I started reading the book When Breath Becomes Air by Paul Kalanithi Wednesday afternoon during my lunch break. I only made it through the Preface and the Forward so far, but I can tell you that there was nothing in me that wanted to put the book down and go back to work, except for the fact that I don’t want to be fired. Minor details. The books’ forward begins with, what I can assume is, close to the end of the story. This provoked a thought within me: What if I were to write the forward to my book now? So many people have encouraged me to write a book, and I never can think of where to begin. Why not start with some highlight of an ending?
I carefully am slicing the vegetables go into this evening’s beef stew. My hands shake a bit as I slice (One of the joys of having Cerebral Palsy). I slide the sliced vegetables off of the cutting board and into the pot. As I smell the aroma of the preparations of tonight’s meal I can’t help but smile. My family and I live a simple life, but we love it. My husband is sitting at his desk in his office working on a website that he just picked up from a new client. Sometimes when I hear him making groaning noises I worry he is ripping his hair out; but only for a few seconds before I just laugh inside. He may be frustrated when he lets out that groan, but I also know he loves what he does and he’ll figure it out. Like me, he was told be many he would never make it. Now, he is a CEO of a web design company that focuses on accessibility in web design. I won’t lie when he first started his endeavor I was nervous for him, afraid at times he would lose the roof over his head or not have food to eat. He always assured me that he had backup plans. I always prayed for him; that he would never have to go to any of his backup plans. Now as I listen to him type away at his keyboard my nerves are not bothered by his work. Now they are split over other things instead!
I put the lid on the pot to let the stew simmer for forty-five minutes. As the stew simmers, I make sure everything else is prepared for the meal and set the table. Two adult settings and one for our small toddler who is right now, thankfully entertained by the toys in their playpen. The newest addition to our family is miraculously sleeping in their infant seat less than a 20 feet away. Usually, things are not this peaceful and in a half an hour I’m sure either one or both of them will be crying for a need to be met. As I look at both of our children not only do I consider the current peacefulness a miracle but I consider their very existence a miracle. I know, in reality, the existence of any life is a miracle, but my husband and I were faced with particular challenges in creating this family.
I am not going to go into all of them right now, but one of the first ones we encountered was that before we even got married, we wanted to be financially stable. Not a bad idea. Both of us, however, have Cerebral Palsy a disability that is considered a “targeted disability” when it comes to workforce statistics. My husband was smarter than I was and figured out much earlier in his life that he would have to forge his path to know financial stability. Me, well, not so much. I had this disillusioned belief until my early thirties that if I got the right degrees, did internships, kept connections and worked hard that I would get a good job. Granted, this had seemed to be working until I was twenty-nine and a man who will only be known as “M” throughout this story tried to destroy me. After my experience with “M,” I had to start at the bottom of the totem pole in the workforce again as if I never went to school, had no experience. It was one of the most bittersweet times of my life.
Eventually, through some exceptional circumstances, I broke into the corporate world getting my first corporate job right outside of Boston MA in a human resources department. This was such a blessing because when I first met my husband he lived in Massachusetts and I used to live in New York. A long distance relationship for anyone can be difficult. A long distance relationship for two people with disabilities on low incomes; even more so. How did I break into the corporate world, one in which I have been able to stay in, grow in and love? Well, all in all, it’s a long story. But as my husband puts it; I found my “Mr. Johnson” (this is a reference to “Mr. Johnson from NASA as portrayed in the 2017 movie “Hidden Figures.” My current company was able to look past societal prejudices, misconceptions, and statistics–and they took a chance on hiring me–an individual with a “targeted disability.”
Things weren’t always like this and trust me, the scene before me now is a rarity. It is almost never this peaceful; things hardly ever go this smoothly. As a matter of fact, I wouldn’t be surprised if I burn the stew simply because I’m lost in the moment! Thankfully, my family thinks “burnt” is a natural food flavoring! Yes, my life was, is and probably always will be a little crazy. I wouldn’t have it any other way. I mean how else would you get a book like this in your hands?
Before you turn the page to the first chapter, I feel like I should be fair and tell you some of the stories you will read about. That way you can brace yourself; at least somewhat. Let’s see there’s the time when “We Didn’t Start the Fire” by Billy Joel became my family’s theme song for me. Not to mention, the “beer bag” story. Oh and the one about how I told God I would never be stupid enough to love another man, and I was fine being single. Yeah, Cerebral Palsy is brain damage caused at birth I think that’s how my mind justified allowing me to go back on that one, the heart; that is a story all on its own! Feel ready? No? Oh well, here goes nothing…
*This forward is “just for fun,” it can be edited changed and rearranged at any time. And actual forward in books are much longer–this is a blog post. So all of you reading this, flipping out, quit it. “The heart of man plans his way, but the Lord establishes his steps” (Prov. 16:9). I am just having fun with the desires of my heart, but I know that God is the one the writes my story and I am wonderful with that.