This was us a year or so ago…..in survival mode. Adler didn’t get to take chemo this day because his counts were too low. He was accessed and labs drawn and the doc came in with the news of the delay and checked him over. Our friend Angie came to take our family pictures in the hospital. Yea, in the fucking hospital. But that was what we did. That was our life. Every week for over 15 months. This was mid chemo. He was also still suffering in severe pain on a daily basis that required heavy narcotics to control. You can see by the picture that he had a lot of trouble walking.
We don’t look the same these days. We all look better. Healthier and stronger. My clothes, my hair, my me…..is different. Adler is “better”. He has hair, glasses now and has gained weight and is pain free pretty much and has lost some teeth! Even Aaron looks different.
We were all in survival mode. You give up your life for the life of your child. Your satisfaction lies in the eyes of his own when he is comfortable. You give every single ounce of yourself to him. Your body, mind and spirit are trapped in a world of grief because of your child’s diagnosis. You try so hard to not let it take you over but many nights and days it’s the only thing that keeps you going. The fight keeps you alive but just barely. You are merely existing day to day. Moment to moment. Joys are few and far between and life isn’t at all what it was or what you had hoped for. You come to grips with it in time once you become fully numb to it all. Your heart breaks over and over again for your child. You hold them, keep them close and safe and yet it still came for him. The PAIN, the cancer, the water on his brain that almost drown him and the glands that stopped working that must work for him to survive. Blame isn’t necessary because it is what it is. Hope is the light that guides you in the dark but dims from time to time.
Survival mode. It’s more than just two words put together. It became a ritual every week and every 3 months as we would travel to Chicago for scans. Sunshine and rain and snow never mattered from the inside of a hospital room. It all began to look and feel the same. Hot or cold, warm or cool, loud or soft……just simple adjectives used to describe something that didn’t matter anymore. The only thing that mattered was Adler and his life and what would become of it. My tears shed for him often alone when I could. Never fully breaking because of the fear that I would be much like Humpty Dumpty and never be put back together again. But pieces of me did shatter and are put back together now. They just fit differently. I walked a line between hell and heaven and never decided to get off track either way. Just stay the course and keep looking for dry land after each storm at sea.
Alice went down the rabbit hole and came out the other side in wonderland upside down…..I know the feeling. But our life never turned right side up. So, you just have to flip over somehow. We used the word “capsized” as to our feelings of how we felt about all of this shit we had to go through. Our life, our little life here in the corner of the Midwestern world was capsized by illness and pain. You can live upside down. You can. We did. In survival mode. It’s much like a video game where you pick your characters actions but we didn’t get to pick them, someone chose for us and we just reacted. I never thought in a million years I would know so much about the human body and it’s needs like I do now. Adler’s body and what it requires is my job. I am a life engineer now. So much has changed but stayed the same all while he kept us going. His smile, his fight, his strength, his hope, his desire and will to live, that all was the fuel of our fire lit by love. Just keep going.
I see this family in this picture and know them and feel their anger and frustration and I can see that divine right to become more than just a statistic. More than just a number or a loss or gain. But to become more in this world is what Adler is. And with a new and stable outlook on things we trudge on. The depression and morbid world of the unknown in ones psyche is terrifying and real but it is in fact reality and you must face it, handle it and move on. Even if its at a snails pace or that of a cheetah. It all depends on the day. And fear is ok to feel just like sadness and remember happiness…..yea, that one’s a good one to keep around! Seeking out joy in the little things became a habit and appreciation became routine as well. The sun will shine even in that world that was upside down.
I know not how long this journey will last or how well we will endure but I know that Adler is one badass little warrior and his might is bigger than these words and emotions I type. I sigh with relief that this battle of the war is over for now and though we still have victories to attain I hope that I can rest easier now and survival mode can take a break for awhile. Just breathe and rejuvenate and replenish and ready and steady ourselves for all the good and the bad that may be in the future. May time grant us more strength and light to succeed against the monsters that live within him and may we grow older and wiser along the way and maybe even stop to enjoy the scenery.