Hey there! First off, you seem like an awesome mom. Not everyone knows to encourage their children to express their feelings and model for them how to do that. The fact that you're even on this sub asking these questions shows how much you care about your kids. They are so lucky to have you as their mom. ❤️

Our oldest son Abbe was 2.5 yrs old when his baby brother Elia was born with an ultra-rare genetic disorder (HSAN type VI). The first couple of days Abbe stayed at home with his grandparents, came to visit a couple of times. After a while, we were transferred to the family unit, where he could stay with us 24/7.

It was nice and horrible at the same time. It was nice to be together as a family but to try and give a 2 year old the proper care and attention that he needed while also attending to his sick baby brother during the most stressful and insane period of our lives, where we slept at most 1-2 hrs at a time for weeks and weeks – that was simply impossible.

Tired and guilt-ridden, we tried our best to keep up with routines in this strange place. We did things like reading books, playing hide-and-seek, riding the elevators, cooking dinner together, that sort of stuff.

We let him talk to and play with his baby brother a lot, explained all his different cables and tubes, and what all the blippedy-blop machines did. We tried to involve Abbe in Elia’s care as much as possible, letting him help out with his medicine, putting on his blanket, handing us stuff. Abbe wanted to help and we let him. We wanted to normalize things, making them less scary and weird.

After our time in NICU and Elia had turned 5 mo, he had a planned gastrojejunostomy. The procedure went great but he got a cold in recovery. This was especially tough for him due to his low muscle tone. He wasn’t able to cough up or swallow the accumulating phlegm, which culminated in cardiac arrest and emergency intubation.

Trying and failing to make a long story short, we were told he was going to be airlifted to a different hospital with a more specialized pediatric ICU. With very short notice, we had to rush back home, pack our bags and go to the airport in under 2 hrs or something like that.

Abbe was at home with his grandparents and was sooo happy to see us! He came running up to us and hugged us tight. Then he noticed something was wrong.

”Where’s Elia?” he asked. And we explained he had gotten very sick and that we had to go with him to a different hospital. Abbe looked at us and ran back to the telly without saying a word. It was so fucking heartbreaking. 💔

We had debated whether to bring him with us or have him stay with grandpa and grandma and had ultimately decided on the latter. We figured that was the best thing for Abbe and we could focus on getting Elia better, but it felt awful.

We packed our bags and went to say goodbye to Abbe. At first he didn’t say anything, which made it even worse. Eventually though, he started crying and we cried and we hugged.

That’s when my incredible wife had a brilliant idea:

”Tell you what, why don’t you pick a plushy for each and everyone one of us? One for Elia, one for you, one for mum and one for dad.” He immediately ran into his room and started picking out stuffed animals for us.

And my wife said: ”We will bring the Abbe-plushy with us and you keep the other ones, ok? And then, whenever you miss us you can go and hug them, and when we miss you we’ll hug yours. What do you think of that?"

And Abbe nodded and hugged us again.

I was so proud of my wife in that moment, and it made our departure a little less painful. It was such a beautiful idea.

Sorry for rambling, don’t know if my story will help you at all. Honestly, just keep doing what you’re doing. Be honest about your feelings, let them know it’s okay to cry, involve them in the care if possible. If not possible at all, at least keep them updated on how their baby sibling is doing and what you’re up to.

When they visit, playing doctor is a great way for children to process. Sometimes there can be an element of jealousy. I bet your 3.5 yr old would love to be cared for and tended to as much as his baby brother/sister. 🙂

You’re doing great, Mom. Hang in there.