Instability

When I started this blog my intent was to keep a journal of everything that we were going through so that one day we could look back and realize how far we had come as a family. Approaching everything completely honest and letting raw emotions just flow onto the page also gave me a sense of relief, it was my outlet. Recently I noticed however that I have steered away from my original intend and kept the majority of my posts factual to what was going on with Wyatt.  I have pushed aside the therapeutic intentions of keeping this blog. Well, not today. Today’s post, as lengthy as it may be, comes straight from my head and my heart. Some of it may only make sense to me, some of it may sound harsh to other people but I need to let it out and not worry about how it sounds. So here it goes…

If you’ve been following along you know that the last few weeks have been nothing less than hell on earth. Our hopes of receiving better treatment for Wyatt by seeing the CCHS specialist in Chicago were crushed, then Wyatt got serious ill and required hospitalization, and now we are back home to pick up the pieces. I’m not sure what exactly happened to me personally in those last three weeks but for lack of better words, I hit rock bottom. I’m not certain what the clinical definition is of what I am going through but suddenly I can’t seem to cope with the simplest of daily tasks anymore. It’s not that I didn’t have bad days before where the stress of everything just suddenly hits you like a freight train and you grief the loss of your expectations of what your child was supposed to be like. But then you have a good cry and push forward. Well, lately those bad days have been piling up and I can’t seem to shake it. The other day I felt so overwhelmed at the simple task of deciding what cereal to buy at the grocery store that I started crying. Making even such an unimportant decision was too much for me to handle. Almost daily I’ll go into full out panic mode not even knowing why. I can’t figure out what to do with myself. I can’t sit still but I don’t have the focus to do anything specific either. Most days now I have no patience and no desire to be around anyone. I’m so anxious all the time and all I really want is to run away from myself. I’m angry at other people who have normal kids. I am resentful toward Wyatt that I had to give up my dreams, my business, all I ever wanted to do. I am deeply hurt that I can’t spend more time with our other three kids and have basically no idea what’s going on in their daily lives. I get angry when other people get to spend time with my other three kids instead of me. I am frustrated that no one can really understand what it takes to keep up with Wyatt’s medical needs and daily care 24/7. I’m tired of only thinking and talking about Wyatt’s needs…  I’m not sure what brought all this out now. My husband even asked me why out of a sudden I am so overwhelmed and freaking out about everything when nothing has really changed about who Wyatt is or how we need to take care of him. Logically I know he’s right. Wyatt is still our son and we know him better than any specialist in the world. But then there is the additional charting, home nursing again, the potential risk factors of CCHS were thrown right back in our faces as if we were too stupid to know what could go wrong, and to top it off we were told we should not hold our son to comfort him nor rock him to sleep and to “simply” blow in his face to stop him from having episodes. How dare they tell us how we should or shouldn’t raise our son. How dare they talk to us as if we didn’t know what CCHS means and what other risk factors are involved aside from breathing insufficiencies. How dare they talk down to us as if we were sitting back and throwing a party every time Wyatt had an episode. How dare do they put doubt in my head of whether I’m capable of taking care of my son? I’m so angry about the Chicago trip, I can’t even put down adequate words to describe it. What’s worse, I feel guilty for putting Wyatt through all those assessments that now proved useless and most likely led to his most recent hospitalization. Maybe his ventilator settings weren’t perfect and he was a bit overventilated before but at least he didn’t get sick and was happy. But we couldn’t just be happy with that, we had to push the envelope. There we went thinking some specialist could magically make things better. Instead, it ended up making Wyatt miserable and made him so sick that he was in critical condition for a few days afterward. We could have easily lost him. Just one episode could have pushed his little body past his limit… Maybe all the trauma from the last few weeks brought on my mental instability. Or maybe the last few weeks just finally pushed me too far. After all, I can’t get the images out of my mind when a few months ago the nurse didn’t realize that Wyatt decannulated and he had this horrible blank stare for 5 minutes that required me to call 911. And then there are the images of the numerous times when I’m staring at my own son who is blue and purple lying lifeless in front of me and all I can do is ambu bag him and hope he opens his eyes again. That’s all I dream about now when I can actually shut my mind off long enough to get some sleep. How often can a parent see their own child like that before going insane? My husband says maybe I still feel guilty about Wyatt’s diagnosis. My logical mind is telling me that there is nothing I could have done differently during pregnancy and it was just a fluke of nature. But maybe guilt is somehow still floating around in my mind somewhere. Thoughts of whether or not it was the right decision to even have a fourth child certainly have crossed my mind. And then there is the doubt of whether we are making the right medical decisions for him and what quality of life he will have being ventilator dependent. My family’s idea is that it’s all about how we raise him, the confidence, understanding and support that we provide for him. And while I agree with them, I can’t get rid of the fear of Wyatt coming up to us one day and questioning why we made these decisions for him and why we are expecting him to live like this. I don’t have an answer for those kinds of challenging questions because the decisions we have made with Wyatt go against what I previously believed in. Before having my own ventilator dependent child, I always felt that no one should have to live like this. As cruel as it sounds, I always felt that nature’s law of only letting the toughest survive was there for a reason. And then Wyatt came along and medical technology challenged everything I felt so strongly about before. Now we were faced with making decisions that no parent should ever have to make. How do you stand by your previous beliefs when it’s now your own child you are looking at and have to make these decisions for? My husband and I can’t talk about this subject too deeply because it just brings out too much pain and therefore leads to arguments. But these are the things I am struggling with every day. Up until now I have been keeping so busy that I haven’t had time to really let those thoughts and emotions sink in. But then the numerous cyanotic breath holding episodes happened for basically three weeks in a row. Having to ambu bag your own child that many times in three weeks makes you question everything all over again. Was this really fair to Wyatt to make him go through that every day? How will he develop neurologically with all these episodes? How much longer can his little body handle these episodes before we have to do full blown CPR on him? What will be left of my sanity should I ever have to do full CPR on Wyatt or even worse, if I am unable to bring him back from one of his “usual” episodes? Will our family even survive in one piece should something ever happen to Wyatt because even now we are sometimes hanging by a thread? Did we even make the right decision to have Wyatt trached and mechanically ventilated?... The hopeful side of me says Wyatt will prove us all wrong and shatter all those fears and insecurities one day and we will all come out stronger together. But even that hope can’t erase those thoughts out of my mind. I wish it were as simple as people say to just accept things for what they are and move forward. Unfortunately, that’s not how my brain works. And then there are the worries of how Wyatt will be treated by others. I also feel so guilty for putting our other three kids through this, even though I know it will make them more empathetic and generally turn them into better human beings. But I can’t help to think about how much they have to sacrifice for their little brother and how much of the precious time I am missing out on of them being innocent kids because I always have to put Wyatt’s needs first. I also miss my husband. We each had to take on different roles to keep things running but it seems we often live in separate worlds now. It feels like we lost that connection we used to have where we would always know when something is bothering the other person and we’d always find a way to talk to one another. Everything in our family used to be team work and now things - out of pure necessity - had to be split up. I’m scared that our family won’t survive this level of stress in one piece for much longer. I sometimes resent Wyatt for taking that away from our family. I know it’s not his fault or anyone else’s fault for that matter but those feelings are still there… I have good days with Wyatt too and then it seems manageable but every time he has another episode I become more and more distant. Some days I don’t even want to look at him or hold him. I’m so scared that something is going to happen that we can’t prevent or can’t fix… I miss the days before we had Wyatt. We thought we had problems then but in all reality, life was so damn good and simple back then.