I didnt realize how much stress had left my body in the few days that we have been home until I spent two hours at Corrigan's pediatrician's office today. To see the fear in his doctors eyes and his nervous mannerisms when he walked into the room reminded me that what we are dealing with is very scary. Before his doctor walked into the room…Connor and I were laughing and joking and making up silly sound/songs to entertain the baby and everything felt so normal. Seconds after beginning to talk to the doctor I felt my stomach clench again, the way it had for weeks at Hopkins, and I felt the metallic taste of fear rise in my throat.
Corrigan's head genetics physician says that to fully grasp the situation she needs to instill fear into everyone that has to deal with his disorder. She uses fear to encourage people to pay attention to the details and her conversation with Cor's pediatrician must have been a doozy. He is a kindhearted man that has never dealt with this kind of kid before and I found myself educating him on the protocols and procedures…the disorder information…and found it odd that I was the most unruffled person in the room. When I realized how calm I was… my mind remembered that the fear was there… buried beneath my homecoming joy and it reared its ugly head.
I was unable to eat much at dinner this evening and I can hardly stand up straight from the stomach clenching but I am trying to find peace in my baby again. I didnt realize that I would have to go through this everytime I visit a new doctor, every weekly checkup at Hopkins, every visit with a case worker, everytime I take him out and someone sneezes. I didnt realize that finding peace would be repeated day after day.
I wonder when the time will come that the smell of rubbing alcohol wont make me think about the dozens of blood take from little Corrigan…or when the sound of the Medevac helicopter doesnt make me want to fall to my knees and weep.
Tonight, Mark slipped out to grab some fast food because I was too drained, mentally, to fathom making dinner and he brought me home a soda mix that I drank every night, at midnight, while at Hopkins. When Cor was in the ICU we were allowed to both be in the room until 11PM. After that one of us could stay but only one. I think that this was to encourage parents to get some rest not to be cruel but because JHU is located in a very rough part of Baltimore there was no way that either of us wanted to separate and walk home, alone, at that late hour. So, nightly, we managed to sneak a few extra minutes past 11pm with the baby..doing nothing ( he was still very hooked to machines and a ventilator) but sitting by his bassinet and stroking his forehead with our fingertips…and trying to be very inconspicuous so that the nurses would not realize we were there past two-person visiting hours. Sometimes we got away with almost midnight but more often than not we only managed to get away with it until 11:30 ish.
Then, we would wearily find our way down to the first floor and realize that we hadnt eaten a single bit of food since a vending machine lunch earlier and would have to grab a greasy something-or-other from the hospital 24-hour burger stand. While the food was good neither of us ever managed to eat very much and that was prob. a good thing considering the amount of heart-exploding fat dripping from those burgers! I did find some sort of strange comfort in mixing Sierra Mist with Fruit Punch though . Which is very odd because I dont much care for carbonated drinks but my options were limited so I would mix this every night and drink it on the walk up to the Childrens House.
Tonight, Mark went to Arby's and they had both Sierra Mist and Fruit Punch so he mixed me a cupfull and brought it home. Little did he know that one simple sip would bring me to tears. That the combination that brought me such strange comfort for weeks would now make me remember it all so vividly when I was trying so hard to forget.
I look forward to next week when things settle down a bit. When every other day isnt another meeting, call or visit someplace medical and potentially full of germs. When I can buckle down with my family and find a way to make that peacefulness last several days in a row. When my stomach can unclench until the next scheduled appointment arrives. All I can do is look forward.