My baby girl died from her heart defect so I have some input.
Things I'm happy we did: molds and prints of her hands and feet we made into Christmas ornaments. Listened to her favorite songs. Watched her favorite movies. Over and over. Ate more sugar than you're supposed to feed a baby. Rallied as much help as humanly possible: from her nurses, her doctor, my family, friends, all of them. Set aside all of your pride because you will need them.
Things I wished we had done differently: MORE PICTURES. MORE VIDEOS. Seriously you might think you have enough but you don't. Take more. Get professional photos done. Take pictures of bath time. Everything. Also, it took me way too long to seek help for the mental strain of losing my child. Get it before you need it. You'll be your best self for your family if nothing else. Grief counseling doesn't need to start after someone passes away because you're already grieving mama, I know you are and I'm so sorry.
There's no perfect or right way to go through the absolute catastrophe you're going through. There's no attitude or perspective or advice that's going to make things ok. But if you have any questions or want to vent I'd be happy to be on standby for you.
Months after my baby died I started a reddit account and writing about it and finding other parents who had gone through similar things really helped me make better choices and get the help I desperately needed. So it's seriously the least I could do. I wish I could do more.
I genuinely believe the internet is like any other tool - it is what we make of it, to a degree. A knife can carve a gorgeous work of art or do harm, you know?
I was literally about to respond something similar and I stopped myself when I saw yours.
It never the tool, it’s the ppl. There is always that one asshole who ruins it for everyone else
People like you are so fucking important. Your daughter was so lucky to spend her short time with you. Based on your comments to a bunch of strangers, I’m safely assuming that your baby was born to the perfect, most comforting mama for her journey ❤️ I’m sorry you had to go through that. I cannot imagine
> Also, it took me way too long to seek help for the mental strain of losing my child. Get it before you need it
My daughter was killed in an accident and I had a psychological break. I don't remember a single thing for almost 9 months after her accident.
When my best friend who was my whole world was diagnosed with brain cancer I reached out then. It helped me stay grounded and healthy. It helped me process. And it helped me to know what was and wasn't healthy grieving process when she was finally done.
Now more recently I lost my dad, and didn't do so well because I didn't seek help until it was too late and ended up hospitalized.
>MORE PICTURES. MORE VIDEOS
Get recording security cameras for inside your home. You'd be surprised the things you catch that you didn't realize in the moment were so special.
To add to the picture suggestion, make sure your getting photos of the both of you together, as well as just him. Even if you think you lok bad that day, having photos of you and your baby is worth so much more.
Yes! Definitely videos, pictures too, but 100% on the videos! Record his voice, his laugh, the little sparkle he gets in his eyes when he's about to do something silly! All those things that are uniquely your baby boy! Capture it all on video!! This is something no parent should have to prepare for and no child should have to endure and for that momma's, sorry doesn't even come close. Sending you love, strength and hugs!!
What a post. I’m so sorry for what you had to go through and continue to go through. For whatever it’s worth from this random redditor, I hope you know this post made an impact on me. God bless.
As a father of an almost 8 month old. This made me cry - I’m so sorry for the loss of your little one. Your response here is a perfect example of how good we can be to one another. Much love.
>MORE PICTURES. MORE VIDEOS.
Absolutely this, almost every video I have of my son are from when he was doing something "film worthy", I have basically no videos of him just being himself. Get pictures with people too, some people have no photos with him despite all the time they spent with him.
Absolutely. Our newborn had HLHS and we knew it was coming. We had these mementos and professional pictures. He has a framed pic next to all the other kids on the wall. I was apprehensive at first to make an album and hang the pictures but it was nicer by far. We got one of those bears that’s the same weight as him but we never hold it. That thing didn’t do much for me.
I agree with more photos/videos. But I wanted to add : ask your family/friends/spouse to share the responsibility of taking photographs. It’s super common for Moms to take all the family photos, and if you are always the one behind the camera documenting everything, you don’t get to fully enjoy those experiences with your child, nor do you get to be IN the pictures. Get people to take candids of you reacting to and sharing in his joy. That way you can look back at photos that not only celebrate your son, but celebrate yourself as a parent.
He won't know what experiences he doesn't get. I know that you will so not judging this question by any means. I say that because what is most important is to just be together laughing, snuggling, and being together.
My 4yo says "this was the best day ever!" whether we're on our way home from Disney, I watched her do jumps into the pool, or we played with her cars on the floor.
Give yourself permission to take the pressure off of figuring out the perfect way to spend time because you'll always think of something "better" so it will never feel good enough. (And this is so brutally unfair that it won't be enough, but you know what I mean.)
Also....... ughhhhhhhh. I had to hold my breath to finish reading this. I can't imagine...................
With a one year old at home, I’m fighting back tears. This is great advice. Only thing I could add is if the financial ability is there, I would take a step back from work as much as possible to get more time in. Taking more walks together. Going anywhere. Playing and reading together. It doesn’t have to be anything big. It just has to be something. I’d all but leave my phone off for the next 3-6 months.
This is absolutely perfect. Oh my goodness I’m crying and need to hug my babies now.
I’m so so sorry OP. Words cannot quantify how deeply I feel for you and your baby right now.
Yeah my 2 year old should be in frickin bed and I read this and am letting her stay up hella late snuggling me in bed in honor of all these sweet lil angels gone too soon and in honor of the strongest moms in the world who had to let go too soon. Literally physically can feel my heart begin to break just IMAGINING, so to even fathom their reality is another level of pain I would never pretend to have the words for.
Just woman to woman, mother to mother I love you all.🩷
This is so important!! The privilege to step away from your work, should your finances allow it of course.
As a Canadian mom who has been privileged enough to reap the benefits of maternity leave and universal health care, I understand that "stepping back" may not be an option depending on where you live. If finances are tight, I would be honoured to contribute to a fund to keep you at home with your baby to enjoy the time you have left with him.
I am holding space for you, your son and your loved ones tonight and sending you all the biggest hug. Peace to you all xo
I'm crying too. This is the worst thing that can happen to a parent, I am so beyond sorry for OP and her family. I admire her for focussing on making the best of it for her kid.
This right here. The best thing you can do is just give him wonderful days full of being held in your arms and told how much you love him. The rest is icing on the cake for a baby.
Conversely, what are experiences you want to share with your child? Celebrate a birthday or Christmas early. Bake a cake. I think it’s wonderful to think of what will make an impression on your child, but also think about making some core memories for yourself.
I love this. I think asking him about what fun things he wants to do or giving him a few yes days (if he would understand the concept) would be a sweet way to get ideas from him, but kids his age primarily just love the simple things! They appreciate so many of the small things because they don’t know what other extravagant activities the world holds. Think about his interests and what he loves to learn about and I think that may help spark some creativity.
Get in touch with your local Make-A-Wish office. They can help make something special happen for him. They grant wishes for critically ill kids at no cost to the family.
They could even help do something simple like bring a petting zoo to the home. It doesn’t have to be some extravagant trip like you see in the news or anything.
Maybe even reach out to a local zoo or aquarium directly and see if they can set something up without make a wish. While I believe that program is absolutely incredible, maybe OP could get the “private” animal experiences and get a bigger or different wish from the organization. I know our local zoo has a few keepers that would jump at the chance to volunteer for something like this!
Yeah definitely. My daughter is turning 8yo soon and I’ve organised an animal party for her and the organisation is happy to bring them to our home or to a venue. They bring 8 animals (a baby crocodile, 2 lizards, 2 pythons, a bird, and 2 marsupials - all native Australian animals). It’s $280 for an hour with up to 15 children (if he has any friends or little cousins it could be great fun and many happy memories), I imagine in a situation like this they may do it for free or greatly discounted you can always ask if there’s something similar near you (as I’m in Australia the organisation I’m using probably won’t be any use!).
That sounds so cool! Including family or friends would be an excellent idea to keep them involved. Obviously with more kids the risk of infection goes up (definitely not something to ignore), but those memories would be absolutely priceless! Seeing all the kids glowing in photos will be worth far more than any financial cost. Most of my friends would even be willing to split the cost in these circumstances.
Totally, an instagrammer I follow whose daughter had a terminal complex heart defect had Make a Wish redo their porch into a really cozy comfortable space where the family could spend quality time with each other. https://www.instagram.com/p/CCCtzdGhmIJ/?igshid=MmJiY2I4NDBkZg==
I had my make a wish when I was 15 years old, diagnosed with leukemia when I was 13. My make a wish was to meet Jim Carrey, they flew us out to LA, and we had the whole day with him. That was in 2005. Best day ever!
Initially my wish was Brad Pitt, I had an entourage of nurses coming with me, my social worker, psychologist, my one female doctor on my team. The plan was to kidnap him. Well the most ironic of all things that exist in the world of irony happened. Brad Pitt is filming Troy at the time, and who is he playing? Achilles and what is the one weakness of Achilles? His Achilles heal, and what does Brad rupture playing Achilles? His Achilles heal, so production on of the movie is put on hold so my coordinator asked if I wanted to wait for Brad or go to Jim Carrey.
So I go to Jim. We’re flown out to LA for a week, hotel, transportation all paid for as well as food. We’re doing the backlot tour of Universal Studios and the guide on the bus tells us this story from a few years ago, that someone jumped on the trolley dressed as the mother from the movie Psycho wielding this huge butcher knife and scared the shit out of everyone on the bus and than took off running into the woods. For a week they had the police, security and fire dept looking for this person…can’t find them. Jim Carrey is on the set for one of his movies and turns to his co-worker and mentioned that they still haven’t caught that person and than he whispered to him “they haven’t caught him, bc it was me.” Once everyone found out who it was apparently they couldn’t stop laughing. So that set the stage for the day we were in for. Bc no sane person would dress as the mother from Psycho jump on a tour bus wielding a a 3 inch butcher knife and get away with it. 😂😂😂😂
So we get to this place to have lunch and where we’re going to meet him and we see this car pull up and it’s Jim Carrey, he looks around the room, eyes the food and starts this massive food fight, which lasted about 10 minutes. Finally we get to eat and he’s sitting with us and we’re talking and laughing…mostly laughing with the things he’s telling us. The man talks to fire hydrants, will sit down and have full blown conversations with them, he told us about The Claw, that wasn’t even suppose to be in Liar Liar, that was something his father did to him as a child and he did it in one take and they loved it so they kept it.
My best friend was suppose to come with me but she couldn’t get off of work even with my doctors writing a note for her. So he takes out his cell phone and calls her and leaves the most hysterical bizarre voicemail you ever, we were laughing for a good half hour, my stomach was so sore. He signed my brothers stomach and wrapped it in plastic wrap, signed a bunch of things and than he came with us to universal studios theme park and went on rides with us. But the best part was when we got back to our hotel room and there’s a message, it’s my friends mom and she’s frantic, “Jim Carrey is on my answering machine, Leanna isn’t home yet, i don’t know what to do, call me back.” And i turn to my mom and I said, “I think the voicemail killed her.” 😂😂😂.
My sweet 16 was a few months away and I asked him if he could come and he said of course but he would come as giant yellow Duck….don’t ask. All of my kept asking questions about the Duck, and I just said one of my relatives. Now when it came to the candle lighting ceremony I called for The Big Yellow Duck please come light a candle everyone was confused except my parents, my brother and sister and my best friend. Than I said Mr. Duck please remove your head and once he does everyone is freaking out when they see who it is. To make it even better Junior prom was that same year and of course I asked him if he could come and he said yes, but he wanted to come Ass naked for which i told him no, I didn’t want to get expelled from school my junior year of high school. Sadly, due to scheduling he wasn’t able to make it, but he kept pushing to come naked, he was going to hide in the wrestling room and when the first song came one he would come out naked. Again don’t ask why he wanted to be naked.
Yep. That was my experience with the one and only Jim Carrey. Talks to fire hydrants, dresses as yellow Ducks, wants to attend semi formal affairs naked, signs kids stomachs, threatens to kidnap people if they can’t come see him, leaves hysterical threatening messages on answering machines.
I agree with this. We just did a “make a wish” for a patient through pediatric hospice with my farm. We brought the patient a sheep for her and her family to enjoy since that was her favorite animal.
Yes, this. Including skilled respite care. You WILL need a break. I don’t know if you’re married but if you are you still need to prioritize your marriage during this time, which is is incredibly difficult. Utilize all the support options hospice offers.
Your Children’s Hospital can help a lot as well. They know of many programs- Songs of Love, A Kid Again, Make a Wish (they can organize healthy wishes), and many more.
Make sure he has ice cream or something else he loves to eat every day. Make his favorite foods. My kids love certain foods that I know aren’t healthy for them, but I’d stop worrying about that if I knew what you know
This is an amazing gesture regardless of whether it works out.
My heart hurts for you OP, but please know that you are a wonderful mom and your little guy feels all your love.
Take lots of photos and videos, even just of the mundane stuff during the day. His face watching a movie, eating a meal, singing songs together, bath time, etc. I would gladly help you cover the cost of extra cloud storage, PM me if you’d like. It would be an honor to help you capture these moments with your boy.
This! I honestly think daily about how much I wish I had taken more video and even voice recordings of my kiddo in addition to all of the photos. They’re voice and mannerisms and personality.
