It Didn't Happen to Me
Photo by Julie Verlinden
Why? Why me?
Usually when we encounter any bit of negativity in our lives, we wonder why. Why did this happen to me? What did I do to deserve this? The questions flood our minds as we try to rationalize these unfortunate events. We're stuck on cause and effect. If a + b = c, and a represents me, and b represents a bad decision from 10 years ago, then c must be the current negative situation in my life.
Luckily, I had a teacher in high school who required us to read a book called "When Bad Things Happen to Good People." The book has resonated with me my whole life. I don't look for answers. I don't try to understand everything. I truly believe that at the end of the day, shit... just... happens. It happens to everyone. I didn't have a baby prematurely because I passed out drunk a few times in college. My son doesn't have developmental delays because my husband brought a switchblade for show and tell to a Sock Hop when he was twelve -- among other unfortunate scenarios for my mother-in-law and father-in-law.
I don't ask, "why me?", because I don't believe that this happened to me. I'm not the one whose chromosomes didn't form correctly, who was born with kidneys so enlarged they didn't allow my lungs to expand and contract, who requires a plastic tube in my belly to receive life sustaining nutrition, who has had surgery after surgery to ensure survival and development. My son is the one who has to experience all of this. I am merely a vehicle to ensure his happiness, to make sure he gets the most out of this precious life. This did not happen to me, it happened to him.
I could spend hours upon hours trying to figure out why. Why is he missing almost 60 genes? Why does he have a hole in his heart? Why do developmental milestones keep passing us by? Why doesn't he show signs of hunger? Why won't he take more than an ounce of milk by mouth? Why? Why? Why?! I simply don't have time for it. I also don't feel the urge to understand. My job is to be there -- and I can't "be there" if I'm too busy trying to figure out "what I did to deserve this?" Hell, even the doctors can't tell me why. Shit happens. Period. My precious time on this earth with my son is better spent just loving the shapoopy out of him, advocating for him, and snuggling him to pieces. He needs it, he has a long road ahead of him, and a lot of life to live.
It is simply my job to do what I must to keep my chronically ill child as healthy and happy as possible, and that does not require understanding why. It requires paying close attention to understand his "language". It requires anticipating his hunger since he can't tell me when he is hungry. It means noticing when he's making gestures to call for me. It requires giving him his medicine in the morning and at night. It requires coordinating doctors appointments, requesting medical records, and practicing his therapies at home. It requires signing a lot of paper work. It requires spending the night in hospital cots. It requires learning medical lingo. It requires a lot of explaining and repeating myself to medical professionals, family, friends, and strangers. Mostly, it requires a lot of love -- unconditional, ever growing, I-could-squeeze-the-boogers-out-of-you kind of love. A love that says, I will never have an answer for you as to why you have to endure this amount of poking, pricking, and pain, but I will always care for you and love you to the best of my ability, and hopefully that will be enough. Hopefully, that love will linger every time I have to hand you off to a surgeon and leave you all alone in a sterile room full of masked strangers. Hopefully, that love will embrace you when you are out cold with anesthesia while doctors, nurses, surgeons, and techs do their very best to give you a better life. Hopefully, that love will assist in healing you, even if you're left with some nasty scars.
My precious son, there is no reason why this happened to you. You are unique, you are special, you are perfect. You have had to endure more pain and more obstacles than others experience in a lifetime. You will be better for it. You will be more understanding, more empathetic, more open minded. You will love more deeply and see the world more clearly. You have touched the lives of more people than you will ever know, and you are so, so loved. Know that life is short, life is fleeting, and sometimes, it is better spent enjoyed than understood.