Besides my husband, who couldn’t miss me balled up on the floor next to our son’s crib every night as my gut kept telling me that something was wrong, no one knew the struggle that started from the minute I first laid eyes on our sweet little boy. And, as we spent many days and nights staring at each other from opposite sides of a hospital bed that was way too big for this tiny human being between us, that same gut feeling gave us the chance to learn a few things that neither of us could imagine would be part of our parenting experience.
1.) It isn’t easy.
It is definitely not easy. In fact, it is pretty damn hard. It is so hard that it will take your breath away, knock you right on your butt, and leave you wanting to curl up in a ball in the corner of this cold, sterile room. And, unfortunately, things don’t get easier as time goes by.
2.) How others view you is the complete opposite of how you view yourself.
I can’t tell you how many times people have said to me “I don’t know how you do it,” “you are so strong,” or “I couldn’t imagine being in your shoes.” While everyone around me tells me how strong I am, most days I feel like there isn’t a muscle in my body that works anymore. I question myself constantly. A simple decision quickly turns into this ongoing battle in my mind that leaves me physically exhausted. I always feel like I am choosing the wrong path. When we end up in the hospital again, I try to think back to which of MY decisions has landed us there. I feel like the shaky fate of this amazing little human being is lying completely in my hands and I’m waiting to turn the corner where I fail miserably and am the reason everything falls apart. I look in the mirror and I see the complete opposite of the strength that everyone claims to see in me. I look at my son and wish I could be so much more for him, that I could have all the answers he needs, that I could take all the pain and suffering away. But, I can’t.
3.) It is painfully exhausting.
Sometimes I think the degree of tired I feel is close to what it must feel like to be ready to die. My entire body shakes from the inside-out. My heart races. My limbs ache. My chest feels heavy. I tell myself every night that tonight will be the night I sleep, but it never works that way. Usually the nights I seriously consider sleep are the nights that go wrong. I make a pot of coffee at 11:00pm and hop into bed to begin the real work of trying to stay awake to make sure that Anthony is safe. Sometimes, as the sun rises, I sneak an hour or two of sleep. Something about the light of day makes me feel safe. Makes me feel that I can rest my head momentarily. Only a few people know exactly how tired I am. One of them being Anthony’s Grandpa Bob, because, for some reason, on my worst days, when I hear his voice, I can’t help but break down crying and say “I’m just soooooooo tired.” He’s just that person for me. The other person being my husband. But we wouldn’t dare have a conversation involving that topic. The last person you want to complain to is the one who actually does understand what you are going through. You never want to be the one who brings up those fighting words…the ones that compare who lacks more of the thing that is keeping you from your sanity. In our case, the one who got less sleep.
4.) The day can change in an instant.
There have been many days where I called my Mom with excitement for the day ahead, only to be knocked down from a sudden episode that left us at the mercy of the medical world. I can hang up the phone one minute on top of the world, and call my Mom the next minute in a complete panic amidst some chaotic emergency. Life changes that quickly for us. And the uncertainty of our son’s condition is probably the hardest part of what we’ve been through.
5.) You won’t feel sorry for yourselves.
Although I would love to be able to take this all away from him, this journey has been a blessing to us in many ways. And, while people say, I feel so sorry for you guys, I feel so sorry for Anthony…strange as it sounds, we don’t. Through this, we have met some amazing people. People whose paths we would never have crossed had we not been forced to be here. People who have carried us on our bad days and celebrated with us on our good ones. Our people. Our family. Our tribe. So, considering the circumstances, we are pretty lucky. And, one thing about this journey is, you are forced to be part of a community where, when you think you have it bad, you are humbled by meeting someone who has it much worse than you do. And, the beauty of it is that, those who have it the hardest are out there inspiring everyone else to keep fighting. Many of the world’s bravest heroes haven’t even cut their first tooth, and we’ve been blessed to meet them.
6.) You can smile, even though you are crying inside.
Just because I have a smile on my face, doesn’t mean it is real. I have become very good at putting a smile on my face during a difficult battle. Truth is, you learn to be positive for your child. You learn to smile, even when the thought of it makes you want to vomit. And, faking a smile often leads to laughing at the most awkward and inappropriate times. I can’t tell you how many nights my husband and I looked at each other in the darkness of a somber room in the Pediatric Intensive Care Unit and burst out into a fit of laughter. I remember saying, “What is wrong with us?! We’re so weird!” But eventually, our laughing fits were joined by a little boy who was way too happy for someone who just had brain surgery or who minutes earlier was completely unconscious, and it strangely makes sense that we can laugh.
7.) You will realize you missed your calling as a medical professional.
Funny thing is, before this happened, I couldn’t even walk into a hospital room without feeling faint. Now, I hold my son’s hand and watch nurses slide IV needles into his veins while him and I talk about what’s happening as if it is normal procedure for every two-year-old. I talk test results, medications, medical conditions, side effects, symptoms, and evaluations like a doctor whose been practicing for years. Sometimes, I have to correct the doctors we are seeing, knowing they are wrong. I administer medication several times a day. I have been covered in blood, sweat, tears, and even Cerebral Spinal Fluid. I have acted as a chemist on a team dedicated to come up with a concoction for curing the world’s worst diaper rash. And we probably should have set up a patent for it. I am an expert when it comes to pediatric brain tumors and everything that has gone along with the experience. Knowledge has been our key for survival, and I’m hell bent on watching this kid beat it all.
8.) What you need most is people to be there for you.
So many family members and friends call to beg that we let them do something for us. So many of our people apologize that they can’t do more. Truth is, just being there is what we need the most. While the delicious cups of coffee, hot meals, cold drinks, and warm blankets help to revive us when we are hitting rock bottom, it is the prayers, the texts, the calls, the visits, that really charge us. And if we don’t answer when you reach out, please know that just hearing from you really did make a difference in our day. Sometimes we are just too emotional or exhausted to even think about picking up the phone.
9.) You wouldn’t want to change it for anything.
Yes, life with a chronically ill child can be tough. It can be debilitating, overwhelming, frustrating, and painful. But, more than anything, it has opened our eyes to a lesson that most parents are not fortunate enough to learn. The beauty of each setback that we overcome, each milestone we never thought we would see, each comeback that we prayed for, is something I’m sure can only come from knowing the darkness we have faced. As I think of the moment they rolled him by us, lifeless, a machine breathing for him, not knowing if I would ever see our smiling little man again, I’m immediately drawn to the excitement of our reunion. Standing by the door of the family waiting room. Hearing the rush of nurses and doctors wheeling him down the hall. Catching that first glimpse of my tumor-free, strong, little warrior. A baby whose will to fight is something of an imaginary super hero whose magical powers give him an advantage over the average human being. That first glimpse carried with it a pride that I assume will go down in history as the best feeling I will have in my lifetime. For that tiny moment in time, that split second when he rushed by, that fleeting glimpse of the answer to my prayers, that miracle moment- brought me to realize this. There is no journey I would rather have. I wouldn’t change this for the world.
So, while it took some time to get used to looking at the scars, that would remind us of our moments of intense fear, I truly understand what they mean when they say your scars tell a story. They talk about why we should appreciate life a little more, complain a little less, be kind to each other, and be grateful for what we have. They give meaning to the saying “it took a village,” or in this case an army, as we’ve realized that Anthony’s Army is comprised of many different hands that each have a unique role in helping to raise our son into an amazing human being. Most importantly, for us, his scars tell the story of a baby boy who, with the odds stacked against him, went on to teach those around him the power of love, hope, and faith that comes when you believe. And the greatness that becomes possible when we can all work together.