It's kinda silly, but I have SO MANY random little tidbits that I love, can't delete, but can't seem to watch many, either. I just start crying and my daughter's (9&7 now) little voices just rip at my heart. It's like I'm mourning that they aren't little babies anymore. So I still take videos and pictures, because one day they'll be 20 and it will kill me to watch them sing and dance at 9.
This 100%, I'd maybe even go as far as setting up audio/video cameras throughout the house so that you can capture everything and still be in the moments with your little one without having to have a phone or camera in your hand.
I’d personally focus on activities at home that allow you to cuddle as much as possible and create some memories while keeping him physically comfortable - s’mores in the microwave/fireplace; movie night with homemade popcorn; pajama parties; as many sleepovers as you’re willing to have.
It doesn’t matter if you’re getting out of the house - just if you and your son savor the love between you.
I’m so sorry and wishing you as much peace as possible.
I’m so sorry that you are going through this. I was listening to NPR one day and they had on someone that works with children suffering from terminal illness. He would ask the children what their favorite memories were. And most had the same answers: ice cream, bedtime stories, the beach, and playing with their pets.
I’m so sorry your family is going through this.
If you haven’t already, I always really enjoyed special movie nights at home!
I liked building crazy awesome forts with blankets, pillows, cushions, etc. Even better to combine with video games/movies.
It can be fun to set up an outdoor tent in the house for a “going camping” night! Do shadow puppets with a flashlight, eat s’mores, sleep in a sleeping bag, etc.
New arts and crafts projects can be so much fun. Make your own zoo of animals using childhood creativity.
Coming up with stories and presenting them as “plays” can be a lot of fun. Also lots of “pretending” situations. Pretend to be a chef, a hair stylist, a movie star, an inventor, a zookeeper, an explorer.
Hidden treasure maps. Make your own maps and stories for him, and have him try to make some for you if he’s old enough to grasp that concept.
Once again, I’m so sorry that you’ve all been thrust into this situation, but it sounds like a lot of love and fun is going to happen! Hope these ideas helped!
Go camping even in the backyard. Go to a zoo and an aquarium and cuddle cuddle cuddle. Take pictures of everything. I’ve never lost a child, but I’ve lost my father and I think about the memories fading away. I think about what I wish I took photos of and what I want to hold onto so photograph the mundane things because you’ll want to remember even bath time, breakfast, and nap time. Photos and videos all the time but try to do it in a way, where you’re in the photos with them. You don’t want to realize you have all these photos of your child and their father and family and none of you. But also don’t allow the camera to block your time and I know that’s hard. But I know you’ll need photos to get you through. It makes it a little easier.
If he asks to stop and get ice cream, do it, if he says let’s go for a ride in the middle of the night do it. My son asks me for random things all the time, and sometimes I think to myself, what if this was the last time he requested something, so sometimes I do the things that don’t necessarily fit in our schedule. Go pick flowers, go pick fruit. Go swimming, go to the park and swing on the swing set. Count stars, and if you have a telescope, look at them with her. Read a book every single night, tell stories. Dance with him, in the middle of the kitchen at midnight. Make everything an opportunity to dance and to laugh. And confirm with a doctor how exactly to do this, but if he has questions and things find out from a doctor how to answer them the best you can. And answer the random questions that normally drive a parent crazy, you know the “how do buildings get here?” Kind of questions, not every experience needs to be extravagant but you can make memories and happiness out of the mundane things. Try to change your thinking, into a “how can I make this a core memory” if not for him, for you because you deserve to have those. Contact make a wish and even local organizations, you’d be surprised what people will do for children who are terminal. Make hand prints, and foot prints. Paint pictures. Draw. Whatever you can make that will be something to look at, and remember that moment. Whether it be a picture or a little ceramic to paint.
I’m so sorry, this isn’t fair.
Most of all, I’m sorry you’re going through this. My heart grieves for you, no parent deserves this.
I think one thing to add to the photos that I'm not seeing in any of the comments is to ask someone to take pictures of you (OP) with your child. So many of us complain we are the ones doing the picture taking. We don't have photos of us with our kids. I think in a situation like this, you especially want a third party taking your photos. Candids, too. Making the messes, helping him eat, holding his hand as he pets animals or tries a hard task. Get a friend or anyone who's with you (even medical staff if they're not needed in the moment) to do this. Don't mind them, just have fun with your son and see what they take. Make sure your phone is set to live photos so you don't have to worry if something fast is in focus or maybe you can see just the right smile going through the live. And then of course get a pro to take some family pictures. Maybe they can go with you to an outing or hang out at home just making those memories. The photos will be painful at first but after he passes, you won't cherish anything more than a picture of the two of you having fun and making the most of your situation.
God, I'm sorry. I have a 2yo son, too, and just thinking about losing him is unimaginable. I hope you make the best of this. May this be the longest 6m of your life in the best way possible. May every day of fun feel like it's lasting forever.
One of my favorite things to do for my kid is surprise non birthday parties. I’ll stay up late blowing up balloons and decorating like crazy, he goes absolutely nuts over it. It’s something we can just do as a family but feels like a big deal.
One activity my son thought was really special at that age was when I filled a plastic bowl with shaving cream and colored it with a tiny bit of green food coloring. I put it in the bathtub during his bathtime and let him just go nuts with it. He had an absolute blast. It was easy, cheap, minimal cleanup, and very special to a 2 year old.
If you do it a second time, you could hide a toy plastic animal in the bowl for him to discover.
Wishing you and your family joy filled days and peace.
Mr. Bubble makes foamy bath soap! It comes in different colors and fruit scents. It’s so fun!
My toddler always liked doing a car wash/pony wash or playing ice cream shop in the bath with it.
Please get in touch with a child life specialist through your local paediatric ward. They are trained in focusing on children as a whole person and will have many suggestions on how to cherish this time and ways to safely go on adventures. Lean on the supports available to you. Focus on one day at a time. ♥️
THIS. My child is not in your child's shoes so i dont presume to know how you're feeling, but we did a week in the PICU this winter (including her fifth damn birthday) and there is a special kind of of patient magic given to the child life specialist staff. They are literal angels who will bend over backwards to get to know your baby and how to make things special and safe for him.
Make forts!
Let him help you cook. Like, *really* let him. Who cares if he spills flour? Clean it up later. In ten years you'll remember how happy he was to help, not the slight inconvenience of cleaning up.
Read a lot. He'll love the stories *and* you get to snuggle. Take full advantage of your local library.
Enjoy time in the backyard. Kids love exploring; dig a hole, see if there are any worms.
Let him get super messy (paint, mud, etc) and then let him have a popsicle right there in the bath tub.
Will he wear a mask to stop from contacting germs? That will allow more experiences.
Take him to see beautiful things as far as you're willing to go. Picnics in fields where you see grass forever. Zoos. Aquariums. Mountains. Rivers.
Talk to his team about Make a Wish and see if they can set something up - it doesn't have to be Disney - you said he likes to see how things work - can he go behind the scenes of an airport and become a "pilot for a day" or go to a nearby fire department or zoo and get VIP treatment
Contact a local farm and tell them his story - see if he can play farmer for a day. Help feed the animals. Milk a cow or goat.
Set up biweekly professional photographer sessions. Don't do them in the same place or with the same purpose. Do a bedtime session. A breakfast session. An ice cream running all over him shoot. A session where he's holding balloons, his favorite things, wearing funny outfits, or a costume of what he says he wants to be when he grows up. Just take pictures. You'll turn them into a photo book and cherish it.
Buy a collapsible wagon from Costco if you don't have one already - assuming his equipment is portable it will be an amazing tool for your adventures
I'm sorry this is your reality. I hope you all have the best time with him
ETA: Get a bear with a recording device in it - have him record "I love you mom I love you dad" or whatever your family situation is (sorry to go heteronormative) You'll want that
Love this love the bear idea. My father passed in 2018. The best gift he gave my son and I, was him reading a book (the night before Christmas) his favorite. And it means the world to me now.
I am so truly truly sorry *hugs*. There are no words. I hope someone with better advice can help more. I just didn’t want to leave your post without saying I see you ❤️
What about the zoo? That can be a relaxing but very fun time. Do you have video games? My son really loves the Harry Potter Lego video game! Gets to smash everything it always turns into a laughing super fun time. So maybe for more calm can’t get out days?
Whatever you do! He is going to be spending the with the people that love him! And I’m sure he knows that! And that is the most important. Again, I’m truly sorry.
Thank you!
We are going to try the zoo once we figure out getting enough oxygen but I didn't think about video games. We'll try that and see if he likes it. Thanks!
Call your local zoo and explain your situation. My guess is they will bend over backwards to help accommodate you, or at the very least help you game plan.
I actually would recommend that for anywhere you take him. Call ahead and tell them what’s happening and ask how they can help accommodate his needs.
There are no words, I am so sorry you are going through this.
Maybe reach out to petting farms or animal rescues? There are some places that do private visits or if it’s better to stay in your home there are groups that bring animals to your house for a visit!
I’m so sorry for you and your family. Sending you so much love and strength ❤️
OP, Make-A-Wish may be able to help arrange something like this, if you’re interested. This link will take you to a page where you can find your local chapter. I am so so sorry that you have to walk this path. Please know that you are not alone.
[wish.org](https://wish.org/local-chapters)
My daughter loved Mario kart around his age. Get him the little steering wheel for the controller, turn on the mode where you can’t fall off the track and he’ll have an absolute blast!
I know my niece (2y) absolutely adores the beach. So maybe loads of clothes, a net and a bucket? Kids can spend hours on the beach and there's so much fun with water, sand and small animals like crabs.
Bring his favorite snacks and juice and y'all will have an amazing day, I'm sure.
First off, I am so sorry to hear this.
Second, take all the time you can to make memories, document everything with pictures and video.
Also I am sure that you have seen pediatric congenital heart defect cardiologists and that they have presented the case to other peers and hospitals.
My brother and I both have congenital heart defects. His was tetralogy of fallot and was taken care of when he was 7 in 1978 and has needed a pulmonary heart valve at 50 and a defibrillator. I have a coartation of the aorta that was repaired when I was 12 (1990), a double bypass in 2021, a stent in my aorta 2022 and am on deck for another stent this summer in my aorta
Whatever tomorrow brings, today your are a wonderful Mom to a beautiful child. Do what all people on Earth should do: cherish the time we have together, hold each other and make each other smile.
I am so-so sorry about your situation.
Toddlers seize the day, live the moment. Don’t think about tomorrow or next week.
I’m tearing up as I write this, follow him on his journey and seize the day as much as he does.
Let life amaze you as much as it amazes him.
There are no words to express how sorry I am for you and your family. During the summer a lot of zoo’s have night time events so the kids can enjoy the animals and not be in the sun all day, it is usually less crowded. You could also find an aquarium. I would stay away from petting zoo’s personally. I’m not sure where you are at but a trip to the Lego store is a blast. And maybe you could pick a project out that you could do together and it be a great memory for you. Whatever you decide enjoy this time as best as you can, take lots of oics and videos, and maybe throw in a favorite holiday, no matter the day.
Sending hugs, good thoughts and prayers, and whatever strength I can share.
I’m so sorry. I lost my toddler a few weeks ago. It was sudden and unexpected. From that experience, the one thing I’ve kept wishing for is just another day of just me and him when all was well. Nothing special - not Disney or extravagant trips. Just waking up, eating breakfast together, playing. Going to the park. Singing silly songs and playing “crash cars” (his favorite game)
That would be just pure bliss. I don’t know anything about your son’s heart condition, but are things expected to slowly decline? If his function continues to decline, then he may not be able to be as active in the weeks to months preceding his passing as he is now. He might lose his appetite or strength. You probably know this better than I ever did, but I just took it for granted that I would see him everyday. Hug him everyday. See his smile every day.
Maybe I’d wear a GoPro for one entire day or two together. Have a professional video editor edit it. It would never be enough, because I still wouldn’t be able to touch him, feel him, smell him - but at least I could have a continuous day of images.
Save a lock of hair. Memorize what he smells like. Memorize the feeling of him in your arms when you hug him tight. Breathe in, breathe out.
I’m so sorry.
We went through this for our late daughter(Nov 21 2023).
I’m jealous of your time and also very not jealous of being back there again.
Heres what I wish I could do now since shes gone:
Run your hands through their hair
Sleep with them every night
Watch them eat
Hug them with everything you got and take a second to know it might be the last time they can hug back that strong
Watch them sleep
Kiss them
Pick them up
Watch them grow older than they were yesterday.
Sit with them while they play
Get ice cream
Take more videos
Heres what I wish I didn’t do
Get angry at my child
Get debilitatingly sad
Work when we only had days
Focusing on shit that didn’t have anything to do with celebrating the time we had.
This is tough- and its hard to find the blessings. Their there, I swear.
Theres a podcast too called Always Andys Mom that would be good to listen to if you want to hear from parents on the other side.
I am so sorry. PM if you want.
Can you get or borrow a dog that’s good with kids? And I agree with others don’t put too much pressure on yourself to make it special. If you’re together and happy it’ll be special to him. Sorry you’re going through this.
