My mom will be gone six years on December 8th and there are still times I wish she were here. Last night I would have given anything to have my mom sitting there with us at the hospital. We had to go because my pain had become unbearable, my ostomy output has increased way too much, and running a low grade fever. I was lucky to have an amazing doctor who sat down on the bed and talked everything out with Me and Josh explaining what was in my charts and how serious the situation has gotten. As he spoke I would have given anything to have had Josh on one side of me and my mom on the other demanding out of the doctor despite there was no way she would sit back and watch her daughter die, believe me Josh does it well on his own. It is simply the point that most of us want our mommies when we are sick even when we are twenty seven years old.
My doctor was amazing every time he came in to discuss things with us. Initially he came in to examine me and see what our first concern we needed to address. He ended up staying the first time for almost an hour just listening. He said he had worked under my surgeon and that he is the best of the best when it comes to critical care, but it was unfortunate that me being so young is considered a critically ill. He was looking through my book of a chart and going over it with us. I need major surgery for them to close the fistula and remove some severely damaged intestine and they are feared to do it because I am so weak if anything goes wrong I am going to not have the nutrition/strength to fight post op infection. They are considering a shorter course of TPN to get my nutrition levels up a little more for surgery, but medicine is fighting because my body took a hard hit with that last infection having all that yeast in my blood stream and if they started TPN and couldn't get it in time it would for sure kill me. Come to find out my organs had been taking a much harder hit than we knew. We knew the long QT was worse, we have already had one bout of acute renal failure and my muscles are wasting quite a bit.
I broke down and started crying by the end of the night scared of my odds, knowing that whatever way they go we are facing a dangerous complications, but our choices are to take a risk and don nothing or trust the doctors and I made a promise to a certain to a certain two year old that I wouldn't give up on him, so bring on the pain and I will take it for my husband and son. I just wish I had my mom around to help, chasing after the grandson I know she would have loved, curling up with me and taking care of me. Josh does all of that, but he isn't my momma. I believe that she would have been able to put that bottle down if she had gotten to see Damien and had to join the fight to save her daughter, at least I like to think she would. Josh runs around changing diapers, cleaning up my puke, and all the while working full time. I wish so much that I hadn't black listed myself with my other family. It is generally Josh and only Josh wheeling me around the hospital, sleeping on ER floors, and so many other things. Maybe it is childish and I have no one to blame but myself, but there is a good chance that I won't live to walk Damien to kindergarten, but I'm sure as hell going to fight because I made a promise to him the day he was born that I would fight with every fiber of my being to be with him as he grows up.
Is it selfish that I want my family back too, that I want them in the waiting room when I go to major surgery or battling another massive blood infection? I'm scared on so many levels and one of my biggest fears is how vulnerable I feel, I've never been good being fragile or asking for help. I do for myself when I can and now I am expected to tell everyone my limits, I'm suppose to be in my wheelchair when I'm up and about not at home, some days I can't get out of bed and I have to send my son to the sitter, and I feel like a burden. My husband has to take care of me all the time and at this rate he always will, all the wild adventures we've dreamed of taking are now either crossed off the list or having to be modified to accommodate my new normal. The doctor yesterday, who was wicked cool as previously stated to me that I have to listen to my body, that I can't do all the things I use to be able to do. He even told me not to let anyone tear me down because I'm doing a hell of a good job being a mommy with how sick I am. I can still be a good mom even if I can't run him around the park, we sing, we dance, we play with toys, arts and crafts, and other things. I wish I felt like that I still want to push myself farther than I should to play with him.
I keep looking at my phone and I want to call my mom and I can't because she is gone and my dad and step mom don't want anything to do with us either just like everyone else. I've apologized repeatedly for the things I've said, but I just don't fit in. I'm just scared right now and finally admitting it. I'm fighting a battle for my life and I want more people on my team. My husband is wonderful, but I want my parent's that I have left to be there too, to understand how bad the situation is. How do I make them see how serious this disease is and that they are going to have to give me all new organs eventually. I plan on writing another blog less depressing than this later, but since my meds are kickin in and lil man is passed out napping Mommy has to get some shut eye she didn't get last night. I just want my family to see if they read then that I do love them and I wish I fit in better with them, that I wasn't so awkward. My closest family member that loves me round the universe a thousand times and does everything she can we protect her from some of the bad news because she is older and sick and I can't lose her right now.
I know that my fears aren't going to go away, but eventually I know that I can adjust to this new life just like my husband and son have already done. I can't do it all anymore and that being sick doesn't make me less of a person and I don't have to let anyone treat me like I am. Things are over until they are over and I have a lot of fight left in me and I am pretty sure that wherever my mom is up there she is screaming at me to keep fighting, that I still have a difference to make in this world, and by writing, vloging, and becoming an activist for eating disorders, self harm, along with digestive tract paralysis , and not forgetting home schooling my beautiful lil guy every chance I get. I'm sick...not dead. I can make a difference from my laptop or from my desk and wheelchair. I will not be ashamed for having a disease. As long as this heart is beating whatever jacked up rhythm it decides to make I'm going to keep going, the pain subsides with proper medical care, we will face TPN and surgeries as a family even if it is just me Josh and Damien.
I will end with the phrase that my wonderful husband tells me every time I have a breakdown moment and the pain makes me want to quit and I want to hide in a dark room and feel sorry for myself because I'm sick...."TAYLORS NEVER GIVE UP"! I'm knew to the Taylor clan, but I know I won't give up either.
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