Monday, August 2, 2021


I honestly wasn't sure how this year was going to go. In general, this year has kind of been a year of disappointments for me in terms of medical news. Since having Lucy, and going to hundreds of follow up appointments, five years has always been this weird finish line. Every doctor would say, "it's not great now, but by the five year mark it'll be greatly improved", "around five years is when you will see your peak improvement, it'll take that long to really repair those neuro-pathways", etc. 

Now I'm at the five year mark, and I'll be honest, I was hoping for more. I'm realistic enough to know I certainly won't ever get to the pre-AFE level I was at. I know that, and I feel through therapy I have really come to grips with that. What I haven't really addressed was this weird five year finish line and what I would do once I got here. I guess I really thought it would be this weight off my chest kind of feeling, like, I've made it! I made it, and look how great I'm doing. 

Except... it's not really happening that way. So, let's talk about where I'm at, five years from the worst day of my life: 

Good News

  • I recognize all of my family. I recognize most of my friends (at least the ones I interact pretty regularly). 
  • I am able to cook simple/easy meals at least half of the time. On a good day. 
  • Some days I can walk up to a mile, sometimes two miles. 
  • I am much better about using lists and reminders to take my medications, pick up the kids, etc. I have found some daily routines that help me at least be independent at home. 
  • I don't cry every day/all day. I only really break down maybe once a week, usually in the shower when I'm alone. 
  • Seeing pregnant women or very tiny babies used to be a PTSD trigger for me, and while they still are, I'd say 75% of the time I can keep it together for enough time to get through a store or interact with someone. 
Bad News
  • If I see someone who I don't regularly interact with (face to face) and you say hello to me in a store? I will not know who you are. Please don't take it personal. In other scenarios, I'll know that I know you somehow, but I won't be able to remember your name or how I know you. 
  • While I can sometimes cook a meal on a good day, the good days are far and few between. I might have one good day a week. 
  • When I walk a mile or two, or any kind of exercise, that is usually all I can do for the rest of the day. The next day, or two, I am usually really sore and abnormally tired. It feels like I've been awake for over 24 hours kind of tired. 
  • Is it weird to say I actually miss cleaning? I can wash dishes and vacuum the dining room rug, but really anything beyond that makes me so tired I need a nap. I can fold laundry, though! I used to hate folding laundry, but honestly I like it now because it makes me feel like I'm doing something. Cleaning used to be an anxiety release for me and not having that has been difficult. 
  • I still get lost. I can't go on walks by myself, and I don't know if I'll be driving beyond 50, if I'm being honest. I get lost trying to come home, I keep going to the wrong house or forgetting where I need to be all together. I have places that are just muscle memory, but if I have to go somewhere new? I need a ride. 
  • Oh, but I get SO CARSICK now. It makes me so dizzy to ride as a passenger and then I'm just straight nauseous the rest of the day. 
  • So many of the issues I was diagnosed with are still here and have either gotten worse or things were added to the list. My amount of medications to function has increased and even still- there are several issues I deal with that nobody has any idea what to do with. 
  • My memory is still really terrible and just a few months ago I saw a new neurologist who very nicely let Matt and I know that my brain injury looks healed from an MRI stand point, but he does not believe my cognitive function, flexibility, memory, etc. will improve much (if anything). He does believe I'm at my peak and encourages Matt to keep an eye on any decline. That appointment was a real blow to me because I went in really hopeful and left feeling pretty discouraged. 

So, it feels pretty balanced, I guess. I just.... I just really hoped some of the issues I left the hospital with would be in my rear view mirror by now. 

A picture of me from August 2, 2016. Matt doesn't remember if this was before or after my second surgery, which is when they were able to fully stop the hemorrhaging from my uterus. 
I knew the day before Lucy's birthday (July 31) would be hard, it always is, so my plan is to keep myself busy. I wanted to go to the Rose Garden, which is what I did that year and it's my last memory of anything. It's my only memory of Lucy's pregnancy, and from there it's just really spotty flashbacks, kind of. So this year, Lucy wanted a rainbow cake, and I spent the entire day making a six layer rainbow cake. I will probably never do that again. 
On her actual birthday we had family come over for dinner, cake, and presents, but after lunch we headed to the Rose Garden, and then off to sit on the rocks and look for some sea glass. 
We had all four kids with us and it was a really nice time to just sit. I could feel my feelings, and I let some tears fall, and I watched the water. I've read, and heard many people say, that Lake Superior has healing properties. I don't know if that's really true, but I've learned to be open to anything, so I dipped my feet into the freezing cold water. I did some breathing exercises, cried a little more, and made some wishes. 
On the way back we stopped to watch a train pass under us, waved to the tourists aboard, and came home to party. It was a pretty good day for Lucy, she seemed like she really enjoyed her birthday, and that's all that matters to me. Her and Penelope (and Jackson) are off to their grandparents' house this week and they look forward to that every summer. I'll have a relatively quiet week since Matt and Olivia are working. I specifically didn't schedule appointments this week because if I've learned anything in the last few years, it's that this is historically a really terrible week for me. I'm going to give myself permission to cry when I need to. The only thing I can compare to the general feeling of this week is being chased by something scary. Like, if you're out for a walk and absolutely SURE someone is following you and something bad is going to happen? That's how I feel all week. I'm jumpy and anxious even though I know nothing is going to get me. It's just crazy. I feel crazy. I'm not crazy, but I feel it for sure. 

So yeah. Five. My baby is five and I remember none of it. How do you grieve that? 


Shooting Stars Mag said...

Sending you all the love!
I hate that things haven't gotten better for you in the past 5 years, at least not on a scale that you had hoped for.
I wish I could say or do more, but I know that nothing will really help.
Feel your feelings, and I hope that you get through this week okay.
* hugs *

and happy belated birthday to Lucy! I'm glad she had a good day.


Why Girls Are Weird said...

This popped up in my FB throwbacks and I couldn't believe 5 years has gone by. I remember finding out about what had happened and I was at work (I'd been there less than 6 months) and I just started crying.

I am so thankful you are still with us. But I am so sad at how this has changed your life. I am so thankful you have Lucy to remind you to celebrate the good things.

I don't know Sarah. I wish you so much happiness and I really hope you can find joy in the little things. Life is such a scary thing and you've certainly had your share of scary. I'm just thankful you're still here.