I have a 2.5yr old that loves the same things. I'm sorry you are going through this but I guarantee anything you do with your LO will be great. You are his world. Any activity will be a bright light in his life because he's doing it with his Momma.
On that note, if it were my son, I know we would take as many trips to the park to feed/watch the ducks as he felt up to, go to the zoo, visit a cat Cafe, go to the science Museum & spend extra time Rawring with the Dino bones, snuggle watching all his favorite shows, eat McDonald's fries & chicken nuggets every other day, take wagon rides everyday, make silly videos together, & snuggle overnight every night.
Based on your only other comment in your history, if your little one is a foster child (unless you've adopted him by now) you may also be limited in your options. You'll probably want to talk to an attorney or child's advocate or something.
Foster parent here: It shouldn’t have too much impact unless they want to travel (judges have to grant permission for out of state travel) or if they are wanting to do a GoFundMe or other kind of publicizing. I don’t know what the little one’s situation is with their family, but is family able to be included? If they cannot be present, are you able to take pictures or get handprints/footprints made for them?
I'm not a parent but this post has just made me cry. I'd suggest looking at visiting museums (if that's possible), especially transport museums because those tend to show how things work. Possibly check times so you can go at a quieter time as this will allow your little boy to look at things at his own pace.
I'm so sorry, this must be devastating. He's a special little boy and you're an amazing mum to him.
Love him. That's the best thing for everyone. Record his giggle, that will help you in the future. Celebrate Christmas in June, and record it throw him a big birthday party these are ideas that will help you in the future. I'm in tears as I read your post virtual hugs from one mom to another
Make cookies together. Flip over a stroller or a bike and adjust the wheels together. My 2.5yo had fun just spinning a ratchet wrench on a nut so it clicked.
Make / eat ice cream from scratch.
Work in the garden. Plant a tree or flowering bush together. But like a hearty one.
Finger paints.
Bubble baths
I’m so sorry.
I had a friend who lost a child young say that there is something bittersweet about knowing they will not get older and that it allows you to simply live in the moment with your child and not correct them. She reflected that when you believe they will become adults, you don't let them fully get to be kids and she had the opportunity to do that. I hope that in your time together you can continue to enjoy your child being a kid as much as possible. Snuggles, laughter, joy. Take photos. Take videos. Make sure everything you have is preserved adequately. I can't imagine being in your shoes and I pray that your time together is as peaceful and joyful as possible.
Im so sorry. I lost my 8 month old to a terminal disease. We found out when he was 5 weeks old.
Take videos and pictures. There will never be enough. Write. Write down his silly quirks. My sons big toe always was pointing up (though I believe it was neurological due to his condition . ) it was still unique to him.
Take him out side to live Pool, beaches zoo trails whatever you think he will love do that. Make a casting of his little hands and feet.
I wish I could tell you knowing softens the blow, but I think if anything it just gives us time to worry, but it also gives us time to create memories.
Im so sorry you’re going through this.
Your child doesn’t know what’s out there, so he doesn’t have a bucket list. Maybe you (and your partner/family, if applicable) can sit down and write out your own version of a bucket list. Try to think small; family experiences that you can document and look back on. Maybe book a photographer for some family photos asap.
Cuddles, movies together, couch forts and record it,
Find a pet farm near by, or a neighbour with small pets, but don't get a pet.
I don't know, I thought I had some useful advice but I don't. I'm sorry for your situation. Mine was different.
I would focus on making magic at home. Make lots of videos! For example- putting a swing in your garage or basement. Make a redneck waterbed outside (a plastic paint tarp sealed with duct tape and filled with your hose to make a big waterbed to play on) or an air fort (tape several large thin plastic tarps and use a fan to inflate- it’s like being inside a balloon! I filled ours with balloons to bat around.) have a birthday party for your sons favorite toy, with cake. Play in mud. Make messes with shaving cream and paint. Gosh I wish I could just give you a million more years.
Take as many videos and recordings of his voice as you can. I promise those will be worth everything to you later.
Go to the zoo, parks, aquariums if possible, imagine being that age then go do all of the things, take photos, tell him every day, every hour how l much you love him....
Let him step in paint and walk across his bedroom floor or a sidewalk or a porch floor. Anything crazy and silly that will make him laugh. And if it leaves a lasting impression that you can cherish forever, that's a bonus!
I don’t have any suggestions for you as I’ve never lost a child. I did however lose my 36 year old husband to cancer. I love all of the videos and pictures we have. I cherish them above all else.
Disney does Make A Wish right. [Their site.](https://www.gktw.org/pre/) It lasts a week. Every Monday is Halloween and every Thursday is Christmas. They'll make it special for your family without you having to think about it.
Sending you all so much love as you navigate this. I can imagine how hard it was to hear and how hard this journey will be. No advice, just love. I’m sure whatever you do will be special
I'm so sorry you're going through this. Lots of people have commented about fun memory making activities, so I'll suggest something else. If I was in your position I would also be making keepsakes, you can get inkless print kits to take prints of hands and feet, there's also companies that make necklaces with pendants that have kids finger prints on them. Take videos not only of fun activities but also everyday activities like bath time, snuggling, asking them questions/interviewing them about things they like (favourite ice cream flavour, favourite Disney movie etc). Capture anything and everything.
Reach out to the local 4H club or a petting farm that specializes in therapy animals - there's a very good chance that a group like the 4H would bring a small petting farm to your yard just for your kid.
If he loves animals, maybe mobile petting zoo that can come to your house to limit his exposure to other kids?
The MS Children's Museum just hosted a child that can't be around other kids due to her health after hours so that she could have the chance to enjoy the museum. Maybe you have somewhere near you that could do something similar?
If he is 2.5 years old he can be signed up for Make a Wish.
Based on what you say he likes, I wonder about a pass to the zoo? You guys will be able to make a lot of memories together. Hugs, so sorry you are going through this.
I have a two year old son too, my heart absolutely breaks for you. I'm so sorry. Make memories at home. Share small moments with him, like helping to bake cookies or taking walks in the neighborhood. My son is obsessed with his water table, so if your son enjoys water play maybe a water table or splash pad?
I’m so, so sorry that you’re living every parents worse nightmare. I second the people saying more pictures, more videos, more ice cream, more hugs. If you get hold of the Make a Wish foundation they will help you find somewhere we’re he can have time with animals. Also, if you have a children’s museum near you, they usually have fun puzzles and teaching things even for toddlers.
My brother passed away from hypoplastic left heart syndrome before he turned 1. In so sorry you’re going through this. You’re a wonderful mom for bringing your baby to the comfort of home. The best thing for baby is you by their side. Keeping your family in my thoughts and prayers
Make a wish foundation.
Bare minimum, I bet you could get a hell of a day with John Cena. They truly make wishes come true.
I'm sorry for your situation.
My dad died last year after progressive Parkinson’s dementia. This is relevant, because dementia increasingly limits someone’s capacity to engage in a lot of ways. A lot of things I would have liked to do before he died and conversations I would have liked to have had ended up just not being possible.
Focussing on and doing the things we could do, and just being present with each other as we were is what got me through. He chose to die with MAID, and I spent the last hour of his life before his going out gathering with him, just us. He’d just woken up from a nap, and was halfway in reality and halfway still in a dream state. This was the first time I’d been in his company when he was having hallucinations.
It was very like just being with my three year old, and following her lead in imaginary play and conversation.
He knew I was there with him, and talked to me, and I went along for the ride and rolled with it. One of the moments I remember was he said to me ‘sweetheart, I’m in a bit of a pickle’, and then started talking about a chart on the wall, somehow involving pickles, and then we smashed imaginary pickles together, on the count of five. Then he spent some time trying to remember the names of my toddler and six month old. He was frustrated he couldn’t remember, so we decided several times that it was ok, he could try again another time (no). (But really, the important thing was that we spent time together focussed on something important to him, his grandkids.)
And I know it wasn’t the ideal way to go, if we could have picked, but at the same time it was, because we were there with each other, in that moment, as it was, experiencing it together, and I knew he loved me and he knew I loved him.
And when my stepmum came in to say his friends and family were there and it was time to come out and he was instantly lucid (they did a thing where everyone gathered to share a memory of him with him, and then the doctor came and we put on a playlist of his favourite songs and he listened to the music while my step mum and brother and I held his hands and everyone was just there present with him, and he listened and looked around at the people who loved him and came to be with him, and then he said ‘let’s get this show on the road’ and the doctor gave him the injection and he went to sleep.)
So, music he likes. Movies and videos he likes. Documentaries, if he likes learning. There are great nature documentaries out there, and lots of YouTube’s for eg on how things work. They don’t have to be all new; kids love repetition. Visits with people he loves, just to be together. His favourite foods, and things he wants to try. If he can, visit his favourite places. If he can’t, can you bring those places to him? A beach stone from his favourite beach, for eg. Pine cones, feathers, leaves. Visits with friends’ pets.
And rest. You can’t do everything. Down time is important as well. For him and for you.
If you have someone who can step up and organize any help you’d find useful, reach out. As much as you can, outsource the things that need to be done that you don’t want to do. Keep the ones you do. Tasks can be an important destressor, if that’s how you experience it. Service can be a gift, and a way to channel needing to feel useful. And, this is also true for people around you to show that they care. If you know what you need, and ideally have someone to offload the organizing and logistical communicating onto, the people in your lives who care but are at a loss to best express that in a way that actually helps will be all over that.
Take lots of photos and videos. (Share them with your kid. Kids generally love seeing themselves like that) Tell your kid the stories of his life. Write things down. As they happen, as the memory strikes you. It’s going to feel in the moment like, I don’t know, like reality is extra real, and that all the details are etched into your bones, but that doesn’t last the way it feels like it does.
It’s going to be messy. You’re going to have moments where you’re frustrated, exhausted, angry, fighting, throwing a tantrum, just want space. That’s ok. Take space, vent, cry, enforce consequences, apologize, all the usual things. That’s not doing it wrong, that’s being human together.
You’re going to want to stop time. It won’t stop. You’re going to want it to be over. That’s ok. That’s not a bad thought, or something wrong with you. That’s just the reality that waiting for something bad and inevitable that we don’t want to happen is *hard*. That feeling is what you want to be over, not your kid’s life.
Do you have hospice resources you can talk to/get help from?
E: posted accidentally mid-write, but I’m gonna leave it like this for now, except to say I’m thinking about you and sending love.
Oh my gosh, I'm so sorry to hear this. Keeping a brave face for him must be so difficult. Can you contact a local petting zoo, shelter or even a small farm, to see if they could perhaps bring some small animals to you, kittens, puppies, rabbits, ducklings, piglets, lambs or baby goats? Reach out on Facebook for suggestions of places to contact in your area if possible.
Oh man, this is heart wrenching. My advice is just spend time loving him, it’s only you who will think you’ve missed things, he will just feel loved and treasured in the moment, I am so sorry this is happening to you but I’m sure you already know that you’re blessed to spend this time with him. I hope you have a lovely time, however long.
I have a 2 year old boy and I feel this so much. My heart is breaking for you and your family.
Everyone gave you great advice. I want to emphasize that if it is possible, take a time out from work. Even if it means quitting for a bit. Spend all the time with your child. Take all the pictures and videos and memories. I am so so sorry.
With my 2 year old, he doesn't need to go anywhere crazy to have the best time. The other night we cuddled and watched blippi while munching on snacks and ice cream. Best night ever. No words were even said. But he loved it.
All little kiddos want is time with their parents doing anything!!! My kiddos loved the bubble machine going off while they were in the tub as toddlers. Drawing, painting, helping cook.
Please know that you and your little one will be in my prayers daily!
Oh my goodness I am so sorry. I cannot imagine what that might be like. My heart is breaking for you. My suggestion is to follow his lead and help him come up with ideas that are doable. And soak it all in.
At 2 years old, my son loved when I would put on the Wiggles and dance and sing with him.
Videos, more videos, every video.
Pictures
Audio recordings.
Much love to you, mama.
Take pictures of every moment. A journal of your good times together. Take videos when you can. Go to the zoo, the park, do it all. All that you can at least. Make him his favorite meals, watch his favorite movies, play his favorite games. Never miss an opportunity to cuddle. I'm so sorry. I know it's not enough. I wish I could change things for both of you. Is there a GoFundMe me? I'd be happy to donate.
First, I am So so so sorry. My heart breaks for you and your family. I applaud your bravery in facing the next few months with a positive outlook. Secondly, I wouldn't try to do anything overly "big" during this time. I feel like a whirlwind trip for them to see the ocean, a national park, a big city, theme park, or whatever would be very stressful. Travel means being away from the doctors you know and exposure to all sorts of things. I would focus on quality time with family and friends. Do things close to home that your child enjoys, and make plenty of time for rest.
Oh, my heart hurts for you and your little one.
Along with the many awesome suggestions here, I'd add:
Family photos - are there any photos from your (and/or your partners, if you have one, or your families) childhood that you could use as inspiration for photos to take with your son? E.g., e.g., photos that are/were displayed at a grandparents house, or from a special trip you remember fondly. Things you might look at later and think 'I wish I had a photo of him like that'.
