Tag: love

Something bothered me at dinner.

Recently Charlie and I were out to dinner, like whenever we go out, Charlie was sitting in his wheelchair. We had been sitting there chatting away until the waiter came to take our orders. We were out for Chinese food(which Charlie says is a winter food and I keep questioning why). I ordered my meal and then the waiter says to me “and what is he having?”. This beyond upset me, but I played it off and said “babe, what are you getting?” and I gestured to him. That is when the waiter turned to listen to Charlie order his meal.

The waiter clearly knew that Charlie was capable of speaking for himself as per the fact that we had just been having a conversation before he came to take our orders. This is maybe the second time that Charlie have ran into a situation where people would ask me something about him. The other time we were at book signing from our favorite YouTubers, Shane and Hannah aka Squirmy and Grubs(I’ll insert a picture from that event below). We had gotten there a little late and so we were down an aisle of the bookstore, thus we could not see anything that was happening, but there was nothing to see, we just wanted to hear what they were saying. This lady that was standing in front of us, that probably wasn’t able to much more than we could says to me “does he wanna move over here so he can see?” I tap Charlie on the shoulder and say “its up to you” and he said to the lady “no thanks, we are good.” He handled it much better than I wanted to.

Just because someone is in a wheelchair, does not mean that that they are unable to speak. Yes, that is sometime the case, but the wheelchair also doesn’t mean that they can’t understand what you are saying to them or how you are acting around them.

Back to dinner, I wanted so badly to get up and walk out of the restaurant because of how bothered I was by this man ignoring Charlie and not speaking to him, but I didn’t. I chalked it up to the cultural difference and left it at that.

After dinner we went to the supermarket to get something for dessert, there was a girl helping the cashier bag and she had been giving me the dirtiest look the whole time we were waiting in line. I just kept touching Charlies shoulder and calling him babe so that way she knew that I was his girlfriend and not his caregiver.

I don’t understand why people can’t accept the fact that interabled relationships are a thing. Dating my boyfriend does not make me a good person, it doesn’t make me anything other than his girlfriend. I did not settle, I couldn’t “do better” than him. He is my best friend and the love of my life. I love him with every piece of me. We are saying because we love each other, and everything that comes with being with each other.

If there is one thing that I can’t stress enough, is always be an advocate. Always speak for those who’s voices are so often aren’t heard.

Loving Someone with Cerebral Palsy

So here I am sitting in my bed watching videos on my phone and texting Charlie(what else is new haha). He sent me a link to an article and said “THIS IS YOU.” The article was from the mighty.com and it was titled “What It Means to Love Someone with Cerebral Palsy” which was written by a girl named Ashley Burnside back in February of 2017. “The Mighty” is a website that has created a community of support for people who are facing health challenges as well as the people in their lives. They are partnered with companies such as the American Foundation for Suicide Prevention, National Down Syndrome Society, The Ehlers Danlos Society, National Organization for Rare Disorders, National Alliance for Caregiving and of course the Cerebral Palsy Foundation.

Not going to lie, when I first opened the article I thought it was going to be some sappy article from a mom of a child with Cerebral Palsy and how their child is their little hero. But to my surprise, the article was not that at all. It was a young girl that wrote it like I mentioned before. She started with a childhood memory about knowing at the age of four that according to society, people with disabilities are not likely to get a fairytale ending. She was convinced that her disability would always hold her back.

She says “Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.” This paragraph is exactly what I want people who question interabled relationships to understand. 

I love each and every part of Charlie, from helping him get dressed, cutting food, walking behind him on uneven surfaces, to waking up with him during spasms at the wee hours of the morning. His disability is a huge part of his life, it affects him everyday. How could I not love it? It would be like not loving someone because they can’t grow a beard.

I wouldn’t trade the nights that I haven’t slept because of was holding him during spasms for the world. I will always be his voice when people have a hard time understanding what he is saying. I have no problem telling strangers to move out of the way before I run them over with his wheelchair and they don’t hear the first time either of us say “excuse me” or “watch your back.”

Thank you Ashley for this incredibly insightful article. You said all the things that Charlie and I could not find the words to do so. I highly recommend that you all check out the article, here’s the link:

https://themighty.com/2017/02/cerebral-palsy-and-romantic-relationships/

The Importance of Reassurance

Reassurance/encouragement is important in any relationship, but I would go so far as to say that  it is more important in an interabled relationship. I know what to expect with my Cerebral Palsy every single day, despite that fact it doesn’t mean I don’t have bad days along the way. Some days are harder than others whether it be from stiffness or just wishing I could do more on my own; one smile or one kiss from Margaret instantly fixes everything. When Margaret just drops an “I love you” and says “I knew you needed it,” I’m reassured right then and there. 

