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!
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.
Blake had a scope done yesterday. Anything where Blake has to be put under is very scary for us. Blake likes to stop breathing while under, and bronchospasm too.
The week started off with Tayla catching lice again from school...twice in the last 3 weeks. The school knows there's a big problem yet they laugh it off (literally laughed when I told them of my annoyance the 2nd time around) she was the only one effected but there is still laundry to be washed and folded. On Mon, i was an emotional wreck. I cried most of the day as i picked nits out of Taylas hair. Ok, we BOTH cried. Blakes procedure was Fri and I was overwhelmed. Things just werent going as planned. I was scared of losing Blake and the rest of my life caused my fears to worsen and nightmares to happen. But we finally made it to friday! Blake chose his outfit. I loved it!
We got up before 5, took the girls to a sitter, and headed to Denver. We got in and got Blake checked in, and then waited.
This cute little boy stole my heart again. He must have knew my heart needed to hear it, because ever 2 min he would say, "i love you mom" several times in a row.
Then he professed his undying love to his girlfriend
Then we gave him versed and he got loopy and HILARIOUS!
So, we dont really know what is causing Blake's motility /digestive issues. We thought it might be a flare up with his EoE. To the naked eye, everything looked great! We will have to wait until we get the biopsies back to see what to do and where to go from here.
Last year one a rough year. So busy with 2 medical kids and procedures and surgeries, dr appts and therapies non stop. Thanksgiving was hard not being with family....we felt jumbled this year and that was a weird feeling we had never felt before. Christmas was hard. We didnt really buy our kids gifts, other people did. We have been trying to play catch up ever since shaun lost his job in May. He has had jobs since, but none that pay even close to what he was making before. Right before thanksgiving I opened my door to everything I needed to make Thanksgiving dinner. I cried, and prayed that whoever did this would know the magnitude of impact they had just had on our family. But more than that, I prayed for them to be blessed....to have what they needed in that very moment. I still don't know who it was, and I'm ok with that, but I promise it was not by mistake that thanksgiving dinner made it to our doorstep the way it did. Now fast forward to Christmas. Payzlee had been sick non stop for 2 months. I was tired, I was worn down, and more than anything I felt forgotten. I felt alone with all the trials going on. I prayed to see tender mercies. I prayed daily for a week for them, just to know someone cared. I really thought I was alone and there was no way Heavenly Father even knew my name. About a week later I had a crazy stressful day. It was another week full of dr appts and a sick baby. I was sitting on the floor trying to organize and fold laundry when there was a knock on my door. It was late, 8 ish ...and shaun wasn't home. I was skeptical to answer. I heard car doors slam and people running. I opened my door to find a HUGE basket full of everything I would need for Christmas dinner AND MORE. I went to lift the basket and almost fell over. That thing was heavy! My first reaction was to find out who it was, but as I went to go outside, the still small voice told me to leave it be....they needed to perform a random act of kindness without being outted, and I needed to be shown that I hadnt been forgotten. No one knew my heart that week. It was a tired mom heart. It was me, crying in the shower from exhaustion. No one knew yet here was a tender mercy. I brought the basket inside and sobbed. As was the thanksgiving day basket, almost everything in it was Blake safe. Thats not by chance, they knew...it was someone who knew us or had the means to ask someone who did. That in and of itself was something my heart needed to see. Things got even better a couple days later, a friend came over, handed me an envelope and left. It was random, and kind of weird, but I also didnt think anything of it, until i opened it to find a handful of gift cards to the grocery store and gas station. I instantly texted her through tears. She said her work had wanted to help someone who needed it this year and she felt impressed to give them our name. I could hear the voice screaming in my ear, "see, you haven't been forgotten". I was just a tired mom who felt so much desperation and failure, and aloneness. I was a mom secretly crying in the shower so I could put on a brave face for my kids and friends. I knew that Heavenly Father would show me what I needed to see and he did. But I wonder if I hadnt been looking if I would have seen? Yes i would have seen food on my door step, but would I have seen that it was a tender mercy meant for me? Would I have seen that most everything was blake safe? Would I have known that this is what I prayed for. Many MANY other tender mercies happened right before Christmas. Many teeny tiny things of friends randomly dropping things off...Erin seriously ♡♡♡♡♡....... or taking Payz because they knew I needed a break, or coming to visit, or allowing me to but in, and take over their nights...even driving them to their games on the weekends. Yes, driving a friend to a game has become one of my greatest tender mercies! I need her sweet spirit in my life. She impacts me and shows me more of an example of who I should be, when I am around her. She is my soul sister and provides me more tender mercies then I have ever seen.
