[This will ramble, but I need to get it out.]

I’ve been listening to a certain song on repeat lately. Most of the lyrics don’t really apply, but this part does:

I genuinely counterfeit all my conversations/Keep my truth, because I’m scared

Kudos to the person who can name the song and artist without the help of Mr. Google. [No, Rachel, you may not play.]

Why does it fit so well? It literally describes how I am when talking with someone about my Moyamoya diagnosis. Because I’m scared out of my mind and I venture to guess maybe three people know how I truly feel about this whole brain surgery thing.

I meet with my neurosurgeon on Monday, I guess to discuss the results of my tests and schedule my surgery.

Confession #1: This still doesn’t seem real to me sometimes. I mean, parts of it are real. The mounting medical bills are real, and terrifying. The headaches are real. The never ending stress I feel is real. The tears I’ve cried almost every single day are most certainly real. The breakdown I had a few weeks ago when I spent a lot of my child free evening sobbing in bed because I am so damn scared was incredibly real. The side effects of a medication I shouldn’t be on at 27 years old are real [but mild, and I’m grateful for that].

What isn’t real to me yet is the surgery. In my head I know it has to – and will – happen in the very near future. I was thinking about this the other night when I couldn’t sleep, though. I don’t know if the surgery will feel real until I’m actually checking into the hospital for it. Because the letters I’ve composed to my family in my head don’t make it seem real. The conversations I’ve had with people about it don’t make it real to me.

And I keep hearing that I’m handling this so well.

Confession #2: I’m not handling this half as well as everyone seems to think. I’ve researched the surgery. I have an incredible team of doctors working with me, who have explained everything in great detail if that’s what I’ve asked of them. I have an awesomely supportive husband and family. I have amazing friends who may worry just as much as me, if not more. My kids are blessedly young enough that they won’t remember this. Well, Butter may remember some of it, but I’m hoping it’s just that Mommy was in the hospital for a little while.

But all of that can’t take away the abject terror I feel when I think about having brain surgery. It used to be a joke in the restaurants I worked in. “We’ll get your food out to the table soon. It’s not like it’s brain surgery.” Maybe when I come out on the other side of this, I’ll feel comfortable making that joke again. Maybe I never will. I have a fear of the unknown. Until the surgery is done, there’s no way of knowing how my body will react. I don’t yet know which of the two possibilities for the surgery Dr. Zager is going to use. I don’t know how much of my hair I’m going to have to cut. I don’t know how long it’s going to be before I can hold my babies. Heck, I don’t know how long it’s going to be before I can see my babies after the surgery.

Most of you know me well enough to know I’m incredibly stubborn and don’t give up easily. Like I said in the post about the MRI & MRA, I only got through those tests by reminding myself I’ve got to do this for my boys. I’m not going to intentionally leave them without a mother because I’m stubborn and just don’t want to do this. Believe me, there are so many days I don’t want to do this anymore. I want to crawl into bed, pull the covers over my head, and give up. It’s not fair to my family. It’s not fair to my boys. But, it’s the way I feel.

I try to be strong. I try to be positive. I try to make the people around me feel better. On those days when I want to crawl into bed and give up, I push through the fear and despondency for the people around me. I may seem like I’m handling this well, but sometimes I crumbling on the inside.

I’m awful about asking for help because I don’t always know what I need. I’m very much the kind of person to say, “I’ll do it on my own.” I hold things in, and that’s probably where 90% of the white hair I’m already finding is coming from. Asking me to talk about this probably won’t do anyone a lot of good, but if you can spare thoughts and prayers, I’d really appreciate it. I may not always know what I need, but God does.

I have got to get through this. These boys are depending on me.

5 Replies to “Fear”

  1. I am sending you a (((Hug))). I will be praying for you. For me also the unknown it was scares me. I think that is the worst part of anything.

  2. hi hun,it’s me moyamoyagarden…we don’t know each other,other than knowing we share something very rare that most people cannot imagine. you have every right to be scared,you have every right to cry,you have every right to wish this were not happening. sadly it is,but you are not alone! also,moyamoya has a tendency to heighten all of these feelings…i feel you need to speak to one of your doctors and ask for a prescription for anxiety or antidepressant to help you relax,if already on something they may need to change it…what you do NOT need is to have a stroke from all this tension. i understand you not liking to ask for help as i am the same way. but life is different now,we both need to see asking for help as a strength now…not as a weakness. if you did lamaze during child birth you can use it now too,just the slow breathing in through the nose out through the mouth,even finding a focal point while doing this will help,also drink plenty of water to keep blood vessels open so blood flows more freely. when you need to cry use an ice pack over your eyes and sinuses to keep swelling down,plugging up your sinuses is not good for you and will cause more headaches as will even slight dehydration. i know this is hard hun, but you can do this!! you did the angio so were already inside your brain,they just need to take a different path this time and hair grows back!!!! i hope this helps hun!!!!! accept Gods comfort,even if it’s in the form of a pill !!!!

  3. You are often in my thoughts and prayers — lo, the power of teh Twitter 😉 Being ill is stressful, facing surgery is stressful. I don’t think anything you are feeling is at all inappropriate! It’s good that you are focused on doing what you need to do for your family. Your THREE boys need you. I hope you find something to help you relax (yoga, running, deep breathing, a glass of wine at the end of the day — whatever it takes). Keep the faith.

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge