Summer 2022... kind of.

I have gotten really bad at being a blogger and have not been great at updating literally anyone. Ever. 

Sigh. 

I'll get better. Someday. At least I'm pretty sure. Until then, let's talk about what has been happening around here lately. I feel like it's so much that it is hard to keep up but I'm really trying. 

1. Kindergarten Graduation

Lucy officially graduated kindergarten and she was so excited. She had a pretty good school year and could not love school more. She's starting to read books, mastered her sight words, is a whiz at addition and substraction, enjoys art, has adorable handwriting (though she writes her 'y' backwards and it's the cutest), cannot rhyme anything to save her life, and make great strides in speech therapy. 

This was also the year that she started physical therapy and has been doing such a great job. She has some progress to make, but she LOVES going to 'exercise class'! She will continue with speech therapy next year and already misses her kindergarten teacher, her speech teacher, and her friends. 

2. School is out.... for summer

I don't post about the bigger kids much because 1. they hate it and 2. they are literally busy all the time and I don't always get pictures. I need to really try harder because I'm finding my memory is starting to slide a little more. 

But.. Olivia finished 10th grade with amazing grades. She did so great in AP World History, she loved biology, but her journalism class was by far her favorite. She learned a lot from her teacher who I hope becomes a mentor for her because that was a great last minute change to her schedule back in the fall. She's working two jobs this summer, flying through books at breakneck speed, and getting her license as soon as we have time to do it. She even managed to go to Washington D.C., New York City, and Boston for school. Jackson finished eighth grade and is literally chucking deuces at the hell hole that is middle school and is heading to the high school next year. He learned to crochet, play Dungeons & Dragons, and is literally the funniest kid of our bunch. He has my sarcastic personality and I always have a good time hanging out with him. Him and I are doing the DC/NYC trip next spring break (same one I did with Liv), so we at least have that to look forward to. Penelope finished first grade like a boss and is an amazing reader and is excellent at math. She's hoping for "harder math" in second grade. She gets that from her dad because math is the absolute worst. And we already talked about Lucy. 

3. We all scream for ice cream

You know summer has officially started when the ice cream truck starts it's weekly visit. We planned last week entirely around it coming and it was worth it. 

4. Plans?

Normally I have some kind of plan for our summer, but this year I'm stumped. I really WANT to go on a roadtrip but honestly, we need to work on paying down debt and putting money away. I'm really struggling with the "be a responsible adult" versus the "we only get 18 summers, they grow so fast, life is short so take the trip" argument. In my head, of course. I haven't settled it and I really need to make a decision soon so we can appropriately plan and people can take time off. 

If we don't do a roadtrip (which really would be a bummer), I guess we can do some short day trips on the weekends or something. I don't know. I just hate being the only one really delegated to any of this because of our group, I'm literally the last person who should be in charge of anything. I can't make decisions, I can't organize thoughts, and god knows I can't remember anything. The thing about cognitive impairment is that learning to live with your newly acquired shortcomings is really hard and incredibly frustrating. It's like running into a table as you walk by, multiple times and knowing full well that if you just move over a little you would be fine, but you continue to run into the table and it makes no sense. 

So that's my life. 

Hopefully yours is going better, or you at least have any kind of idea of what's happening next. That would be nice. 

Five.

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? 

We're ready. Kind of. #teamhybrid

To say I am nervous for this school year is an understatement. I'm upbeat and positive for my kids but on the inside I'm kind of freaking out. I'm not worried for them, I think they are going to be totally fine. They adjust well to different things, even the little girls, so I am not worried about that. 

I'm more worried about me forgetting to pick them up, dropping them off at the wrong places at the wrong times. I'm worried about myself getting sick. I'm worried about the days they are home and I have to help with things on their virtual days. I am thrilled that I know Penelope and Lucy's teachers, and I'm thrilled Olivia has a bunch of people to ask for help. Jackson is at the same school so its basically the same as last year, just less kids. 

Honestly I was thinking about it and I think this might cut down on bullying and fights at school, maybe? I don't know. My kids haven't had experiences with that so much but I hear about it from various schools. 

