it was after 1:00am when i first stepped into the NICU to see jillian. i had left sharon back in her room. she had finally fallen asleep with the aid of some good drugs. i was envious. my eyes were red and puffy and my head was pounding. none of this seemed real...i felt like i was walking and talking, but it was actually all a nightmare that i'd wake from at any moment. when i walked into the NICU there were a group of nurses, residents and medical students standing around jillian's bed. one of them saw me and then suddenly they all turned and watched me walk in. i know why they were looking...i had that look. the look of a man that had just lost a child. it's distinctive. sharon and i learned to recognize it on the faces of other parents that we would get to know in the coming months. i had it...and they saw it. i was beginning to feel self-conscious but in the middle of that hazy, vulnerable state i saw on that table the most beautiful, fragile little girl i had ever seen. she looked just like us...all 2lb. 8oz. of her. she was a sossaman! and all of a sudden, my sadness turned to joy as i met my jillie-bean for the first time. as i stood there holding her hand and talking to her i realized that i was crying. vicky was one of the medical students that had been assigned to jillian's case. as we stood there together staring out my littlest girl, vicky rubbed small circles on my back and asked, "are you ok?"...tears slipped down from my cheek as i replied "no". we stood there for awhile...just vicky, jillian and i as i swam back and forth between the deep and shallow end of a pool of emotion.
i finally walked back to our room and over the next few hours nurses came in every hour or so to check on sharon to make sure she was doing alright. around 3am one of them looked over at me and asked if i had slept yet. with my eyes locked towards the window as i stared at the lights from the city i responded, "no". she came around the bed in front of my little chair and told me that i should sleep. i remember being caught off guard by her demand, but i didn't argue. i just stood up and she helped me unfold the little chair where i had been melting into a small single wide bed. she got me a pillow and some blankets and walked out.
i slept. passed out actually...partly from exhaustion i think, but mostly because i longed to be someplace else. away from that place. out of that moment. rid of the memory of what we had just lived through. i was angry and i felt empty. i remember the next morning i told sharon how i felt as i cried silent tears. she reached her hand over and grabbed mine and we sat there silent.
over the last few days in the hospital i had been sending text updates to our family and friends about what was going on. we're lucky to have too many people that love us for me to have called each one of them every time something new was happening, so texts became much more efficient. i had written a text late the night anne died telling everyone what had happened. now, in the light of day, i was scared that somehow through the convenience of technology that our big kids at home would some how hear about their sister's death from someone other then us. it was still early, but i called our dear friends kimmi and her mom eva who had been staying with our big ones and asked if they could bring them to the hospital.
sometime around mid day my phone buzzed with a text saying that kimmi, eva and the kids were at the hospital. i remember being so excited to see them. it had been almost a week since we went in the hospital...and i've got to tell you...as i walked towards the little waiting room at the end of the hall on the 15th floor and saw the backs of my girls as they stared out the window down to the street and brady sitting next to them in his trademark indy hat, i cried. in a split second i felt grateful and happy and full again...my soul needed that.
when anne died, we got "the death kit". they didn't call it that...but that's what it seemed like. it was a little box that had pamphlets and flyers and business cards for all the people and services that UCSF offered as help or comfort families in our situation. i remember thinking that if we didn't have our faith in God, our friends and family...if we were alone in all of this...that i would have been very grateful for all of that stuff. one of the pamphlets talked about what kids know about death and how they process in each developmental stage. as i read through it, i kept seeing statements in the "what not to say" column that would have been the exact thing to come out of my mouth. in a nut shell, it seemed that the best thing to do was to just be simple and clear. just say the word dead. don't say gone or sleeping or God wanted them more or anything like that. so that's what we did...and just like the book said, each kid responded differently. some cried, others just sat quiet. but the thing that we kept saying was that we loved them all and that they could choose talk about anne or not if they wanted. that either response was fine. we told them not to feel guilty when they had good fun days because it was normal and what they were supposed to do.
i'd never prepared for that situation. i never thought i'd have to explain to my kids that their sister was dead. they will never be the same. time stood still...
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