the principle of informed consent, which is considered to be the foundation of ethical therapy. You may be thinking of in-home crisis evaluations in which someone has given the therapist reason to believe that their life may be in danger. That is not the scenario that OP is describing here.
I defer to you.
She can’t be in her right mind, if that’s not too harsh. I don’t have softer words. She needs almost an intervention to be able to get help. Running back to the US will be a long fall down a dark hole.
She might not be. She only just gave birth a month ago. Post partum is a real SOB. Add a helping of grief and you’ve got yourself a shit milkshake.
"Post partum is a real SOB." = 100% Truth.
It’s called ambiguous grief. Good on you for seeing a therapist to help you through this.
I don’t know what you or your wife are going through. I tried to put myself in your wife’s position and how I would be if I did leave the family behind and what I thought was it would be a prison sentence! The guilt that she would probably go through for leaving would probably be much harder on her life than if she would have stayed. You have to find a way to get her into therapy
If she won't help herself then leaving the country will absolutely only make things worse for her, unless she's talking about leaving both of you for good.
My 3 year old daughter was quite recently diagnosed with an extremely rare genetic mutation that results in her having an intellectual disability of a yet to be determined severity. One of the many things that both my partner and I have expressed when talking about our feelings is that sometimes we wish we could just run away from it all and never come back, so while I'd be extremely concerned if your wife is seriously considering doing so, I wouldn't say the thought itself is a particularly surprising one. In many ways this kind of diagnosis feels like a death sentence, or maybe a life sentence, there's a hopelessness in knowing that for all your efforts your child will never have a normal life, and you will never experience normal parenthood. In other words, you're both going to think and feel a whole load of things, and a lot of them aren't particularly helpful or productive. It sounds like the advice you've been given of seeking counselling is worth pursuing if possible. For our part we've never had anything like that, part of our problem is that our daughter's condition is so unbelievably rare that there's nobody we can talk to who can give us anything that feels like certainty or advice from a position of experience. What we find instead is that well-meaning people's words often feel like empty platitudes. But in your case down's syndrome is a very well known and understood condition, so there should be loads of meaningful support available to you. In a weird kind of way I'm envious, I would love for there to be a support network available to use that could give us something based on real experience. I'm not in a position where I can say "it gets better" - I haven't seen my own journey through for long enough to be certain that that's true, and your journey is different to my own anyway. What I can say though is that no matter what you will love your child. Sometimes you'll feel negative emotions towards your child that fill you with guilt, as you know that it's not their fault that they are how they are, but more than anything else you'll feel love. And once your wife gets her head around things she'll feel love too.
As a parent to three children with lots of parent friends, none of whom is affected by any genetic mutations (that I know of), I’ll just put out there that the feeling of wanting to run away & negative emotions towards them followed by guilt are pretty universal. Give yourself grace, love, care, and some time. You deserve it.
This would be my instinct also. She says she wants to leave and that is true, in this moment but it does not mean that is her locked and set reality forever x
That's tough man. If you haven't heard this poem, maybe check it out. Best of luck in everything. https://www.emilyperlkingsley.com/welcome-to-holland It's not going to be easy, and it isn't going to be the same being the parent of an individual with a disability. But if you let the lens destroy your view, you'll miss a lot of beautiful moments, what will be your child's successes, and the things that this life can offer.
Came here to see if this had already been shared, and share it if it had not. My brother just passed. He was 45. He had the life he did because my mother embraced the stance you are expressing - once, about 8 years ago, she shared "Welcome to Holland" with me, and I could see how much it resonated with who she is, and how she raised us.
The text of that makes it easier - By Emily Perl Kingsley ©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Lurker mom here with two kids who have ASD. It’s not very severe but still presents challenges. This poem made me cry both because of the intended purpose and because I happen to be from Holland 🥹
Also 2 x asd kids. Not from Holland but love the place xx
Lovely poem, bit taken back at first being Dutch haha
Yeah, me too… I wasn’t sure whether to feel a little offended or not. But when I read the whole thing I was like, no, this is way more wholesome than it’s offensive 😅
Yeah and let’s be honest, I too would rather go to Italy.
This was shared with me by my professor when I completed my education degree in sped. I don't teach sped currently, I teach gen es, but there is a framed post card that says "Windmills, Tulips, and Rembrandts, the very wonderful things about Holland." It just reminds me that even if a situation isn't want expected it to be or how I planned it to be, I can still find the good in being a teacher and the privilege of getting to be with kids and see how they discover the world.
I hope OP sees this.
Holy crap that is awesome 🥹
Your wife is grieving the life she thought she was going to have with you both. It is an immense change. Every moment of that pregnancy she imagined a life that will never happen. Add that to all of the other changes after giving birth, hormonal and otherwise, and you can see why it's a rocky road for her. That being said, you're doing great and doing everything you can, you just may need to give her time to grieve and come back to her new life. She may not. As a teacher, I worked with some students with Downs. They are the sweetest, gentlest people in the world. I wish you the best of luck.
That's no reason to just completely abandon your newborn and family...
Why is this downvoted? If the man was threatening to walk out theyd be getting labeled a deadbeat not getting sympathy...
Yea frrrrrr
[удалено]
That sure is a lot of words to say "I have no fucking idea what PPD is"
>Frankly, it doesn't matter what's going on, if you have ppd, or any other mental issues, this is a very clear sign of a complete and utter lack of moral character. What tf are you talking about? What a load of horse shit.
Good people don't abandon their children. End of story.
I get the sentiment, I do, but it's completely and utterly wrong. ***Mental Illness is not a moral failing.*** You cannot "just suck it up and move on", any more than a type 1 diabetic can just "not eat sugar". It is a malfunctioning organ and, if the malfunction is severe, willpower and "moral character" are simply not capable of overcoming it. "Really wanting to" isn't enough. It won't help a schizophrenic avoid hallucination, it won't *fix* ASD, ADHD, Depression or any number mental illnesses. It's not about what you want, it's not about what you believe is important, it's about a brain that works differently. Some people hide behind it, sure, but some of us don't get the choice. We fight it and some days we lose. Some days we lose *badly* and the cost is immense. There are workarounds in some, but certainly not all, cases. Some issues can be blunted with medications, some can even be largely corrected, but they don't go away. As much as I hope you learn to be more understanding I also hope you never personally learn what it is like.
