Guest Writer 5: Lily

Hi everyone! I hope you all are well and had a great week. Today is Part 2 of a series that started last week with Tina (if you have not read it, it is definitely worth the read!), and today you get to hear from her 15 year old daughter Lily. Lily is our first sibling guest writer and what she has to say is pretty incredible. I have been so lucky to connect with her and am so grateful to her for sharing her story and perspective. Next week, it will be back to me for a week or two! Enjoy Lily's entry.

-Alex

"Life with a special needs sister is always an adventure. Both good and bad. It’s like riding a roller coaster with your eyes closed. You never know where it’s taking you or what’s going to happen next. There are many ups and downs and unexpected twists and turns the first time around. But once you go around a few laps, you start to remember what’s going to happen next. But that doesn’t mean that each move stops making your heart race a little. For example, when I was younger, I didn’t understand why Noel was the way she was, or why she had to have continuous hospital visits, or why we had a bunch of different people coming into our house every day to take care of her. But as these things started to become normal, I got used to it. I got used to having a different person or the same person come in multiple times a week to get my sister out of bed. I got used to plans changing. I got used to things taking hours just to get out of the house. I got used to mom being in the hospital with Noel and that feeling of wondering if she was coming back home or not. I remember being in a children's hospital finding my favorite spot whether the marbles fell down the little track continuously. It was mesmerizing and calming and cool all at the same time. That was my spot with her. Thankfully, Noel hasn’t been to the hospital in six years. Which is a miracle all in itself.

Hello, my name is Lily Beauvais. I am 15 years old and the oldest of 4 younger siblings. I have a younger sister Noel who can be considered as the middle child and who has special needs. She is in a wheelchair full time and has muscular dystrophy. I have my two amazing parents, my dad Dustin and my mom Tina. Tina wrote the last blog post and she is very involved with the special needs community. So as you can imagine, I get to be pretty involved with that too. Which is really cool and I’m glad we can bring attention to disability awareness. Because, unfortunately, people with disabilities have a hard time being recognized or fitting in to the community. It is my goal to try and help fix that. Because as my mom says, “people just need to learn that asking questions and interacting is ok”. But they can never learn if they aren’t taught.

There are many kids who have siblings with special needs and from my perspective as someone with a sibling who has special needs, it’s easy to feel alone, isolated, constricted, or looked at differently from everyone else. Sometimes I feel like I am alone. Like no one else understands what I’m feeling. Because most people don’t have to experience stuff like this or know what it is like to live with someone who has special needs. It can be very difficult. People don’t understand that having a sister like Noel can be very draining. Not her as a person, but all of her care takes a lot of energy and it’s definitely not an easy thing to deal with. When I was younger and she would go to the hospital and our family would have to be seperated, it was hard to feel close together. All the feelings I mentioned before go hand in hand with one another. Isolation, feeling constricted, and loneliness. What I mean by feeling constricted is that Noel can’t do a lot of things. And therefore it can be very difficult to do things all together. We can’t do things that other families do. Like go on a challenging hike in the mountains, or just decide to go on a vacation and not worry about every detail that goes into bringing her along, or even going to someone's house for dinner and trying to see if she can get in or not. Thankfully when she does have a nurse, we can go do those things but just not with her. Which can sometimes make us feel bad that we are not with her. Everything is a challenge just to get her out of bed, just to go somewhere, or just to do something. It has never come easy. Or the feeling of isolation, like I’m going through it alone. It’s hard to see my mom struggle from everything she has gone through and had to deal with. It’s hard to deal with the reality that it’s never going to get easier. Noel will not get healed. This is who she is. The fact that I am going to be living on my own and my parents are still going to have to take care of her. The realization that Noel will never get those experiences in her life like living on her own, or driving a car, or many other things people can’t wait to experience when they get older and she can’t.

