I have been posting a lot on my social media accounts about cuts to Medicaid programs and how they impact us. One of the arguments I hear against these programs is that I am “just being paid to parent”, and that isn’t right. So, I wanted to tell you the story of two parents. The parent I am to my son, Ranen, who is 7 yo. And the parent I am to Lyra, who is now 11 yo.
| Ranen: 7 years old | Lyra: 11 years old |
| Ranen’s alarm goes off at 6:30 am. I poke my head into his room to make sure that he is getting out of bed, and I let him know what the weather is going to be like so that he can pick out appropriate clothing for the day. After getting himself dressed, Ranen goes downstairs for breakfast. Since he is normally the first one down, he gets to pick what is on TV, and he eats his breakfast at the kitchen island while watching his show. If he needs a drink, he hops off his chair and gets the cup himself. He then pours himself a drink and sits back down. At some point is reminded 3 or 4 times that he needs to put his shoes and socks on before we need to leave. Once it is time to go, he grabs his backpack and a jacket (if needed) and lets himself into the garage to get into the car. He opens the car door by himself, climbs in unsupervised, sits in his booster seat, and puts on his own seatbelt. Once we arrive at school, Ranen unbuckles himself, opens his own door, grabs his stuff, and climbs out the car by himself. He gives me a big ole hug good-bye, and runs off to line up outside of his classroom door. After school, Ranen meets meets Lyra and I in the front of the school where Lyra is handed off to me. We walk together to my car, where he gets in independently (I don’t think I need to rehash the details from the morning). After getting home, he gets out of the car independently and often gets himself a snack. We do help him if he needs to use the microwave since he can’t reach it. Then he packs his bag for swim practice and we load back into the car. Once we pull up to the rec center for swim practice, Ranen hops out of the car with all of his gear, runs into the building, gets changed, and is out on the pool deck with his coach before I can even make it into the building. I don’t even go onto the pool deck during practice. I kind of watch what is going on, but I am mostly focused on Lyra and talking to the other parents. His coach says he’s going great and having fun. That’s enough for me. After practice Ranen gathers up his gear and meets me in the lobby to head back out to the car. Do we really need to go over him getting into the car by himself? Once we get home, I give him his dinner where he feeds himself (this is an important detail for Lyra’s side). Once he is done, he (sometimes remembers) to scrape his plate and put his dirty dishes in the dishwasher. This step is a work in progress, but he is getting there. Then he heads upstairs, where I am normally already working on getting Lyra down, and hops in the shower. He showers and gets himself ready for bed with minimal input from me. At the most, I ask him “what step are you on”, and he will let me know if he is getting on his pj’s or brushing his teeth, etc. He then climbs in bed to read one of his favorite graphic novels until it’s time to turn out the lights. Once it is time to turn out the lights, he yells out “Good night! I love you! See you in the morning!” and we yell all of that back to him. And he goes to sleep. | Okay, now for Lyra’s day. Our day as Lyra’s parents starts before she even wakes up. Assuming we haven’t been up to fix something with her feeding pump between 12am-4am, our morning starts between 5:30am and 6am because she needs six medications. One of those needs to be given at least 30 minutes before she has anything to eat. So it’s vital that she gets it no later than 6am on school days. Around 6:20 I wake her up and start working on getting her out of bed. She likes to snuggle under lots of blankets, so getting her out of bed can be a bit of a battle. She is in a safe bed, so she needs help getting out. I lift her from her bed to her changing table where I change her diaper (keep in mind, Lyra is 11 years old), and take off her pajamas. Then, she sits up and we work on putting on her shirt. While Lyra is able to take off a shirt at inappropriate times, she is unable to put on a shirt. Yes, we have worked on it extensively. No, we have not made any progress. Not only can she not put on a shirt, but she finds it very entertaining to fight us putting on a shirt. Her favorite thing is to put both arms down one sleeve, then grab the inside of the sleeve with a death grip. Pants are next and she is surprisingly more cooperative with those. After that, it is time to head downstairs, but first she must close all 4 doors upstairs. This is not negotiable. Have you ever tried fighting battles like this with a 2 year old? Try fighting them with a 2 year old the size of a second grader. That is what we are dealing with. So, doors are closed and we supervise Lyra going downstairs because she is a fall risk. Now, it’s breakfast time. With an 11 year old you’d expect they could get their own breakfast, or we could just place a plate of food in front in them. NOPE! Lyra gets a sausage patty, grapes/berries, and avocado all cut up into appropriate sized pieces. Then, because she doesn’t like to feed herself in the morning, we have to pre-load a fork for her to eat off of. She does not have the skills to use a fork independently. We have to put food on it for her. We also often have to bring it to her mouth. While this is going on, Lyra also needs 8oz of water through her feeding tube, but she can’t get it all at once or she will vomit. She gets 2oz about every 5-7minutes. So, it takes 20-30 minutes for her to get 8 oz of water. Sometimes it takes a little longer, because we are feeding her at the same time. Is it time to go to school yet? NOPE! Now it’s time to put Lyra on the toilet in her special toilet chair for about 10 minutes. Lyra is most likely to poop while sitting in her special chair after a meal. Pooping in the toilet also helps prevent her from getting UTI’s. After 10 minutes we carry her from the toilet to the changing table to clean her up and put on a fresh diaper. THEN it’s time for school…. kind of. While she was on the potty, the other parent was dosing the two medications that Lyra gets at lunch at school and putting them in a special cooler bag since they need to be refrigerated. They were also checking notes from school to see if they are low on any of her supplies, including extra cloths and bibs (for an 11 year old). Lyra needs her door opened and is helped into the car and her car seat. Since we have a mini van, there is enough space for her to climb semi-independently with support (when she is in the mood). Once Lyra is in her car seat, we buckle her 5 point harness (she still needs one to ride safely in a car) and we are off to school. Once there, we open her door and put on her shoes. We didn’t do it earlier because there was no point. As soon as Lyra gets in a car, her shoes come off. She also can not put on her shoes herself. We then unbuckle her and lift her our of the car. At this point I am met by a member of school staff. I give them any important notes about that morning and hand Lyra over to them (honestly, she is half dragging them into school by this point). I give them her bag because she can not carry it on her own, and I am finally able to take off…. |
Now, I am going to stop there. Notice, in the time it took to talk about getting Lyra to school, I was able to talk about Ranen’s whole day. I haven’t even touched on what I do while Lyra is at school, school pick up, transitioning to swim practice, what she does during Ranen’s swim practice, dinner, and her bedtime routine. I didn’t talk about the skin checks and the other nursing skills that I do unconsciously. So yeah, parents like me aren’t being paid to parent. What we are doing is beyond parenting. If we had regular jobs, the state would have to pay a nurse to come in and take care of our children. Not a CNA, not just a babysitter. By law, only a nurse can give medication. In most cases, only a nurse can give water/food/medication through a feeding tube. Nurses are much more expensive to pay than what the state pays us. Also, there is massive shortage of nurses, and it is impossible to be fully staffed for home health care. My husband and I do not just parent. We are also caregivers. There is a difference. I am being paid to provide skilled care for a disabled child while I parent. It just so happens that the child is mine.
