We're moving again; always moving

I have been wanting to write this post for a while but wasn't sure I was ready to write it. We are moving again. All I ever hear is, "you're moving again" (cue eyeroll) or "you move more than someone in the military". (cue my own eyeroll). So why did we start moving? We have a start to moving, it's true! Back in 2009 Shaun got hurt at work. In 2011 Blake was born. I remember the 4th of July right before his birthday (his bday is the 15th). We were getting ready to test him for EoE in Boise. I was terrified. Sure enough, the following week we had a positive test for EoE with Blake. My entire world crumbled. I thought this was the worst thing that could happen. I remember the dr telling me and Shaun to never let him go on elemental formula because he would never be able to take anything if we go that far, and that it's nasty anyways and we wouldn't want our kid to be taking it. I remember asking about feedingtubes to which this gi told Shaun and I to never ever agree to a feeding tube with Blake. That if we did, he would be dependent on it for the rest of his life....that he would never be able to come off of it. I was terrified. Why would I want my kid to have a feeding tube? ( um hello!!!!) So Shaun and I sat down and prayed about things. At this point, our home was almost in foreclosure. We were trying to short sell it but the bank was causing more issues with our CASH offer than we bargained for. We prayed about things and felt strongly that we should move to Aztec, New Mexico. I didn't really like the gi we had seen in Boise. He was very arrogant and didn't have time for us. I was able to find a gi in Albuquerque that I liked. We had a pediatrician first in Farmington but he didn't know how to treat Blake. I ended up finding a really awesome dr in Durango (45 min from Aztec) who knew what EoE was and knew how to help us. At almost 2, Blake was still losing weight, drastically at some points, and he helped us with formula and specialists. Out of the blue, Payzlee started having weird issues. The seemed to be gi but we couldn't find anything wrong in the belly department with her. We knew that we needed to go a different direction. Just when things started to get really bad with Payz, our gi in Albuquerque up and left. Quit without notice and moved to the south to his dream job. Our pediatrician suggested we look into Denver Children's. We were able to get paperwork, flights, insurance approvals, hotels, tests approved, and everything else we needed very quickly. Within 4 weeks we were sitting in the new gi doctor's office. I knew people who were on the waiting list for 6 or more months when we got in. I felt so blessed. I knew this was a tender mercy from the Lord. We went to a week long of doctor appointments, testing, and therapies. We knew we would be spending a lot of time at this hospital. A week after we got home from this doctor's visit, Shaun went out of town to Greeley. Greeley is about 1.5 hours away from Denver. The company he was with had an opening in Greeley and we decided to ask if Shaun could get transferred. I spent every week 3-5 days out of the week going to the hospital 1.5 hrs away. On any given week we had 10 appointments for Blake and Payzlee. Blake got his feeding tube in Nov of 2014 and 6 weeks later Payzlee got hers. This was so overwhelming to me. It was very hard. Shaun had been laid off from his job and was bouncing around from handy man job to driving job, pretty much anything to help us pay rent and put food on the table. I developed severe anxiety and panic attacks. I was going to every doctors appointment, procedure, and surgery by myself. I would sit in the waiting room and just cry. I wished so deeply that there had been someone to sit with me. I think this is when I became more closed in and really stopped asking for help and refusing any help offered. Our life is too overwhelming for those around us so we have learned to adapt without help. Not in a bad way but we have learned to make things work so that we don't need help other than a sitter now and then. I woke up one day after several middle of the night panic attacks and decided I wasn't staying in Colorado anymore. I needed to be gone. I needed a break from life. Shaun got a job and we moved to Idaho. I found out I was pregnant a week before we moved from Colorado. I was so sick. I had to ask friends to come help me pack because I couldn't stop throwing up. We moved in with my parents while we figured everything out. I need a break. I developed severe panic attacks and anxiety during my pregnancy. I was put on meds but it didn't really help. It got to the point where Shaun and I were trying to figure out our future. Shaun wanted to go to NDT school but we had no way of paying for it. It was going to cost us 10,000 to do school and with our crappy credit, we couldn't get a loan. He would also have to be at the school for quite a while which we couldn't afford since it was unpaid. We tossed around so many things and after much prayer decided to move to Georgia. Shaun was trying to get into an NDT school here that was local. Shortly after moving here, Shaun learned that the school decided to close and no longer accept students. We were devastated. Why were we here? School that's why. So what's next? Shaun started looking in to other options of NDT schools, and found a school that had changed a ton of their policies and procedures. They decided to let you pay $2,000 to get in vs $10,000 and the decided to change the hands on training from 6 weeks to 3 weeks, and you could now pay monthly payments for school. This was not at all like it had been even 6 months before. Shaun decided this online school was the one he wanted to go to. So now we just had to come up with $2,000. We prayed and prayed and talked with everyone we could to figure out a way to get the money to get into this school. We were at church when our bishop asked Shaun about work and school. Shaun told him what he had found out and what he wanted to do but didn't know how to. Our bishop told Shaun to call someone from the Stake and speak with him. There was a program to help those who wanted to go to school. You had to qualify for it, but They would pay up to $3,000 towards school. So Shaun started looking into this program and talking with this guy weekly. We were able to qualify for this program and they paid the fee for Shaun to get into school. We have had so many tender mercies while living here in Georgia. But I hate it here. I miss Idaho and I miss my friends and family. I have weekly migraines. I'm so tired of them. My depression, anxiety, and panic attacks have worsened living here. Shaun will be done with school in December and is guaranteed a job after graduation. The type of job he is looking at isn't local. It's a job where you can live where you want and he will work where they want. Yes it's out of town but the type of schedule will work perfect for our family. So we started talking about where we wanted to be and where we should go. Both of us missed the Burley area. We made a prayerful decision to move back to the Burley area to settle down. This. is. scary. We are literally taking a leap for everything. Just when we seem to start losing hope, we get a small tender mercy and know that what we are doing and where we are going is the right decision. So, why do we move often? Do you see a pattern? Had we not moved to New Mexico, we never would have found the pediatrician we did that suggested Denver as the place we should be, and who put a call in to his friend that was the gi down there that we saw. Had we not been transferred to Denver, we never would have gotten the medical help that both kids needed. Had I not made the decision to take a year break, I don't think my pregnancy with Axel would have ended well. Had we not moved to Georgia Shaun never would have gotten into school. There are soooo many reasons why people move often and keep moving. Did we want to move a lot? Absolutely NOT. But we have and our family has grown and been strengthened with each move. So folks, we are moving to the Burley area in which we will move only 1 other time and that's to move into a house that we will buy eventually!!