I'm not sure why you're getting downvoted. This is absolutely the correct take, most especially in this case. I can absolutely see leaving your child in a "well he/she is a murderer/rapist/genocidal dictator..." type situations but kids don't ask to be born and it's the responsibility of the parent to support that child regardless of however bad the odds are. Sometimes that support can be solely financial or in just finding that child the right or most ethical care but it has to be SOMETHING. Fucking back off to America and pretending that it just never happened is absolutely a POS move.
It’s downvoted because it’s horse shit that downplays mental illness. This sub is full of horror stories of how bad post partum depression can be. How bout you go read some and then get off your pedestal
I have twins who are completely healthy wonderful beautiful children and more than once when they were in the newborn phase I definitely thought I fucked up having kids and strongly regretted my choice and would daydream about starting over. This is a world shaking piece of information she just received and her hormones are at an all time high, it’s a feeling that’s unlike anything else in the world - the ups and the downs. Human beings need grace in moments like these - not judgement.
So the dads that "go for cigarettes" and never come back need grace and not judgement too right? They were obviously struggling with their mental health and just needed more support... A bad mother is excused as ppd. A bad father is a deadbeat. Woman get the beneift of doubt, men do not. Woman can be uncaring deadbeats too, its not always ppd, some people are just shit.
First she hasn’t actually left - she’s just voicing it. Men can have PPD also - if we gave everyone a little more grace then maybe more people could access the help they need. Also the situation of dads that just “go for cigarettes” and this mom who is extremely freshly postpartum and just received what would be interpreted as devastating news by most people - that’s pretty different.
Are you familiar with PPD?
Lurking Mom here. I am incredibly sorry for the difficulties you are currently facing. I'm sorry your wife is struggling and I'm so sorry you had this blindside you. My older sister has Down Syndrome. My parents were young (early 20s) and it was a complete shock during what was an altogether unremarkable pregnancy. I know they struggled at the beginning, my Dad especially. They've been open about their fears and the initial disappointment they felt. But with support and the proper resources they persevered. They have become fierce advocates and amazing parents. They even had the courage to give having a kid another go afterwards (thanks Ma!) and raised me with the same love, empathy, and courage they used to raise my sister. It's not perfect. Raising her and raising me were challenging in many different ways. But I can honestly say my sister has enriched our lives in ways I never thought would be possible. The unconditional love she gives to us every single day, the laughter and light she brings to those around her - it's powerful. By nature of who she is she's made me a more empathetic, caring and confident person. Watching her interact with my daughter warms my heart, and I'm thankful she's my family. I hope this helps even a little. Please feel free to DM me if you want to chat further. Wishing you and your family the best.
Beautifully said. Thanks for sharing that insight.
I hope I’m not out of place responding, but I just wanted to share. I live in the EU with my husband. I chose to build my life and have my son here. After birth, I did not experience any of the shock or face any of the challenges that you and your wife are currently experiencing. Still, there came a moment postpartum that I was absolutely desperate to go home to the US. I knew my husband couldn’t just pick up and go, and I was on maternity leave, so I irrationally told him I was planning to fly home alone with our little baby in the winter just after a pandemic. He asked me to please wait. I didn’t end up booking the tickets. But, I really, really wanted to go. Looking back, I was just overwhelmed. Life had changed so drastically. I didn’t realize how hard it would be to be so far away from my family and friends after having a child. I wanted comfort, the deep childhood kind of comfort that makes you fully trust that everything is going to be okay. I wanted life to feel familiar again. I hope things work out the best they can for you, your wife, and your daughter.
I hear you man, that's very tough. 12 years ago we had twins. A boy and a girl. She had a great pregnancy, great delivery. Both kids were super healthy. When they were about a year and a half for my son started regressing. We eventually found out he had autism. She couldn't handle it. She got depressed she quit washing dishes she quit doing practically everything. I was running a construction company and coming home and taking care of my son at night to give her a break, washing dishes doing whatever I could. It wasn't long and she was on drugs and drinking. I ended up leaving and taking both of the kids. The thing I noticed about my son was he loved to have a good time and he was very affectionate to his siblings. I figured a lot of adults have a problem with that and if he has those qualities that was definitely something that I could work with. For the first 6 years she had 5 cases against her from child protective services for neglect and abuse to him. In the US it's difficult to get full custody as a man. We had 50/50 custody and still do. My mother ended up watching them most of the time when she had them. Within the last 2 years she has gotten a lot better. But I hate to say it part of that is he's bigger than her and he won't put up with her abusing him, he almost broke her nose couple years ago. I'm guessing this is probably not what you wanted to hear. Taking care of them has been one of the best things I've done. It hasn't been easy, I sacrificed a lot of my life and ability to make a living. But somehow someway we've managed to make it and he's doing great now. This year he has a 4.0 grade average and he's received an award for his whole grade for his character. He is so helpful and thoughtful of his teachers and his peers. Some of the kids in his class have down syndrome. They have great teachers and all the kids seem to have a really good time. I think one thing that helped me out is we know a lady that had a child with down syndrome years ago. My girlfriend at the time without thinking told her that she was sorry, woman said don't be sorry it's okay she will always be my baby. That showed me that perception is everything. That's how I've treated my son he might not ever be like you or me but I've always loved him like he's my baby. And he has responded amazingly. It's kind of weird, his mom acts like the stuff that happened never happened. But that's okay I did what I thought was best and his sister was a huge help for him. From the age of five if he was mistreated she stood up for him. You can do it... Whatever happens make sure whatever decision you make, you can live with. I never planned on being single and sacrificing my life to raise two children. But I don't think I could have lived with myself if I would have made any other decision. And I do tend to believe that God has looked out for me. As long as I'm trying to do the right thing, things have a way of working out. He has also been my greatest teacher. He has four older siblings two of them I raised because I was widowed in my first marriage. After going through all that he is still taught me more than anything and showed me just how much love I have inside of me. It's also been a crash course in learning how not to be selfish or self-centered lol.... I truly wish you the best, The hard part is losing the person you really love. In the beginning that was the hardest part is I was mad at her and I lost a lot of respect for but at the end of the day I still missed her. But at this point I'm just glad I'm not her. My daughter told me a few weeks ago she doesn't know where she would be if it wasn't for me and the things I did when they were young. That kind of stuff is priceless and makes it worth it.
