I learned early on just how unfair life is.
I am beyond lucky to have been born into a wonderful, loving family. I was daddy’s little girl, my mother was (and still is) my best friend and my brother and I (for the most part) got (and still do get) along extraordinarily. I was living the perfect life. Unfortunately, it didn’t last long.
I was six years old when everything began. I can distinctly remember my father going in and out of the hospital. I remember upon his return home we made a “Welcome Home” sign and hung decorations around the house. I was just so happy to have my daddy back home. Little did I fully realize that the doctors had diagnosed my father with Multiple Sclerosis (MS) and I would spend the next decade watching the disease progress, eventually taking his life.
They say bad things happen in threes, right? Well, mine happened in twos. Around the same time that all of this was going on with my father, one of the teachers at school noticed my brother Christopher was walking a bit differently and urged my mother to have him checked out. Well, she did. No, my brother didn’t have the same neurological disease my father had. Instead, his was muscular. Christopher was suffering from Duchenne Muscular Dystrophy (DMD) – a progressive disease that would weaken his muscle (all of the muscles, heart and lungs included) until, well, you get it.
The next few years after both diagnoses were a shift from the life I had known prior. In one sense I was lucky that all of this happened when I was so young, as I didn’t really know any other kind of life. In another sense, at such a young age, all possibilities of “normal” family things were taken away from me.
I was just seven years old when I had my first “omg, my father is actually sick” moment. My father planned a huge 40th birthday for my mother – all of our family and friends were in attendance. At this point my father was walking with a cane. He was walking in the hallway of the event space, lost his balance and fell. He fell so hard right on his chin that he was rushed to the emergency room because he needed stitches. From that day forward, birthdays and events were never the same, and would never be again.
During this time, my brother’s disease progressed as well. I would spend my lunch period in middle school going to his classroom to hold his hand while we slowly walked around the room. He had to stop playing on his little league baseball team (anyone who knows Christopher knows how much he loves baseball). His life had changed drastically – no longer would he able to partake in the same activities as his peers. No longer could he grow up to be the teenager driving to school or just going out for his own pleasure. Instead, his future consisted of needing to rely on other people for everything.
As you can imagine, my household growing up was quite different than others. Our family vacations were limited to the Jersey Shore, and those ended after only a few years once my father’s MS progressed. Father-daughter dances were missed. I joined other families many times on their outings, whether the outing was a day at the beach or just out to dinner. My father and brother were never able to attend my dance competitions and even my mother had to miss one or two (luckily, she made it work almost all of the time and was of course the loudest one in the crowd).
By the time I was a teenager I was helping to feed my father. I’d scratch him when he’d have an itch. I’d massage his legs to help get the blood flowing better. I’d bring him something he couldn’t get on his own. Of course as a teenager we’d fight – don’t all fathers and daughters argue though? The MS affected his brain – he’d get stressed out or fed up with the disease, and he’d say things that I knew he didn’t mean. But I knew he loved me more than anything (well, not as much as he loved my mother) and I truly was lucky in that aspect – to have a father who would do everything he could for me.
As I alluded to above, I lost my father to MS when I was just 18 years old. I miss him so much that just thinking about it aches my heart. But, that’s a story for another time, which I promise I will also share with you.
I am so grateful to still have Christopher in my life. He’ll be turning 22 years old in October, and he is my best friend (only rivaling Mom for that title). It’s not easy as he can’t do much for himself – but I learned quickly on that life isn’t easy.
I went from feeding my father to feeding my brother, to wiping his nose when it runs, to giving him the remote or the PlayStation controller, to putting his jacket on for him, to locking him in the car, and so much more. My mother is his primary caretaker and does significantly more than I do, but I do try my best to help out as much as I can, which is a huge reason why I moved back home after college.
Growing up in a house with two wheelchairs gave me a real life experience not many other children had. It’s almost weird to me that others didn’t grow up helping care for others in the way I did – everything happened to me when I was so young that it was the norm for me. I am a firm believer that everything happens for a reason, and I was given the life I was handed for a reason – because I’m strong enough to handle it, because I was supposed to learn from it and because I had to experience it so I can help others both in similar situations or just suffering from hardships.
I learned the importance of family. I learned the importance of having strength, but also knowing when to ask for help. I learned how to put things into perspective; to know what really matters in life and what should really be valued. I learned how truly powerful it is to love another to the point where you would do anything for that person. I learned that when hard times happen some people leave because they can’t handle it, but some people stay, and those are the people you need in your life. The people who know that you could use help without you having to ask, the people who are there to just listen to you, the people who may not know exactly what you’re going through – but love and care for you so much they try to put themselves in your shoes.
My life wasn’t easy. My life still isn’t easy. But I know others out there have it worse, and I’m truly blessed for everything that I do have.
If you’ve made it to the end of this post – thank you. I have much more to share about my father and brother, so please stay tuned.