Saturday, May 5, 2018

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.

1 comment:

  1. Oh cassie 😍😍😍 thank you! And I never thought about it like that. I love tha way of thinking!

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