The World Stopped

Today I got a phone call that changed my world. I thought I was safe. Honestly I did. I never thought I'd hear the words you have a new lesion, let alone five new lesions. I always thought I'd be stable.

I thought my MS specialist was crazy wanting to see new damage on my MRI. My friends and the doctor would say you might never have new damage, you may stay like this forever. I think I started to believe that. I never thought the day would come when I would actually hear that I have new lesions.

Last year I broke down when I learned about the low-lying cerebellar tonsils which correlate with Chiari. I lost it with that news. I couldn't handle the thought of being saddled with two incurable illnesses.

But I really lost it hearing that there have been changes. I remember the doctor going on, talking, explaining things to me. I remember trying to hold it together as I asked, but there have been changes? I was so confused and at first I didn't think I had heard her right. Yes, you have 5 new lesions she told me. I remember her reading the report to me. What stood out was 4 new lesions on the left and 1 new lesion on the right, that is active. I held it in but later I lost it. The tears flowed, I balled. 

I sat in that office so many times. Mri after mri. I've read report after report and I've listened to my doctors read report after report to me. It's always said stable white matter lesions. No evidence of active demyelination. No new white matter lesion. As frustrating as that was to hear, it was the one constant in my life among the ever-changing symptoms I experienced. This time hearing there are 3-4 new lesions noted within the left parietal subcortical white matter. There is a new lesion noted within the right posterior frontal subcortical white matter and posterior parietal subcortical white matter.

I'm trying to find some sort of positive in all of this. Trying to reflect on what is going right especially when it seems like everything is going wrong.

And then I think about all I've overcome in life so far to this point. I'm driving. I think a lot of people doubted that would ever happen. I'm teaching math in a high school resource setting. I'm modeling or at least starting to. I have an "adopted" family who I love and loves me back. It's one of the best feelings in the world. I'm genuinely happy. For a long time, I always thought the core of my happiness lied in getting a diagnosis. Thankfully, I worked out through that. 

But this still has rocked me to the core. I'm not letting it completely destory my life but I am upset. I'm frustrated. I'm scared. I need to get through this I'm just not sure how.

My Firsts, My Adventures, My Future

Do I let go and move on? I've been trying but I'm not sure I really want to let go. Deep down I think I know I should. I fear that I might fall in love with someone else and then you'll be single. Our chance once again will be lost. Maybe then is it really meant to be? I'm not saying that I'm in love with you but I like you and care about you.

Maybe it's a comfort thing but I'm not sure. What I am sure of is that I've never felt this way about anyone else. I've never connected like this with anyone else. But I also know my chance may have been lost.

I can't guarentee that a relationship would work out between us. But I'd try, I'd give you what you deserve and from where I stand you deserve the world. I may not be able to give you the whole world but I'd try. I know I wasn't ready before. I wasn't ready to open myself up to you but I am now. It didn't make sense how someone could want to be with me but you didn't know my past. From what I see now you just wanted to be a part of my future. Things make more sense now.

Right now, if I had the choice I want my firsts to be with you. I want to my adventures to be with you. I want my future to be with you. Could I be happy with someone else? Probably. But right now you're who I think of, you're who I want to be happy with.

But sometimes we don't always get what we want. So if my firsts, my adventures, my future, and my happiness can't be with you; I'll understand. Eventually I'll be able to let myself move on, I'll try not to hold myself back from finding love.

The Little Moments

I woke up at your house the other morning overcome with emotion and my eyes filled with tears. They were filled with tears thinking about the night before. The brownies got stuck in the muffin pan and the pan could have been ruined, we weren't really sure. If that had happened at my parents house, I would have gotten yelled and been told about what a mess up I am. But you shrugged it off like it was nothing because it was nothing, it's just a pan. 

Sometimes things don't feel real. Almost like the relationship I have with you guys is a dream. I walked out to the living room, needing a hug and you gave me a big tight squeezy one. I felt safe and loved. You asked me what was wrong, if I had had a bad dream. I explained to you what was going on in my head. 

You never had to prove yourself to me, I just knew you cared. You said it and I could tell that you meant it. But you've proved it tenfold. You've shown me that someone doesn't have to be blood to love me despite everything I have going on. You've been there for me through my nerves at doctors appointments, administered iv's even when you were scared you were going to kill me with air bubbles, and recently given me medication via a shot. You didn't even think twice about doing it.

My parents were never there for me and I used to think that they were the ones that were supposed to be. I always questioned if they couldn't, who would willing want to be there for me? But you changed that perspective. I'm so lucky to have you guys in my life. It's the little actions that you take, the things you do.

Stabbing me with a needle to give me my medication. The heart to heart talks about the serious and the silly. Dancing in the kitchen. Your “what the heck” facial expressions you give me when I don’t make sense or when you seemed shocked about something that I don’t know. The talks you both give me about not settling for someone because I deserve more. The fact that I can talk to you or ask you about anything. The long silent walks. Laughing when I make mistakes or have blonde moments. The hugs and "I love you's" before bed. Thank you for the little moments and for sticking around through the good, bad, and ugly bigger moments.

It's Never Been Home Till Now

It's always just been a house, never a home. My parents put a roof over my head growing up but I never felt comfortable and I never felt like I belonged. I was always walking on eggshells, waiting for the other shoe to drop. No matter what I went to them with, I had somehow screwed up. So somewhere along the way, I stopped going to them it wasn't worth waiting to see what my next mistake would be in their eyes.

The friends who have become family. Nowhere has ever felt like home till now.  And at first I have to say I thought the feeling was that I was scared to be alone, I thought it was pure loneliness. Leaving your house on Sundays and going home my apartment in the past was hard. The tears would start falling a little while after I got home.

