Here are some things I wish I could tell people when they meet us:
When Nathan was born it was supposed to be the happiest day of our life but it wasn't, it was the scariest. Nathan was 38 weeks when he was born but was sick and we knew it, we knew he was going to have to fight. He was in the hospital for 20 weeks before he came home, he was home for 3 weeks before he went back to the hospital. His first year of life was spent mostly in the hospital. We saw the nurses in the hospital more than we saw our family. Most of the time there was someone better qualified to care for our son than we were.
Don't stare at Nathan's trach, it's how he breathes. Don't ask me when he will no longer need it, when was the last time you survived without breathing. Don't treat him differently than you would treat any other child, he breathes different and that's it. Don't talk about him in front of us, he has a breathing issue not a hearing issue. Don't reprimand your child for asking questions, I don't mind answering your questions. Don't ask me what I did to cause this, it's mean and hurtful no matter how sincere you were being.
If you don't understand what he's signing to you, ask me, I would rather you ask me and can communicate with him than ignore him. If you have questions about his trach ask me in a nice way, I have no problem sharing but don't make him feel bad for something that isn't his fault. If you are nervous to let you children play with him that's fine, but he's just like any other kid and most times he can handle it. If you see him get 1/2 red it's just nerve damage don't laugh at him it's not his fault, we don't laugh at you for things that aren't your fault.
His stamina isn't great because of the trach, not because there is something wrong with him. He loves to play with other kids and gets sad when they don't want to play with him. He is old enough to see that he is being treated differently. He is just like any other 3 year old, he loves fire trucks and the movie Cars. He loves to run and jump and play. He is imaginative and playful, he loves to read and color. He is good to his little brother and loves to help.
If I'm short with you and seem like I'm on edge it means there is something going on with Nathan. I don't always want to talk about it, so don't push. All things Nathan are hard for me to talk about sometimes, I still feel guilty for his birth defect and that isn't going to change. Don't try to talk me out of it, it's annoying and useless. I've had many great doctors tell me it wasn't my fault and that doesn't matter to me, the guilt remains.
Please know that while you can make plans for your children a few months in advance and know you will be able to stick to them, I don't have that luxury. We make plans a few days in advance based on Nathan's health, we can't predict how his health will be in a few months. I'm not going to leave my sick son in the hospital so I can do something else (I did that once and regret it). When Nathan is sick I drop everything, and that may just be plans I have with friends. It's nothing personal it's just my life.
I could go on and on. I wish people just knew how to act but they don't...