I can’t look…

I will never forget that moment. Anthony was being prepped for surgery and Doctor DiLuna came in to talk to us one last time to make sure we understood everything that was about to happen. He had someone alongside him who was pushing a computer. He asked if we wanted to see the imaging of the tumor. I instantly felt nauseous and angry. ABSOLUTELY NOT! I did NOT want to see this demon that was inside my son’s head and causing my family to be in this situation at this current time. So NO! I do NOT want to see the tumor. But Rob did. It’s the strength he carries when it comes to the medical situations that I wish so badly I could have…especially for Anthony.
I understand why Rob wanted to see, but I couldn’t. At least I couldn’t see while it was still in his head. Because my thoughts instantly went to what if this thing I’m about to look at is about to kill my son. For that reason alone, I just couldn’t do it. As Doctor DiLuna walked away, a million emotions ran through my head. I looked at Rob and said do you think I should have looked at it. He simply shook his head and said not if you don’t feel you want to. And there is was. The mix of emotions we had dealt with on this journey that left me feeling so troubled. I want to but I don’t want to. I should but I can’t. I need to but I’m scared.
Nine long hours later, Anthony emerged from the surgical unit with a swollen face and head. Although his head looked so much larger than the last time I saw my son, it was so much lighter without this tumor. The size of a small orange. For a little man like our Anthony, that’s a big pill to swallow. My son was living with a tumor that was the size of an orange. It was causing him incredible headaches. He was such a happy baby but in loud environments he cried so hard he would hold his breath. He vomited for days before doctors could diagnose him and even then they were WRONG.
It wasn’t until the veins were bulging in his forehead and his eyes went crossed from the pressure that we were able to figure out there was a real problem. And there he was. My precious little smiling son now crying with needles hanging from his little arms and an incision in the top of his head that would drain the excess spinal fluid. The crying would stop only because a ventilator would breath for him while he was fully sedated to undergo a more intense MRI and see the problem that we would fix the following day. My dad, the strongest man I have ever known, could barely stand at the sight of him. My stepchildren weeped at his bedside, I’m sure thinking they were coming to say goodbye to their brother. My mother standing strong as she always does…the rock in my madness. Rob’s cousins and aunts running to our side to hold me up and encourage me to keep it together. When I say this whole experience took an Army, it’s not an exaggeration.
So you wonder why this month of May is so important to me…why brain tumor awareness means so much. Despite popular belief, from a past filled with people who will never understand, it is not about standing on a soap box and feeling sorry for us. The strangest part of all of this is that I don’t feel sorry for any of us…not even my son. I feel strong because of this. I feel like this journey has brought us all so much closer, surrounded our son with so much love, filled our lives with incredible people, and humbled us beyond belief. But I do go back to that time. The time where the doctor looked in our eyes and said ten years ago there was no cure for your son’s illness. The time where the doctor looked in our eyes and said five years ago we had a cure but it still had its kinks. And when he looked in our eyes and said now we can do this surgery pretty successfully, however, your son’s tumor is resting against an artery. We need to cut off the blood supply to that artery for me to be able to remove the tumor. It really is a 50/50 shot.
Rob and I fought at that moment. We fought about who would sign the paper that would allow that surgery. We worried that the burden of responsibility should something go wrong would fall on that person who put the pen to the paper. I signed. He signed the paper for the tumor resection. It was a 50/50 deal from his parents. Anthony had a 50/50 shot and we all made it. Thank GOD!
So to the people who love me. To the people who love my husband. To the people who love my son. This month is so important to us. Without raising awareness, I would have lost my precious son that Rob and I worked so hard to bring into this world. As he gets older he makes me more and more aware of how blessed I am to have him. I have, since that day, looked at the image of his tumor. I’m not going to lie about it and act like I’m this incredibly strong woman. The first time I saw it…I couldn’t breath. It took my breath away. But now I look at this image with appreciation. I’m sure it sounds crazy to you. But I appreciate our struggle. Through it, I have found my greatest heroes, I have accomplished things I never thought I could, I have learned so much about love and life, and I have formed myself into a strong and loving woman.

My son was fighting for his life. I didn’t think he would make it. I couldn’t look at his tumor, but that tumor became the image at the front line of our battle. I know you might feel I’m on a soap box for my son’s illness, but what you will never understand is that it is far beyond that and far beyond your small minded way of thinking. I will continually work to find a cure for pediatric brain tumors. I will do this similar to the way that other have done before me that allowed my son to be alive. I have seen way to many precious souls die because of this terrible disease. I won’t take our journey lightly, Anthony WILL make a difference in the life of other brain tumor fighters.

And for those below us who like to justify our greatness as being on a soap box, I will tell you this. Soap box or not, we are making a difference. Spend as much time making an effort as you do talking shit and you will see how wonderful this world can be. God Bless!

 

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