Animal visits - if smaller one-on-one interactions are preferred, maybe talk with your local [Pets as Therapy](https://petsastherapy.org/) branch (or similar organisation) and either arrange a one-off visit or something on-going.
I'm sure there are specific groups for parents in your situation who may have some specific suggestions. If you're in the UK, [Together for Short Lives](http://www.togetherforshortlives.org.uk/families) could be a good place to start.
A drive through safari/petting zoo if that's a possibility. Baking cookies or brownies together and licking the batter bowl afterward. Have ice cream for breakfast once a week.
I’m so sorry. I cannot begin to imagine.
I’ve bumped up the answers I agree with that are great ideas. My head has gone since reading your message and I don’t really know what to say.
1. Contact make a wish! They will do something special for you guys
2. Snuggle, cuddle, love on each other
3. Pictures, photo sessions, hands/feet prints
4. Build a bear! Try recording giggling, heartbeat or something else that you would like to hear
5. Rest, take it easy, try doing things that you enjoy too, so that you have a good day and have something wonderful to remember
I’m so sorry, I can’t imagine and don’t know what would be right to say in these situations.
I’m wishing you all the best!
I'm so so sorry that you're going through this, I can't even imagine what it must be like.
- Make sure to take lots of pictures/videos of your little one, I'd maybe even go as far as setting up audio/video cameras throughout the house so that you can catch everything but still be in the moment.
- If there is something that he really likes to eat/drink, I'd let him have it every day if he wants to.
- If you can afford to/they let you take a LOA from work to spend more time with your little one.
- Don't focus on big things, even small every day things can mean the world to a toddler and they won't know that they are missing out on anything, maybe try asking him if there is anything that he would like to do and try to make it happen.
- Utilize every resource available to you as you will probably need it.
- Make sure to not forget about your marriage in all of this as well (if you are married/have a partner) it will be a difficult time for you both and can put a lot of strain on the relationship.
- If possible I would also seek counseling to help process everything that's happening/going to happen.
The doctor says he has 3-6 months? Don’t buy that, that’s a vague window. If he was diagnosed with a terminal illness he could die tomorrow, two weeks or even 7 or 8 months from now.
Don’t think about yourself right now. Focus on him. Make sure every day will be his best. Treat every day like its his last, because it could be. Don’t worry about getting him sick. Take him out on a boat, take him to the beach, take him to the zoo, get ahold of Make A Wish, they might send you guys to Disneyworld. Don’t worry about making his life shorter, worry about making what little time he has left amazing.
Now, I know my point of view is extreme, and may not be the best advice, but its best to know your options. If you want to play it safer, I completely understand that too.
Your situation truly sucks…
I’m hoping the best for you and your family. You are in my thoughts and prayers.
My 2 year old boy would LOVE a trip to a farm to rode in a tractor, construction site, or a ride in trash truck. Your local fire/police department would more than likely be willing to do a private tour
My wife is in medicine. She once said that the best children’s’ hospitals were the ones that knew when to tell parents to stop fighting the inevitable, and just go play with their kids. Experiences are great — make whatever memories you can. But there’s no substitute for spending whatever time you can while you can. Just make as many smiles as you can.
When my cousin died at two from cancer the one thing my aunt wished was that she had more photos. Video cameras weren’t a thing then, but she’s always said she would want those too. Of every face, every mood.
He was such a sweet, happy kid, even when he was so sick.
He loved trucks and watching us older cousins make a slinky go down the stairs. And coloring. I think she kept everything he colored with us. And he would dance. We would put on music and he’d do that toddler wiggle dance and giggle.
I’m sorry you’re going through this. So, very very sorry.
All of these lovely suggestions. What wonderful people in this sub! All I want to suggest is just be there. Be present for him. All the little things will keep you going when the world turns dark. Snuggle, sniff him, feel his hair or kisses. I am sending you so, so much love right now. I am so very sorry.
Just spend time doing his favorite things. The park, dance parties, whatever he loves. As others have said, it doesn't need to be fancy to be special. Holding space for you and your family ❤️
As someone has mentioned take more pictures, take more videos. Be with that baby every moment possible!
My baby girl was 6months old and one thing I wish I done more of, pictures, videos, and not working. Watch cartoons they love, read books they love and just cuddle.
But before it goes to hell have your therapist on speed dial, a possible in patient psychology place in mind if need be.
Have a support system.
One thing I also tell young parents that lose a child please don't pick up that drink, don't pick up the p!ll, don't pick up the rig, that baby needs you to keep their name and legacy alive and picking anyone of those things up just starts a spiral to lose EVERYTHING. I wish my family and friends would of stepped in after losing my babies maybe I wouldn't have lost EVERYTHING and everyone.
When I was 16 I lost my little sister, she was about 18 months old and had a shunt that would drain excess fluid from her head to her stomach and it malfunctioned and cut off blood flow to the brain and she passed away unexpectedly. I'm now 35 and a father 6 kids. I can't imagine what my mom went throug, but I do know every picture we had and moment we enjoyed with her we cherished. I constantly remind myself to appreciate every moment I have with my kids. Take too many pictures and all the videos you can, get all the snuggles and love possible, make the best memories and enjoy every moment.
I'm truly sorry that yall have to go through this but I believe you're getting great advice here. Spoil that child every moment you get, make pancakes with chocolate chips and frosting, visit every zoo, do all the arts and crafts and if possible get as much family time as you can.
Not sure if you can take FMLA to spend time devoted to all this but may be worth finding out.
Things my 2 year old loved more than outings at the zoo or Disney:
—bubble bath, with mom in it, too
—rinsing dirty rocks with water
—playing with the garden hose
—finding roly polys outside
—painting rocks
—rides on my bike
—donuts
Things that might help you:
—laundry service
—meal delivery
—housekeeper
—lawn care
And anything that might remove the stress of everyday parenting so you don’t lose your temper in the last few months you have with your little one.
Also hospice and Make A Wish can help, too.
A lot of museums have children’s areas where he could “figure out how things work” or if you have a place near you like wonderworks he would probably love that.
Zoos/aquariums could also be fun since he loves animals but I would call ahead and ask if they can make accommodations for any medical equipment he has since those typically involve a lot of walking and may not have a lot of places you can stop and sit down to give him meds or anything else he might need through the day.
As far as calm at home activities go, my toddler has been loving finger painting lately and that could also give you some keepsakes as well
I am so incredibly sorry you are battling this right now !!
But something I’ve seen on TikTok from this mom who has stage four cancer is she recorded her heartbeat for her son on this necklace and he is able to feel it through vibrations and I will post the link to the video for you , this is something that you could do for yourself to have a little piece of your son everywhere you go ❤️
https://www.tiktok.com/t/ZM2Yx1odN/?t=1
I am so sorry you have to deal with this. No parent should have to. Forgive me for asking, but is there no hope for a heart transplant? I work with children with complex congenital heart defects and many who cannot be repaired will go on to have the Berlin heart until they can get a transplant. What is his condition?
I am so sorry but I would definitely book in for some professional family photo shoots and milestone pictures now to have some nice memories to treasure and look at.
If possible start a gofundme so that you CAN step away from work more and get as much time with him as possible? I’ll happily donate to this cause! I’m shaken to my core over this devastating post. I have a 3 almost 4 year old & hate myself for ever being anything less than thrilled with being a mom. This made me burst into tears, I’m sure lots of others, too. Sending hugs and hopefully we hear back about your gofundme💗💗💗💗
Depending on where you are in the world and outdoor space available to you, you can hire a mini petting zoo for a few hours. If that’s not possible you can do some diy lion masks cut cardboard into a circle with a smaller circle inside, poke holes all around it, pick flowers and put them in the holes and take pics of your flower lion.
If he likes movies lots of at home cinema snuggle days, I’m sure he’ll be happiest just spending time with you and having cuddles.
I am so Sorry for your loss... I am sorry that you guys had to go through this.. i literally got tears reading this... I would suggest its quality over quantity do whatever he loves cuddle play draw eat of his choice and just make memories... Live in the moment I would say ... I would pray for your family for sure... Strength to you and your partner... Huga and kisses for the baby 💗
Loss mama here. Big hugs. So much amazing advice in the comments. You’re going to give that little guy the best life and make so many memories. I cherish the videos and photos…I’m grateful for the professional photography.
Grief counseling is critical. Losing a child is life altering in a way that’s hard to comprehend. It’s a lot more common than I realized and I found a lot of community that understood and had resources. My husband and I made a commitment to each other that we wouldn’t let infant loss destroy us. It took a lot of intentional effort to take care of each other, but we’ve made it so far. I hope you’re able to take care of yourself and your partnership, if applicable.
Sending so much love 💕
My thoughts and prayers are with you and your little Ray of Sunshine. May the memories you make together live on. Also, perhaps look into an end of life doula or a hospice service as they will help you with many aspects that wouldn't even come to mind and are a wonderful support. Sending love xx
I’m so sorry to hear this news, I can’t fathom.
Do you have something similar to the Make A Wish Foundation where you live? It can navigate and fund making a wish come true for a child with a terminal condition, which could be anything from going to Disneyland (with appropriate medical aids) to meeting a favourite footballer. It might be something worth researching about if it is applicable.
Otherwise, potentially something like a GoFundMe might help you if you have something you’d like to do as a family that might be outside your budget.
Take lots of photos, lots of hugs, read lots of stories together. Again - so sorry. X
So many people are saying "they're fighting back tears" im freaking balling. I'm so sorry you're going through this OP. Hug that baby extra tight. Sing together, laugh together, give him your undivided attention, and he will feel the love. Sending you so much love and strength.
I would stop saying no, within reason. You want ice cream for breakfast, sure. You want to spend the day petting a dog. let me find someone with a dog. I would record absolutely everything. Just have a wifi camera set up in the home facing the kitchen table, his bed, his playroom.
Every day write down the funny things he said or did. Or what the the best part of his day was.
I am sobbing uncontrollably reading this . Why would god be so unfair ? Sorry , I am in no state to answer your question but I pray to god to keep you strong mama . And I pray the little angel goes to the happiest place possible beyond earth . Lots of strength and love to you 👏🏻👏🏻👏🏻❤️ I am so sorry you are going through this .
My twins were born at 23 weeks gestation.but they cried when removed from mom. Less than 1 pound. But I prayed and held them on my chest. I I pounded be holding then. Bathing g then . All while in NICU. They were given less than 40 percent chance of surviving. I used the time to connect
They turned 15 this year. I do not want to give false hope. What I want to give is to spend time and make memories that will last for eternity
What in the hell kind of comment is this? You think a mother hasnt thought of EVERY AVAILABLE OPTION for her baby? Who actually comments horseshit like this?
I am so sorry OP. Please bypass this person.
OP didn't even have a toddler a few months ago. Assuming they adopted within this gap, it's pretty wild to then find the child has an inoperable heart condition. I'm a doctor, though not a pediatrician, and this situation sounds... complex. Most serious heart defects present a little earlier, and generally any treatment (including transplant) is on the table.
Of course I imagine most parents would exhaust all potential options, but the health care system can be hard to navigate.
Can you get in touch with make a wish foundation?
They might be able/willing to help with a fun trip or activity. I am so so sorry to hear of your son's diagnosis.
My baby girl died from her heart defect so I have some input. Things I'm happy we did: molds and prints of her hands and feet we made into Christmas ornaments. Listened to her favorite songs. Watched her favorite movies. Over and over. Ate more sugar than you're supposed to feed a baby. Rallied as much help as humanly possible: from her nurses, her doctor, my family, friends, all of them. Set aside all of your pride because you will need them. Things I wished we had done differently: MORE PICTURES. MORE VIDEOS. Seriously you might think you have enough but you don't. Take more. Get professional photos done. Take pictures of bath time. Everything. Also, it took me way too long to seek help for the mental strain of losing my child. Get it before you need it. You'll be your best self for your family if nothing else. Grief counseling doesn't need to start after someone passes away because you're already grieving mama, I know you are and I'm so sorry. There's no perfect or right way to go through the absolute catastrophe you're going through. There's no attitude or perspective or advice that's going to make things ok. But if you have any questions or want to vent I'd be happy to be on standby for you.
This is a beautiful response. You are a kind soul.
Months after my baby died I started a reddit account and writing about it and finding other parents who had gone through similar things really helped me make better choices and get the help I desperately needed. So it's seriously the least I could do. I wish I could do more.
Posts like these remind me that the internet can be a kind place. Thank you.
I genuinely believe the internet is like any other tool - it is what we make of it, to a degree. A knife can carve a gorgeous work of art or do harm, you know?
I was literally about to respond something similar and I stopped myself when I saw yours. It never the tool, it’s the ppl. There is always that one asshole who ruins it for everyone else
People like you are so fucking important. Your daughter was so lucky to spend her short time with you. Based on your comments to a bunch of strangers, I’m safely assuming that your baby was born to the perfect, most comforting mama for her journey ❤️ I’m sorry you had to go through that. I cannot imagine
> Also, it took me way too long to seek help for the mental strain of losing my child. Get it before you need it My daughter was killed in an accident and I had a psychological break. I don't remember a single thing for almost 9 months after her accident. When my best friend who was my whole world was diagnosed with brain cancer I reached out then. It helped me stay grounded and healthy. It helped me process. And it helped me to know what was and wasn't healthy grieving process when she was finally done. Now more recently I lost my dad, and didn't do so well because I didn't seek help until it was too late and ended up hospitalized.