So Lucy had her meet and greet and was totally ready and excited for it. She has the same teacher Penelope had last year and Penelope has hyped up 4K pretty well so Lucy is all about it. She went in, sat down, made friends with the assistant teacher, and it was quick and easy. 

I'll get first day photos too but I took some during meet and greet in case I forget because you know, I might actually forget. 

Oh, and since Penelope got her hair cut, Lucy DESPERATELY wanted hers cut. We only got a little cut off and I'm so glad Matt was the one to take her because I would have cried. I don't know why her hair is such an emotional thing for me, but no joke, I'm sad her first curls are gone. It could also just be me this week, I'm kind of a sad sack and really struggling to get through it. 

Penelope had her meet and greet too, and she was a little more nervous about it because it is a new teacher and new room. She's excited to be a KINDERGARTNER (can anyone here believe this?!), it really feels like she was just my little toddler getting into everything last week. 

Sigh. 

So she's a little more nervous about it, but I think she is going to be fine. The teachers at their school are amazing so she's in good hands. Last year she had such a hard time making friends and she would just stand there and cry on the playground and it broke my heart to see it. We don't see her shy side at home, it's quite the opposite, so I don't know how to help that. Especially because of Covid, it's not like we can do play dates or go to random parks to play. We've mostly avoided that since March. 

Olivia also had her high school laptop pickup and it went OK. She is terrified of getting lost because it's a huge building. She got her schedule though and I told her I'll get her there with plenty of time to find where she needs to go. Jackson has yet to get his schedule so that's fun. 

I'm hoping for a good year. I'm realistic enough to know we likely won't be in the building all year but I remain hopeful. I'm basically crossing my fingers. 

The reflection of four.

Lucy turns four on Saturday and what I am not going to do is talk about my AFE on her birthday and what that has been like for me. So on Saturday come back here and I'll have a special post about Lucy and how great she is, plus we can all admire how beautifully adorable she is. 

Because that's just a fact. 

Today though, I'm going to talk about what this means for me. (If you're new around here or have no idea what I'm talking about when I say AFE, you can go HERE to catch up.) On Facebook earlier this week I shared this and it made me pause. 

I have spent a good chunk of the last four years trying to get people to understand that right now the concept of be grateful has nothing to do with trying to heal from trauma. Being grateful doesn't make my trauma go away. It doesn't make the depression go away, the PTSD, the panic attacks, the anxiety, the fear, the feeling of not wanting to be here, none of that goes away whether I am grateful or not. 

Even after four years I am still sad. I still feel terror when I see a pregnant woman. A small baby sometimes makes me cry. I still feel angry. 

I am angry it happened at all. 

I am angry my life isn't the way I worked for. It isn't what I wanted at all. I don't even feel like this is my life anymore. 

I am angry that I missed out on Lucy's every first because I don't remember any of it. What kind of God lets a person survive this and then robs you of memories? To make me feel like a constant disappointment to my children when I can't remember important things or share in their memories? To make me always wonder if I'm as good of a wife as I was? 

I cry all of the time. I cry because I'm sad. I cry because some days I don't know what I'm doing. I cry because some days I don't want to be here anymore. I cry because I feel guilty. I cry because I feel like a prisoner in someone else's life. I cry because I'm crying and because I'm angry. 

I cry because I'm not grateful. 

I am angry and I cry because I'm not better. I'm angry there is no such thing as "better". I am so sad that I never feel well. I always hurt. I am always so tired I can barely function. I am angry my memory is awful. I'm really angry that I am so short tempered and angry and that my family sees it. I'm feel so deflated because I keep trying and trying and still, I'm running in place. Its like I'm running uphill but I never reach the top. I hate complaining about my life because I KNOW people are out there who have it worse, but my therapist absolutely hates when I say that because its downplaying my reality. I will say that I would take all of the pain and ailments if it meant Lucy could stay healthy. Anytime she gets sick or worse I feel guilty. Its an endless wheel of thoughts of what I messed up when I was pregnant, how did I fail her? 

I am angry people still push their stupid essential oils on me like that's going to fix me. I'm angry people tell me if I just did a specific thing I would be cured. I'm angry people suggest memory games for me and assume I haven't tried them. Or maybe they think I just didn't try hard enough. Yeah, its probably that. Maybe I should just try harder and suddenly my brain and body will snap together and be normal. 