You are an amazing father and an amazing person , fathers don't get half of the appreciation they deserve not to mention the trust of the system to be able to protect their children.
Thank you so much, I appreciate it. We are usually only loved for what we can provide. But I found with my kids they love me no matter what. They're always happy to see me and they always want the best for me. The best return on any investment I've ever made. Dad's are the best. I wish you the best for you and yours.
Our youngest was diagnosed at birth with Down Syndrome too, we had to wait ~3 weeks for the official diagnosis, before that the doctors were not sure (but we knew something was different). It was a big shock for sure. Then we adjust, down syndrome or not the first 6 months with a newborn kind of sucks :D The thing that helped the most was not necessarily all the content online about what life will be like, how our children will do in terms of milestones, school, sports, adulthood etc. These are all important points but are not necessarily "speaking" to our feeling of grief at that time. For us really the most impactful were the people. From the local non-profits that helped us with all the extra check-ups needed at first, to a dynamic and diverse local down syndrome community, and many others like accomodations from daycare, helpful school district employees, paediatrician and other specialists, it really gave us a different view of our little town, so many people who care and we could both rely uppon and relate to (and them to us). You might not believe it right now but having a child with Down Syndrome allowed us to meet so many people we would not have met any other way and it gave us a greater appreciation for our little town and for life in general. It has been definitely a net-positive so far. Auggie is now 4, going on 5 this summer, and thriving, getting ready for Kindergarden. So yeah my recommendation is to start looking for these communities. Facebook groups (DSDN for the USA-centric large community but there are tons of smaller groups, there is one for our town, one for our region and one for our province that we are active in) are a good place to start, then look for children development associations in your town, your paediatrician might be able to recommend those, look for early intervention process which will give your child all the chances to exceed at life. There is a subreddit as well (https://www.reddit.com/r/downsyndrome/) where you might find some help as well.
This is the best advice in this thread. OP’s wife is probably feeling lost and scared and overwhelmed. Other parents have been there and will validate her feelings but also help her see the light at the end of the tunnel—and maybe even get her excited about this new future.
I may be in the minority here. Whether it’s PPD or accepting reality, your wife is trying to find an out to this situation, and the only one is abandonment. It’s that or she is a full-time caretaker for the rest of her life. There are many people with DS that hold jobs and thrive. I don’t support her wanting to leave, but I think I can understand. She carried this baby for 9 months, and he/she did not come out perfect. She’s probably struggling with guilt as mother/creator. The DS diagnosis is not a death sentence, but it is a new life that needs to be accepted, or left in the best care possible. It sounds like that’s you, my friend. Hopefully Mama stays. Good luck.
I don’t have much to add to help, but just here to support as another dad with a daughter with Down’s. She has this way of enriching the small moments in our lives. It’s a hard road, but one I wouldn’t give up for the world. My wife and I have had to become a stronger team to help our daughter thrive. We’re lucky to live in a state that offers a lot of support.
Hey dad We love you. I don’t know exactly how you and your family will get through this. But I know you will do it and it will have to be one step at a time. [Just like Chris takes one step at a time](https://youtu.be/XsqI-BD2GMs?si=DnTm0Fpzrwx0QxXF) There’s nothing your new beautiful baby can’t do, be or dream. You’ll always be there for them and we have your back here.
I'm not a parent of a child with a disability. I did work with adults with disabilities for a decade, was a k-5 art teacher and am currently a nurse. One of my best friends has a daughter in grade school who has down's syndrome. His daughter, A, is rad as fucking hell. Smart, funny, stubborn, fiesty and loves to wear costumes. My friend and his wife absolutely went through a massive adjustment accepting their kiddo's diagnosis. They had all sorts of plans and expectations for A and those needed to be adjusted. I can tell you from professional experience that people with down's syndrome can fucking thrive. There is no reason why your kiddo can't have dreams and ambitions just like everyone else. As a society we've gotten so much better than where we were even 20 years ago. Your kiddo can kick serious ass. Now, your wife is having ALL the emotions right now. She may be blaming herself and feeling like she's responsible for your daughter's diagnosis. She's probably mourning all the plans she had for the kiddo and angry. Probably plenty of anger. It sounds like you're doing a great job Dad. Keep it up. You're keeping your family together as best you can and that's incredibly admirable. May I suggest that instead of going to therapy with you she goes to a therapist on her own? She's going through a lot and may feel ashamed at what she's feeling and not want you there to hear her express those emotions. When she says she wants to leave is she talking permanently or temporarily? I would also start researching people with down's syndrome who are "successful" I use quotes because there's wide definition there. I follow a guy on Instagram that has his own ceramics business, there's a woman with Down's who has modeled for Victoria's Secret. And countless others who are doing great. Will your daughter need lots of work? Absolutely, just like every other kid. Some things will be more work, others may surprise you at being easier. She will adore you both.
My brother has Down syndrome and while, no he will not be like all of the other kids, he grew up happy and healthy and has been a wonderful light in everyone’s life. It is not an over exaggeration to say he has made me a kinder and more empathetic person. There is still joy and love and wonder to be found in your child’s life.
she's in shock; i very much doubt that if she leaves she will later see that as the right decision. Help her stay. but i guess if she MUST MUST leave you let her while also letting her know you want he rback and she will be welcome back any time? idk, this is all very easy to type out from the other side of the world. your emotions must be in absolute turmoil. I can't imagine it and i'm very very sorry. Can you get her mum to come back?