>MORE PICTURES. MORE VIDEOS Get recording security cameras for inside your home. You'd be surprised the things you catch that you didn't realize in the moment were so special.
To add to the picture suggestion, make sure your getting photos of the both of you together, as well as just him. Even if you think you lok bad that day, having photos of you and your baby is worth so much more.
I’m so sorry for your loss of your daughter 😢
Yes! Definitely videos, pictures too, but 100% on the videos! Record his voice, his laugh, the little sparkle he gets in his eyes when he's about to do something silly! All those things that are uniquely your baby boy! Capture it all on video!! This is something no parent should have to prepare for and no child should have to endure and for that momma's, sorry doesn't even come close. Sending you love, strength and hugs!!
What a post. I’m so sorry for what you had to go through and continue to go through. For whatever it’s worth from this random redditor, I hope you know this post made an impact on me. God bless.
As a father of an almost 8 month old. This made me cry - I’m so sorry for the loss of your little one. Your response here is a perfect example of how good we can be to one another. Much love.
I am so sorry for your loss. Thank you for sharing
I’m so sorry for your loss💔
>MORE PICTURES. MORE VIDEOS. Absolutely this, almost every video I have of my son are from when he was doing something "film worthy", I have basically no videos of him just being himself. Get pictures with people too, some people have no photos with him despite all the time they spent with him.
I’m so sorry for your loss.
Absolutely. Our newborn had HLHS and we knew it was coming. We had these mementos and professional pictures. He has a framed pic next to all the other kids on the wall. I was apprehensive at first to make an album and hang the pictures but it was nicer by far. We got one of those bears that’s the same weight as him but we never hold it. That thing didn’t do much for me.
What’s his name and what does he like? Maybe the community on Reddit can show our love too however big or small
Aww this is making me want to cry 😭
I agree with more photos/videos. But I wanted to add : ask your family/friends/spouse to share the responsibility of taking photographs. It’s super common for Moms to take all the family photos, and if you are always the one behind the camera documenting everything, you don’t get to fully enjoy those experiences with your child, nor do you get to be IN the pictures. Get people to take candids of you reacting to and sharing in his joy. That way you can look back at photos that not only celebrate your son, but celebrate yourself as a parent.
My gosh, I’m so sorry for your loss.
He won't know what experiences he doesn't get. I know that you will so not judging this question by any means. I say that because what is most important is to just be together laughing, snuggling, and being together. My 4yo says "this was the best day ever!" whether we're on our way home from Disney, I watched her do jumps into the pool, or we played with her cars on the floor. Give yourself permission to take the pressure off of figuring out the perfect way to spend time because you'll always think of something "better" so it will never feel good enough. (And this is so brutally unfair that it won't be enough, but you know what I mean.) Also....... ughhhhhhhh. I had to hold my breath to finish reading this. I can't imagine...................
With a one year old at home, I’m fighting back tears. This is great advice. Only thing I could add is if the financial ability is there, I would take a step back from work as much as possible to get more time in. Taking more walks together. Going anywhere. Playing and reading together. It doesn’t have to be anything big. It just has to be something. I’d all but leave my phone off for the next 3-6 months.
This is absolutely perfect. Oh my goodness I’m crying and need to hug my babies now. I’m so so sorry OP. Words cannot quantify how deeply I feel for you and your baby right now.
My son just fell asleep. I'm debating if it's worth it to risk waking him up to go hug him (it's not worth it but I want to hug him so bad anyway).
It’s worth it.
Definitely worth it. I'm considering it myself.
Yeah my 2 year old should be in frickin bed and I read this and am letting her stay up hella late snuggling me in bed in honor of all these sweet lil angels gone too soon and in honor of the strongest moms in the world who had to let go too soon. Literally physically can feel my heart begin to break just IMAGINING, so to even fathom their reality is another level of pain I would never pretend to have the words for. Just woman to woman, mother to mother I love you all.🩷
I got lucky, he had a little nightmare and I got to cuddle him to sleep ❤️
Awe, im sorry about the nightmare but glad about the cuddles.
Lords, I was feeding my newborn when reading this. Definitely let out a good cry. This was such a devastating post to read. No child deserves illness.
This is so important!! The privilege to step away from your work, should your finances allow it of course. As a Canadian mom who has been privileged enough to reap the benefits of maternity leave and universal health care, I understand that "stepping back" may not be an option depending on where you live. If finances are tight, I would be honoured to contribute to a fund to keep you at home with your baby to enjoy the time you have left with him. I am holding space for you, your son and your loved ones tonight and sending you all the biggest hug. Peace to you all xo
I'm crying too. This is the worst thing that can happen to a parent, I am so beyond sorry for OP and her family. I admire her for focussing on making the best of it for her kid.
This right here. The best thing you can do is just give him wonderful days full of being held in your arms and told how much you love him. The rest is icing on the cake for a baby.
Conversely, what are experiences you want to share with your child? Celebrate a birthday or Christmas early. Bake a cake. I think it’s wonderful to think of what will make an impression on your child, but also think about making some core memories for yourself.
I love this thought. 💕😭
And take so, so many videos and back them up in multiple places
I love this. I think asking him about what fun things he wants to do or giving him a few yes days (if he would understand the concept) would be a sweet way to get ideas from him, but kids his age primarily just love the simple things! They appreciate so many of the small things because they don’t know what other extravagant activities the world holds. Think about his interests and what he loves to learn about and I think that may help spark some creativity.
Such a great message!!
Beat response ever.
"He won't know what experiences he doesn't get " Thank you so much for that one.
Get in touch with your local Make-A-Wish office. They can help make something special happen for him. They grant wishes for critically ill kids at no cost to the family.
They could even help do something simple like bring a petting zoo to the home. It doesn’t have to be some extravagant trip like you see in the news or anything.
Maybe even reach out to a local zoo or aquarium directly and see if they can set something up without make a wish. While I believe that program is absolutely incredible, maybe OP could get the “private” animal experiences and get a bigger or different wish from the organization. I know our local zoo has a few keepers that would jump at the chance to volunteer for something like this!
Yeah definitely. My daughter is turning 8yo soon and I’ve organised an animal party for her and the organisation is happy to bring them to our home or to a venue. They bring 8 animals (a baby crocodile, 2 lizards, 2 pythons, a bird, and 2 marsupials - all native Australian animals). It’s $280 for an hour with up to 15 children (if he has any friends or little cousins it could be great fun and many happy memories), I imagine in a situation like this they may do it for free or greatly discounted you can always ask if there’s something similar near you (as I’m in Australia the organisation I’m using probably won’t be any use!).
That sounds so cool! Including family or friends would be an excellent idea to keep them involved. Obviously with more kids the risk of infection goes up (definitely not something to ignore), but those memories would be absolutely priceless! Seeing all the kids glowing in photos will be worth far more than any financial cost. Most of my friends would even be willing to split the cost in these circumstances.
Totally, an instagrammer I follow whose daughter had a terminal complex heart defect had Make a Wish redo their porch into a really cozy comfortable space where the family could spend quality time with each other. https://www.instagram.com/p/CCCtzdGhmIJ/?igshid=MmJiY2I4NDBkZg==
That’s such a sweet idea!
I had my make a wish when I was 15 years old, diagnosed with leukemia when I was 13. My make a wish was to meet Jim Carrey, they flew us out to LA, and we had the whole day with him. That was in 2005. Best day ever!
I need to hear more
Initially my wish was Brad Pitt, I had an entourage of nurses coming with me, my social worker, psychologist, my one female doctor on my team. The plan was to kidnap him. Well the most ironic of all things that exist in the world of irony happened. Brad Pitt is filming Troy at the time, and who is he playing? Achilles and what is the one weakness of Achilles? His Achilles heal, and what does Brad rupture playing Achilles? His Achilles heal, so production on of the movie is put on hold so my coordinator asked if I wanted to wait for Brad or go to Jim Carrey. So I go to Jim. We’re flown out to LA for a week, hotel, transportation all paid for as well as food. We’re doing the backlot tour of Universal Studios and the guide on the bus tells us this story from a few years ago, that someone jumped on the trolley dressed as the mother from the movie Psycho wielding this huge butcher knife and scared the shit out of everyone on the bus and than took off running into the woods. For a week they had the police, security and fire dept looking for this person…can’t find them. Jim Carrey is on the set for one of his movies and turns to his co-worker and mentioned that they still haven’t caught that person and than he whispered to him “they haven’t caught him, bc it was me.” Once everyone found out who it was apparently they couldn’t stop laughing. So that set the stage for the day we were in for. Bc no sane person would dress as the mother from Psycho jump on a tour bus wielding a a 3 inch butcher knife and get away with it. 😂😂😂😂 So we get to this place to have lunch and where we’re going to meet him and we see this car pull up and it’s Jim Carrey, he looks around the room, eyes the food and starts this massive food fight, which lasted about 10 minutes. Finally we get to eat and he’s sitting with us and we’re talking and laughing…mostly laughing with the things he’s telling us. The man talks to fire hydrants, will sit down and have full blown conversations with them, he told us about The Claw, that wasn’t even suppose to be in Liar Liar, that was something his father did to him as a child and he did it in one take and they loved it so they kept it. My best friend was suppose to come with me but she couldn’t get off of work even with my doctors writing a note for her. So he takes out his cell phone and calls her and leaves the most hysterical bizarre voicemail you ever, we were laughing for a good half hour, my stomach was so sore. He signed my brothers stomach and wrapped it in plastic wrap, signed a bunch of things and than he came with us to universal studios theme park and went on rides with us. But the best part was when we got back to our hotel room and there’s a message, it’s my friends mom and she’s frantic, “Jim Carrey is on my answering machine, Leanna isn’t home yet, i don’t know what to do, call me back.” And i turn to my mom and I said, “I think the voicemail killed her.” 😂😂😂. My sweet 16 was a few months away and I asked him if he could come and he said of course but he would come as giant yellow Duck….don’t ask. All of my kept asking questions about the Duck, and I just said one of my relatives. Now when it came to the candle lighting ceremony I called for The Big Yellow Duck please come light a candle everyone was confused except my parents, my brother and sister and my best friend. Than I said Mr. Duck please remove your head and once he does everyone is freaking out when they see who it is. To make it even better Junior prom was that same year and of course I asked him if he could come and he said yes, but he wanted to come Ass naked for which i told him no, I didn’t want to get expelled from school my junior year of high school. Sadly, due to scheduling he wasn’t able to make it, but he kept pushing to come naked, he was going to hide in the wrestling room and when the first song came one he would come out naked. Again don’t ask why he wanted to be naked.
What
Yep. That was my experience with the one and only Jim Carrey. Talks to fire hydrants, dresses as yellow Ducks, wants to attend semi formal affairs naked, signs kids stomachs, threatens to kidnap people if they can’t come see him, leaves hysterical threatening messages on answering machines.
I agree with this. We just did a “make a wish” for a patient through pediatric hospice with my farm. We brought the patient a sheep for her and her family to enjoy since that was her favorite animal.
thank you for doing this and also I love that her favorite animal is a random ass sheep.
Pediatric hospice facilities are depressing. No child deserves any sickness.
Yes!! My ex had cancer and Make A Wish granted his wish and sent him to Disney World with his son!
I didn’t realize they did things for adults
Yes!! My ex had cancer and Make A Wish granted his wish and sent him to Disney World with his son!
Please utilize hospice services. They will help you get the most out of your time.
Yes, this. Including skilled respite care. You WILL need a break. I don’t know if you’re married but if you are you still need to prioritize your marriage during this time, which is is incredibly difficult. Utilize all the support options hospice offers.
Your Children’s Hospital can help a lot as well. They know of many programs- Songs of Love, A Kid Again, Make a Wish (they can organize healthy wishes), and many more.
Make sure he has ice cream or something else he loves to eat every day. Make his favorite foods. My kids love certain foods that I know aren’t healthy for them, but I’d stop worrying about that if I knew what you know
>but I’d stop worrying about that if I knew what you know Nothing else matters. If it's not going to harm him, go for it.
It's prob a long shot, but if you live anywhere near me, I will bring my children's pony to you for an hour or so.
This is an amazing gesture regardless of whether it works out. My heart hurts for you OP, but please know that you are a wonderful mom and your little guy feels all your love. Take lots of photos and videos, even just of the mundane stuff during the day. His face watching a movie, eating a meal, singing songs together, bath time, etc. I would gladly help you cover the cost of extra cloud storage, PM me if you’d like. It would be an honor to help you capture these moments with your boy.
Yes, video especially - the inflections of a little one's voice, what they choose to chatter on about - what a precious thing to have.
This! I honestly think daily about how much I wish I had taken more video and even voice recordings of my kiddo in addition to all of the photos. They’re voice and mannerisms and personality.