I am angry people talk about me like I'm not trying hard enough. I am angry these people can't see me on the bathroom floor in the middle of the night crying. That they can't see me in my therapy sessions trying so hard. I am angry they can't be in my body just to feel what its like to feel like you have the worst flu of your life every day. I'm angry that they can't see me in the shower sobbing almost every day because I am so emotionally exhausted from just going through a day. 

The only thing I know for certain, the only thing I know for sure with every bone in my body, is that Matt is my person. I know I'm lucky that he has stuck around, that he still loves me. I'm not always a pleasant person and I know that. It has to be hard for him to know I need so much help and some days, some days I just can't do it at all. I also know my kids are pretty damn great. I couldn't have a better set of kids even if I handpicked them. I constantly feel like I'm failing them but how do you explain to them that my best is really crappy and I'm sorry? 

I'm really struggling this week, as I always do this time of year, and I'm trying so hard to fake it. 

I wish I had the same connection with my family as I do with Lucy. It's not that she is my favorite or anything like that, she is the only person who knows what it was like. Some days I am grateful babies can't remember their birth and then other days I wish she did so I wouldn't feel crazy alone. Isn't that messed up? It feels messed up. I know there are other survivors and I've friended many and I listen to every one of their stories, some are similar to mine in ways but we are all different. Some days it helps but other days it makes me feel more alone. I'm surrounded by so many and I have never felt more alone. 

But I'm here. I'm acknowledging that I am here, I have worked so hard to stay here, and being here is an accomplishment. I might still be running uphill in a storm but nobody can say I'm not hanging onto every rock and branch so I don't fall. Because I might be a lot of things, but I don't want to be a failure too. I also know that nobody has the right to make me feel worse, to make me feel more guilty. So I guess I'm learning things, too. 

So here we are, four. I don't know if things will get better. I'm no longer in that "give it time, it'll get better" optimistic phase, I've moved firmly into the "its shit and that's OK" phase. I'm not even sorry about it. I'll just keep swimming, surely I'll wash up somewhere. 

Lucy turned 3 and we all got through it.

I have SO many posts for you coming up and you're going to just be so overwhelmed which is only right because I am super overwhelmed with life right now so here we are. We are fresh from our trip to Missouri (more on that another day) and right before we left we celebrated Lucy turning three. My rationale was that if I did her party and then we immediately left I wouldn't have time to dwell and be in my feelings. 

And that worked for a few days and then it's all kind of waited for me so I'm still not sure if that was the best tactic after all, but I guess we'll see. I'll give it time. 

Anyways. 

On her actual birthday we just did a small party among our little family of six. 

We played in the yard for most of the day, and she had a really good time.  

 Birthday tradition says the birthday person picks our dinner and no surprise, she picked spaghetti. So that's what we had and she couldn't have been happier. 

 We only do cupcakes on that night because it's cheaper than a cake and we usually have a cake during our all family party. 

 But she didn't mind. 

 She gets a present. I usually only give them one gift on their actual birthday and maybe two or three on their party day. 

On party day we were really lucky because my brother and his wife and two kids were able to come up (they live five + hours away). 

 I found these spray bottles at Michaels with liquid chalk on clearance and the kids decorated my patio area. 

 Thankfully it was washable because they got it on themselves. 

 We had a BBQ lunch and the kids ate their weight in blueberries. 

 Anytime you ask Lucy to smile, this is still the face you get. I'm kind of hoping she grows out of this soon. 

 She really loved her cake. She's a huge fan of Toy Story and though we haven't gotten to see the newest movie, the bonus is that all of the stores have toys and stuff for it, so she got a Toy Story cake. 

 We opened presents. Her cousin Adriana helped her out. 

 My mother in law got her a Baby Shark that plays the song and Lucy absolutely LOVES IT. 

 Penelope is especially enamored with her cousin Mason. He's super cute and she's always hugging him. 

 Lucy's "big" gift were a few more Calico Critters so her and Adriana played with those for a long time. 