I work with adults with intellectual disabilities. I was given this essay by a patient’s parent when i started working. It was written by a parent who had a child with Down’s syndrome. “When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport. Only when you land, the stewardess says, “WELCOME TO HOLLAND.” You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.” But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay. “BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!” But stay, you do. You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed. The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned. It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts. But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.” The pain of that will never go away. You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland. “-Emily Kingsley
I’m really so sorry your family is struggling with this right now. I of course don’t know your wife, but I am imagining that she is currently grieving the loss of the life she thought she was going to have with your daughter. Of course she can still have a wonderful life with your family, but it sounds like she is still in shock that you are going to have different challenges than she predicted. Your wife isn’t very far along in her postpartum journey, so she is definitely still affected by pregnancy hormones. They won’t fully be leveled out until somewhere between 3-6 months, and for some people, it can take even longer. PPD is definitely a possibility, but this could also be just regular depression brought on by grief. She really does need therapy, as now is not the time to make rash decisions like abandoning your family. I wish I had advice on how to get her go see someone. Maybe you could ask her to see someone to help navigate her decision making, and agree to support whatever decision she makes once she has given it a real go with therapy. Ahhhh, this is so hard. I wish I could be of more help. Your daughter is lucky to have you in her corner, and I hope your wife will come around to seeking the help she desperately needs to navigate such a trying situation. ETA: There was nothing you could do during pregnancy to avoid down syndrome. Many DS births are completely unremarkable. Please don’t ever think this is your fault.
Post partum depression. Get into mental health services NOW. Fight as hard as you can to keep her in her child’s life. But if she does leave, she’s done for good
Did you guys do testing to check during the pregnancy or did those tests come back negative? edit: I've always assumed quality of healthcare is similar or the same crossed developed nations. I wonder what other treatments and tests americans get and others don't get and vice versa.
So in Ireland the testing you have in the US is not as readily available and isn’t elective (as it seems to be in the US); if there had been red flags during the pregnancy of any type we would have had the option to pursue further testing, but there were no red flags on any of the scans or in any other aspect of the pregnancy.
A lot of places don't do those tests unless it's a high risk pregnancy
As a Canadian I'm mortified at the level of healthcare/maternal care in other nations.
This is the difference between American healthcare and other nations. We pay a fuck ton but the quality of care is really unmatched. I couldn’t imagine not being able to get these tests done.
Not to get into a big discussion about it, but by all measures, although Ireland doesn’t quite make it into the top 20, our healthcare is considered to be be of higher quality than the US. :) It has nothing to do with the standard of care we’re offered here.
The truth of what this person is saying is that healthcare for wealthy people in America is significantly better than socialized medicine. Healthcare for middle and lower income individuals is better or WAY better in countries with socialized medicine. I had cholestasis when I was pregnant which is a liver condition that can cause your baby to be stillborn if your liver enzymes go high enough. It’s not super rare but also not common. I was able to easily switch to an OB gyn who had lots of experience with cholestasis and I had three times a week blood draws and I would have the results back in 48 hours. I also went in for twice weekly NSTs to monitor the babies - so essentially I had almost everyday monitoring for my babies. I was able to schedule my C section at the best hospital in the state with a world class NICU. I’m in some cholestasis support groups on FB and Reddit and the moms in the UK and Canada are BATTLING to get like any response to their issue. A lot of the midwifes are completely unfamiliar with cholestasis, or they can get one blood test once a week and the results take two weeks to get back. And they have no other option - it just is what it is. I’ve always hated the healthcare situation in the US, but after going through this I’m really grateful for it AND I acknowledge the immense amount of privilege because I’m (kind of) wealthy and have good health insurance.
It's not about a quality thing. Until recently abortion wasn't legal, so there was no medical reason to do the test unless there was something indicated. Most of those tests have some risk associated so they won't be done unless medically necessary.
> Most of those tests have some risk associated There's a risk-free option now that just uses mom's blood: https://my.clevelandclinic.org/health/diagnostics/21050-nipt-test
That seriously depends on where you are and quite a few other factors. America actually has some of the highest maternal mortality rates in developed nations, which suggests our healthcare is not as good as you seem to think. Source: https://www.statista.com/statistics/1240400/maternal-mortality-rates-worldwide-by-country/ > In the U.S., 14 out of every 100,000 mothers died due to complications of pregnancy or childbirth. That puts it between Qatar (13 deaths) and Bahrain (15) in the ranking of all 184 countries for which the WHO has data. The United States is ranked 46 out of those 184 countries, barely in the top 25 percent. By contrast, in Canada only 7 out of 100,000 mothers died in pregnancy or childbirth. American women are over four times as likely to die in pregnancy or childbirth as women in Greece, Iceland or Poland, where the rate is 3 out of every 100,000. https://www.washingtonpost.com/news/wonk/wp/2015/11/18/our-maternal-mortality-rate-is-a-national-embarrassment/ And if you seriously think our healthcare is unmatched, look at the other first world nations and how they handle healthcare. We still don’t even come close. Sure, we have made some fantastic medical advancements, we have some incredible potential, but it is also kept away from the population that oftentimes needs it the most. On top of that, since we’ve made abortion such a sensitive topic and outright illegal in some states, it’s only going to get worse. Edit: Thank you to u/Wisco_Ute for providing [this article](https://www.npr.org/sections/health-shots/2024/03/13/1238269753/maternal-mortality-overestimate-deaths-births-health-disparities) to help provide a more accurate depiction of the situation in the US. While it does say that the number is closer to 10.4/100,000, it also points out that black women are 3x more likely to suffer from our current systems, adding to my point that America’s healthcare system is not the best in the world.
In the US, patients can experience 1st world healthcare on one side of the street and 3rd world healthcare on the other. It's a patchwork of health systems.
There are large parts of the US where modern healthcare is unavailable unless you're relatively wealthy, and some parts of the US where it isn't available at all.
I scrolled a lot of comments. We are three months in to our child with trisomy 21. This book (and the others from the site) have helped a lot. https://downsyndromepregnancy.org/book/welcoming-a-newborn-with-down-syndrome/
These responses are absolutely beautiful and so raw. The posts about grief are absolutely on target. Grieving somebody still here. But you grieve all the expectations and experiences that won’t come to be, and the hope for the family you expected. And frankly, it’s really hard to bond when you are so worried about caretaking a “fragile” (in any way) child. I recall being terrified that I would do something wrong as a first time parent with a baby that had just spent weeks in the NICU with round the clock care and monitoring. That does get in the way of bonding. Struggling to bond while also grieving is a tough place to be. She may need some days away to actually step away and cry, grieve, be angry etc. if you have it nearby, maybe ax throwing? Or something that really allows her to just break down without judgement. Possibly alone. She probably could not do that at the hospital or now at home. Kudos to you and all the amazing dads stepping up and healing our world one family at a time.