Dr. Pepper saved me and might just save you

Dr pepper saved me today. It kept my eyes opened as i drove an hour away for my kid to have an endoscopy. My kid whos healthy and doesn't have issues. the one that now chokes every time he drinks anything and sometimes eats food. My radio played Jason Aldean as I drove through the misty day and cried halfway through my trip. What a lonely world this medical world can be. I feel so loved and yet so alone at the same time. My thoughts race non stop knowing i have to do this alone. Not in heart but in body. I want my husband. I want my mom. I dont want to be here but I am. I joke with the drs and nursing staff and behind closed doors I shake with terror and fear. I wipe tears away and pretend its just allergies. I wore mascara today because if I wear mascara, i can't cry because people will know. This helps me check my emotions better. I cant really cry because if i really cry, i may never stop. Shauns may not have a job to go to after today (which doesnt matter because we're moving) because of some selfish asshole whos never had any struggle in his life other than which expensive car to buy and which take out place to order from. They wanted shaun to come in at 3 for an overnight shift. He asked his supervisor before that if he could come in at 8 so he could get the kids to the sitter. the supervisor agreed but the ceo of the company pitched a fit. Yesterdsy shaun went in at 8am for a shift. His start times vary every day. He was told he would more than likely be written up and it was alluded to that he couldnt or would be fired over this. He explained the situation and that his other kids have had 3 different surgeries or procedures since working there and not once has he asked for time off or for any accommodations. This selfish bastard didnt care. I would never wish this medical life on my worst enemy but i wish this boss could have something simple medical wise happen to knock him down a few notches. I hate feeling out of control. I hate feeling like i can't breathe. I feel like i cant control whether i cry or not i hate that I cant stop having panic attacks. But what i hate the most is that Axels endoscopy appears to look fine yet we know there is issues and is following the EoE trend. Im tired. I just want to sleep....and give up. I do. Being a mom is hard. Being a medical mom is harder. Doing it by myself is overwhelming on both me and Shaun. This life is hard. One day, when all my kids are grown up, im going to look back at this life and wonder how i made it through. Right now im just going to cry a little more and invert a little more and do my best to be a decent person despite not wanting to be today. Dr. Pepper save my life and it also might save yours.

Dental What?!

Yesterday was Payzlee's first surgery. She had to have a bunch of caps and or fillings done. She did GREAT! they ended up having to pull one of her molars as it had become infected. They stitched it up to make sure the hole stayed closed and then put her on antibiotics. She slept for a long long time afterwards, and when she finally woke up, she said, "mom! I took a nap!" I told her she was going to go to the hospital just to take a little nap. My heart felt comforted as I wasnt sure if she would understand what I was saying as she hasnt in the past. Usually when Payzlee wakes up from surgery she is very out of control. She is violent and screams so loud that I can hear her in the waiting room. She kicks and hits and within minutes, before parents are supposed to be back there, I am always brought back to help. Yesterday was different though. She woke up without even crying! She was so pleasant and sweet and kind. I couldn't help feeling like her reaction was my tender mercy. We had been told the wrong building to go and spent 20 min looking for the place so we were 30 min late and even after they called me, I still couldn't find the place. I ended up having to walk about a quarter of a mile to get to the correct place. I was mentally exhausted by the time I walked onto the surgery floor. But even as frustrated as I was, I could feel little Angels sticking with me and Payzlee with every move we made. Yesterday was very mentally and physically draining but it could not have gone smoother. For this I am so grateful!

Well, here we go again.