Before they left I got a quick picture with my niece because she's just the cutest thing ever and I love her so much. Every time she comes up here I always try to have crafty things to do with the kids and this time it was calm down jars and slime. Both were a hit and I'm still finding glitter everywhere. I hope she has good memories of her Auntie Sara when she gets older. 

Overall? The party was fun. It was an OK couple of days and I didn't have a lot of time to dwell and be sad and angry. I'm feeling all of that now but I have therapy on the 19th so I can make it another week. This means I'll have had a three week stretch with no therapy and it's been ROUGH. I'm trudging through though. 

Tomorrow I'll talk about our Missouri trip and share some photos. Hang tight. 

The cusp of 3.

I often wonder if I am always going to feel the way I do now about Lucy's birth. My therapist says it might change over time but it might not, because your body will always remember what happened to it, like a reflex. I might not remember, but my body does so there is a natural fear response happening. Which is such a weird thing to think about but I suppose it's true.

It's hard to tell you exactly how I feel on this day. The day before Lucy was born is my last real memory and that's not even really true because I don't have memories like you, I can't replay a scene like an old movie in my head. What I remember are the actual snapshots that we took of the day.

I remember Penelope standing next to roses at the Rose Garden in Duluth. I don't remember Olivia or Jackson. I don't remember Matt, but I remember taking this photo. It's so weird, but mostly scary, to look at this photo and know that that person died the very next day. It doesn't look like me. Well it does, but I don't recognize it as me. To me it's like looking at an ex-wife of Matt, which is weird because I know it's me..... but its not. 

It's strange to know this woman is dead. She died the very next day and somehow I'm here in that body and nothing about it feels familiar. I cannot tell you how many times I have stood in that exact same spot to see if a memory would come, would I remember standing there? Would I remember what it was like to be pregnant? Would I remember what it felt like to have a baby inside of me? 

To say this has been a hard three years is an understatement. I can't remember all of the doctor visits, the medical buildings, the procedures, the lab work, the waiting rooms, the hope, the disappointment, the frustration, the desperation, the resignation that I've had in these three years. I know its there and I guess its best if I don't remember it all. 

Not one person in the whole world can tell me that I haven't tried to get better. That I haven't marched forward, kept swimming, climbed the mountain, done the work. I have taken bad news like a champ and not told anyone. I have accepted the looks from people who think I'm crazy, I've been told to "just deal with it" and kept my mouth shut even though I want to scream, "I FUCKING AM" but I don't. I've become a better person because I really believe if I do good I will get good back and I just so desperately need that some days. 

I have confronted really awful truths from my past that I haven't told anyone, ever. Matt doesn't know. My mother doesn't know. My best friends don't know. I can see things around me a little more clearly now which is bittersweet because I realize how awful some people are and I never saw it before. I have lost friends. I at least know which ones are fair weather friends too but that comes with its own wave of disappointment. I have battled crippling depression, I have sat in darkened closets and in my car in the dead of winter wishing I could just die and thinking that being alive is really the cruelest punishment of all. 

I have confronted the things that hurt me the most. Did you know that I never look at my scar? I think sometimes maybe I don't lose weight because if I did the scar would be more prevalent on me. It's just a scar, millions of people have them and ones just like mine, it shouldn't bother me, but it does. It brings feelings of anxiety and panic. I get a tingling in my chest and I can't catch my breath. I feel fear, like something is trying to get me and I need to run.

So I don't look at it. I don't look at myself in the mirror anymore because I don't know this person or this body. I want to be old Sara so badly and I know I can't and so I feel shame. I feel shame because I'm not pretty and I'm not skinny, and no matter how many times Matt assures me I'm still attractive I don't believe him because he has to say that. 

I hate feeling broken. I hate feeling like everything in my body is malfunctioning and there isn't a fix. Sometimes I lash out. Sometimes I scream in a pillow until my voice is raw. Sometimes I go on walks and cry so hard neighbors look at me, probably wondering if I'm OK or crazy. Sometimes I sit and my car and cry. Sometimes I cry in the shower. Sometimes I cry when the girls nap.  I have to deal with everyone else and their problems and I'm dying a little more inside. I know it's daunting when I tell people it's going to be like this forever, like "Ugh, we have to help her FOREVER?!" and believe me, what you feel? I am more angry than you are. Trust me.

