Holy Hot Mess

DustyMark's Journey 2 Comments

May 2

(we are covering April 28th through this morning)

Remember I also do this for myself….because I’m not journaling and I will never go back and remember how this all went down. I should be journaling on top of this to record my inner thoughts…the ones you will never read or hear…for my soul. But I probably wont. This is it. And I do it for all of you who want to know what is going on whether its purely out of curiousity, to pray for us or for both. In the beginning it was the easiest way to get the most information out to the most people because I could not possibly text back that many people one at a time.

I need to find humor in the diaily grind (we all do) or you lose your mind. So if I ever seem insensative, I’m not, I’m just surviving. Don’t worry, I totally lose it when people aren’t looking, I’m not completely heartless. I might be slightly crazy though.

Thursday was Aly’s birthday and since we were celebrating both her and Hatchers’ Sunday…I did the same thing I did with Hatcher. I tried to make the morning special and intentional. On Hatchers birthday she told me she wanted flowers…that she liked them. I remembered and on Wed night I pulled into the grocery store and picked some out. They weren’t the freshest but its the thought that counts right? That’s what Mark said. I was upset (because I was tired) that they all looked half dead, but I got them anyways. Alys doesn’t have to get up first thing so I made pancakes and covered them for her to heat up, left the flowers out…with a huge note and some snacks and re-used the balloon garland and place it at the bottom of the stairs. She saw the notes and pancakes and snacks but she didnt’ register that the flowers were for her til that afternoon and the garland fell so she she it looked like I tried to block her upstairs. She had beautiful flowers sent to her at school that put mine to shame but she said she loved both. We decided to take Aly and Hatcher out locally for ribs…but Hatcher already had plans. So it was just the three of us and Mark said he would tolerate being in pain to watch Aly eat ribs (its a sight to behold)

I haven’t been sleeping great so when I finally got to bed I slept hard…til 3am when Mark came in to hand me the phone because Felicity had gone into labor and was at the hospital. I started to panic inside because I didn’t want to miss anything and I didn’t want to share the moment (I’m selfish) and it was hard to understand how far along she was. Did I need to hurry? I had no idea. In hindsight I should have slept a couple more hours and prepared the pill regiment for Mark but I just got dressed and headed out. Most of my stuff I needed was packed already. PLUS, Amy (Mark’s sister who is housing Felicity) had been up all night and needed to go rest and get back to her family. Her contractions were pretty conisistant and worth breathing through but they weren’t taking her to where she needed to be so after 12 hours post water breakage they suggested petocin. That did get her contractions on a conisistant and more aggressive pattern. For a while she was coupling (and indication that the baby was “sunny side up”) but once on the petocin and after getting into some new positions, the coupling stopped and she was making good ground to 6cm. Once she was there she was able to decide on whether or not she wanted an epidural (which used to be a major decision and is like clockwork now). After that she was able to relax and rest between some pretty major contractions (maybe for like and hour or so) and then it came time to push. Man did the memories come flooding back!! Actually the whole thing was an emotional roller coaster. She really did handle it well but there were moments when you see the small girl in her..the one tramatized by life as a small girl. It made me sad that the pain is still there. The fear is still there and it can be paralyzing! It can keep you from going forward in life, and I believe that it has. She only had to push for less than an hour and even though it felt hopeless…like she was getting nowhere…all it took was feeling the head to know she WAS making progress and it gave her the energy and strength to literally push forward. I put on my gloves and was ready to assist this precious life into the world. Felicity was tenatious and got that head out…continued on with the shoulders and I got my fingers under those slimy little armpits and helped lift her out and up onto mom. What a crazy experience!!! Super emotional for Felicity and something I will remember forever. She had one little eye peeped open and I was literally the first person she saw except babies have horrible eyesight so I was like maybe a big gray and black blur with light behind me. I just like to think that I was the first thing she saw…even if she saw nothing. Felicity was a warrior. 7 lbs 10 oz and 20″ long. Kiyah Mae was born at 5:01pm April 29th 2022

Two hours later I had gotten a call from Aly. I asked her to text me because Mark was at the meet but ended up not feeling well so she was taking him home. I asked her to call me when they got there. That morning, since I didn’t set out medication, Mark took his chemo pill before calling me. Its a 24 hour medication and he takes it at night. So he had just doubled up on it less than 12 hours apart and I wasn’t sure how it would affect him and its not like I have this direct line to his doctor. I don’t know if he felt sick at the meet because of that or one of the other many things going on with his body. He has so many variables happening that you really don’t ever know. Its always a bit of a mystery. When he got home he leaned over to rest at the top of the stairs while Aly unlocked the door (she was on the phone with me). I wasn’t there but it sounded like he got dizzy or blacked out when he stood back up (ya know how that happens sometimes if you get up too quick). I heard Aly yell “dad” and then click. Talk about freaking out! I was able to get ahold of her, she called me back and it turns out that he is fine but it was scary and since I was unsure of any damage or if he was really sick or not, I left the hospital and headed home. When I got there he was sleeping and he had been talking in his sleep (he does it a ton now) so I just kept an eye on him. Aly went back to the meet to get Hatcher and come home. I knew she would be shaken up and I had this birthday thing planned for her that I was trying to pull together from the hospital so it could still happen. I wasn’t sure she would want to go anymore. I talked to her, assured her dad was fine and that we can’t have control over everything all the time. We aren’t suppose to. She agreed to go and I thumbed up the involved parties and we went back into action but I had nothing left in me. I had been up since 3am…gone through several adrenaline spikes and had to change plans like 3 times. I was petered out. The plan was for her friends to arrive first at the Inn and then I take Aly and they surprise her but instead we grabbed pizza, went first and then surprised them. My lovely lovely lovely friends had brought the food and snacks and drinks there ahead of time and decorated for me. All we had to do was show up. Once her friends came, I left, because she is 18 and I can! Plus I was only .5 miles away. At the time I felt like I should have done so much more but she was really appreciative and her friends had a good time. So it was worth it. They had breakfast together and then Aly and I headed back to the hospital while Hatcher stayed with Mark. This time I had all his meds out in containers with labels.