One feeling I have is being guilty. I feel guilty a lot. Which sounds funny because it’s not like I did anything wrong or caused her to be like this. No one did. But I feel guilty because I can do things she can’t, I can experience things she can’t. I so badly want to help her and make her better and I so badly just want to fix it for her. But I can’t and that hurts me. I always feel like I have to do something for her or help. I feel guilty for leaving to go to a friend's house or something because I’m not at home helping her care or be with her. Which, I will add, was by no ones doing that made me feel that way. It kind of just happens. I often feel bad for her and at the same time I don’t because she is blessed with the life she has. One thing I admire about Noel is that she is very content and positive with her life. She doesn’t complain about being in a wheelchair. She doesn’t want to be different. She is joyful with the situation she is in. I remember many times when we would ask what we wanted to pray for and me and my brother would say “for Noel to be healed” and instead of her saying to walk or to be healed, she would say to go to Disney world or go to Hawaii or presents. That’s all she wants is presents. Instead of living selfishly like most of us do, she focuses on other things. She wants presents or to go somewhere instead of being healed. She is joyful and content with her life. It is all she has ever known. I also feel protective over her. And it really bothers me when we are out and I see people staring at her, or when people say mean things to her or about her especially on Tik Tok. It bothers me and sometimes I so badly want to say something or yell something that is not very nice. My mom is great at handling those things. Way better than I would be so I try to keep my mouth shut. I am protective of her and it makes me angry and hurts my heart how people treat or react to her. It also bothers me when people have so much pity for her or they say they feel so bad for her because she is happy and content with her life. She is living and living an amazing life. She is so blessed.

I am going to be real here because I know there are other siblings out there like this too. I have resentment. I have resentment because of all the ways our lives have changed. The things we have had to do. The energy and work it takes to take care of her. I have resentment not towards Noel, but how she is. I do struggle with that and I will confess it. And even though it is not her fault, I do take it out on her sometimes. Which is something I need to pray about because it is not ok. But over years and years of care, and plans changing, and everything else that involves having a special needs sibling, resentment can build up. I know every sibling has struggled with this at some point. So don’t feel like you're horrible because we all experience it. However, we do need to pray about it and get rid of it.

Now to the positive of having a special needs sister because I promise there is that to. Noel is so amazing. I love my relationship with her. We have funny moments, I would lay in bed with her when I was younger, we play games together, and she has taught me so much. I wouldn’t be the person I am today without the things we have gone through. She is the strongest person I know and I’m so proud to have her a part of my life. She is joyful, caring, funny, strong, and so much more. To be honest, she has also given me a reality check. When I start to take all the things I am doing or can do for granted, I hear this little voice in my head that says “Lily, what the heck are you complaining about? You have so much! Noel is happy as can be sitting in her room building legos and here you are doing all the things you want to and you're complaining about it!” That sure does hit me hard sometimes and helps me to realize how blessed I am. She is so sassy, happy, and thoughtful and I couldn’t ask for a better sister.

I think some people think that because Noel has special needs, we don’t interact or fight like sisters. Well let me tell you, we sure do. We fight, and be sassy and gripe at each other. She can be mean to me and I can be mean to her sometimes. It happens. she ‘ll run into me with her chair or I’ll turn her wheelchair off. Which before you think we’re so terrible or mean to each other, I promise, it’s just what it’s like having a sister with special needs sometimes. And, we can annoy the heck out of each other. Because that is just how sisters are. I remember one time when we got into an argument I was sitting at my desk in my room and she just ran right into the desk trying to run into me and she ripped the whole leg off of the desk! The whole thing! And when I said stop, she continued to keep going and then finally stopped. At the time it wasn’t very funny, but it is hilarious now. Impressive actually. She ripped a whole table leg off of the desk. However, it was one of those IKEA desks that we built ourselves so it was definitely the highest quality desk. I have made such great memories with her and I love her so much and I love my life. I am beyond blessed and I am always learning something from her.

Wow that was a lot to share and I’m so happy I got to share it. I hope it helped and I am so thankful to have had this opportunity to write this. So thank you. But to conclude it all, the best advice I would give is cherish each moment. Each moment is unique and special no matter how hard, or easy, or simple it is. Learn from it and soak it all up. And be joyful. Be positive. Enjoy every second you have. I promise it will make a world’s difference when you look at life differently and through the eyes of positivity and gratitude. Thank you so much for reading and I hope this can relate to some of you!"

-Lily Beauvais