And then I have Lucy.  Lucy is really the best thing in the whole world. I wish I remembered what it was like to be pregnant with her. I wish I could have seen her born or remember what it was like the first moments with her. I wish I remembered what she was like as a baby. What she smelled like. I wish I could remember what her fuzzy hair felt like. How little she was. I wish I could remember her looking at me like I was the greatest thing in the world. Or what it felt like to rock her to sleep, or hold her on my chest. The irony is that I don't do well around pregnant women or little babies because they scare me and are a PTSD trigger... which I never knew was a thing until I'm in the thick of it.

It's weird to think I took this picture on Sunday, but I don't remember. I can piece things together. I know we were at Thomas the Train, I know we were on a train, I know it was summer. Anything else? I have to ask Matt because it's not there. I know I think I'll remember, I always do, and then I don't and I'm angry that I'm so stupid and thought that in the first place. But I forget how quickly I forget.

So tomorrow Lucy is 3. Tonight I'll go to bed absolutely petrified of what will happen. I'll be scared, panicky, and sad all day. I will try not to show it because I don't want to ruin her birthday. I will cry when I go to bed. I will pull it together because on Friday she has a doctor appointment and I need to pull it together. On Saturday we have her party and I will try to not cry and not ruin it. I will try to smile and be happy. Because ultimately, nobody cares. And it's OK. It's not your burden. It's not your PTSD or depression. It's not your trauma. It's not your stolen memories. You aren't broken. You don't understand where I'm at. You don't know that all the therapy in the world can't fix this and suddenly make me normal. And it's OK.

I'll keep trying anyway. I will fake it until I make it. I will get through today. And the next. And even the next after that. I can only do what I can do.

Exercise and Ears

Weight loss... it really sucks and every time you think you've hit rock bottom it's like the ground says "just kidding!" and drops from under you.

That was kind of my last two weeks.

I continue my walking and I'm really battling fatigue. Fatigue and rain. I've discovered if I walk when it's chilly (like 45 degrees or below), I lose feeling in my hands and feet for awhile, so I've stopped doing that because I don't like that feeling. That basically means I haven't gone out and walked as often as I planned because we have yet to have summer in northern Wisconsin. It's raining and cold today, too and I'm basically over it. I hate living here.

I did get some information about a Weight Loss Exercise Class led by the physical therapists I saw last year at the hospital system I'm in. I recently had a doctor tell me I may be a candidate for a weight loss surgery and I just don't think I can do it. It would be great but the diet to follow before and after? I can't, you guys. I would be starving myself. I want to eat what I want. I know my portions and what I eat isn't my issue right now, it's my lack of movement, so I think I'm going to join this class and see what happens. It meets twice a week, it's $5 a class and it's an hour each time. I feel like if I have someone showing me what to do I will be much more successful. PLUS! It's an hour out of the house so I'm always up for that.

Next up is Lucy. I think I blogged a few months ago that we took her to an ENT doctor and he said she might have some hearing loss but she definitely had fluid in her one ear but we'd come back in a few months and check it.

Well it's been a few months and we came back to check it.

It turns out that she still has fluid in both ears (like WAY down there) and she has a 30% loss of hearing in both ears, which puts her in the mild hearing loss category. Mostly this means a lot of her speech issues is an apraxia and hearing loss combo and that explains a lot of her deficits. Most letter sounds and combinations, she can't hear. If you go outside and hear a waterfall or tree leaves rustling? She can't hear that. When I whisper to her? She can't hear that. When we talk quietly during bedtime story? She likely can't hear it.

It explains SO MUCH.

It also really sucks and is heartbreaking.

The plan right now is for her to have surgery in mid-July and have her ears completely drained, tubes put in, and her adenoids removed. Right now it's pretty clear she doesn't breathe like you and I do, and that might be why she's not able to keep her tongue in her mouth when she speaks. The tongue muscle isn't doing it's job so while we're doing exercises for that, we need her to breathe normally for it to really work. So that's why adenoids are coming out.

