Look at this picture. Do you see what I see? A lone ship on the ocean sailing in calm waters headed right into a storm. Do you think the crew aboard that ship are scared? I am sure they are. Are they fearing for their lives? Terrified that they will perish in that storm….perhaps?
When we left that small office with the florescent lights, small table with 5 chairs around it and the Kleenex box on that table and we had just been hit with our son’s cancer diagnosis, I was scared. I was scared that he would die. I felt like this picture. Calm, steady and headed right for that storm. We had no choice. It was our direction. Laid out on a piece of paper that took 45 minutes to discuss and I still have that paper. I look at it every now and then. But what I really look at is Adler. My son. Our son. My parent’s grandson. My in laws grandson. My brothers nephew and my 3 brother in laws and their beautiful wives nephew. My cousins cousin and the friends who look upon him like their own possible child. It has effected us all in some way but today something happened. And as his mother it was astonishing to me.
Something hit me like a truck. Reality. It hit me like a full on gut punch, an upper cut to the jaw and it was like a slow motion knock out on my way down as the words came out of his mouth for the first time ever.
He came into my bathroom unexpected after I had put him down for a nap and decided I could take a shower. I turned the water on and got undressed and just before I stepped in, he popped in with his little blue dog in hand and looked at me and I asked “are you ok?” He said “fine” but he didn’t look ok. I asked again and he said “I think I need to puke”. So I pulled him in closer to me and said “lets get to the toilet”. I am so used to it that I could do it completely naked and not think a thing of it. His mouth watered and he leaned over and wretched and then it came. He got sick. He said “woooo, I feel better. Where did that come from?” I felt his head, cheeks and asked if he had a headache or was dizzy. I run the gamut of what if’s and he didn’t feel warm and had no other symptoms. He wanted to lay back down so we walked back to his room and I proceeded to lay him back down. He said “oh no”……I grabbed the new puke bucket. A Pokémon one and we headed back down the hall. He got sick again. I looked through the puke to make sure his meds weren’t in it just in case. Those have to stay down with his adrenal insufficiency. Looked fine. He said he was tired and wanted to try to lay down again. We walked back to his room and I said, “I will sit with you for a bit” And then it happened. I wasn’t ready. I didn’t know it was coming. It hit me like blow to the heart. Electric shock simply from these 5 words…….
“Am I going to die?” Holy shit. I said “No honey, not at all, why would ask that?” He responded with a shoulder shrug and full on fear in his eyes. They lit up like his tumors on the MRI. I could see the legit fear on his face. My eyes welled with tears. I couldn’t help it. I asked “are you afraid you are going to die?” He said “yes, I am.” WOW. He never ever once showed fear during his treatment and even during his agonizing episodes of pain where he would beg me to make it stop. No fear though. Even a couple dark days as we call them during chemo when he would get really down and “want his old self back” and I would say “you are gonna beat this and live a long happy wonderful life” and he always smiled and agreed. And he even said he wasn’t afraid of death. He told me that. But today, he let me behind the curtain and I saw and heard and felt that he was and is afraid. I addressed it. We talked about it. Just me and him in his room him laying on his bed and me sitting on his step to his bed holding his hand and reassuring him that he’s doing great. His pain is gone, his treatment is done and who knows maybe we will be lucky and he won’t ever need it again. I tried to be age appropriate and calm and collected and not give into the shear anger and disgust and devastation I felt at that moment when my 6 year old son with cancer asks me “Am I going to die” AND then admits he is afraid he will. And I know little kiddos don’t like throwing up and it’s a scary thing to them so I acknowledged that part too and he agreed that it was scary to puke. But again, he’s an old pro at puking…..sadly.
So why today? Why now? When he’s doing so well. He’s thriving and feeling good and having fun, going to school full time and treatment is done. His port’s coming out and I reminded him of that and he seemed excited and I told him that his MRI will show good results and no new growth, I just know it. And we did something we haven’t done in a long time. Something I haven’t been able to do in awhile. We prayed. I prayed for calmness, peace of mind for Adler’s fears and to comfort him in his time of need. He said Amen with me. I looked at that face with his hands clinched in prayer and he looked like an angel laying there. He said he was tired and I said he should sleep. And I kept telling him I loved him so much and how strong he was and how brave and what bright light he is in this life and that his time isn’t done yet here. Not yet. No need to be afraid of death. Not now, not today. And goddamn it not ever. I will not outlive my child damn it. And I will not let him live in fear. I have enough of that for both of us. He ended up not sleeping and wanted to get up and is doing just fine now. Silly and spunky and seems “fine”.
As a parent of a child with life threatening illnesses…..yes he has more than just cancer…..you teeter on that brink of life and death. You look at the other side, that dark side, you give it a nod and let it know you know it’s there but you don’t dare let yourself dwell on it. It’s a part of all of this. Death, dying, it is a part of it. You accept it how you want and you move the fuck on from that. I cannot let myself go there. I just can’t. I know it’s there and that’s all I need to know. I see it daily on my Facebook newsfeed. Children I follow pass away and I send my comment and I hope and hope and hope that I never have to make that post.
It is literally one day at time with cancer. It’s not just for sobriety, though I could use a cocktail. Don’t worry, I won’t. BUT, it’s the same principal. I was taken of guard today by today. It hurt. It still hurts. I cried and cried for a couple minutes about it. And felt what I needed to feel and then wiped my tears, and blew my nose after I called my mom and took a quick shower and here I am, eating a protein bar and drinking a water after I took half a Xanax to calm my totally electrified nerves and looking at my son sitting on his heating pad because vomiting hurts his butt playing his Ipad having some pretzels after I have taken his temp 4 times in the last 2 hours and hoping he keeps those pretzels in. Its snowing so hubby is working and that’s fine. This was something I needed to handle alone I think. Sometimes it really is better that way. Real talk, he wouldn’t have taken it as hard, and if he did…..he wouldn’t have shown it right away. It’s not his style. I feel my feelings when they come. It’s a blessing and a curse. We both handle it in our own way and find a common ground about most things. (That’s an entirely different blog!!)
So there it is. Fear. I looked it in the eye, the eye of HIS storm.
We have been capsized and thrown about the ocean of emotions only to come out topside, gasping for air and relishing in its coolness inside of our lungs. The rain beating on our skin hurting and stinging with the reality of our situation. But as time went on you become numb to it and it doesn’t hurt like it did. Until something like this happens and then you are hit with it again. Or hit with it in a new way and you must face it. You swallow it down, no matter how bitter it tastes. Fear of that impeding storm that will never cease to be there. The thunder always echoing in the distance and the lightning ready to strike at any moment. You can even smell the rain. And today that storm hit in the form of fear. Fear of death. His own death. Damn. I didn’t even pack an umbrella for this.