My husband took this picture during our last ER trip to Lurie Children’s Hospital in Chicago. It took us exactly 2 hours and 2 minutes to arrive at the hotel that we stay at when we have to go to the hospital. It’s a mere two 3-4 blocks from the hospital. Our room was ready for us when we got there thanks to my parents calling ahead in what we weren’t sure would end up as an emergency.
This is what it looks like when your bucket is empty. When you have been here so many times before with different outcomes but the one thing remains the same, Adler has brain cancer. He has tumors that could grow. We never know when that will happen and it is a constant worry. I don’t feel like I will ever not worry about it. Also, Adler has hydrocephalus, so his shunt could malfunction which is a critical situation that needs immediate attention. And last but certainly not least, Adler has adrenal insufficiency which also if not maintained and treated properly during a situation like this, one of nausea and vomiting, could be critical as well. So, yea, I was empty at this point. We knew everything was stable and they attributed his symptoms to being a little irregular and with a shunt, that can’t happen because the spinal fluid that empties from the tube into his abdomen has no where to go if he’s backed up. So he needed to make some room. Or it could have been a virus that just took awhile to exit his system because he is immune suppressed. Which is good. But my God…..I was exhausted. And to see this made me realize that I truly am. I feel like I am used to it until I feel the after effects of a day like this. I feel hungover emotionally and sometimes it takes days to recover for me. I am amazed at how we made it through 15 months of treatment because I was in full caregiver mode ALL the time. I am not sure that’s changed too much now, just the hours are different.
In my mind I was screaming many fuck words and cursing the fact that he will always be battling something. We have been through the hell of treatment with him where I am sure we met the devil himself on one or two of those pain stricken and vomit infused nights. Doses and doses of morphine and changing fentynal patches on my son. It doesn’t just erase from your memory. It sticks. I know we are in a better place, a golden place but when you are bedside in the ER that you drove to 2 hours away so he could be in the right place just in case there really is something serious, your instantly flooded with the memories of how many times you have been there. The nurses know us and him. He doesn’t even get nervous about an IV now because he said he is used to it. He made himself sick with anxiety over a quick MRI which is only about 3 minutes because he said “I have so many bad memories of being here and being scared”. I wanted to cry with him but I couldn’t. I was sick to my stomach too because of the fear I have felt oh so many times before in that very room with him. The curtain closes and your heart races and my mouth is dry and my eyes fill with tears and my body shakes and it’s like I go into a trance like state of just get through it. I tell myself it’s ok over and over and over again in my head. I smile and try my best to keep him distracted. But this time HE had to face it. HE had to go willingly into that room and lay on the table that slides him into the MRI machine while they played Toy Story the movie for him and at that moment when they strapped him to that table and he looked up at the double mirror over his head to see the movie, I was overwhelmed with all of it. Those 3 minutes took everything I had to stand there with my ear plugs in because the machine is so loud and touch his sheet covered foot while he faced his fear head on and I was witness to it. All his guys and blankie tucked under the sheet with him and Woody and Buzz on the screen made me remember that he is only 7. He’s been dealing with this since he was 3 years old when the pain began. It hurts my heart. It broke my heart in fact. It was shattered like glass and I had to bend over walking bare foot on that glass and piece it all back together. Because we are not the same from this. Our family is so different because of this. I am stricken with severe anxiety with so many known and unknown triggers that my day to day is not always pleasant. I work through it and keep hope alive and look on the bright side but it is a very dark and lonely road we walk. Just us three holding hands down the cancer carved out highway of our reality where we can stop and window shop looking at the life we had and the life we want but ultimately we live the life we have and we make the best of every moment because to be honest we don’t know how long we have with him. There is no guarantee with any of us. But it’s different when you know there are 3 potentially life threatening illnesses that live and breathe within your son. I am not your normal mom.
I work with my therapist on all of this. I talk with my closest friends and hell, strangers in a Target shopping line about it because it sadly has become my life. I am a cancer mom. I am a hydro mom. I am an AI mom. I know the inside and out of my son’s nervous system because I have to. I know his medications, nurses and Dr.’s names and phone numbers. I know what to do if he needs a shot and who to call when I panic. He calls the paramedics his buddies and when we see a fire truck he waves because they may need to take him to the ER sometime.
I have been asked many times if I work in the medical field and I laugh and say no, I am a cancer mom. BUT, I have also found out who I really am through all of this. Sober, healthier in body and working on it in mind and one hell of a decent mom. Not perfect, but I am trying to keep up. Women are hard on themselves. So are men, but it’s different for us and for special needs moms. I appreciate time and friendship more. I see things in a totally different way than I used to. I feel different. I look different. I am different. There is no handbook for this. No how to guide or best selling books by some Parent Magazine affiliated author passed around over coffee while the kids play. Hell, we are just happy to drink something when it’s hot. Or eat our food when it’s hot. I often stand with my foot on the trash can eating a yogurt as fast as I can or slamming a peanut butter and honey toasted sandwich with a paper towel for a plate sitting on the couch while he used to sit on his heating pad for comfort. I have a love for anything with protein because it helps keep me full and those bars have been an ER snack or dinner many, many times. My back hurts all time from stress and I cry often and I laugh even more. I feel like I should. No need to keep it in when it wants to come out. I give no fucks about anything that doesn’t replenish our world and the only thing sugar coated around here is candy that we picked up in the check out line or left over from a movie that he actually made it though with out wanting to puke from the popcorn smell.
Our world is small but cozy and hopeful instead of doubt driven and supported by some wonderful people, real and cyber ones. Bold As Love is our theme song by the late Jimi Hendrix and it fits. Adler is the rainbow in the storm and I am the captain of this ship. Ahoy me matey!!
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Love you Elizabeth… Dad