When I look around me, I only see tender mercies. T
It's been quite a while since I have written. Our summer was a struggle. We spent 2 weeks living in a hotel while waiting for a house. We finally got in to one and have somewhat settled down. Shaun has been working at a farm driving harvest for them. He gets about 1 maybe 2 days off a month. It has been so hard on the kids and me not seeing daddy. Payzlee and Blake especially have had a really hard time not seeing him. But we are grateful for a job! Payzlee has been able to start drinking liquids as long as she has thickened liquid so thats awesome! Today Shaun got the whole weekend off! He hasn't had a weekend off in a few months! I went to zumba this morning and then decided we needed to go hiking! So I called up my friend and we loaded the kids up and went to Devil's Backbone and went up key hole trail. I forget how hard it is to be "normal" and do normal family things. The trail wasnt super long. It was a bit challenging but mostly because there were rocks and uneven surfaces. Blake did pretty good half of the way up. He needed some breaks and was a bit tired. I carried him a little up to the top and we took some pictures! This one kills me! Blue turned as we went to take the picture so blake is hugging blues rearend!
On the way back I carried blake 95% of the way. It was a mile or so long. It gave me time to think about how grateful I am that he tries. He has chronic fatigue yet he still pushed and tried and did awesome. It was challenging carrying 30 lbs down the trail but I am so grateful to be his mom! I wish things were different, that he could run and jump and play on trails like his friend was. I have to keep remembering this is our new normal. Our new normal will not ever be different, but I have to try...i have to try to do something normal sometimes, even if that means I will be carrying 30 lbs in my arms, on my back, and on my shoulders for an hour or two or three while he sleeps or is too tired to continue on. I feel so humbled by carrying him. It's what the Savior does for us when we stumble and fall and can't continue on. Its such a selfless act of love that may leave our neck and backs sore and hurting, but its done 100% out of love.
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On a side note....holy hotness ♡♡♡♡
I haven't updated the blog in a long time...on purpose. In the last 2 months we have gotten no answers with Payzlee yet her legs are getting worse. What we did find out, is that she does not have bowed legs. Her bones are completely straight. We did a brain and spinal MRI only to find out that neither revealed anything at all, or so we thought. Our pediatrician said the spinal report was not 100% normal while the orthopedic dr said that because the report said normal it was normal but 1 thing may be concerning and her neuro friend will look at it. Yet 6 weeks later, we still can't get neuro or ortho to update us AND our pediatrician said that the imaging is actually missing 3 ish inches of her neck and the back of her skull. ..the exact part they need to check if she has Chiari Malformation. We go to see a Neurosurgeon on Friday where we will more than likely have to repeat her sedated scans. This frustrates me. No this INFURIATES me. I want to know why her legs are bending and she can't walk without falling and why she cries out in pain and holds her legs. I am so exhausted emotionally and mentally from Payzlee and Blakes medical. To top it off, Taylas anxiety has been getting worse. She did so good for so long and is now falling apart left and right. We have her in seeing a dr but it is a lot. Mylee has had some side effects from her spinal meningitis as a baby and we are trying to help her before school starts. We also are moving. We have been looking for houses for a month now and nothing. I dont know why the right house hasn't come up but it hasn't. We actually did find a house, and then it fell through. I am trying my hardest to get packed, but it is SO HARD to pack with a husband who is never home and continual dr appts. It can be overwhelming. Packing is a private thing, to me. I would never ask a stranger or people I dont know very well to come help me, nor will I let them if they ask me. That's a job for close friends and certain family members. Its just how I feel. Man im going off rude! I surely dont mean it that way. Today I am tired of being emotionally tired. I want a place to live before we move out next Tuesday. I want some stability for my kids. I want to know I'm not failing, because I feel like failure today. I feel like things will never ever let up and they will only ever be hard. I wonder what I did to piss God off this much. I want to scream and shout and cry. I want to sit and cry. I like to sit back and look at things and I often find myself thinking, life can not be this hard can it? Well, i am proof that it is. Life is hard. It is hard to be human. It is hard to hide your feelings (i do this 24/7) it's hard to look someone straight in the eye and lie about how great things are and how great you're doing. It's hard to ask for help. I never do it. Sorry this blog is a vent. Its how I am lately. I'm am too tired and I just want to explode. I will try and update about what happens in 2 days for Payzlees appointment.