A year ago today!


We are coming up on a almost a year post hydrocephalus diagnosis and that creates so many feelings inside me. He is asleep next to me as he does most mornings after he crawls into bed with me after he goes to the bathroom. But see, I can remember a time when he was physically unable to do that. It hurts my heart and saddens me to no end to know just how much he has suffered. The pain that my son, the son I made, the son I wasn’t supposed to have due to my own heart problems, the son I fed all organic foods to in hopes he wouldn’t be sickly, the son I was deemed a “helicopter mom” over still got sick. He still got fucking cancer. I type this with tears streaming down my face as I remember how hard it was to see him in agony. To hold him as he screamed and as his body would shudder in pain. He got to the point his head would hurt so bad that he would vomit and faint. And the steroids were supposed to be helping his pain from the misdiagnosed arachnoiditis which at that time that’s what we were told by a neurologist at Riley Children’s Hospital that he had that. I became an expert on it and had a gut feeling that he didn’t have it and that there was more to his declining condition. He had horrible, debilitating pain in his buttocks. It came on about every three hours as soon as the tylenol or motrin wore off even on high doses of steroids. He would cling to me sweating and crying begging me to make it stop.  He gained so much weight from all the steroids he was on. So he looked like a fat little boy. Cause he was. He ate all the time. And the last couple of weeks before we ended up taking him to Lurie Children’s Hospital in Chicago he was so dizzy he was refusing to walk. We thought he was dying. In fact his primary care doc said his pain would consume him if we didn’t get him to a neurologist as soon as we could. So we packed and headed to Lurie the next morning!!  He screamed in pain the entire way!  That was an awful 2 hour ride!! We spent about 5 hours in the ER where we wheeled him in his red wheel chair in because he couldn’t walk. I told his story to a dozen docs and during that time they places and IV and coldgiven  him morphine. We were scared to death. They decided on a full brain and spine MRI that would take about 2.5 hours. My mom couldn’t take anymore so she went to their apartment down the street. Oddly, my parents rented a get away place a couple months prior to all this happening. Who knew we’d need it for what was to come. So Aaron, my husband, and I waited in the cold brightly lit waiting room that housed lots of empty chair since it was about 9pm.  The TV was on with cartoons and there was no receptionist to greet us. We were all alone. And we felt it. Aaron left to run and get us some food since we hadn’t eaten all day and I was left alone with my thoughts. Thoughts filled with fear. Pure and honest fear. What would they find? Was Adler going to be OK?  And I knew he wasn’t. I knew it. Aaron returned with sandwiches and I ate my ham and cheese sandwich with a ginger ale from the sweet nurse that took us to the waiting room. We were then told he was going to be admired and we had a room on the 19th floor. That is the neurology floor. We went up to the room. I took a mental inventory of the room and we tried to rest. Soon the MRI was over, my mom was back and Adler was with us. They said the docs would be in soon to talk to us. At about 11:30 pm they docs rustled around outside our door and I braced myself. Adler was crying in pain in his bed and we were told he couldn’t have anymore pain meds and we were like oh great here we go again with bullshit docs that won’t help us yet again. Little did we know it was because he needed brain surgery. So I waited by the door and here the doc say “here we go” as she enters. That’s so not good!!!!  The MRI was brought up on a screen and I held onto Aaron as to not pass out as they showed us all the water on his brain and the tumors on his brain and spinal column. He had three times the normal amount of water on his brain, which is a lot, a deadly amount. His brain was absorbing it. So he would need a permanent shunt placed to drain the excess water to his abdominal area through a tube just under the skin. They didn’t discuss the tumors yet as they were not the main concern. I looked at the doc and said to her “so basically he’s fucked?” And the tears welled in my eyes. My breath was leaving my lungs and I felt dizzy. She said no and patted my arm. I was so angry so scared. How could all the doctors before have missed this? How was this happening? Why?  Why our son?

So at 3am I signed consent for surgery forms and at 6 am they were washing his hair with special shampoo and preping him for surgery by 8am. It was an emergency. We met his neurosurgeon that morning and went over the MRIs again and that’s when we were told he needed a lumbar puncture as well and we were religiously told don’t invade the spine if you have arachnoiditis……the doc said he did not have arachnoiditis. We looked at each other and I started to cry. He didn’t have it. I was crying sad and happy tears as arachnoiditis is a horrible debilitating disease. Again, little did we know cancer was on the horizon. But how did they misdianose him?  What the hell?  We were just so emotionally and physically drained by this point and we had some real answers. So that morning we handed over the life of our child to Dr. DiPatri and I trusted him. I did. And we met the best nurse ever, Krystal!!!  It was just the beginning, just the beginning but we were at the right place to start, finally.

There isn’t a day that goes by that I don’t think of how far we have come and how far we still have to go. God bless my family and friends that cater to my emotional needs and to my therapist who has begun to help me heal and find healthy ways to expel my feelings. I will be one month sober Monday and that’s a big deal!!!  Just a healthy choice made to help this journey go more smoothly. And to those that this reaches in some way may it help somehow.


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