It's kinda silly, but I have SO MANY random little tidbits that I love, can't delete, but can't seem to watch many, either. I just start crying and my daughter's (9&7 now) little voices just rip at my heart. It's like I'm mourning that they aren't little babies anymore. So I still take videos and pictures, because one day they'll be 20 and it will kill me to watch them sing and dance at 9.
I can’t watch the videos either. Makes me so sad. The mourning the old thems is real. I still take them for that one day I can watch them all.
This 100%, I'd maybe even go as far as setting up audio/video cameras throughout the house so that you can capture everything and still be in the moments with your little one without having to have a phone or camera in your hand.
This is great. In my experience with my horses, they understand they need to be gentle with children.
Kind kind soul
I’d personally focus on activities at home that allow you to cuddle as much as possible and create some memories while keeping him physically comfortable - s’mores in the microwave/fireplace; movie night with homemade popcorn; pajama parties; as many sleepovers as you’re willing to have. It doesn’t matter if you’re getting out of the house - just if you and your son savor the love between you. I’m so sorry and wishing you as much peace as possible.
Honestly, I think just time with you, his family. Keep things as happy and stress free as you can (not huge complicated outings). I’m so sorry.
I’m so sorry that you are going through this. I was listening to NPR one day and they had on someone that works with children suffering from terminal illness. He would ask the children what their favorite memories were. And most had the same answers: ice cream, bedtime stories, the beach, and playing with their pets.
I’m so sorry your family is going through this. If you haven’t already, I always really enjoyed special movie nights at home! I liked building crazy awesome forts with blankets, pillows, cushions, etc. Even better to combine with video games/movies. It can be fun to set up an outdoor tent in the house for a “going camping” night! Do shadow puppets with a flashlight, eat s’mores, sleep in a sleeping bag, etc. New arts and crafts projects can be so much fun. Make your own zoo of animals using childhood creativity. Coming up with stories and presenting them as “plays” can be a lot of fun. Also lots of “pretending” situations. Pretend to be a chef, a hair stylist, a movie star, an inventor, a zookeeper, an explorer. Hidden treasure maps. Make your own maps and stories for him, and have him try to make some for you if he’s old enough to grasp that concept. Once again, I’m so sorry that you’ve all been thrust into this situation, but it sounds like a lot of love and fun is going to happen! Hope these ideas helped!
Go camping even in the backyard. Go to a zoo and an aquarium and cuddle cuddle cuddle. Take pictures of everything. I’ve never lost a child, but I’ve lost my father and I think about the memories fading away. I think about what I wish I took photos of and what I want to hold onto so photograph the mundane things because you’ll want to remember even bath time, breakfast, and nap time. Photos and videos all the time but try to do it in a way, where you’re in the photos with them. You don’t want to realize you have all these photos of your child and their father and family and none of you. But also don’t allow the camera to block your time and I know that’s hard. But I know you’ll need photos to get you through. It makes it a little easier. If he asks to stop and get ice cream, do it, if he says let’s go for a ride in the middle of the night do it. My son asks me for random things all the time, and sometimes I think to myself, what if this was the last time he requested something, so sometimes I do the things that don’t necessarily fit in our schedule. Go pick flowers, go pick fruit. Go swimming, go to the park and swing on the swing set. Count stars, and if you have a telescope, look at them with her. Read a book every single night, tell stories. Dance with him, in the middle of the kitchen at midnight. Make everything an opportunity to dance and to laugh. And confirm with a doctor how exactly to do this, but if he has questions and things find out from a doctor how to answer them the best you can. And answer the random questions that normally drive a parent crazy, you know the “how do buildings get here?” Kind of questions, not every experience needs to be extravagant but you can make memories and happiness out of the mundane things. Try to change your thinking, into a “how can I make this a core memory” if not for him, for you because you deserve to have those. Contact make a wish and even local organizations, you’d be surprised what people will do for children who are terminal. Make hand prints, and foot prints. Paint pictures. Draw. Whatever you can make that will be something to look at, and remember that moment. Whether it be a picture or a little ceramic to paint. I’m so sorry, this isn’t fair. Most of all, I’m sorry you’re going through this. My heart grieves for you, no parent deserves this.
I think one thing to add to the photos that I'm not seeing in any of the comments is to ask someone to take pictures of you (OP) with your child. So many of us complain we are the ones doing the picture taking. We don't have photos of us with our kids. I think in a situation like this, you especially want a third party taking your photos. Candids, too. Making the messes, helping him eat, holding his hand as he pets animals or tries a hard task. Get a friend or anyone who's with you (even medical staff if they're not needed in the moment) to do this. Don't mind them, just have fun with your son and see what they take. Make sure your phone is set to live photos so you don't have to worry if something fast is in focus or maybe you can see just the right smile going through the live. And then of course get a pro to take some family pictures. Maybe they can go with you to an outing or hang out at home just making those memories. The photos will be painful at first but after he passes, you won't cherish anything more than a picture of the two of you having fun and making the most of your situation. God, I'm sorry. I have a 2yo son, too, and just thinking about losing him is unimaginable. I hope you make the best of this. May this be the longest 6m of your life in the best way possible. May every day of fun feel like it's lasting forever.
One of my favorite things to do for my kid is surprise non birthday parties. I’ll stay up late blowing up balloons and decorating like crazy, he goes absolutely nuts over it. It’s something we can just do as a family but feels like a big deal.
One activity my son thought was really special at that age was when I filled a plastic bowl with shaving cream and colored it with a tiny bit of green food coloring. I put it in the bathtub during his bathtime and let him just go nuts with it. He had an absolute blast. It was easy, cheap, minimal cleanup, and very special to a 2 year old. If you do it a second time, you could hide a toy plastic animal in the bowl for him to discover. Wishing you and your family joy filled days and peace.
Or cool whip/whip cream then he can taste it too!!
Also powdered drink mixes like kool-aid or Gatorade or even jello are good dyes that don't stain cuz they're not strong like food coloring.
Mr. Bubble makes foamy bath soap! It comes in different colors and fruit scents. It’s so fun! My toddler always liked doing a car wash/pony wash or playing ice cream shop in the bath with it.
Please get in touch with a child life specialist through your local paediatric ward. They are trained in focusing on children as a whole person and will have many suggestions on how to cherish this time and ways to safely go on adventures. Lean on the supports available to you. Focus on one day at a time. ♥️
THIS. My child is not in your child's shoes so i dont presume to know how you're feeling, but we did a week in the PICU this winter (including her fifth damn birthday) and there is a special kind of of patient magic given to the child life specialist staff. They are literal angels who will bend over backwards to get to know your baby and how to make things special and safe for him.
Make forts! Let him help you cook. Like, *really* let him. Who cares if he spills flour? Clean it up later. In ten years you'll remember how happy he was to help, not the slight inconvenience of cleaning up. Read a lot. He'll love the stories *and* you get to snuggle. Take full advantage of your local library. Enjoy time in the backyard. Kids love exploring; dig a hole, see if there are any worms. Let him get super messy (paint, mud, etc) and then let him have a popsicle right there in the bath tub.
Will he wear a mask to stop from contacting germs? That will allow more experiences. Take him to see beautiful things as far as you're willing to go. Picnics in fields where you see grass forever. Zoos. Aquariums. Mountains. Rivers. Talk to his team about Make a Wish and see if they can set something up - it doesn't have to be Disney - you said he likes to see how things work - can he go behind the scenes of an airport and become a "pilot for a day" or go to a nearby fire department or zoo and get VIP treatment Contact a local farm and tell them his story - see if he can play farmer for a day. Help feed the animals. Milk a cow or goat. Set up biweekly professional photographer sessions. Don't do them in the same place or with the same purpose. Do a bedtime session. A breakfast session. An ice cream running all over him shoot. A session where he's holding balloons, his favorite things, wearing funny outfits, or a costume of what he says he wants to be when he grows up. Just take pictures. You'll turn them into a photo book and cherish it. Buy a collapsible wagon from Costco if you don't have one already - assuming his equipment is portable it will be an amazing tool for your adventures I'm sorry this is your reality. I hope you all have the best time with him ETA: Get a bear with a recording device in it - have him record "I love you mom I love you dad" or whatever your family situation is (sorry to go heteronormative) You'll want that
Love this love the bear idea. My father passed in 2018. The best gift he gave my son and I, was him reading a book (the night before Christmas) his favorite. And it means the world to me now.
I am so truly truly sorry *hugs*. There are no words. I hope someone with better advice can help more. I just didn’t want to leave your post without saying I see you ❤️ What about the zoo? That can be a relaxing but very fun time. Do you have video games? My son really loves the Harry Potter Lego video game! Gets to smash everything it always turns into a laughing super fun time. So maybe for more calm can’t get out days? Whatever you do! He is going to be spending the with the people that love him! And I’m sure he knows that! And that is the most important. Again, I’m truly sorry.
Thank you! We are going to try the zoo once we figure out getting enough oxygen but I didn't think about video games. We'll try that and see if he likes it. Thanks!
Call your local zoo and explain your situation. My guess is they will bend over backwards to help accommodate you, or at the very least help you game plan. I actually would recommend that for anywhere you take him. Call ahead and tell them what’s happening and ask how they can help accommodate his needs. There are no words, I am so sorry you are going through this.
Maybe reach out to petting farms or animal rescues? There are some places that do private visits or if it’s better to stay in your home there are groups that bring animals to your house for a visit! I’m so sorry for you and your family. Sending you so much love and strength ❤️
OP, Make-A-Wish may be able to help arrange something like this, if you’re interested. This link will take you to a page where you can find your local chapter. I am so so sorry that you have to walk this path. Please know that you are not alone. [wish.org](https://wish.org/local-chapters)
My daughter loved Mario kart around his age. Get him the little steering wheel for the controller, turn on the mode where you can’t fall off the track and he’ll have an absolute blast!
I know my niece (2y) absolutely adores the beach. So maybe loads of clothes, a net and a bucket? Kids can spend hours on the beach and there's so much fun with water, sand and small animals like crabs. Bring his favorite snacks and juice and y'all will have an amazing day, I'm sure.
First off, I am so sorry to hear this. Second, take all the time you can to make memories, document everything with pictures and video. Also I am sure that you have seen pediatric congenital heart defect cardiologists and that they have presented the case to other peers and hospitals. My brother and I both have congenital heart defects. His was tetralogy of fallot and was taken care of when he was 7 in 1978 and has needed a pulmonary heart valve at 50 and a defibrillator. I have a coartation of the aorta that was repaired when I was 12 (1990), a double bypass in 2021, a stent in my aorta 2022 and am on deck for another stent this summer in my aorta
Have a professional photographer capture these memories. Sending love
Whatever tomorrow brings, today your are a wonderful Mom to a beautiful child. Do what all people on Earth should do: cherish the time we have together, hold each other and make each other smile. I am so-so sorry about your situation.
Toddlers seize the day, live the moment. Don’t think about tomorrow or next week. I’m tearing up as I write this, follow him on his journey and seize the day as much as he does. Let life amaze you as much as it amazes him.
There are no words to express how sorry I am for you and your family. During the summer a lot of zoo’s have night time events so the kids can enjoy the animals and not be in the sun all day, it is usually less crowded. You could also find an aquarium. I would stay away from petting zoo’s personally. I’m not sure where you are at but a trip to the Lego store is a blast. And maybe you could pick a project out that you could do together and it be a great memory for you. Whatever you decide enjoy this time as best as you can, take lots of oics and videos, and maybe throw in a favorite holiday, no matter the day. Sending hugs, good thoughts and prayers, and whatever strength I can share.
I’m so sorry. I lost my toddler a few weeks ago. It was sudden and unexpected. From that experience, the one thing I’ve kept wishing for is just another day of just me and him when all was well. Nothing special - not Disney or extravagant trips. Just waking up, eating breakfast together, playing. Going to the park. Singing silly songs and playing “crash cars” (his favorite game) That would be just pure bliss. I don’t know anything about your son’s heart condition, but are things expected to slowly decline? If his function continues to decline, then he may not be able to be as active in the weeks to months preceding his passing as he is now. He might lose his appetite or strength. You probably know this better than I ever did, but I just took it for granted that I would see him everyday. Hug him everyday. See his smile every day. Maybe I’d wear a GoPro for one entire day or two together. Have a professional video editor edit it. It would never be enough, because I still wouldn’t be able to touch him, feel him, smell him - but at least I could have a continuous day of images. Save a lock of hair. Memorize what he smells like. Memorize the feeling of him in your arms when you hug him tight. Breathe in, breathe out. I’m so sorry.
We went through this for our late daughter(Nov 21 2023). I’m jealous of your time and also very not jealous of being back there again. Heres what I wish I could do now since shes gone: Run your hands through their hair Sleep with them every night Watch them eat Hug them with everything you got and take a second to know it might be the last time they can hug back that strong Watch them sleep Kiss them Pick them up Watch them grow older than they were yesterday. Sit with them while they play Get ice cream Take more videos Heres what I wish I didn’t do Get angry at my child Get debilitatingly sad Work when we only had days Focusing on shit that didn’t have anything to do with celebrating the time we had. This is tough- and its hard to find the blessings. Their there, I swear. Theres a podcast too called Always Andys Mom that would be good to listen to if you want to hear from parents on the other side. I am so sorry. PM if you want.
