Routine

When people ask me how I manage my days my response is usually, “I Do Not Know.” That is just the honest truth. For some sad people they think that I just stay at home all day with Jax and we have a grand ole time. That I haven’t made any progress. How naive of them. Jaxson…. although he’s good kid .. he’s a job within himself. During the week from 7am to 4pm, he does have a nurse that comes so that I can leave but that doesn’t mean that I relinquish my role as a parent. My days normally end around 12am or 1am at start at 6am. After I get Jaxson to bed that’s when I either do homework, straighten up, refill medications, call in refills, and try to get in some mommy time. At 6am I’m awake giving Jaxson his oral med and then his shot. I then start getting ready for class. I let the nurse in around 7am and then I head to school so I can be there by 8am. After class, I hurry back to my car because parking is outrageous and if you are a minute late in that parking lot, you can most definitely expect to have a boot on your tire and a ticket on your windshield. I usually change into my work clothes in my car if I have a few minutes to spare. I go to work and get off around 330 or 4. I will either go to the grocery store ( I like going without Jax sometimes because…. what parent doesn’t like going without their kids, duh lol) or I may need to stop at the pharmacy to pick up meds. I run home, and then sign the nurse out. What I just described is a typical day for me. Yesterday however wasn’t. Jaxson wanted to spend time with his dad so he went over to his place Sunday evening. I had an exam at 8am yesterday and during my exam, I was sent pictures from his dad of Jaxson’s face. His eyes were so puffy ..super puffy which meant he was retaining fluid and the decrease of his heart medication for the 2nd time was a No Go. After i finished my exam is when i saw the pictures so I met up with him in Irving,Texas to get Jax. I had already informed Jaxson’s transplant team of how his face looked and they wanted me to bring him in for labs. After I picked Jax up in Irving, I drove back to Dallas to go to Children’s Medical Center. He had labs done, a plan was discussed and then I brought him home. Instead of changing in my car lol I changed into my work clothes in my bathroom and then left for work. After work, I spoke with his delivery company that sends us his heart medication to make sure everything was correct before the new bags were sent to us. When Jax doesn’t feel well… my nerves are on edge. While trying to make sure Jax was ok and that his meds were in order, I also had a 3-hour exam ( that was split into 2 parts) that was due at 11:59pm. Thank God I managed to finish just in time. When Jax isn’t feeling his best he is super clingy so it was tough but doable. MY life revolves around Jaxson. I missed 7 classes this semester due to appointments and hospital stays for Jax. His appointments were only available the days I had classes and yep you guessed it , also the times. They needed to be in the morning so that his blood work would be accurate, especially when checking specific levels. In no way am I complaining by letting ya’ll know how a typical day is for me. I’m not looking for a pat on the back or a “Good Job”. I just want some to know that although in their minds I’m stagnant, or living off of child support, that it’s far from the truth. I’m his mother, it’s my responsibility to make sure he’s more than okay, to make sure he’s getting the care he needs I didn’t just start juggling Jaxson’s needs plus my own responsibilities.( his medication refills, cardio appointments, dentist appointments, Occupational Therapy, homeschool, any time he becomes sick and needs to be rushed to the hospital, appointments for myself, my classes, and work). Do I think anyone else could do what I do?…. Nope lol. Well…Ok, they could if it was something they had to do.Respect should be given where it’s due. But all in all, I don’t need validation from anyone anymore. When I first started to really take care of Jax by myself, I used to always ask why can’t anyone say thanks for taking care of Jax or you’re doing a great. Expectations of others can leave you with great disappointment. Now, as long as my son is good that is the only validation that I’ll ever need. Do I feel as if I fall short sometimes… Hell yes I do. But , I know that I’m doing the best I can and that is all I can do. Jax is a kid sometimes he is as sweet as a slice of chocolate cake and then he can have a moment where I’m questioning if he is really my son lol. I did the math and my days are typically 17 to 18 hour days and that’s during school. When I’m not in school, you can subtract a few hours. If 14 to 18 hour days are what I have to do then that’s just what will be done. Sometimes I don’t think we stop to actually think about everything that we do in a day because it’s such a routine. No matter what you’re the situation is, just know you’re doing the best you can, you’re strong, and things won’t always be the way they are 🙂

Until Next Time, Be Kind to One Another😉

Kandiss🌻

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