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Just stumbled upon this post pretty late, but I just wanted to tell you that those are some beautiful words.
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This is great advice. Thank you so very much
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He was pretty damn happy fire the life he got dealt. He sure made me happy and our memories will forever.
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He was born with D'George Syndrome. This Syndrome caused him to have a heart defect called truncus arteriosus. He had to be intubated for an extended amount of time which led to chronic lung failure amongst other medical issues. When he was in utero, we were told to expect him to survive but a few hours. He lived for 5 years. Feel free to talk if you need anything. I'm always willing to lend an ear.
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Boy you're not kidding...
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I became a respiratory therapist because of him. He changed my life in so many ways. I am now a neonatal transport respiratory therapist.
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I'm so sorry for your loss. It's such a horrible, gut wrenching feeling. I will be getting a tattoo for his memory as well
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We found out he would be "terminal" last may. Since then we went on trips to take him to add many zoos and aquariums as possible. He loves animals. Specifically birds and dolphins. We went to Denver, Kansas city, Omaha, San Diego, San Antonio, Oklahoma city. It was the best summer I've ever had. We were fortunate that our community set up a go fund me and helped with the financials but I would have opened up 20 credit cards just to take him to those places. The beach and sea world was amazing. He was so happy those days
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This. Stay strong
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True, but you don't always have to be strong. It's okay to cry, to admit you're having a tough day or to acknowledge that you need someone to talk to or professional therapy. You need to grieve and trying to be too strong can hinder that.
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So say we all....
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Thank you. This poem has resonated with me. Thanks for sharing
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I said this poem when my best friend passed away in a car accident. I don't know what I would do if it were my son. Lots of love to you, OP.
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This has helped me almost every single death Ive had to push through. I wish I could thank Mary Frye directly.
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Definitely do. It made me happy to receive well wishes and encouragement from friends I haven't spoken to in years. Thank you for the kind words
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My wife had a miscarriage on her first pregnancy. That experience flipped a switch in her. I have always known I wanted to have a child, and she knew this. But, she was unsure of herself, whether she could be a mom. I never had a doubt myself, but she did. She took a leap of faith and decided we were going to start trying. She took a pregnancy test that immediately turned positive, and made an appointment a few days later, just a consult. The next appointment, we went in and were greeted by two little blobs, but one didn't look like it was going to make it already. The next appointment, the other sack had collapsed, non-viable. It was heart breaking for us. My wife, at that moment, realized that she did want to be a mom, she wanted that baby. So, after she got back on a normal cycle, we tried again and she got pregnant immediately this time as well. It took and we now have a 19 month old son who is the greatest joy of my life. My wife has become a wonderful mother and loves it as much as I do. It has also been a great joy for me to watch her in this transformation. I know it is tough, but there is light at the end of the tunnel. Keep going and you'll find the joy I have. Good luck to you, and Happy Thanksgiving.
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Hugs to you. I never really wanted kids, but my husband and I found out I was pregnant last year. Baby had no heartbeat at 7 weeks. The loss was so devastating and I couldn't figure out why, seeing as we didn't want children. But I'll be goddamned if we weren't so happy when we thought we were going to have a baby. The grief was so profound. We tried again a few months later, but same result. It's been a year and I still struggle with it. We can only conceive through IVF, but I honestly can't go through it again.
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Thank you for your kind words. I feel for your loss as well.
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That was very touching. Thank you for that. I became a respiratory therapist because of him and now work in a neonatal ICU.
2,731
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It's definitely a club I never planned or hoped to join. Thank you for the advice. It is much appreciated
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Thank you so much for sharing. Partly why I shared was to connect with others in similar situations. I don't have many friends who have lost a child. It's hard going through something when you feel so alone but the Reddit community makes me feel surrounded with love. Thank you so much
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The hells wrong with you?
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I pray you never know loss like this and that one day you mature enough to not get kicks from hurting people you don't know while hiding behind a keyboard and screen like a coward.
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Someone that frequents /r/the_donald... No surprise there.
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What a life you must have
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And please make backups of everything. Real backups, off-site, maybe a cloud service like Google Drive. If you need help setting it up, PM me and I'll help. I really like Google Drive/Photos for this, because it indexes everything, has face recognition and keeps everything organized, with collages and "your memories from this day". Sorry for you loss. Much love to you and your family, your boy will be in my thoughts and prayers.
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Would you mind talking about him? What he was like, things he loved Sorry for your loss my man
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As a father with two sons that have digeorge syndrome, this hit me hard. My oldest son has already had two heart surgeries and will be having his third in the near future. I feel like it's no big deal because how easy the previous ones went but deep down I know I could lose him.
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Our girl has a rare genetic disorder that causes an intense epilepsy that's extremely difficult to control. She's currently been in hospital for 3 months and is on 5 anti-epileptic drugs and a ketogenic diet. Long term prognosis is quite poor; there's only 6 cases of this condition documented internationally and the average life expectancy is 2 years. We will be moving to our regional hospital next week and hope to have her home for Christmas. We met a couple whose son had DiGeorge here a while ago so we got a small taste what it's like in the early stages at least. Edit: if anyone suggests cannabis oil to me I will lose the plot. Not anti drug or anything but it can't be got in Ireland.
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God bless you, man. As a dad of two kids with respiratory issues, I appreciate you.
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Fellow RT here. Just wanted to say that he looks like one happy dude. Looks like you had a positive impact on each other.
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That's cool man. I wish I could do transport as well but it's very hard to get into that here. Basically have to be staff with one of the big pediatric places. I haven't been in nicu for awhile now since I've been at a cardiac hospital for awhile my wife works a lot with neonates still. Have a happy holidays man.