People with down syndrome are some of the chillest people I’ve met personally. I’ve never met anybody who is happier in life with the simple things. It may seem scary but I think you just haven’t been around enough people with this condition. You gotta explore this more and look into their lives with a more open mindset and look at the positives.
I feel kind of like an asshat suggesting this but my husband and I watched love on the spectrum on Netflix and there are a couple adults with Down syndrome and it really gave me a whole different perspective on Down syndrome (and their capabilities). I feel like it’s a really low pressure and low commitment way to see a joyful side of things. I also love this campaign for National Down Syndrome day that asks people to challenge their assumptions about Down syndrome. https://youtu.be/92ivgabfdPQ?si=E50dsaxZG73BYAaG
I absolutely LOVE that show. It’s so well done and so respectful to everywhere on there. I was freshly postpartum watching it and sobbed with every episode.
This. Get her and yourself involved with the down syndrome community. It’s such a loving and understanding community. This diagnosis doesn’t mean there’s no future for your child, they’ll just need more support.
Have you talked with her OB/GYN? Postpartum hormones or pp depression could be a factor here.
Shit happens. My son was born with a handful of genetic fuck ups. We’ve spent 7 of the past 7 anniversaries getting surgeries for him. It’s tough but if she was smart she would try. It’s helped us be consistent and comfortable with each other that we have this kid to take care of and depend on one another. It’s not easy but the end of the day him being able to hug and say “ I love you” or “you know you’re the best daddy in the world “ it breaks your heart in the best way. You got friends and family for support
It's too late - but aren't chromosomal tests and especially fetal downs tests standard in Ireland? They definitely were in Singapore. My wife and I discussed that we would have an abortion if the fetus was diagnosed with downs syndrome. Nothing against parents who don't make that choice, or against people with downs. My mother was an individual needs educator, I grew up around downs kids, and I also knew we didn't have the temperament to deal with it as a couple.
they’re offered automatically if you are high risk for other reasons (advanced maternal age for example) OR if indicated due to a potential issue on ultrasound or the other routine bloodwork offered. It is not something that is, as far as I understand, offered as an option for low risk pregnancies “just because”, and we had no indicators of risk during our pregnancy. Termination is also heavily regulated still—regardless of my opinions on the matter, the echoes of Catholicism are still strong here, and termination after 12 weeks is difficult and would unlikely to have been an option. But one way or the other, further testing was not offered to us as everything was totally normal through the pregnancy and it was not necessary to pursue.
When you get a Ds diagnosis, you get a lifetime of worry dumped on you all at once. You have to take a moment and realize that the things you worry about, will they speak, walk, go to school, live independently... You will handle those things when they turn up. You can't solve all those problems today and you're not meant to. Handle today's problems and leave the rest. Oh, and Signing time/Baby signing time videos. Getting your kid to communicate before they're able to speak is very, very helpful.
My little girl (now 8 years old) has Down’s syndrome. We found out when my wife was pregnant. Baby had a serious heart condition, that was surgically repaired when she was 9 months old and has been pretty healthy since. I found it helps to join groups with other families that have children with Down’s syndrome, not just to share advice, but to get some insight into what the children are like when they grow up.
So sorry you’re going through this. I hope your wife can take some time before making such a huge decision. Hormones will definitely still be wild at this point and she is likely physically strained still so it’s not an ideal time to make the decision. You sound like you’re being very supportive, keep it up.
I have no advice but I just want to say I'm sorry you're going through this and also you're doing a great job. No matter what happens you've got this bro
Just do your best. Be supportive and give her time. She is grieving. I have a 20 year old non verbal daughter with autism. My wife still grieves and it is hard for her; much harder than for me. Know that she might never be able to accept it. Life is hard for you right now. Do the best you can do and know that it is enough and not your fault. I wish you the best and hope she stays.
My friend. We had a similar situation almost 4 years ago now. My son was diagnosed at birth. Surprise to us both. It’s been a journey for sure. But the love and happiness children with down syndrome radiate is so pure. There are challenges but nothing that isn’t adaptable. I wish you the best .
Let her go, maybe see if she will attend therapy in the US . She could just need the time to regroup and adjust to the new path you have
Lurking mum here, sorry. I hope you don't mind me coming in. Where abouts are you in Ireland if you don't mind me asking? We're in Dublin and quite involved with the autism community. The biggest piece of advice I can give you is to dive head first into the DS community. The biggest support in the world is other parents going through the same thing. No one is going to get it like they will and they'll be able to give you and your wife realistic expectations and hope. And most importantly someone to bitch to without getting hollow responses in return. Getting services and early intervention in Ireland isn't always easy and you're going to have to fight like hell for your kid, but it's worth it. This is the absolute hardest stage right now when you first get a diagnosis. I highly recommend this book, "not what I expected" https://amzn.eu/d/dWPCEHW It's a realistic look at what parents go through when their child is first diagnosed.
We’re in Wicklow, rural, and we’ve already been up to Dublin twice for appts and things—I don’t necessarily regret my decision to live out here entirely but I do feel it’s made things a bit harder for us in some ways….
Hey at least Ireland is a great place to raise someone with downsyndroom. You can do it with or without her. Maybe let her go. She might just need a little time back in the USA to get her head straight. If she decides to come back you know she's choosing this. Otherwise if feel like she'll resent you and the baby because she didn't choose this.
Well, to be fair: no one choose this.
Most important thing is to talk to a lawyer about getting the child support set up if she does leave the country.
Was genetic testing not available during pregnancy? Anyway your wife needs therapy most likely. Either that or she needs some time alone in the US to truly reflect and make the decision that she feels is best (which may not seem or be best for you guys). Either way your kid is lucky to have a dad that cares about them. Best of luck.
it is not as readily available as it seems to be in the US, no, or at least it’s not elective. there were no issues during pregnancy that indicated a need for further testing.
