My Life with SMA at 25
I have been meditating on some thoughts a lot these past few weeks. Anyone who knows me knows I personally keep to myself with a lot. To give an example I could be in the ICU for having pneumonia and collapsed lungs, smile, find something to laugh about, and say “I’m good.” This is just who I am.
My little sister (my twin) is pregnant and I am soon going to be an uncle. I am very excited as you can imagine! I personally keep a lot of my personal and family life private due to my line of work. My twin moved, which makes our relationship more FaceTime based than personally seeing each other. As a result it isn’t easy having her so far, especially while she is going through this journey of entering motherhood.
If you seen my YouTube video “Chasing My Dream: What Am I Working Towards?” You would hear a lot about why I do what I do, especially while living with a progressive disability.
Because I have a progressive disability I take a lot of my mother’s time who is a single mother of three. I require assistance 24/7 having no true understanding of what it is like to be independent. To give you an example when you wake up what do you do? If you don’t have a disability such as mine who requires 24/7 care you would wake up, get ready, and choose what to do for the day. (Under the presumption you live in a country such as the USA). For me on the other hand I wake up and require assistance to get ready.
My twin wants us there for when she has the baby and we want to be there too, but for someone like me it isn’t that easy to simply just get up and go-let alone have someone else care for me (since my mother is my primary caregiver). To give a synopsis to travel long distance for me there are two options: 1. We fly via airplane. We’d pack for our entire stay, medical equipment has to come too, pray that the airlines does not damage my wheelchair because they’re quite notorious for doing so, and I would have to contact the local hospital to where we’d be staying since my respiratory isn’t the strongest and hope they have what I need in case I would need medical assistance. If the hospital doesn’t then more medical equipment would be traveling with us too. This is the first option. Now option number 2. We could drive with everything needed and prevent the possibility of my wheelchair being damaged. However, we would have to stop staying at hotels along the way due to me needing to lie down to stretch and use the bathroom. This too is not to mention the possibility of any vehicle problems along the way. We have traveled from California to Indiana driving and our handicap van ran into a huge problem where we were driving 20-30MPH on the freeway getting lucky and was very fortunate that the only mechanic open and available happened to stay to work on our handicap van on fourth of July a few years back. This was quite the experience as you can imagine. The mechanic was truly God sent because if we had just missed them by 5-10 minutes we would have been stranded since it was Fourth of July and everything was closed. Thankfully again the mechanic was genuine and helped us get back on the road. Traveling by road isn’t that easy either due to our economic state.
I take a lot of mom’s time because of my disability. Since birth I required 24/7 care. Being diagnosed at two and a half years old by having a muscle biopsy, to having dozens of back surgeries being hospitalized for two and a half months (not to mention the healing and recovery process for the time to come), to going in and out of the hospital primarily having pneumonia and collapsed lungs spending nearly six months in the hospital. Not to mention the emotions and strength I held just to endure, to eventually going through a spiritual warfare causing me to have a severe mental breakdown due to not being strong enough anymore and for having a medical procedure go bad where as you can imagine-lead me down a dark path experiencing complete desperation.
Within time I will eventually write a book talking about my entire life story and I have thought about creating YouTube videos more about certain things I have been through, but I prefer writing due to some things have to be seen through.
I write for various reasons. 1. I hope it brings hope offering you guidance along your own path 2. It gives me an outlet to let some things out 3. It gives the opportunity for you (the reader) to see some insights about my life journey.
Back to what I mentioned earlier is I personally keep a lot to myself for two reasons: 1. Everybody is going through something and I personally would rather be the one who becomes more of a highlight within your day because again “everybody is going through something.” To bring sunshine during somebody’s cloudy day can be liberating. And 2. I will talk a lot more in detail later, but I personally build my relationship with God (not people) when it comes to hard times because I don’t want to rely on someone to hear me out whenever I would need them because at some point they won’t always be there. The way I see it is if I always go to someone for something I eventually would become so dependent on them that when they no longer become available (meaning maybe your relationship fails or if they pass) I would cripple myself not knowing what to do in times of need. (I know how this may sound sort of contradictory due to my nature of needing 24/7 care, but when it comes mentally I personally want a relationship strong enough with God where I lean more towards faith than being lost not knowing what to do). Where I was going with this is one night me and my brother had a heart to heart talk about some personal things and one of our conversations was something I finally opened up to about how I take so much of moms time and I had expressed sympathy for I know it takes away time from our mom with them two. I personally do not cry in front of anybody and on this day tears rolled down my cheeks. I won’t go into detail about our conversation, but it did draw us closer and ended the night with a really good heartfelt hug. Something I know we both needed.
I wrote a lot and I genuinely look forward to writing my first book. I am waiting to reach a certain milestone first. Until then thank you for your time reading this, and if there is anything you can gain from this remember this: I wouldn’t have made it this far if it wasn’t for God. My strength definitely isn’t mine I have a progressive disability known as SMA Type Two. My soul has had some challenges along the way, but one things for sure. If you build your relationship with God you strengthen your spirit that can conquer anything. Jesus Saves.
“Keep your head up. I don’t know what it is you are going through. But I do know that you have gone through things in the past that you too once had thought you wouldn’t make it out of, or even had doubted at times, and you did get through it. Know that this too shall pass.”
I am sending a virtual long hug your way! You may not be able to see it, but it’s there.. Hang in there.. “Not to spoil the ending for you, but everything will be okay.”
I love you, I appreciate you, and remember grow through what you go through.
Much love,
~Victor
Chasing My Dream: What Am I Working Towards? YouTube Video: https://youtu.be/7ThiCyem47U?si=FOM3fPUhQQ_0FY1o
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Victortheinspiration's content is not intended to be a substitute for professional advice, diagnosis, or treatment. Always seek the advice of your mental health professional or other qualified health provider with any questions you may have regarding your current condition. Never disregard professional advice or delay in seeking it because of something you have heard in a video of Victortheinspiration, on social media, or shared within content you have consumed.