I have decided to start blogging again. Back when the medical hit the hardest, this was my out...this was my way of expressing exactly how I felt. I'm really struggling with those same feelings again and I think it would be really soothing for my soul to start this back up. In July of 2016, I found out I was pregnant with Axel. This was about 2 weeks before moving. I was so sick. Day and night sick I couldn't keep food down. It was such a trying 9 months. He came on Feb 3, 2017. He has been such a heart healer. He has hit milestones that Blake and Payzlee never did. He has been my best nurser and best baby of all 5. He has the BEST personality. I laugh every day because of him. He refuses to stop nursing. He's 15 months old and nursing is his life!!!! Just recently he has started choking when he drinks. I have heard it before but it wasn't ever consistent. It is now though. When he drinks from an open cup or bottle he chokes. From a straw, he chokes. Sometimes when he nurses he chokes. When his sippy doesn't have a stopper, he chokes. Sometimes even with a stopper he chokes. I know this scenario all too well. He is aspirating. This has been my life for the past 6 years. Blake and Payzlee have both aspirated. Blake just needed thickener for a while, while Payzlee had an emergency NG placed and shortly after had a gtube placed. She was then able to move on from no liquids to thickened liquids. March of 2017 we went off all thickeners. We rejoiced. It was such a huge milestone! I cried tears of joy. In April of 2018, we put her back on thickener. My heart wants so bad to cry from her regression but I just don't have it in me. I'm just too tired. My mind is too tired from medical and dealing with my own PPD and PTSD. Just recently we have found a dr who is trying to help Payzlee. She wants to redo all of her testing. I agree and I'm so grateful to have a specialist listen to us that something isn't right. I left that appointment feeling happy, like something good was going to come of this. It quickly turned to anxiety and despair as I remembered what all the testing meant and how much had to be done and how many times I would have to put Payzlee under just to see if we can figure out what's going on with her. Depression had set in by the time I drove the hour home. I cried all the way home and half of the day. I have spent most of the week in bed or on the couch because of how bad the depression has been. It's so hard for others to comprehend everything we are going through. I hate the sympathy that people give me or the "let me know if you need anything" talks. Let's be real. I'm not going to ask. I'm not going to call someone up who said to let them know if I needed something and ask for dinner, or ask them to watch my kids so I can sit on my bed and cry for an hour. It doesn't work like that and this is why. THIS IS OUR LIFE. This isn't a one time testing thing. This is a daily thing for us. A weekly, monthly, and yearly thing for us. This is what our family does. We are a medical family. I can't just call a friend up and express how I'd love a meal brought to me. First off, I just couldn't bring myself to do that. Second off, We have allergies. And that scares people and is overwhelming. I totally get that and it doesn't offend me. Sometimes I wish for the normal things that other people have....To just have someone pick up a pizza and drop it on my door step. But that isn't possible anymore and I know that. I know that When this testing is done, there will be more tests and more dr appts and more surgeries and more medical. There always is and there has been for many years. Asking for help with our family isn't ever a one time thing. That's why I don't ask. If someone helps once, then they feel obligated to help again and again and then they get overwhelmed and distant. I never ever want anyone to feel obligated to help our family. I hate obligations like that. This isn't their cross to bear, it's ours. This is our family's trial. One day, it won't be like this. One day, my kids will grow up and move out and this will become their trial. They will call me when they get overwhelmed with the dr appointments and surgeries, and I will be there when they need me to be. It's hard to be strong. It's hard to do it all alone. My amazing husband is going to school and working more hours than he should be just to make ends meet. We can't afford for him not to right now. But what I wouldn't give to not have to walk through those hospital doors by myself on Monday when Payzlee goes under for her first procedure. And what I wouldn't give to not be alone in a few weeks when she goes in for a sedated MRI. I know this kills Shaun about as much as it kills me. It's so hard to not be there for your wife and kid, but it isn't an option for us to have shaun take several days off in May and June so that I can be comforted while my child is back in surgery. All these old feelings are creeping back up on me. This is literally what I did in Colorado. Rarely was shaun able to go with me. I remember several times sitting in the waiting room praying Blake or Payzlee wouldn't code and just praying that someone would text me or call me or come sit down by me and talk with me. Too many tears to count spilled over sitting all alone in those waiting rooms, doing it all by myself. I remember praying for weeks and days before surgeries that God would send someone to come sit with me so I wouldn't have to be alone. It never happened. Not once. But I can't help but feel like I went through that to help someone else. And I'll go through this again to help someone else in my future. This week has been rough. This blog post isn't super positive. But It's how I am feeling right now. I feel stressed and worried and alone. So alone. Unless you have been here, you just can't comprehend how hard a medical life is. I can go from feeling great and fine one day, go to a doctor appointment the next day, and by the time I get home from that appointment, it feels like I can't breathe. It feels like I'm drowning and can't get my mouth up above water. It feels like my lungs are burning from holding my breath and that simple release to find air just isn't there. I feel like I go to bed, wake up, mix feeds, do school, and everything else with an on button. When it gets flipped up I do what I have to. And that's it. Medical is hard for me. Very very hard. We have had a year and a half break from lots of medical and now it is in full swing again. This is my life. It isn't pretty or beautiful. It isn't fancy and envious of. But it's mine and I am proud of these kids I am raising and I am grateful for their love and understanding when mommy struggles.