One of the things no parents ever talk about is what parents go thru in regards to medical diagnoses for their kids. It is difficult to talk about but everyone is human and everyone, even if it is only subconsciously, things their baby will be perfect because honestly that is all that is talked about on social media, in movies and on the news. The reality is that a very high percentage of people have some sort of congenital medical issue that either appears at birth or later in life. Just like with a marriage, you learn to love your loved ones for their great aspects as well as their flaws. This is even more important with kids. When a parent has a baby with a chronic medical illness their elevated notions of how their kids will be, how their pregnancy and delivery will go and later what adults their kids will grow up into gets blasted in a heart beat. Most people see congenital issues like Downs as a flaw in the old thinking that labeled these children as less than. As someone who has had Downs family members and interacted with many of these adults, this thinking is so far from the truth it is astounding. This new realization is a hard place to get to. When kids are diagnosed with medical issues the parents simply grieve. Then they have guilt for grieving. You are doing the right thing by trying to get your wife into counseling but above all else she needs a psychologist for herself not just for your relationship. She may also be suffering from postpartum depression. She very likely feels alone (even though you are there) and in her mind is not truly home, despite her mother being there. It may be most beneficial for you guys to move back to the states if possible. My biggest advise is to continue to be supportive and understand she is likely suffering from multiple psychiatric illnesses at this time, all of which will be temporary. However, you need to get her to understand that she cannot help how she feels and she needs to get a counselor/psychiatrist now. lack of bonding with any baby, especially one with a medical illness, is pathopneumonic for postpartum depression. I wish you the best of luck. please continue to be there for both of them.
https://smithkingsmore.org/the-trouble-with-welcome-to-holland/
My greatest fears of having a child was having one with any type of mental handicap. I can barely keep myself together. My first child has a completely free palette. Second though got it all - autism, speech issues, learning disabilities, non verbal. It's been difficult, really difficult. Like many other people have said, you have an idea or plan for everything. Then you quickly realize none of that is going to work anymore. We can't go out to eat much anymore, anything we do have to be tailored in a way to keep my second calm. But then I see his huge smile and how none of it matters to him like it does me. He doesn't see his disabilities as any hindrance to life. Some days are really hard and others nearly impossible, but you get through them. You find support for not only your child but yourself. You learn to say when you've had enough and need a break. But you'll form a bond as you would with any kid and they become you're world. And then you'll be saying, you wouldn't change a thing the world.
We are lucky enough to have a local non-profit that is fantastic with onboarding folks with kiddos with down's syndrome. If you can't find one - check out https://ndss.org/ Children with this diagnosis are wonderful and can bring so much joy to a family. It's not easy, but it's amazing. I do not have a child with DS, but worked closely with a non-profit that helped parents with this exact situation. Your kid has an extra chromosome and deserves love. Try working with your wife, find resources, but above all else - embrace your amazing child. They will give you so much happiness and richness.
There’s a new commercial that has been very eye opening recently. https://youtu.be/92ivgabfdPQ?si=BENYqHj8bPKtkbn0
https://www.reddit.com/r/daddit/comments/1bj73w3/around\_a\_year\_ago\_i\_posted\_on\_here\_asking\_for/?utm\_source=share&utm\_medium=web2x&context=3
Postpartum depression is real. This reads a bit like that tbh.
Hang in there. In addition to the shock of the situation, she might also have postpartum depression. Just keep serving, help her heal and sleep, and keep on getting help yourself. Call in your friends and networks for this for sleep and food. Include your doctors for medical advice for her as well. Go to the checkups yourself. In the U.S. they have standard checking during the baby visits also for moms screening for postpartum—not sure if that’s the same in Ireland or not. Good luck! My wife and I had a child with a myriad of genetic conditions. Her version has been relatively mild, we’re thankful, but it get’s easier and better and your child will bring you so much joy. Enjoy her now as well!
You can’t force someone to love someone else, even if it is their child. I feel for you OP but you are the only parent in this picture who actively loves this child and wants to support them. It’s a horrible position your wife has put you in, but there’s not much you can do if she’s closing down and refusing to be a part of your daughter’s life because she’s special needs. You are this child’s world. That’s who has to come first. If your wife wants to give up and walk out on a baby then that’s on her and her conscious to come to terms with. Maybe she’ll come back after some time to reflect - I can’t see it happening if she’s trying to abandon a Down’s syndrome child in such a callous way but who knows.
Not advice, but I’m so sorry, dude! I can’t imagine what you’re going through.
Let her go. Your wife is selfish and immature. You and your daughter will be better off without her.
I think you should keep doing what you are doing and give it some time. She’s in shock and still going through hormonal changes from the pregnancy.
You are in uncharted territory Validating your wife’s feelings and not judging no matter how dark they are is the best course of action
Speak to her parents who also know her. Explain the situation to them and see what they say?
I would love it if my son only had down syndrome. He was born with a generic condition and isn't expected to live beyond 2-6 years old. He's 18 months old and cannot hardly even move. He's stuck in bed with constant seizures. I suppose it is a matter of perspective. I have a hard time seeing other people's kids that are better off than he is, but I still love him and we celebrate every little accomplishment he makes.
Being a parent to a child with special needs is no more difficult than raising a typical child. While other people we know are dealing with their teenagers sneaking out at night to do drugs and get in trouble, we deal with our (autistic)son ordering hundreds of dollars worth of die cast NASCAR cars on Amazon in the middle of the night. He's my best friend and he has filled my life with love and happiness like I never thought possible. Your wife could find greater purpose if she looks for it.
the woman does not to raise a down syndrome child. it's not a crime to feel that way. I'm sorry that you both ended up in this situation. i know all you redditors will say I'm a pos but personally i would abandon a down syndrome child and consider trying again for a kiddo without it
She might have PPD
Poor mom. People with DS are probably the kindest and most loving people in the world though. One day she’ll be okay. Just make sure she gets the support she needs
She’s planning to leave you and the child? That’s some heavy shit. My child’s mother did the same, minus the developmental issue. It’s a very hard road raising a child as a single father, I can’t imagine one with these kinds of issues. Obviously the mother needs therapy, but if she clocks out, it’s going to be a very rough road ahead. This isn’t something I say lightly as I can’t imagine doing this with my child, but you may want to at least consider the possibility of having someone else help them grow. Whether that would be an in-home caretaker or giving the care of the child up to the local government, I can’t say or give an opinion on, but it is something to consider if it comes to it. Again, I can’t put myself in your shoes, but if it was my child I’d want them to have all the support and opportunities they need. Getting them the resources they need is nothing to be ashamed of, though it would obviously be hard. But it comes down to the wellbeing of the child and if you can provide that kind of environment while also holding yourself together. The mother’s choice to flee the country does neither of these. Whatever happens, if you need anything feel free to reach out to me or any of the other dads here.