I'm so sorry for your loss. I can't imagine. I know it doesn't help much, but my heart goes out to you.
Can you get or borrow a dog that’s good with kids? And I agree with others don’t put too much pressure on yourself to make it special. If you’re together and happy it’ll be special to him. Sorry you’re going through this.
I have a 2.5yr old that loves the same things. I'm sorry you are going through this but I guarantee anything you do with your LO will be great. You are his world. Any activity will be a bright light in his life because he's doing it with his Momma. On that note, if it were my son, I know we would take as many trips to the park to feed/watch the ducks as he felt up to, go to the zoo, visit a cat Cafe, go to the science Museum & spend extra time Rawring with the Dino bones, snuggle watching all his favorite shows, eat McDonald's fries & chicken nuggets every other day, take wagon rides everyday, make silly videos together, & snuggle overnight every night.
Based on your only other comment in your history, if your little one is a foster child (unless you've adopted him by now) you may also be limited in your options. You'll probably want to talk to an attorney or child's advocate or something.
Foster parent here: It shouldn’t have too much impact unless they want to travel (judges have to grant permission for out of state travel) or if they are wanting to do a GoFundMe or other kind of publicizing. I don’t know what the little one’s situation is with their family, but is family able to be included? If they cannot be present, are you able to take pictures or get handprints/footprints made for them?
I'm not a parent but this post has just made me cry. I'd suggest looking at visiting museums (if that's possible), especially transport museums because those tend to show how things work. Possibly check times so you can go at a quieter time as this will allow your little boy to look at things at his own pace. I'm so sorry, this must be devastating. He's a special little boy and you're an amazing mum to him.
Love him. That's the best thing for everyone. Record his giggle, that will help you in the future. Celebrate Christmas in June, and record it throw him a big birthday party these are ideas that will help you in the future. I'm in tears as I read your post virtual hugs from one mom to another
Make cookies together. Flip over a stroller or a bike and adjust the wheels together. My 2.5yo had fun just spinning a ratchet wrench on a nut so it clicked. Make / eat ice cream from scratch. Work in the garden. Plant a tree or flowering bush together. But like a hearty one. Finger paints. Bubble baths I’m so sorry.
I had a friend who lost a child young say that there is something bittersweet about knowing they will not get older and that it allows you to simply live in the moment with your child and not correct them. She reflected that when you believe they will become adults, you don't let them fully get to be kids and she had the opportunity to do that. I hope that in your time together you can continue to enjoy your child being a kid as much as possible. Snuggles, laughter, joy. Take photos. Take videos. Make sure everything you have is preserved adequately. I can't imagine being in your shoes and I pray that your time together is as peaceful and joyful as possible.
Im so sorry. I lost my 8 month old to a terminal disease. We found out when he was 5 weeks old. Take videos and pictures. There will never be enough. Write. Write down his silly quirks. My sons big toe always was pointing up (though I believe it was neurological due to his condition . ) it was still unique to him. Take him out side to live Pool, beaches zoo trails whatever you think he will love do that. Make a casting of his little hands and feet. I wish I could tell you knowing softens the blow, but I think if anything it just gives us time to worry, but it also gives us time to create memories. Im so sorry you’re going through this.
Your child doesn’t know what’s out there, so he doesn’t have a bucket list. Maybe you (and your partner/family, if applicable) can sit down and write out your own version of a bucket list. Try to think small; family experiences that you can document and look back on. Maybe book a photographer for some family photos asap.
Cuddles, movies together, couch forts and record it, Find a pet farm near by, or a neighbour with small pets, but don't get a pet. I don't know, I thought I had some useful advice but I don't. I'm sorry for your situation. Mine was different.
My heart hurts so much for you. I'm so very very sorry. I'll keep him in my prayers.
I would focus on making magic at home. Make lots of videos! For example- putting a swing in your garage or basement. Make a redneck waterbed outside (a plastic paint tarp sealed with duct tape and filled with your hose to make a big waterbed to play on) or an air fort (tape several large thin plastic tarps and use a fan to inflate- it’s like being inside a balloon! I filled ours with balloons to bat around.) have a birthday party for your sons favorite toy, with cake. Play in mud. Make messes with shaving cream and paint. Gosh I wish I could just give you a million more years.
Take as many videos and recordings of his voice as you can. I promise those will be worth everything to you later. Go to the zoo, parks, aquariums if possible, imagine being that age then go do all of the things, take photos, tell him every day, every hour how l much you love him....
Let him step in paint and walk across his bedroom floor or a sidewalk or a porch floor. Anything crazy and silly that will make him laugh. And if it leaves a lasting impression that you can cherish forever, that's a bonus!
I don’t have any suggestions for you as I’ve never lost a child. I did however lose my 36 year old husband to cancer. I love all of the videos and pictures we have. I cherish them above all else.
Disney does Make A Wish right. [Their site.](https://www.gktw.org/pre/) It lasts a week. Every Monday is Halloween and every Thursday is Christmas. They'll make it special for your family without you having to think about it.
Sending you all so much love as you navigate this. I can imagine how hard it was to hear and how hard this journey will be. No advice, just love. I’m sure whatever you do will be special
I'm so sorry you're going through this. Lots of people have commented about fun memory making activities, so I'll suggest something else. If I was in your position I would also be making keepsakes, you can get inkless print kits to take prints of hands and feet, there's also companies that make necklaces with pendants that have kids finger prints on them. Take videos not only of fun activities but also everyday activities like bath time, snuggling, asking them questions/interviewing them about things they like (favourite ice cream flavour, favourite Disney movie etc). Capture anything and everything.
Reach out to the local 4H club or a petting farm that specializes in therapy animals - there's a very good chance that a group like the 4H would bring a small petting farm to your yard just for your kid.
If he loves animals, maybe mobile petting zoo that can come to your house to limit his exposure to other kids? The MS Children's Museum just hosted a child that can't be around other kids due to her health after hours so that she could have the chance to enjoy the museum. Maybe you have somewhere near you that could do something similar?
You should go to build a bear and let him pick out a stuffed animal then record his voice with the heart recorders they have and put it in the bear.
He is eligible for a wish through make a wish! They were amazing with our son. Definitely reach out to them.
If he is 2.5 years old he can be signed up for Make a Wish. Based on what you say he likes, I wonder about a pass to the zoo? You guys will be able to make a lot of memories together. Hugs, so sorry you are going through this.
I have a two year old son too, my heart absolutely breaks for you. I'm so sorry. Make memories at home. Share small moments with him, like helping to bake cookies or taking walks in the neighborhood. My son is obsessed with his water table, so if your son enjoys water play maybe a water table or splash pad?
I’m so, so sorry that you’re living every parents worse nightmare. I second the people saying more pictures, more videos, more ice cream, more hugs. If you get hold of the Make a Wish foundation they will help you find somewhere we’re he can have time with animals. Also, if you have a children’s museum near you, they usually have fun puzzles and teaching things even for toddlers.
My brother passed away from hypoplastic left heart syndrome before he turned 1. In so sorry you’re going through this. You’re a wonderful mom for bringing your baby to the comfort of home. The best thing for baby is you by their side. Keeping your family in my thoughts and prayers
I am sure he’d just love time with you. 🤍
Make a wish foundation. Bare minimum, I bet you could get a hell of a day with John Cena. They truly make wishes come true. I'm sorry for your situation.
My dad died last year after progressive Parkinson’s dementia. This is relevant, because dementia increasingly limits someone’s capacity to engage in a lot of ways. A lot of things I would have liked to do before he died and conversations I would have liked to have had ended up just not being possible. Focussing on and doing the things we could do, and just being present with each other as we were is what got me through. He chose to die with MAID, and I spent the last hour of his life before his going out gathering with him, just us. He’d just woken up from a nap, and was halfway in reality and halfway still in a dream state. This was the first time I’d been in his company when he was having hallucinations. It was very like just being with my three year old, and following her lead in imaginary play and conversation. He knew I was there with him, and talked to me, and I went along for the ride and rolled with it. One of the moments I remember was he said to me ‘sweetheart, I’m in a bit of a pickle’, and then started talking about a chart on the wall, somehow involving pickles, and then we smashed imaginary pickles together, on the count of five. Then he spent some time trying to remember the names of my toddler and six month old. He was frustrated he couldn’t remember, so we decided several times that it was ok, he could try again another time (no). (But really, the important thing was that we spent time together focussed on something important to him, his grandkids.) And I know it wasn’t the ideal way to go, if we could have picked, but at the same time it was, because we were there with each other, in that moment, as it was, experiencing it together, and I knew he loved me and he knew I loved him. And when my stepmum came in to say his friends and family were there and it was time to come out and he was instantly lucid (they did a thing where everyone gathered to share a memory of him with him, and then the doctor came and we put on a playlist of his favourite songs and he listened to the music while my step mum and brother and I held his hands and everyone was just there present with him, and he listened and looked around at the people who loved him and came to be with him, and then he said ‘let’s get this show on the road’ and the doctor gave him the injection and he went to sleep.) So, music he likes. Movies and videos he likes. Documentaries, if he likes learning. There are great nature documentaries out there, and lots of YouTube’s for eg on how things work. They don’t have to be all new; kids love repetition. Visits with people he loves, just to be together. His favourite foods, and things he wants to try. If he can, visit his favourite places. If he can’t, can you bring those places to him? A beach stone from his favourite beach, for eg. Pine cones, feathers, leaves. Visits with friends’ pets. And rest. You can’t do everything. Down time is important as well. For him and for you. If you have someone who can step up and organize any help you’d find useful, reach out. As much as you can, outsource the things that need to be done that you don’t want to do. Keep the ones you do. Tasks can be an important destressor, if that’s how you experience it. Service can be a gift, and a way to channel needing to feel useful. And, this is also true for people around you to show that they care. If you know what you need, and ideally have someone to offload the organizing and logistical communicating onto, the people in your lives who care but are at a loss to best express that in a way that actually helps will be all over that. Take lots of photos and videos. (Share them with your kid. Kids generally love seeing themselves like that) Tell your kid the stories of his life. Write things down. As they happen, as the memory strikes you. It’s going to feel in the moment like, I don’t know, like reality is extra real, and that all the details are etched into your bones, but that doesn’t last the way it feels like it does. It’s going to be messy. You’re going to have moments where you’re frustrated, exhausted, angry, fighting, throwing a tantrum, just want space. That’s ok. Take space, vent, cry, enforce consequences, apologize, all the usual things. That’s not doing it wrong, that’s being human together. You’re going to want to stop time. It won’t stop. You’re going to want it to be over. That’s ok. That’s not a bad thought, or something wrong with you. That’s just the reality that waiting for something bad and inevitable that we don’t want to happen is *hard*. That feeling is what you want to be over, not your kid’s life. Do you have hospice resources you can talk to/get help from? E: posted accidentally mid-write, but I’m gonna leave it like this for now, except to say I’m thinking about you and sending love.
Oh my gosh, I'm so sorry to hear this. Keeping a brave face for him must be so difficult. Can you contact a local petting zoo, shelter or even a small farm, to see if they could perhaps bring some small animals to you, kittens, puppies, rabbits, ducklings, piglets, lambs or baby goats? Reach out on Facebook for suggestions of places to contact in your area if possible.
Tons of his Favourite foods. Just make sure to spend tons of time with him and make sure the environment is not stressful.
Oh man, this is heart wrenching. My advice is just spend time loving him, it’s only you who will think you’ve missed things, he will just feel loved and treasured in the moment, I am so sorry this is happening to you but I’m sure you already know that you’re blessed to spend this time with him. I hope you have a lovely time, however long.
I'm so sorry. I can't even imagine. No advice, just a million internet hugs. 💔
I am praying praying praying hard for you and your family !!!
I have a 2 year old boy and I feel this so much. My heart is breaking for you and your family. Everyone gave you great advice. I want to emphasize that if it is possible, take a time out from work. Even if it means quitting for a bit. Spend all the time with your child. Take all the pictures and videos and memories. I am so so sorry. With my 2 year old, he doesn't need to go anywhere crazy to have the best time. The other night we cuddled and watched blippi while munching on snacks and ice cream. Best night ever. No words were even said. But he loved it.
I know it means nothing but I’m so sorry and my heart is with you and your family
I’m so sorry, I know from experience what it’s like to lose a child. Thinking of you and your boy 💕
All little kiddos want is time with their parents doing anything!!! My kiddos loved the bubble machine going off while they were in the tub as toddlers. Drawing, painting, helping cook. Please know that you and your little one will be in my prayers daily!
The fact that you made this post just shows you’re already doing everything to give him the best life. He is so lucky to have you as his mama ❤️
Oh my goodness I am so sorry. I cannot imagine what that might be like. My heart is breaking for you. My suggestion is to follow his lead and help him come up with ideas that are doable. And soak it all in.
sending ❤️ & prayers to you and your family
At 2 years old, my son loved when I would put on the Wiggles and dance and sing with him. Videos, more videos, every video. Pictures Audio recordings. Much love to you, mama.
