That Time

That time that I can’t remember very well, but also can’t get out of my mind.  It was about 5 or 6 years ago. I was 19 or 20 and living at home. My mom was still walking, barely. She needed to be held up, but she could still sometimes move her legs very slowly.

My parents had just gotten home from being out somewhere, and I was in the kitchen with a close friend that I went to high school with. I don’t think my mom had any caregivers yet, she was still sleeping upstairs in my parents bedroom.  Back then, my dad and my younger sister came up with a way to get my mom into her chair and upstairs as easily as possible, which in reality, was still very difficult. The two of them did it together usually, because they were the strongest.

Whenever it came to lifting my mom, I tried to never participate. I had never been very physically strong, and lifting up my moms dead weight was difficult for even my dad to do on his own.  Not to mention the one time I tried to lift my mom out of a chair, but I couldn’t hold her, and she fell to the floor. Of course then, I couldn’t get her up off of the floor on my own, and became even more frustrated. All the while my mom just laughed, but the situation made me feel completely useless.

My dad had been struggling to get my mom inside the house on his own. I heard the garage door fly open, and my mom with her slurred speech, was yelling at my dad. He wasn’t holding her up the right way, or something. He got more and more frustrated as he was trying to get her up one step, and into her chair, that would carry her up the stairs to their bedroom. He yelled for me to come and help him, and even though I was terrified ( I knew I wasn’t strong enough to successfully help) I ran over quickly. My mom was yelling, or trying to. She was frustrated, and my dad was trying to hold her up, and understand what she was saying, and getting frustrated too. It was the last place I wanted to be at that moment.  I knew I was next to get yelled at.

I can’t remember exactly what was said, but my dad just started screaming at me. I wasn’t holding my mom the right way, the way my sister did it.  I wasn’t making it easier, I wasn’t being helpful enough, I was useless. I tried to do everything the right way so I could just be done with it, and escape, but I simply was not strong enough, and I was scared. I didn’t want to drop my mom, or be the reason she was uncomfortable, or piss off my dad any more than I already had. Finally my dad just yelled at me some more, and told me to go away since I wasn’t helping. I remember walking back into the kitchen where my friend was, and just sort of shrugging my shoulders with tears in my eyes, and thinking, this is what I go through everyday now, this is my reality, and I was glad that he was there, when I really needed a friend.

Often Awesome

I have been house sitting and dog sitting for 6 days now, and in my boredom, I spent the past 2 days watching the entire web series called “Often Awesome.” A story about a young 30-year-old man diagnosed with ALS in 2009. It completely blew me away. His mission with his girlfriend, and closest friends, who later formed the “Often Awesome Army” was simply to spread awareness about this disease.  He wanted people to know what ALS is, how it effects people, and that is not just an old persons disease. My mom was only 49 when she diagnosed, and people said that was pretty young.  People as young as 16 have been diagnosed with ALS.

There were parts in the video that were really hard for me to watch, and frustrations people had in dealing with ALS that I could totally relate to.  I look back and wish that someone had documented more of my mom’s life.  Watching how everyone in the community came together in this series, and how people from all over wanted to get involved and help in any way that they could, just blew my mind. People really can surprise you, and bring so much joy to others.

Please watch the series, at least one episode, and spread the word about ALS. Educate yourself and others about what ALS is, and how people are effected by it everyday. Here is a link to the first episode of Often Awesome: http://www.youtube.com/watch?v=COeSNqjReM0

Missing Mommy

When I was younger, I never would have imagined how much I would need a hug from my mom one day. I mean REALLY need one.  A mom hug is different from any other kind, especially mine. She knew just how long to hug, and just how hard, in any and every situation. Mom hugs are incredibly comforting and reassuring aka, the best feeling EVER. I rarely wanted a hug from my mom when I younger, I liked dealing with things on my own. I would give anything for a hug from my mom right now.

Everything reminds me of her. Whenever something bad happens, something good, something terrifying, I wish she was with me, I wish she could hug me. I want to hear her laugh, make her laugh, dance with her. Sometimes, it makes me so sad to know that none of those things will ever happen again, no matter how much I miss them, or how much I want them to. It often breaks my heart to know that I can text her as often as I want to, but I’ll never hear her voice again. I hate ALS.

I recently told a stranger whose father has ALS and just lost his ability to speak, to hold onto what they still have; A father fighting for his life because he still has people in his life (aka that person) that he loves so much. I am happy that my mom is still here, and that she still wants to be. I am so grateful for her strength and courage.  I use it to inspire myself in times where I could easily fall apart.

It’s so difficult to be reminded every single day, what she has lost, and what I have lost because of her disease.  Missing her like she is gone, when she is still here, but I keep losing pieces of her over time.  It’s the most difficult thing that I have ever had to deal with. I find comfort in knowing that I have an amazing support system in family and friends, and complete strangers, dealing with the same horrific disease all over the world. It is comforting to feel like I am not alone, but a hug from my mom would be a million trillion, gazillion times better.