Its hard. Sometimes I just want to do simple things but they end up being so stinking hard! The reality is, I can’t just leave (for long periods). Even if I had a chart out…pharmacueticals and supplements are hard. Keeping an eye on symptoms is hard. Knowing what is the new normal and what is not… is hard. To ask my daughter to be in charge of that really isn’t fair. I felt very torn Saturday morning as my husband is my first priority but I will never get back the moments of my first grandchild and possibly (because we never know) Felicity’s only child. These decisions are hard. But Aly was willing and I had a friend offer to help. The following day I had family coming over for birthday cake etc and I didn’t have the cake made nor the food but I did buy the buns and refreshments. I figured it family, so I don’t have to have it perfect. There’s grace. So my friend took the cake mixes and the meat and recipe and made it for me!!! Aly took care of the house when she got back from the hospital and everything was ready. They even had dinner made for them. I do NOT deserve this but I am so thankful for it. I was able to stay the night with Felicity and help with tiny tot pumpkin face while she got the hang of being a mom. It wasn’t a restful night but it was a priceless night. I pushed for discharge (sometimes it can take a while) and we were able to get to our house by 12:15pm. Plenty of time. Felicity decided to come home with me so that Mark didn’t have to wait to see the baby. Our house was packed but everyone ate well and it was fun. My nephew was there and we hadn’t seen him in years!! Normally we have these birthday gatherings but not alot of people can make it but this time we were overloaded with lack of places to sit. The party was short and sweet. Felicity went home with Amy and family and by 3pm the house was pretty quite. Time to nap! Well…that didn’t happen. In fact, I didn’t see the back of my eyelids til afer midnight. I just want to sleep!! Why can’t I sleep????

Mark was really ready to dialyze this morning as he had alot of fluid building up but one session doesn’t do alot. He will replace the by morning. Its hard to get on top of it all while his blood pressures are so low. “They say” it may be due to the liver. So hopefully the regiment we are doing helps his liver to liven up and maybe we will see a change. I couldn’t get the top needle in today. His fistula rolls a bit and isn’t super straight and so it just couldn’t hit the track. Also we will need to replace all his SAKS with a different script because the pressures and rates he is running at make the machine beep constantly. I think I have like 40 SAKS to dispose of now! yikes. Mark also has been doing a ton of talking in his sleep. He isn’t sleeping well at night so he falls asleep alot texting or while he is talking…and its like he continues the conversation whiles his eyes close but it doesn’t always make sense so sometimes its really funny but really….its not. I mean, we laugh about it but the reality of all the things going on in his body and how tired it makes him and how it changes our daily lives…is very evident and eye opening. It makes me sad sometimes. I layed in bed last night and he was reading with the bedlamp on. I looked past him to our family photo on the wall…and could literally compare the two Mark’s. I want God to restore him so badly…to the smiling laughing full physique person he was. I see no signs of that. It’s hard to watch the changes. Our family operates different. Our relationships are different. Everything is different. I couldn’t imagine looking at my own body daily, watching it change and shrink. Seeing a youthful 46 yr old change into something resembling a grandfather. Not feeling as sharp…always tired and hurting. I have lots to say about this but really don’t know how or if I should. I have lots to say about Kiyahs birth but sure how or if I should. (just personal stuff I should keep to myself or journal)

My brain swirls a thousand miles per hour ALL the time. Its hard to find 1 hour of quiet time where I can think without interuption. I could get up early but I can’t seem to fall asleep well so getting up is really hard. If I’m not thinking about upcoming appointments….procedures…supplements…food or pharmcueticials…I’m think about an up coming projects and how to get the material and then maybe things that need to get done around the house. I’m wondering how I can make it to the next track meet, if Mark will want to go and what to bring so he can sustain it. Its everything you think about too. That’s the thing, you have to still do all those things AND worry about all the other stuff too. I don’t know how to explain it. My brain doesn’t work like normal peoples…Mark can deal with something and move on but it will stay with me for days and just jump in line with all the other thoughts pressing on my brain. I can get stuff done but it’s in a weird round about way…that doesn’t make sense to other people. I know which pile my paper is in that I need. I know exactly where the brown shoes are amoung the bins in the garage. My mess makes sense. Same with the mess in my brain but my goodness, if it had more order I would like that better. I have been meaning to dig out a new drain line from the box in the back of the closet but can never remember. Today we have a track meet and so I’ll get home…do lunch etc…and I’ll forget again. Someone text me!!! I’ll get it done when it needs to get done but it is really really nice when stuff is done ahead of time in an organized matter. Wouldn’t you agree? I get exhausted more from mental activity than physical which stinks becausee I like to exercise or go for a run but when you are beaten down mentally…you don’t have the energy to go after the physical.

The next podcast has released…Mark and I interview Karson and Abby. Links below:

amazon prime


Its also on Buzzsprout but I don’t have that link 🙂

Comments 2

  1. We think of you and pray for you often. Such deep waters, and I cannot imagine anyone dealing with all of this nearly so well as you guys have done. May our Father lift you each day, giving strength and peace as only he can.

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