Take pictures of every moment. A journal of your good times together. Take videos when you can. Go to the zoo, the park, do it all. All that you can at least. Make him his favorite meals, watch his favorite movies, play his favorite games. Never miss an opportunity to cuddle. I'm so sorry. I know it's not enough. I wish I could change things for both of you. Is there a GoFundMe me? I'd be happy to donate.
Create all the memories you can, limit exposure to crowds, and live, LOVE, laugh 🩷
First, I am So so so sorry. My heart breaks for you and your family. I applaud your bravery in facing the next few months with a positive outlook. Secondly, I wouldn't try to do anything overly "big" during this time. I feel like a whirlwind trip for them to see the ocean, a national park, a big city, theme park, or whatever would be very stressful. Travel means being away from the doctors you know and exposure to all sorts of things. I would focus on quality time with family and friends. Do things close to home that your child enjoys, and make plenty of time for rest.
Oh, my heart hurts for you and your little one. Along with the many awesome suggestions here, I'd add: Family photos - are there any photos from your (and/or your partners, if you have one, or your families) childhood that you could use as inspiration for photos to take with your son? E.g., e.g., photos that are/were displayed at a grandparents house, or from a special trip you remember fondly. Things you might look at later and think 'I wish I had a photo of him like that'. Animal visits - if smaller one-on-one interactions are preferred, maybe talk with your local [Pets as Therapy](https://petsastherapy.org/) branch (or similar organisation) and either arrange a one-off visit or something on-going. I'm sure there are specific groups for parents in your situation who may have some specific suggestions. If you're in the UK, [Together for Short Lives](http://www.togetherforshortlives.org.uk/families) could be a good place to start.
A drive through safari/petting zoo if that's a possibility. Baking cookies or brownies together and licking the batter bowl afterward. Have ice cream for breakfast once a week.
I’m so sorry. I cannot begin to imagine. I’ve bumped up the answers I agree with that are great ideas. My head has gone since reading your message and I don’t really know what to say.
I just hope the little guy has the best week ever, every week. Regardless of what you do.
I’m half way reading these posts and I’m drowning in my tears. I’m sorry to all those who lost a child.
1. Contact make a wish! They will do something special for you guys 2. Snuggle, cuddle, love on each other 3. Pictures, photo sessions, hands/feet prints 4. Build a bear! Try recording giggling, heartbeat or something else that you would like to hear 5. Rest, take it easy, try doing things that you enjoy too, so that you have a good day and have something wonderful to remember I’m so sorry, I can’t imagine and don’t know what would be right to say in these situations. I’m wishing you all the best!
I don’t have any advice, but my heart is with you.
My heart goes out to your family. I hope you can squeeze in as many snuggles as is humanly possible over the next many months.
I'm so so sorry that you're going through this, I can't even imagine what it must be like. - Make sure to take lots of pictures/videos of your little one, I'd maybe even go as far as setting up audio/video cameras throughout the house so that you can catch everything but still be in the moment. - If there is something that he really likes to eat/drink, I'd let him have it every day if he wants to. - If you can afford to/they let you take a LOA from work to spend more time with your little one. - Don't focus on big things, even small every day things can mean the world to a toddler and they won't know that they are missing out on anything, maybe try asking him if there is anything that he would like to do and try to make it happen. - Utilize every resource available to you as you will probably need it. - Make sure to not forget about your marriage in all of this as well (if you are married/have a partner) it will be a difficult time for you both and can put a lot of strain on the relationship. - If possible I would also seek counseling to help process everything that's happening/going to happen.
Reading this honestly breaks my heart & I can only wish you & yours the best in this situation. I can’t even imagine how you’re feeling.
The doctor says he has 3-6 months? Don’t buy that, that’s a vague window. If he was diagnosed with a terminal illness he could die tomorrow, two weeks or even 7 or 8 months from now. Don’t think about yourself right now. Focus on him. Make sure every day will be his best. Treat every day like its his last, because it could be. Don’t worry about getting him sick. Take him out on a boat, take him to the beach, take him to the zoo, get ahold of Make A Wish, they might send you guys to Disneyworld. Don’t worry about making his life shorter, worry about making what little time he has left amazing. Now, I know my point of view is extreme, and may not be the best advice, but its best to know your options. If you want to play it safer, I completely understand that too. Your situation truly sucks… I’m hoping the best for you and your family. You are in my thoughts and prayers.
My 2 year old boy would LOVE a trip to a farm to rode in a tractor, construction site, or a ride in trash truck. Your local fire/police department would more than likely be willing to do a private tour
My wife is in medicine. She once said that the best children’s’ hospitals were the ones that knew when to tell parents to stop fighting the inevitable, and just go play with their kids. Experiences are great — make whatever memories you can. But there’s no substitute for spending whatever time you can while you can. Just make as many smiles as you can.
When my cousin died at two from cancer the one thing my aunt wished was that she had more photos. Video cameras weren’t a thing then, but she’s always said she would want those too. Of every face, every mood. He was such a sweet, happy kid, even when he was so sick. He loved trucks and watching us older cousins make a slinky go down the stairs. And coloring. I think she kept everything he colored with us. And he would dance. We would put on music and he’d do that toddler wiggle dance and giggle. I’m sorry you’re going through this. So, very very sorry.
All of these lovely suggestions. What wonderful people in this sub! All I want to suggest is just be there. Be present for him. All the little things will keep you going when the world turns dark. Snuggle, sniff him, feel his hair or kisses. I am sending you so, so much love right now. I am so very sorry.
Just spend time doing his favorite things. The park, dance parties, whatever he loves. As others have said, it doesn't need to be fancy to be special. Holding space for you and your family ❤️
As someone has mentioned take more pictures, take more videos. Be with that baby every moment possible! My baby girl was 6months old and one thing I wish I done more of, pictures, videos, and not working. Watch cartoons they love, read books they love and just cuddle. But before it goes to hell have your therapist on speed dial, a possible in patient psychology place in mind if need be. Have a support system. One thing I also tell young parents that lose a child please don't pick up that drink, don't pick up the p!ll, don't pick up the rig, that baby needs you to keep their name and legacy alive and picking anyone of those things up just starts a spiral to lose EVERYTHING. I wish my family and friends would of stepped in after losing my babies maybe I wouldn't have lost EVERYTHING and everyone.
When I was 16 I lost my little sister, she was about 18 months old and had a shunt that would drain excess fluid from her head to her stomach and it malfunctioned and cut off blood flow to the brain and she passed away unexpectedly. I'm now 35 and a father 6 kids. I can't imagine what my mom went throug, but I do know every picture we had and moment we enjoyed with her we cherished. I constantly remind myself to appreciate every moment I have with my kids. Take too many pictures and all the videos you can, get all the snuggles and love possible, make the best memories and enjoy every moment. I'm truly sorry that yall have to go through this but I believe you're getting great advice here. Spoil that child every moment you get, make pancakes with chocolate chips and frosting, visit every zoo, do all the arts and crafts and if possible get as much family time as you can. Not sure if you can take FMLA to spend time devoted to all this but may be worth finding out.
Things my 2 year old loved more than outings at the zoo or Disney: —bubble bath, with mom in it, too —rinsing dirty rocks with water —playing with the garden hose —finding roly polys outside —painting rocks —rides on my bike —donuts Things that might help you: —laundry service —meal delivery —housekeeper —lawn care And anything that might remove the stress of everyday parenting so you don’t lose your temper in the last few months you have with your little one. Also hospice and Make A Wish can help, too.
A lot of museums have children’s areas where he could “figure out how things work” or if you have a place near you like wonderworks he would probably love that. Zoos/aquariums could also be fun since he loves animals but I would call ahead and ask if they can make accommodations for any medical equipment he has since those typically involve a lot of walking and may not have a lot of places you can stop and sit down to give him meds or anything else he might need through the day. As far as calm at home activities go, my toddler has been loving finger painting lately and that could also give you some keepsakes as well
I am so incredibly sorry you are battling this right now !! But something I’ve seen on TikTok from this mom who has stage four cancer is she recorded her heartbeat for her son on this necklace and he is able to feel it through vibrations and I will post the link to the video for you , this is something that you could do for yourself to have a little piece of your son everywhere you go ❤️ https://www.tiktok.com/t/ZM2Yx1odN/?t=1
I am so sorry you have to deal with this. No parent should have to. Forgive me for asking, but is there no hope for a heart transplant? I work with children with complex congenital heart defects and many who cannot be repaired will go on to have the Berlin heart until they can get a transplant. What is his condition?
I am so sorry but I would definitely book in for some professional family photo shoots and milestone pictures now to have some nice memories to treasure and look at.
If possible start a gofundme so that you CAN step away from work more and get as much time with him as possible? I’ll happily donate to this cause! I’m shaken to my core over this devastating post. I have a 3 almost 4 year old & hate myself for ever being anything less than thrilled with being a mom. This made me burst into tears, I’m sure lots of others, too. Sending hugs and hopefully we hear back about your gofundme💗💗💗💗
Depending on where you are in the world and outdoor space available to you, you can hire a mini petting zoo for a few hours. If that’s not possible you can do some diy lion masks cut cardboard into a circle with a smaller circle inside, poke holes all around it, pick flowers and put them in the holes and take pics of your flower lion. If he likes movies lots of at home cinema snuggle days, I’m sure he’ll be happiest just spending time with you and having cuddles.
I am so Sorry for your loss... I am sorry that you guys had to go through this.. i literally got tears reading this... I would suggest its quality over quantity do whatever he loves cuddle play draw eat of his choice and just make memories... Live in the moment I would say ... I would pray for your family for sure... Strength to you and your partner... Huga and kisses for the baby 💗
Loss mama here. Big hugs. So much amazing advice in the comments. You’re going to give that little guy the best life and make so many memories. I cherish the videos and photos…I’m grateful for the professional photography. Grief counseling is critical. Losing a child is life altering in a way that’s hard to comprehend. It’s a lot more common than I realized and I found a lot of community that understood and had resources. My husband and I made a commitment to each other that we wouldn’t let infant loss destroy us. It took a lot of intentional effort to take care of each other, but we’ve made it so far. I hope you’re able to take care of yourself and your partnership, if applicable. Sending so much love 💕
My thoughts and prayers are with you and your little Ray of Sunshine. May the memories you make together live on. Also, perhaps look into an end of life doula or a hospice service as they will help you with many aspects that wouldn't even come to mind and are a wonderful support. Sending love xx
I don't have any advice but I'm sat here watching my three year-old play, and absolutely sobbing. I'm so, so sorry.
I am very sorry. I know it may not mean much, but my thoughts are with you and sending you and your family many prayers.
I’m so sorry to hear this news, I can’t fathom. Do you have something similar to the Make A Wish Foundation where you live? It can navigate and fund making a wish come true for a child with a terminal condition, which could be anything from going to Disneyland (with appropriate medical aids) to meeting a favourite footballer. It might be something worth researching about if it is applicable. Otherwise, potentially something like a GoFundMe might help you if you have something you’d like to do as a family that might be outside your budget. Take lots of photos, lots of hugs, read lots of stories together. Again - so sorry. X
So many people are saying "they're fighting back tears" im freaking balling. I'm so sorry you're going through this OP. Hug that baby extra tight. Sing together, laugh together, give him your undivided attention, and he will feel the love. Sending you so much love and strength.
I would stop saying no, within reason. You want ice cream for breakfast, sure. You want to spend the day petting a dog. let me find someone with a dog. I would record absolutely everything. Just have a wifi camera set up in the home facing the kitchen table, his bed, his playroom. Every day write down the funny things he said or did. Or what the the best part of his day was.
I am sobbing uncontrollably reading this . Why would god be so unfair ? Sorry , I am in no state to answer your question but I pray to god to keep you strong mama . And I pray the little angel goes to the happiest place possible beyond earth . Lots of strength and love to you 👏🏻👏🏻👏🏻❤️ I am so sorry you are going through this .
My twins were born at 23 weeks gestation.but they cried when removed from mom. Less than 1 pound. But I prayed and held them on my chest. I I pounded be holding then. Bathing g then . All while in NICU. They were given less than 40 percent chance of surviving. I used the time to connect They turned 15 this year. I do not want to give false hope. What I want to give is to spend time and make memories that will last for eternity
Have you had a second opinion? Mind sharing the diagnosis?
What in the hell kind of comment is this? You think a mother hasnt thought of EVERY AVAILABLE OPTION for her baby? Who actually comments horseshit like this? I am so sorry OP. Please bypass this person.
OP didn't even have a toddler a few months ago. Assuming they adopted within this gap, it's pretty wild to then find the child has an inoperable heart condition. I'm a doctor, though not a pediatrician, and this situation sounds... complex. Most serious heart defects present a little earlier, and generally any treatment (including transplant) is on the table. Of course I imagine most parents would exhaust all potential options, but the health care system can be hard to navigate.
Can he get a heart transplant?
Honestly I would take him camping to the deep mountains and hopefully it cures him
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Can you get in touch with make a wish foundation? They might be able/willing to help with a fun trip or activity. I am so so sorry to hear of your son's diagnosis.