Margaret is also amazing with encouragement. The first thing that comes to mind is when I put my seatbelt on by myself in her car. Her reaction was totally unexpected and made the moment even more sweeter. Another example is cutting my food on my own(with a little bit of help from Margaret). Like I said in the last blog everything takes trial and error. Margaret always cheers me on and never lets me struggle. Just remember how much your significant other is doing for you each day, a hug or an I love you can go a very long way. 

I never wanted to admit that I was a person that needed reassurance. I still don’t like to admit it, but I am getting better with it. Charlie is partly to thank for that. What I like to say is that I am very secure in our relationship, I don’t need reassurance about Charlies love for me(even though he reminds me every chance he gets), but I need to know that I am doing okay with everything. I need that little, gentle reminder that I am okay and that I am doing the right thing, and I am doing enough. I work full time and I am also going to school for my Masters(not to brag but I have a 4.0), I have a healthy and loving relationship, and I am an overall good person. I still feel that I need to do more, that I need to prove myself. Charlie is always there to remind me that I am doing great and that I do not need to prove myself. 

If there is anything that you take from reading this article let it be this: even if you think your significant other doesn’t need to here some reassuance, give it to them anyway.

Does Charlie need 24/7 care?

Does Charlie Need Help 24/7?

A common misconception about people with disabilities, specifically those in wheelchairs, is that they need help 24/7 or they can’t be on their own. Being three months premature doctors didn’t think I would ever be able to walk. But as my life has gone on I’ve been able to do more than just be able to walk. I have been able to learn how to shower on my own, put my own seatbelt on. Each thing that I do on my own hasn’t come easily. Each thing has taken a bunch of trial and error.

When I first met Margaret, she said to me “just let me know what it is that you need help with.” From the very beginning she had made it clear she wanted me to be as independent as possible, she has no problem helping me but she wants be to be able to do thing on my own and for myself. In the past two months, I have become more independent than I thought I ever would, all thanks to her. I might be dependent on Margaret for a lot but not for everything, so the answer to the big question is: no,  I don’t need help 24/7. The biggest things Margaret helps me with are getting me dressed, cutting food(which I am beginning to help with thanks to her) and being my primary transportation. 

Another misconception is that Margaret can’t have her own life, because she’s with me, which is far from true. People might think that Margaret being with me holds her back but that is false. For example, dancing she sits on my lap in my wheelchair so we both experience it. Another example is when we go shopping I hold everything, she no doubt would say this is a massive perk. My wheelchair also holds Margaret’s purse which is a huge plus when going to pay (expect when people move too slow in front of us, ugh the worst lol). There is not much that limits what her and I can do together, we can pretty much do most things that other couples do.

If there is one piece of advice that I can leave you with it is: always remember at the end of everyday to say I love you or just simply grab their hand and hold it, always say thank you after your significant other does something for you, I’ve discovered it means the world. 

Now that Charlie has had his chance to explain that he does not need 24/7 care, I would like to comment on the care giving aspect of our relationship. There are so many little things that Charlie needs help with, or prefers help with (like opening a water bottle so he doesn’t spill it on himself and look like he peed his pants lol), but I do not even see any of these things as care giving. So many of the little things just seem so natural. We had a wedding that we went to and I got him all dressed and ready (minus the tie, thanks dad for that) and getting him dressed just seemed like an extension of getting myself ready, if that makes any sense. On the outside, it may look like a lot that I do for him, but in reality, to me, it does not feel like I am really doing anything. I really hope that all of that makes sense because I have no idea how else to explain it. But no, Charlie does not need constant 24/7 care and caring for him comes second nature to me and I don’t even think about doing things for him anymore(not that I ever really did)

Our Favorite Memories Together

Charlie: My favorite moment was when, well there’s a lot but I can only choose one. The moment happened a month ago at Jones Beach State Park. Let me set the scene, it was a perfect summer night with a beautiful sunset that happened seconds before. Going into the night I knew if it was possible I wanted to get out of my wheelchair and actually sit next to Margaret. That night that dream became a reality. Margaret found an open bench that my wheelchair could go right up to, I was seconds from something I’ve always wanted. Margaret grabbed my hands and helped me sit down on the bench. The look on her face was something I’ll never forget, it was pure happiness. It was a pinch myself moment, it couldn’t be real, expect it was.

Margaret: Not to sound cliche but, it’s so hard to pick just one memory. I could pick when we were on our first date sitting in my car waiting for that first kiss to happen. I could pick the first time Charlie came to my house and fit right in with my family. But the one that stands out the most to me is when he bought me flowers one Friday because I was having a terrible day. I had texted him during work that I was having a bad day and I was putting my phone away cause work was crazy. He messaged me to say he had a surprise for me when I got to his house later on. As soon as work ended I headed straight to his house and the second I walked in his room, there was a beautiful bouquet of pink roses on his dresser waiting for me. I almost started to cry, I hugged him so tightly. Flowers don’t have to just be for special occasions, they can be for whenever. I will never forget him doing that for me.