After 33 days, my son is set to come home from the hospital in 3 days. During his stay, he had to get a tracheotomy and feeding tube put in. But in 3 days, he comes HOME! I can't wait. I can't wait to have my family all under one roof. It will be so nice to sit and watch TV, put my daughter to bed, see my son sleeping in his crib. It will be wonderful!
Except I'm terrified. And angry. And sad.
I'm terrified that there's going to be a situation where I am responsible for knowing the proper steps to save my son's life. Me. An English teacher. Somehow I'm supposed to be qualified enough to know how to work through life and death problems, assess the situation, plan a course of action: suction, oxygen, bag. I mean, I know that I've suctioned dozens of times, changed the trach, bagged him all while in the hospital, but to do it at home alone has me terrified.
I'm also terrified to have a nurse in my home. Don't get me wrong. I'm very thankful to have nursing care for my son so that I can do things like work outside the home and get a full night's sleep, but the idea of having someone walking around my house in the middle of the night is scary. They'll be able to see everything: how I eat popcorn like a savage, how I sometimes slide on letting me daughter take a bath, how I'm not always a pleasant person to be around. They'll see it all. Not only that but I'm also having mixed emotions about needing someone else to care for my son, MY son. I'm his mother. I shouldn't need anyone else to watch over him. It should be me doing it all. The idea that I can't do it alone has me feeling angry and sad.
And don't even get me started on what our life will look like because I have no clue. At this point, I'm convinced that we're going to turn into hermits because the sheer amount of equipment I need to leave the house with my son includes another adult and enough equipment to assemble the 6 million dollar man. I keep picturing different scenarios, trying to figure out how it'll all play out. For example, if we go to a friend's house for a barbecue, what happens if my child falls asleep and needs to be put on the ventilator? It's going to happen. And it's going to be a show for all the kids and parents to see. They'll ask a billion questions, they'll sit there and marvel at my husband and I, ooing and ahhing over what great parents we are. But we're not. We'll just be doing what we have to do. And it'll piss me off that they'll be looking at me with pity, or awe, or asking questions, or not asking questions and judging, all of them judging. And then I'll feel bad for feeling angry so I'll feel sad. Sad that I can't just be one of them... carefree and enjoying a drink on the deck. Or perhaps instead, my husband and I will want to go to the zoo. But how do we do that when our battery life for the vent is only 5 hours? How do we get on the train at the zoo with all of our equipment? Strollers are stored at the back of the trolley so we won't have access to our equipment. But we always need access to our equipment. Should we not ride the trolley? My daughter will be so bummed. Or maybe we just ask the powers that be to allow us access to our stroller. And then we'll be the people that everyone stares at. And the onslaught of emotions will ravage me again. Or further still, what if my husband and I want to go out on a wine stroll on a Saturday but the nurse is only there at nights on weekends? Should we seriously make one of my parents or my in-laws responsible for making life or death decisions for my son's care? I don't even want that responsibility! How can I ask one of them to do it? There is so much unknown. And it has me terrified. And angry. And sad.
I guess only time will tell how it all plays out. My type A personality is just going to have to learn how to be a type Q.
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