One year ago today we were being admitted to Lurie Children’s Hospital of Chicago for the second time. We took Adler through the ER again for his debilitating PAIN. PAIN like I have never seen before except with him. He would suffer from agonizing episodes of PAIN that would make him scream and cry and beg me for it to stop. It could last 20 minutes to over an hour. It would leave him sweating and breathless. He compared it to lightning in his buttocks or like being punched over and over. I would hold him as he would squeeze my hands or my arms and the tears often flowed down my face along with his own. I would have done anything to take it away for him, anything. So, we took him again to the ER at Lurie on the advice of his team of doctors that would be waiting for us upon arrival. We had no idea we would be there for 15 full days. Those day included a couple different MRI’s, a biopsy that involved removing part of his spine in the lower lumbar area, getting the tissue sample and putting it back. They woke up the PAIN. They went right into where his PAIN comes from. And due to his hydrocephalus he had to lay flat on his back for 48 hours to make sure his CSF fluid (cerebral spinal fluid) didn’t leak and the area could heal properly. It was the worst night of PAIN I have ever seen him in. He had a tube down his throat during surgery so when he woke up from anesthesia and the PAIN began, he actually sounded like a pig squealing. It was a sound I will never forget. The 2 nurses were amazing. He was never with out one of them all night long giving him as much Morphine as was allowed and that would help ease his little body from suffering. Suffering, so much and for so long he suffered in PAIN. It was the one night I don’t believe I slept at all and held his hand over the bed rail even when he slept. Aaron actually almost passed out and couldn’t handle seeing him like that. Then the waiting…..the waiting for the results all the while they tried to manage his PAIN. We knew something was coming, something was going to happen. Day after day, night after night the storm brewed inside that room and inside of us. It was oddly foggy almost the entire time we were there. For 15 days we stared out the windows towards the lake talking about the boats. The gorgeous boats that lit up at night when I couldn’t sleep and gazed out from 19 floors up to the lake and wanted so bad to be on one of those boats instead of held up in that room waiting. We would walk with Adler when we could around the floor saying hi to all the nurses and chatting with other parents when we felt like talking. We found new places to grab food through out the day and evenings and thank goodness for my parents apartment literally 4 blocks from the hospital so we could go shower and take a moment for a release. I had it nailed down to less than 40 minutes there, showered and back because I couldn’t not be there. I had to be there, be with my son. The day was coming that we had dreaded. The day our lives capsized in the that storm. But not yet, now we just dealt with the PAIN and watched and waited with different but sadly familiar surroundings. Adler’s room filled with toys and bubbles and love but the light was dimming the longer we waited. We needed a lift in the fog that surrounded us. Would it ever come?? So today I try as hard as I can to not feel that fog roll into my mind but it’s not easy. I have been overcome with emotion since I woke up today. Even crying making him waffles because I was happy to be making them and sad that my son was in the hospital a year ago today for 15 days. It is our journey. Some have better, some have worse but this is ours and some days just fucking suck. I am strong and fierce but everyone has a soft or weak spot and yes my mind is a fantasy land of imaginary vacations and a mind trip away but its also the hallows eve of the mortality we face on a daily basis and on this day one year ago we began the journey that soon added another name to the puzzle that was and is our son Adler Bear Carris. Bold As Love played on our way there as did Peter Gabriel Don’t Give Up……so today I am reminded to be Bold and to Not Give Up, but its ok to be human and to give into your emotions when they need to be surrendered to.
Shelter from the storm