We'll be holding our breath because after her surgery we'll know (hopefully pretty quickly) what kind of hearing loss she has. It's either due to the fluid/lack of air flow in her ears, it could be because the parts of her ears aren't functioning properly, a mix of those two, OR it could be a brain thing. Meaning she can hear it, but her brain doesn't know what to do with the sound, if that makes sense. It's kind of a toss up. But I feel like she fully understands what we're saying, and I feel like she knows what she wants to say but it's abundantly clear she doesn't know how. The thought is there but she doesn't have the ability to form the words.

I'm just bummed at the timing of this. She'll have her surgery mid-July and our current speech pathologist is only with us until July 31, then she becomes part of the school district's speech team. Which is great, I'm sure they are great, but Lucy has formed an attachment to our current guy and I feel like he has a good handle on where Lucy's deficits are and where to go. We'll be really bummed to not be in his hands anymore.

So that's the scoop. I'm really nervous about it. I know the surgery is like 10 minutes and not an issue at all. My issue is a fear of anesthesia and it's all me. In my head I know it's routine and fine but I also know that my procedure was routine and went very wrong quickly and it's not anything near the same time but trying to not let her see my fear is tricky. So I'm certain I'm going to cry the entire time. No question. HA! But let's hope her hearing loss is something we can correct and it won't slow her down.

Speech therapy, it's happening.

A few weeks ago I talked about Lucy being evaluated by a early child development team to figure out if she has a speech delay, and if it was at the level of needing intervention services.

It turns out that she does have a speech delay and it does need some intervention services. I knew it was coming and I don't care who you are, you are never ready to hear that your child isn't developing at the same rate as other kids their age. Rationally, I know I haven't slacked in parenting or failed her in any way.

I KNOW THIS.

My brain runs away anyways and I think of all the ways I could have done better. I should have encouraged her to talk sooner. I should have gotten her help sooner. It's ridiculous and I'm trying really hard at not focusing on that, instead focusing on what I can do for her now.

So here we are.

The people who came to evaluate her were incredibly kind and they totally loved her. Fortunately, I had told Lucy that these were teachers and we were going to do some school stuff before they came so she was all about it. Anything dealing with school, she's completely on board. They had her do some puzzles, color matching, some other things to see if it was a cognitive or motor skill delay. Her fine motor skills are pretty dang good. Her gross motor skills.... not awful but not at a 32 month old normally. 

They had her go through this workbook and identify what the picture was. She actually did that longer than a child usually does, so that was good.

Overall the assessment went really well. They concluded that she has a speech delay, bottom line. She can say singular words fairly well but when she strings them together in a sentence she is hard to understand. Her articulation isn't very good and she has poor speech imitation. The recommendation is she would work with the speech therapist two times a week for 45 minutes. She only gets these services until she's 3, so that ends July 31 for her. After that, her therapy is turned into the hands of the school district if they feel she needs it.

We met with them last week and based on that assessment alone, the school district is going to get the ball rolling on enrolling her into that. It's a bit of a process and apparently we are sneaking in at the very last minute, so that mad me a little angry at myself and I should have done this sooner.

On Friday she had her first therapy session and that was another quick assessment and then a play session. She actually did really well and participated through the whole thing. Our guy is very nice and he has a great way with kids. He was letting us know that over the next few months we'll be able to tell if this is just a speech delay that she just needs help forming words OR if this is more of a neurological issue. He believes SHE thinks she's saying the words clear as day but she just isn't. We've always thought she could say the word, it's just "stuck", and he agrees. She's eager to learn and she likes the one on one attention, so I am hopefully this will be really good for her. She really is the sweetest kid ever and everyone really enjoys her. I'm excited for her and I'm excited to watch her blossom through this process.

Ears and Fatigue.

I feel like this week was more loaded down with doctor appointments but I guess not. I have an eye appointment yet this week but whoopty do.

We did take Lucy to her ENT appointment on Monday, though. Remember when I posted about how she's always sick and nobody knew what to do? Well as it turns out this guy doesn't either.

I had to wake Lucy up from a nap to take her so I wasn't sure what kind of mood she'd have because this girl LOVES to sleep. It turns out she was pretty great and doesn't mind the doctor at all, which is really nice.