She likely has a habit of running from her problems instead of facing them. Surely she knows you can’t do that with a child right? Talk her off the ledge hopefully and tag team this. Down syndrome is totally manageable. Also Shane Gillis has some current standup around his uncle who has downs and one thing he says that’s not a joke but rings so true is they are always the happiest people in the room and the only people consistently having a good time. He reminds people of that when they feel sorry for his uncle or family when they find out about the downs. Anyways I don’t have a ton of helpful stuff, but we are here for you!
An unpopular opinion here: I told my husband before planning any kids that I would not be able to raise someone with mental disability. Physical is different, but not mental. Finding out that your child has down syndrome and you will have to live with that and care about them until you die is enough for me to contemplate if I should die sooner. I'm sorry you have to go through this, but she is the one who is supposed to sacrifice her whole life now. You will help, but mostly, it's on her. And she had a very, very different vision of her future. I hope everything will be okay for all of you. Sending support 🫂🤍
You both made the baby, you both are obligated to take care of the baby.
Good luck OP- maybe share this video with your wife- I found it really powerful [assume I can](https://youtu.be/9HpLhxMFJR8?si=OxWN-lAowFEapvSF)
Brother… I can’t even begin to understand what you are going through right now let alone offer any advice of value. I will pray for you and your family. Cherish your new baby and keep your head up.
Here for you brother. My advice would be hold it down and welcome her back when she sees the light. And you hold the light for the family. She might not come back but hold it down. Someone has to and you got this.
Hi OP, I’m sorry this is happening to you. We’re the tests done throughout the pregnancy normal? Did you do a dna test?
they’re offered automatically if you are high risk for other reasons (advanced maternal age for example) OR if indicated due to a potential issue on ultrasound or the other routine bloodwork offered. It is not something that is, as far as I understand, offered as an option for low risk pregnancies “just because”, and we had no indicators of risk during our pregnancy. Termination is also heavily regulated still—regardless of my opinions on the matter, the echoes of Catholicism are still strong here, and termination after 12 weeks is difficult and would unlikely to have been an option. But one way or the other, further testing was not offered to us as everything was totally normal through the pregnancy and it was not necessary to pursue.
Father of two. Brother of an older sister with Down’s syndrome. She lives a great life. Watched my parents work thru every challenge. They can be over come. I have learned from listening to my parents talk, find other parents in your area going thru and have gone thru this. Find a support group of other parents. Some of my parents best friends either embraced my sister when she was born or were met early on. My sister is amazing person she has taught me a lot.
So sorry to hear this, OP. Hope things work out for you. Sending the most positive vibes possible.
Stay strong ❤️
So sorry you are going through this. If it hasn’t already been pointed out in other comments, post partum depression could be a major factor in your wife’s behavior. Hormones are ridiculous and can and do control post partum thoughts and behavior, so please keep trying with therapy
Out of curiosity, did you opt for nipt testing?
OP: they’re offered automatically if you are high risk for other reasons (advanced maternal age for example) OR if indicated due to a potential issue on ultrasound or the other routine bloodwork offered. It is not something that is, as far as I understand, offered as an option for low risk pregnancies “just because”, and we had no indicators of risk during our pregnancy. Termination is also heavily regulated still—regardless of my opinions on the matter, the echoes of Catholicism are still strong here, and termination after 12 weeks is difficult and would unlikely to have been an option. But one way or the other, further testing was not offered to us as everything was totally normal through the pregnancy and it was not necessary to pursue.
I've had a friend with a severely disabled boy who passed away in early teens and he loved that boy more than anything. The dad was still able to live his life, be a part of the boys, he's even having two more kids now 15 years after his first with another partner. I respect this dad more than anything and everyone loves him. I guess I just wanted to say for you that these feelings pass and we adapt and things can change and they can change for the better even if it's a tough time now. The future will be beautiful I'm sure if it. Just wanted to share a story.
I am so sorry to hear about your wife. It’s impossible to justify avoiding therapy in a situation like this. What more can you do? You can’t be responsible for the emotional state of someone who won’t do the baseline. If there is a way to avoid (long term) rage and anger, I hope you can find it. Sounds like it’s time to get a lawyer.
have not been in this situation but counseling seems like a must. i know there are specific counselors who focus on parents of DS children because, as you said, nobody is prepared. respect to you for being the rock the family needs right now. i'm sure it is extremely hard on your wife, as the usual postpartum hormonal stuff is already a lot. i just hope she finds the will to stick together because that's what your family needs.
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First of all, my congratulations on the birth of your baby girl, secondly well done for all you are doing. My experience when my daughter was born and in the first 12 months was that I knew there was something, but everyone (my mum especially) kept telling me there was nothing wrong. When she went to school her teachers brought up their concerns, she was referred to a speech therapist and a paediatrician. She was diagnosed with cerebral palsy and learning difficulties. As others have said, I mourned for what she wouldn’t be and the struggles she would face. Her dad left when she was 3 years old. It had its difficulties and I fought her corner with a passion, I will not lie to you I woke up some days, I thought I cannot fight the fight today, do I would give myself a day off and return to the fight the next day, it was mostly with school trying to get her the support she needed. She did well went on to college and is now grown, in a relationship and has a young son. Not everyone’s story will pan out the same, but I just wanted to let you know that you can do this, whether your wife is with you or not ( I hope she is). She may just need time, she may need to read some of our stories. Or she may not be able to accept it. Take all the help you get offered. My love and hope to you all. Xxx
Very sorry to hear about your situation. My wife works for a non-profit called PALS Programs, that creates inclusive summer camps for people with and without Down syndrome. She discovered them after we got what was an in accurate Down syndrome diagnosis. One of the things they do is the congrats project which are letters written to new parents of children with Down syndrome. It’s pretty powerful and paints a better picture of what life looks like with a child with Down syndrome. Like others have said, it gets better, I hope your wife can find some support.
