drykul

No I completely understand what you're saying. I felt exactly the same before I had him. But you realize how much stronger you are emotionally after you successfully go through that transition. Some people wouldn't be able to handle it and I would completely understand. I've had my moments, believe me. Doesn't make you a bad person, it makes you normal.

*edit: left out some words

The 10 year old step sister and the 5 year old step sister are very new to this type of situation and are a little timid about him which is very understandable. But they've shown him nothing but love and asked questions out of curiosity as kids do. Also the fact that they are only around him every other weekend doesn't help to quicken the pace of them getting used to him but they are very sweet to him.

The seven year old sister is very open about his condition to everyone and doesn't shy away from questions from other kids about him. She treats him like she would a puppy. Sounds kind of demeaning but it's the best way I can think of to describe it. She's always kissing him and rubbing his legs or head and telling him how much she loves him. It's very cute actually.

The 5 year old brother is protective of him. He's always making sure that his big brother is always included in everything. We're going to the park? He reminds me to make sure I pack Joey's wheelchair. We're playing a board game? He wants to make sure Joey gets his turn. We're getting McDonald's? He always wants Joey to get chicken nuggets like him (even though Joey can't eat chicken nuggets lol). If Joey's alarms go off because of a low or high pressure in his ventilator tubing, he's always quick to run in and see what's going on.

The 2 year old sister adores him. She always wants to lay with him to watch movies and play games with him. She always wants to help suction him when he needs it.

I can relate to how you feel. Honestly after his seizure, the doctors had ran tests but hasn't received the results yet but had told us that he was brain dead. We had discussed the possibilities and we had actually agreed to pull the plug. If he was truly brain dead we didn't want him to be trapped in this shell of a body. We couldn't stand the thought of hoping everyday he would snap out it knowing he never actually would. I remember this vividly. I was a loan officer at the time. I was by myself in the office. I was discussing all of this with my now ex-wife on the phone sobbing through every word. I couldn't believe I had to make this decision. I've heard about stuff like this before but never thought I'd have to go through it. We made the decision to pull the plug, however, I was about an hour and a half away and wanted to say my goodbyes. That was the longest yet shortest drive of my life. So many thoughts and emotions running through my head. When I walked in the room my ex-wife was holding him. His eyes had gone cross from the seizure and his arms were curled up so tight to his chest. It was a horrible sight as a father to see your child like this. I broke down in the room and just cried and hugged and kissed him and told him how sorry I was and that I loved him... I'm tearing up now remembering these thoughts again... But we were ready and when we were going to tell the doctor they said that the test results had come back and they may be wrong that he was showing brain activity and he had a chance to at least somewhat recover. I latched on to that and never let go.

I now have him every other weekend and split holidays asking with the other kids. Since I drive a Charger, I have to borrow my brothers van to pick them all up. I have to pack all of his major equipment back and forth each time. I'm working with Apria to get some of his equipment permanently at my house. But until then for just him I pack a ventilator, ventilator stand, oxygen tanks, pulse oximeter (sp?), suction machine, breathing treatment machine and nebulizer, a luggage case with emergency supplies including an ambu bag, extra trachs, the medicine (the name escapes me at the moment) administered to stop a seizure in its tracks; also another bag with his food for the weekend, all of his meds, and I know there's some other stuff I'm forgetting.

I will take your advice. It'll be hard and I'm not sure how I'll bring it up but you're right. This is something that I need to stop procrastinating about.