I'm a big believer in if you give your thoughts a voice they will lose their control over you.... and the reality of things is that I'm drowning in thoughts... they are suffocating me to the point that I'm in therapy and taking a Mindfulness class trying to learn how to slow my brain down and truly live in the moment. My demons are making that exceptionally difficult right now. It's not my first round with therapy. I'm a huge advocate for seeing a counselor, therapist... whatever it takes. For me this time it's working with a therapist who specializes in trauma... it's learning to "give myself some grace" when logically I don't even know what that looks like or means because I'm so critical of myself...
My therapist told me on Wednesday towards the end of our session that there are a million things when it comes to emotions and feelings but realistically it comes down to either you live in love or you live in fear. They cannot coexist. I have slowly over the past 5 years gone from living in love to the fear has taken over. I have CTSD (Continuous Traumatic Stress Disorder) and Situational Anxiety (meaning all things related to Madilyn and her medical "issues"). She told me that there's a very fine, blurred line between avoidance and acceptance... I believe I actually live on the avoidance side of that line while verbally boasting acceptance... "It is what it is" is one of my favorite things to say when it comes to Madilyn and her health. When the truth is I'm not okay with being told "we don't know".. I'm honestly so fucking sick of hearing that phrase.. that and "we've never seen this before"... our last inpatient stay has pushed me right over the edge...
I've always known that Madilyn may not wake up tomorrow.. we've heard it soooooo many times but hearing it and living in the reality of it are two different things. We've never had to make that life or death split second decision we've always been warned about. Until now... it puts a whole different spin on our reality. I use that fucking pulse ox machine to check her oxygen levels when I see her struggling... when she's sitting with her mouth open and her tongue hanging out, hunched because it's too much work to sit up straight and I can hear her breathing from across the room and it tells me 98% or sometimes 100%.... and I want to throw it across the room because something isn't right... her little body is working so hard for that and I can see it and I can hear it... I can't truly explain how it makes me feel.
I have so many emotions, demons, feelings, thoughts and guilt that are swimming around in my head so much that it's overwhelming and I often put earbuds in and turn music on just to drown them out. I have so much guilt over all the times in the past 2 years that I have broken down after an episode with M that I have told my husband that I can't imagine doing this for a lifetime.... all the times I've told him at 2 am when she's screaming or we haven't slept that I hate our life and don't want to do it anymore. I've voiced that fine line of devil's advocate when I say I understand how some parents just walk away... I could never do that but trust me... sometimes when I'm driving home from work I've thought about what would happen if I simply turned my phone off and kept driving with the music really loud... not indefinitely... not forever.. just for hours or maybe a day or two.... and then I come to my senses when I see my exit sign and come home.....
When we were in that hospital room and she couldn't breathe... when she was visibly struggling... when they told us she was blue.... all that kept going through my head was "from your lips to God's ears... choose your words wisely" a friend's mom told me that over 15 years ago when I used the phrase "I love them to death".... she said that's a phrase that God could interpret as a wish..... I don't ever use those words anymore.. I haven't since that day. But in that moment it made me question if God took my rants as wishes.... I don't even know if I believe in God and these are the things that go through my mind repeatedly...
We added to our list of "I've never seen that before" in multiple ways when they did Madilyn's surgery that day... it took over twice as long because when they went in laparoscopically to place the new feeding tube they found a thick web of scar tissue encasing all of her organs and they don't know where it came from or why.... then when they got through that they found all of her organs stuck together and they had to separate some of them without damaging or "tearing" them in order to place the tube, and then they told us that typical anatomy has markers so you know you are looking at the appendix, the stomach, the intestines etc and Madilyn's anatomy has none of those markers... if she didn't already have a G-tube placed they would of not had guides to tell them where they were at...... and then she almost died from her lung collapsing,.... the doctors don't know what to do with it or about it, they've never seen it before.... as of now it's just another thing for them to be aware of when she's having an issue because now they'll need to check to the scar tissue to see if it's growing and causing blockage to her organs... our Pulmonary doctor is talking to our Hematology doctor because she is questioning if this is why Madilyn's blood is the way it is....is this why lab work shows that her blood is struggling to circulate enough oxygen to her organs? If it is wtf do they even do about it? Nobody knows... our life is all one big fucking medical experiment...
That experiment, our life, specifically her life and this past year has left me all sorts of struggling.. I did what I needed to do for my physical health and totally ignored the deep down mental health part of it.. now I'm stuck in the trenches of all of it... I gained 20 pounds over the past year because I get caught in stretches of not mentally being able to physically make myself do something... even though I know that's what I need to do, I mentally know it's the best choice and yet I just can't. I've never been where I am right now. I've never spent this extended period of time where I cry every fucking day... and the most random thing will set it off. Sometimes it comes out of nowhere. I'm at the point that I get to work and I have massive anxiety going on... someone asks me a simple question when I first get there and I'm in tears and struggling to breathe. I have to go hide for a minute, compose myself and then I just scurry around busying myself with everything but nothing reminding myself to breathe and that I can truly leave if something happens with Madilyn... eventually it passes... but it's hell... I feel like I have no control.
In the past I've been on antidepressants... I refuse to go that route... I need to learn how to cope with all the feelings and emotions and where they are coming from. I know the source, I know the reason and numbing won't fix it... so I have to feel it, all of it.... the good, bad and the ugly... and figure out how to live with it. I have to figure out how to be in 20 seconds of complete silence, with nothing but my breath, and not end up in a puddle. The Mindfulness instructor and my therapist both say "give yourself some grace".......... hahahaha...I am my own worst critic.. I truly don't even know what the fuck that means. But I am attempting to learn. That is the important part. That and those pink fucking shoes...
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