I didn't understand why, I was so used to being alone. It didn't make sense to me. I couldn't understand why I would feel sad. It was this overwhelming feeling, like there was an elephant on my chest. It didn't make sense to me how I could be alone during the week and be absolutely fine. But coming home after spending the weekend with you guys I would feel so sad.

But I had also never had anywhere that felt like home. There wasn't a place where I could just be me, mistakes, flaws and all. There were never people who felt like family and treated me like family.

After taking the time to reflect on the situation, I realized it wasn't sadness from being alone. I was homesick. Your house is the first place that's felt like a home. It makes sense now. I'd never been homesick before because I never had anywhere that felt like home.

I'm thankful to have a place and people that feel like home. People I know I can run to when things get tough but also to share when things are good. Thankful for people who care about me, who won't judge me no matter what I do. Thankful for the moments I never had but am experiencing now.

To the Boy Who Tried

I was 24 and you were just trying to make me happy. I wasn't ready to be happy as silly as that sounds. I was living in a toxic environment just trying to hold myself together. Happiness wasn't on the horizon and survival was the only thing on my mind.

No one had ever put me first before themselves but you did and that didn't make sense to me. I see now that you were trying to live life with me. You were trying to give me life experiences, it was exactly what I didn't know I needed.

You spoke about the future and made plans for us but I was scared. There were so many factors in play.

I knew when you said you'd be there for me no matter what, that you meant it and that scared me too. No one had really been there for me before, not even people who were supposed to. So how could someone who hadn't known me that long, be there. But you were and you waited as long as you could.

And now what seems like a second chance might be possible in the future, at least that's what I hear from your friends. If I really have a second chance, I want my firsts to be with you. I don't want them to be with someone else but am I silly for waiting around for what might be? I'm already stuck on the what could have been. Should I really be jumping on the what might be wagon?

If I could do it all again, I wish I could say I'd make different decisions. But the decision to walk away from us and what we could have been was probably the best decision I could have made. I was so messed up and I'm not sure a relationship would have survived everything I was going through. If it did I may have just pushed you farther away, at least you are still in my life as a friend. I want you to be happy so I truly hope you're happy with her and that she treats you the way you should be treated. Because you are an amazing guy and you deserve the world.

I need to let you go, as much as I still want to hold on its time to let go. Everyone has regrets in their lives, you are my biggest regret.

It's Healing even at 26

The experiences I've never had before that I'm really thankful for because they are healing. These are just a few. The hugs good night before bed and the how did you sleep in the morning when I'm staying with you guys.

Making the drive to comfort me when I'm sick. When I'm upset and or scared about a situation I'm going through. For the big tight hugs that are sometimes for just because. Showing me it's okay not to be perfect; that it's okay not to know everything. That it's okay not to know something, but that sometimes you just need to research a topic a little.

For showing me that being an adult doesn't mean that you have to be a perfect cook, that it's okay to burn and overcook food. That some recipes don't need exact measurements and sometimes you should just let life happen. It's okay not to know what I want, to change my mind, and then change my mind again.

For showing me it's okay to be scared, that we aren't going to be confident in every situation that we are put into. Thank you for not trying to change me and proving to me that I've lovable.

So when you guys make the joke "the kid" is hanging out with us on Friday night. And say we are old and boring, why are you hanging out with us? I usually laugh, you're not old and boring to me. That's why, there's so much you're showing me. I'm not sure you realize it but I'm learning from you. It's changing me and the messed up views I previously had of the world and of myself. 

But it's also the feeling of being safe, secure, and loved. That's how you guys make me feel. You opened up your home and family to me. You made me feel welcome and safe, that's something I truly appreciate.

Even though it's nice to just sit and watch tv. It's not what we are doing that matters, it's more the feeling that comes from it. It feels like home, it's not a feeling I've ever had before.

I know that when I show up at your door that there's going to be no judgement, no matter what I've done. Rather maybe a few weird looks, some hugs, maybe some tears on my part but you always reassure me that it's going to be okay. The things that used to seem like such a big deal before I'm realizing aren't. The world isn't going to end when I make a mistake.

Some may think that these are things you need when you are little and that when you're an adult you've outgrown them. But if you've never had these things, you need them. Heck even if you've had them growing up you could still need them. Some may say those are little silly details that don't mean much, but for me they mean a heck of a whole lot.

I've grown a lot in the last year. Some of it has just been having the freedom to grow as my own person. Some of it has been from the new experiences, they are healing and help to fill in the holes. It's like roots and wings. You are giving me the roots I never had earlier in life, to help me grow my wings.

All the Ways that Matter

It's the moments in your life well my life in particular that I've never had before. A few months ago I wrote about how I wanted a mom. I wasn't crying for the biological one that I had, but I was longing for a mom. It's funny how life works. I have an "adopted" mom now and I'm getting the chance to experience moments I've never had before.

The "I love yous". The goofy smiles and laughter. Singing random songs and dancing in the kitchen. The big tight hugs. The good night, sleep tights before bed. The how did you sleep in the morning. Watching a show together at night just because we can. Sitting in the quiet morning silence with coffee and tea. 

Laughing at my mistakes because almost anything can be fixed. Sharing excitement for big life moments. 

It's the simple little acts. The acts that I've ever experienced, the things others may have taken for granted. Feeling loved just for being the person that I am, not having to try to fit into a mold and be someone else. Knowing I'm good enough as I am and that's an amazing feeling. When it comes down to it all, the experiences are really nice to have but I think it's the connection and bond that really make the experiences.

She may not have become a mom in the conventional sense that everyone thinks of but she's a mom in all the ways that matter most.