So the first thing we did is her hearing test. That was actually pretty cool because I've always wondered how can they tell if a baby is deaf? Turns out they have this ear thermometer looking thing and with that they can tell. It takes literally 10 seconds. Lucy can hear but her left ear is greatly diminished and she has a lot of fluid in there. She has a little fluid in the right ear, not enough to get excited about. The game plan with that is to come back in two months and see if it gets better on its own. If it doesn't, she will need to have tubes put in and she'll likely have her adenoid removed because of her nonstop cold. I am VERY glad I went because Matt sucks at talking about symptoms and I'm basically a professional now. I also had pictures of her eye and how awful she gets and the doctor seemed taken aback by them and that's how the tubes and adenoid stuff came up.

But because we're coming back in two months we decided to cancel her ophthalmology appointment that was on Thursday because the last one is $400 out of pocket (insurance paid a whopping $2.10... yay!) and we know now that it isn't an issue with her actual eye, it's more of an ENT thing. So no point in going back to eye guy for him to say great, NEXT.

We did learn that little kids don't actually have a sinus yet, they aren't formed enough to get infected, so she definitely didn't have a sinus infection. Which I guess is pretty good. She did do her ten days of amoxicillin and seems to have helped because her eye isn't squinty and she doesn't have a cold (knock on wood). So I guess we'll see if that actually got rid of it or if we're just in a good patch and it comes back in two to three weeks like it's been. I'm not sure but I'm hopeful because she's just pitiful when she's not feeling well.

As for me I had my much awaited visit to psychiatry. He is really great and he's probably the only doctor in my lineup that I feel like sees the entire picture and knows what to do. He looks at things I'm experiencing and looks for connections and figures out how to improve what I'm dealing with without making something else worse.

I really appreciate that.

I think I've talked about being put on Ritalin to help with the chronic fatigue. I really am hesitant to be on stimulants but I also need to be awake at some point in the day and I'm out of options, basically. The decision today was because I didn't feel worse with my small dose of Ritalin, we're going to max me out but I can dictate how much I need in a day. So I can start at 10-20 mg and if that's not doing it or if I need another dose, I can take another 20 mg. I can only take 60 mg a day. I have to figure out at what time of day I can't have any more because I need to be able to fall asleep at night at a reasonable time.

We are leaving my anti-depressant and mood stabilizer the way they are because I'm not getting worse. I'm at the point where I know I'm not going to feel happy, joyful, etc so that's kind of unreasonable to expect out of a medication. The goal for me is to keep me even. I'm not happy, I'm not sad/mad. I still have a lot of days where I feel sad and I'm tired of getting up and going through another day. I have moments where for a split second I feel proud or I feel... like I can take a breath? Does that make sense? It never lasts long but it's something. I am getting better and better at faking it so I'm smiling, laughing, having a good time and people think I'm really feeling that.

I am not.

I've learned though that nobody wants to hang out with a person who visibly hates life. Have you seen the movie Inside Out? I'm Sadness. Basically that's my every day.

via GIPHY

I did forget to ask about my anxiety. I'm noticing my anxiety is actually getting worse and I forgot my notebook with my notes and questions in it (actually, I forgot where I put it so there's that) so I didn't even think of it. Until I was leaving and I realized the way I drive home is going to be closed for construction starting next week so I was going to try to find a different way to go.

But then I got really nervous and anxious about it so I chickened out and went the way I know that I know how to go. It seems dumb, doesn't it? But things as minor as driving a new route is stressful for me because I have a fear of getting lost. What if I get lost and I don't know how to get back home? I don't like to drive on unfamiliar streets because now it's requiring my brain to really pay attention and try to figure something out but that part of my brain no longer works like it did, so that's a really huge task, and I get anxious and upset.

Actually, I'm noticing more and more often that I can't focus. I've had focus and processing speed issues since my stroke but for awhile there I felt like while it wasn't getting better, I was learning how to function with it. Lately though, I'm dozing off and spacing out. I will start telling someone something and I trail off because I can't remember what I was going to say or what the point was so I can't keep going. It's really difficult and I'm really struggling with it.

Alright, so that's the scoop. Hopefully Lucy is on the mend and is getting healthier. I'm crossing my fingers.