Imagining a hug from my mom: My eyes gently close as her skinny arms wrap around me. I lean in and rest my head on her shoulders, as she holds me tight and squeezes hard. We both take a deep breath, and she lightens up her squeeze a little. Another deep breath, and in that moment all of my fears, frustrations, sadness, confusion, it’s all gone. My head clears, everything feels quiet. She begins to rock me in her arms, still holding me tightly, for a few minutes, until she can sense I feel better. A cloud of calm comes over me. Then she moves her arms from being wrapped around me, and softly rubs my back for about thirty seconds before completely letting go. I would give ANYTHING to feel that right now. ANYTHING.

California

I left Connecticut on August 1st, and arrived in California on August 10th. I have been texting my mom every day, but I still miss her a lot. I miss being able to go say hi and hang out with her whenever I want. I’ll be back in CT in a couple of months to prepare for the ALS walk that I do every year. I am really looking forward to it.

I am trying to surprise my mom about coming home. It’s been really hard not to tell her. Someone in my family will probably accidentally mention it, but I hope not. I would really love for my being there to be a surprise.

Right now I am currently trying to figure out shirt designs, amount, and sizes. The amount and sizes are always the hardest part for me to figure out. So many people always say that they are going and never end up showing up, or people who say maybe end up showing up with 5 friends last minute. I always want everyone to be able to have a shirt, but I also hate ending up with a bunch of extras. After all the years I have been doing this I have wayyy too many “Lee’s Miracle Marchers” shirts, and they always have the year on them, so they aren’t really re-wearable for the next year. Oh well…

Seven Years

Seven years ago in June, my mom was officially diagnosed with ALS. It’s hard to believe that it’s been seven years. Sometimes I feel like it’s only been one year, and other times it feels like 50. I graduated from high school seven years ago. To me, high school definitely feels like a very very long time ago, without question.  Sometimes I feel like I’m standing still, stuck, or just not going anywhere, but when I think back to high school, I feel like I have definitely accomplished a lot in the past seven years. Not as much as some, but still a lot.

Up until seven years ago, my life was pretty normal.  My family has always been a little crazy/dysfunctional but, I think most families are, in one way or another.  I can’t imagine what my  life would be like if my mom never had ALS. It has changed me so much as a person. I try to remember everyday not to take anything for granted, things my mom can’t do anymore, like talking, swallowing, or walking.  Thinking about all of her strength, as well as her hardships gives me both inspiration and motivation. Motivation to be a better person, to work harder, and to be happy as often as I can.

For the past seven years, my life has basically revolved around my mom having ALS.  Hospital scares, constantly checking my cell phone (just in case) taking care of her at night, waiting for caregivers in the morning, getting involved with fundraising/”the cause”… etc. So much taking care of my mom and my siblings, and my family, so much pressure to always be around, be available, be close by. In 42 days I am moving to California, and everything is about to change. I’ll still email my mom all the time, and my family can always call, skype, or text.  I’ll try my best to stay close, without being here.

I’m going to miss being the first person there when something happens, seeing my moms face at least once a week, watching TV shows with her, I am going to miss so much. But it’s time for me to start my own life. Time to stop worrying ALL the time, and time to start being the person that my amazing mother raised me to be. Time to move forward, not to move on. It’s an exciting time. It’s like graduating high school should have been for me seven years ago. Full of hopes, and full of dreams. I put my life on hold for my mom, and for my family, because I didn’t know how not to. Seven years have gone by, a lot has happened, a lot has changed, and I think I’m ready now…

Back

It’s been a long time since I’ve written anything here. A lot has happened and there have been days when I thought about writing, but either got distracted or didn’t have time. Since moving out of my parents house I will admit that I spend a little less time with my mom, but I still make an effort to see her, talk to her, and make sure that she feels included in my life.

Recently for no apparent reason I haven’t felt very close to my mom.  I miss spending nights (all night) with her.  I haven’t felt connected to my mom in the past few months and I’m not sure why. We still text and talk when we’re together, but something is different.  I can’t seem to figure it out. On the nights when I would stay and take care of her, we sometimes wouldn’t talk at all, but I still felt connected to her. Now that we spend a little less time in each others presence, but talk the same amount, or more, I feel a huge disconnect.

Maybe it’s all in my head. Or maybe it’s because, recently I have been seeing pictures of my friends and their moms hanging out. I feel like all of a sudden everyone is best friends with their mom, and it makes me really jealous. I’ll never be that close with my mom. I’ll never be able to go out with just my mom and have a beer with her, or go dancing with her, or take a workout class with her. I know that doing those things with my mom, really doesn’t matter at all in the big scheme of things, but it still makes me feel sad.