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I think his smile is rad. Is he a model? No. Neither is mine and I think my kid is handsome as hell. Seriously though, I know you're just trying to be a troll, or edgy, or whatever excuse, but whatever's in your life that's making you lash out like this, I hope you find resolution to. We're here for you little buddy.
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What a life you must live that you have the audacity to bash a man that lost a precious life so dear to him. I hope one day you feel his anguish and realize what a unsympathetic dolt you were. Whatever is going on in your life that you feel the need to insult a child, i hope you resolve. That's no way to live.
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Fuck off.
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Thank you for sharing that. May those happy days and memories carry you through these tough times. They for sure will always be waiting and willing to put a smile on your face, just like your son did, and will always do. From a father of 3 boys to another, my heartfelt condolences to you and your family.
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From me, as well, and everyone here who's thinking or feeling the same thing but maybe not tapping it out. We're all very sorry for your loss.
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Strong.....hmmmm sure. Be that. But hold on to the love. This is what it all meant, what we all mean. If he will not be forgotten (which he won't his impact is permanent) it is not for not. We all are. <3 Ripples on ripples
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When thinking about that poem in the context of my children my first thought was "Yeah, but you can't talk to those things." And then I realized "You *can* talk to those things." Talk to him. Let your voice carry on the wind. Talk back to the rustle of the leaves. Talk to the rain. Talk to the stars. Talk to the quiet blanket of the snow. He will hear you.
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I really really hope that my wife and I are successful in our next cycle. The drive is funny isn't it. I am not sure if its a biological or emotional imperative but boy is it strong. I am so happy for you that you were successful. There is this deep dread in me that we will never get there :(
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We lost our first baby at 7 weeks too. We saw the heartbeat at 5 weeks, and the doctor said there's a 95% success rate when you can see the heartbeat. But that just wasn't the case for us. We took a weekend and mourned the loss for awhile. About a year later we had our firstborn, and we have two boys now, 5 and 3. But I still think about it sometimes and we talk about it sometimes. I think we're just carrying the memory of the baby we didn't have with us, in little ways. It's no longer painful for me, and I don't think it's usually painful for her, but it's not something you just shake off.
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I'm just surprised the mods haven't banned him yet. This guy's pathetic.
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He lived to be five years old. He had the cognitive ability of about an 18month old but time and time again he showed us how clever he was. He freaking LOVED movies. His three favorites were finding Nemo, Up, and Wall-E. He also loves those books that have the buttons on the side that makes noises. He was our little old man. He always wanted to stay home, play in his bedroom, and watch his movies. Being around people and outside was not his favorite things. His laugh made your heart melt because you hardly got to hear his voice due to the trache. He changed my and my wife's life in so many ways. He didn't even leave the hospital until he was ten months old. 4 surgeries and many many procedures, 3 and 6 hours away from home. It was so difficult adjusting to his needs but I would not change anything. He was my little boy
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Hope all goes well, man.
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I hope that if they're valve surgeries that all goes well...
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I pray for your boys and future surgeries. It's always scary no matter the expected outcome. Give them an extra hug for me and my wife please
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A bunch of tubes and medicine and medical care with a fragile broken body with organs that evidently do not work. If his brain worked it would of been hell realizing the difference between him and everybody else. Then he just fell apart and died, all in 5 years. Just a malformed life that died before it had a chance to develop. It's fucked up and sad and pitiful but that's what it is. But that child never got anywhere and I don't want it's life
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Damn, bro. Giving me feels at 5am. Edit: after further reading I am now crying
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This is beautiful.
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Don't give up hope. We had a lot of miscarriages trying for our second(10.. some 2nd trimester horrible d&c type stuff). We adopted a son in the middle of trying (long story.. from my 17 year old cousin) and then sure enough got pregnant and he made it almost full term but was strong enough to make it through an emergency c-section and graduate from a month in the NICU. Our first was pre-term and 1lb, 14oz. Spent 3 months in the nicu. Now we have three happy healthy boys and my wife is a nicu nurse!
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I friend's sister and her husband had trouble conceiving. They tried everything and finally got pregnant with twins. She went into labor way too soon, had the twins, and lost them shortly after birth. They didn't give up, kept going and had a son. About a year later, she got pregnant again, with no medical help, and had another son. It can happen. If you want it, keep trying. Even if it doesn't happen easily, it can still happen. Again, I wish you luck. It is my hope that you get to experience this wild ride called parenthood.
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Just when I think I've shaken it, it comes back. It's so weird. The worst is when I'm at work (I work in television) and see something heartwarming about children, or newscasts about children being abused, abandoned or killed. Trying to hide my eyes as they tear up has proven a challenge at times. I recently turned 40 and I can only have a child with IVF, and there's no guarantee. I just can't go through another failure. The first two were devastating enough. I'm so sorry for your loss, and I'm glad you and your wife are happy now.
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I was 6 weeks early and had to be in the NICU. I can't image the stress it put on my parents for the 2 months I was in there.
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Aww :( yeah I can imagine. I wish I could tell you to just go for it and that you'll be ok. But it's a lot to handle. Usually facing your fears is a good thing. But it's so much more at stake. Adoption might be an option, but the weird thing about it is I was pretty much dead-set against the idea of adoption until I had kids of my own and learned I could love the second one as much as the first. So, I don't even know if that's an option for you. At any rate, you can have a wonderful, fulfilling and meaningful life without kids. I wish you the best, regardless of what you do. And happy thanksgiving!
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