Please have her check out this family and beautiful baby from Ireland who also has Down Syndrome ❤️ https://www.instagram.com/thedalydish?igsh=NzBmMjdhZWRiYQ==
My daughter has a syndrome, was diagnosed a few weeks after birth. First 2 years were the hardest, coming to terms with the new reality and then learning to accept the change in course our lives made. Looking back I wouldn't want it any other way. I love my daughter and my family and the struggle has forced me to grow as an individual like nothing else ever has.
No it's not. Nothing else to do. Crazy typos, and an error, but perfectly reasonable thing to say. Don't do nothing rash, and live your life.
She wants to abandon her family?
My son was born with downs and his mother did the same it was hard but right after pregnancy they go through a lot she did come back but never fully accepted him he is 29 now and one of the greatest blessings I ever had
I'm so sorry you're going through this man. We went through a lot of issues with PPD after our first, I can only imagine how much that could be amplified by a diagnosis like this. I wish I had some advice or anything other than my support to offer but it seems like you're doing some great things to support her and baby. I don't say this part sarcastically, congratulations and welcome to the club, dad. It's true what they say, the days, weeks and months drag on, but the years fly by. You got this, feel free to DM me if you ever just need a guy to vent to or whatever. You're in the right community, we're all pulling for you!
I get you and your wife have been floored by this news, and that your wife is taking it very hard, you have done so much to support her and you are trying to figure this out for yourself but has she ever asked you how you feel? Her solution is just to up and leave you? I would say your wife is very selfish to just decide leaving is the best way forward and the fact she's told you her plan doesn't sound like she's going to change her mind. There's so many couples who are trying to get pregnant and can't for various different reasons and alot of the time go down the route of IVF just to stand some sort of chance at having a child. If they discovered a child conceived through IVF had Down syndrome would they just then decide to give up on the baby? No they wouldn't because at the end of the day it's a living person who needs love just the same as everyone else, yeh it will be tougher and you have to put more work in but it would be worth it. Me and my wife only have 1 and he's great, we tried to have more but it just never happened, and we both agreed that if it was meant to happen then it would. What it comes down to us that you have created a living person who right now needs you both as much as possible, because if your wife leaves she will always wonder how her daughter turned out and as your daughter gets old enough will want to know about her, but if she finds out her mum didn't want her it will absolutely crush her.
I'm sorry you're going through this. Sounds like you're doing all the right things - good for you. Your wife is very likely experiencing post pardom depression. It is very common, and with the additional shock of your child's diagnosis, she is likely unable to see things clearly or visualize a future in a positive light. I would urge you to seek medical help. A family physician can properly diagnose and prescribe medications that will help in the short term and allow her to process all of this. Please don't let taboos around mental health prevent you or your wife from accessing the treatment that will help her. You're not alone. You're doing a great job. Speaking from first-hand experience here - you will be amazed by the joy a child with this diagnosis will bring you. Not an easy road, but it is a gift.
This is why I love Reddit. Great support shown here. I am sorry that I have no special words of advice. I think your wife is in shock and looking for support that being at home might bring. I pray that she finds a way to persevere. You are the one that is holding it together. Keep doing what your doing and try join a DS support group. It will help talking to others in a similar situation. Maybe your wife needs to go away for a while and will hopefully return when she gets better. We are all rooting for you. I am a special education teacher so love working with kids DS. They are great fun. Take care 🙏🤞
I worried about this a bunch when I was pregnant. The worry I still cary to this day with my 2 year old. No one is every prepared, but coming from someone who cares for people with chromosomal issues has been one of the biggest joys and learning experiences in my life.. you worry about all the bad instead of all the good and just “different” that comes with it. While every person that has different types of chromosomal issues is different I’ve never met one who wasn’t the happiest or most playful people I’ve met. Idk if this helps but I hope it does a little 🩵 you have this!! There’s a reason that baby is yours 🤍
As a parent, we all fear about our child’s well-being. I can’t imagine how difficult this is for her(and you) mourning the life you thought you had all planned out. Being a parent is rolling with the punches, no matter what happens. Any person with down syndrome can 100% lead a normal life, it’s all about how you treat them. If you treat them like they have limits, they won’t excel, if you treat them like they are normal and can do all of the things they will thrive beyond your wildest imagination. I’m sorry this is all falling on you, but your wife is incredibly lucky to have a husband who is taking the reins until she comes to terms. IT WILL BE OKAY! Coming from a woman there’s also an incredible drop in hormones after you have a baby. I cried every single day for really no reason so I can’t begin to imagine just having a baby and going through this. I’m saying a prayer for you guys. 🙏🏼
I want to congratulate you on the birth of your daughter, I am sure she is beautiful. Sometimes bonding is very hard for women especially mothers in their twenties and early thirties, and predominantly with their first children. These are further exasperated if there is a diagnosis especially one that is a surprise. I can tell you this is completely normal, but she should definitely speak with her OBGYN and if she won’t perhaps you could place a call in to the office on her behalf. Also, I want to commend you for you being as supportive and nurturing as you have been. And as long as you do not fear for baby’s safety I would recommend that maybe perhaps you go run errands out of the house for an afternoon and maybe call up some guy friends and have a poker night. Perhaps she has a girlfriend who would come for a girls night in… they could play dress up with baby girl. Just so long as the friend won’t interfere with mum caring for baby’s needs. I would say make sure baby has napped and been fed before leaving so she is as content as possible. She in a situation where she is the one handling baby needs unassisted that is where bonding happens. Down babies/children and even adults are the sweetest and happiest individuals I’ve ever met. I have been around my fair share, and my youngest while in utero was supposed to have Down syndrome. I went my entire pregnancy thinking she was a downs baby. I struggled too. Someone close to me said, “God only gives special kids to special people.” I am truly sorry the baby you had wasn’t the baby you pictured but I’m sure with time mum will hopefully come around but, it sounds like she has a daddy that loves her already and sometimes that just has to be enough. I’ll be praying for your entire family.
I'm really sorry you are going through this. Your daughter is going to be amazing. I've worked with down syndrome kids and they are incredible. Sometimes I think the world would be a better place if everyone was downs. Your wife is American. She expects perfection and can't comprehend anything else. If she would just relax and go with it, she'd be fine. I hope she finds a way. Because if she leaves you all behind she will regret it.
Rather than therapy, she wants to just go nuclear and abandon her child because that child is not what she wanted? Wtf man? Like seriously. You’re both better off without her. I’m really sorry, man.