Movies

Taking my mom to the movies is not as complicated as some may think.  At first thought it might seem annoying, but it’s really not once everything gets figured out. Things like, who’s driving moms van, and making sure she would be able to get into the theater easily. My mom loves Harry Potter. She wanted to see the last movie the night it came out at midnight. I told her it was sold out (the truth) but that we would see it another time. I ended up seeing the movie twice without my mom, and felt pretty badly about it.  One day at my house, my mom asked if we could go see it, and someone blurted out that we saw it twice already. She then texted saying “you went to see it without me?” I felt awful. We started talking about going to see it later that day, or the next day. All of a sudden my mom just started crying. She said we weren’t going to see the movie that day or the next because she wasn’t feeling well. I thought she was just making it up, because I must have accidentally made it seem annoying to take her. I was convinced that I must have said or did something to upset her, maybe we accidentally made her think it was a pitty trip to the movies?

About a week a later I talked to my sister about it, who was there when it all happened. She told me that I didn’t do or say anything to make our mom upset.  She told me that mom really wasn’t feeling well, and she hasn’t been. She said she didnt know exactly what was wrong, just that she hadn’t been feeling well the last couple of days. I was relieved to know that I wasn’t the one to upset her, but also worried about her condition. My mom usually only tells my caregivers and my dad when she doesn’t feel well unless it’s really bad. Luckily it only lasted a couple of days and she is feeling back to “normal” this week.

Imagine Living with ALS

Victory Ball

On Saturday March 5th I attended the 14th Annual Victory Ball, a fundraiser for the ALS Association, CT Chapter. My mom, her caregiver, and I were invited by people in the association, and had no idea what to expect. When we first arrived we checked in, were told what table we would be sitting at, and stood quietly in the corner. It was a little crowded, and my mom didn’t want to be in the way so we stood sort of to the side, away from everyone else until we were able to go to our table in the next room. One woman told us who else would be sitting at our table, but we still had no idea who they were.

Table number 7. We were the last to arrive at our table, and it was a bit awkward at first. One woman came over to say hello to my mom, but I couldn’t, understand her. I saw her start to walk away and I kept saying “no, she can talk, she can talk.” I thought the woman just assumed my mom couldn’t talk and was going back to her seat across the table, and then I realized, it was the woman who couldn’t talk. I felt terrible, and apologized. The woman was very understanding about it, but I still felt like an idiot.

The man sitting next to me also had ALS. He was very sweet. He asked a lot about my family, siblings, where we’re from, that sort of thing. He made a few jokes but was also a little bit difficult to understand. I forgot what it was like trying to interpret what my mom was saying, back when she could barely still speak.

After a woman in the ALS Association introduced everyone at to our table, it was a little less awkward. We ate, made small talk, told a few jokes, it was nice. Then it was time for the awards. That part was only interesting to me, because I got to see all of the other people fighting so hard to help others with this disease. It was inspiring, and comforting to see so many people affected by the same disease and fighting for a cure. I’ve seen tons of people, and families at the walks before, but for some reason for me, this event stood out in a different light. It was an honor to get to be there and share all of that with my mom.

Even though at first it was a little uncomfortable, and we didn’t really know anyone, I think it was important for us to be there, to sort of to be the face of the disease, and give hope to others. My mom was diagnosed with ALS 5 and a 1/2 years ago, and she was cheerful, and out, and dressed up for the occasion. I hope that other ALS patients were able to see that, and think to themselves “this diagnosis doesn’t have to be a death sentence” Also for the people who donate so much money to the cause, it’s worth it. The money is going to families in situations like mine, to make all of the things that my mom is able to do, possible for them too.

Cousins

When I got home from work this afternoon, I randomly decided to stop and grab the mail. My cousin Cristin wrote a letter to my mom. I brought it inside and asked my mom if I could read it to her. The return address said “your prettier niece.” Cristin is 13 years old and growing up fast. In her letter she wrote about how she loves to do my moms hair, and memories she has of my mom. Christin and her family, my other cousins, live in FL. Unfortunately we don’t get to see them as often as we’d all like.

Cristin went on to write about how much my mom means to her. She even mentioned a story about how she used my moms hair to learn how to braid. She said that every time she prays or wishes on a star, she always wishes for my mom (her Aunt Lee) to get better. Cristin also said that whenever she hears people talk about Lou Gehrigs Disease or ALS, she gets upset.

I read the 3 page letter to my mom, and when I randomly stumbled on a word and looked over at her, she was crying. The part that made her cry the most was when Cristin wrote that she doesn’t remember a lot about my mom before she got sick. She doesn’t have a lot of memories of my mom walking, talking or eating, but she did say that she loves how NOTHING will stop my mom from getting some sun or drinking a cocktail. That made my mom smile from ear to ear.