Most of you have probably heard our tragic news. Some of you may not have if you kept up with Justin strictly through email... I still don't know how to say it, even after saying it countless times... Our precious little Justin Lee died May 16th.

It's taken awhile to put this email out. Of course we've been grief-stricken, and making arrangements, but to add to it all, we're in the process of moving & my computer has been dismantled. In fact, after his memorial service in Omaha, we headed to Texas to prepare for his service here & I didn't go back. We're moving to temporary housing in Oklahoma City tomorrow while we look for a house... I'm writing from my mother's computer.

It was sudden. We don't know what happened really. We are still waiting to see if the autopsy results will reveal anything. There is still much we do not know, but I wanted everyone who anticipated more "Justin News" in their inboxes to know what little we do...

Justin Lee went in for his routine heart catheterization in preparation for his second stage surgery on May 15. Things seemed to go well except that he started to come out of the sedation so they gave him another drug they hadn't used before. Unfortunatly, that drug often causes hallucinations upon waking until it completely wears off. Justin Lee did experience the hallucinations for awhile & he didn't really want to eat anything. At one point, he seemed to go from agitated because of the hallucinations to sedated again because he just konked out. I couldn't rouse him & I noticed as I tried to entice him with the bottle that his tongue was pressed to the roof of his mouth. I was alarmed & called a nurse & they were able to wake him. They tested him for low blood sugar because he hadn't been eating, but he tested normal. They decided that the sedatives had likely kicked back in. Because he wasn't eating well that day, they decided to keep him overnight as a precautionary measure. I stayed in his hospital room with him that night. Several hours later Justin seemed back to his "normal". He was eating well. He didn't seem to have any more hallucinations or anything. Then his saturations began to waver & during the night they dropped lower than I have ever seen them. He had some duskiness, but I'd seen him bluer at home & didn't call in or go to the hospital. Several of the nurses & staff showed some concern, especially since they weren't very familiar with Justin Lee on that floor- (normally babies should stay near 100, normal for Justin was 60s- high 70's- & he was dropping to 40's & even mid 30's by the monitor). But even they commented that he didn't look blue enough to be desat-ing that much. Finally a doctor was called that was familiar with Justin's case & he felt that as long as Justin continued to show no other problems- ate well, acted ok, was alert, his coloring didn't worsen- then we shouldn't worry too much about the numbers. By the next afternoon, his color looked great, & his saturation levels were the highest I'd ever seen them. And we went home.

We were staying at the Rainbow House which is like a Ronald McDonald family house. Justin & I hung out in the room for awhile & then we went to the store & to get James Ray from our friends' house. I stayed until my husband (Lee) showed up & we all visited awhile. Then we all headed to the vehicles to go back to Rainbow House. We were hungry & thought we'd get something to eat on the way. Justin was nursing a bottle. I put him in his car bed & held his bottle while Lee loaded James Ray into his truck. We discussed picking up dinner a fast food place. Then we got in our vehicles & I pulled out after the truck. We got several blocks & I heard Justin choke. I honked & flashed the lights & we pulled over. I grabbed Justin out of his car bed & patted him. He had quit choking & was crying. But I thought he looked too blue. I asked Lee what he thought. It was so dark outside & we really only had the car dome light to go by. He thought Justin was ok. My instincts said no. I battled with them, worried I wasn't being rational. I said I'd go into the gas station next to the food place & look at him under better light. So we drove there. Lee went through the drive through & I took Justin Lee into the gas station. He was crying such a funny little sound. One of the attendants said it sounded like he was crying, "I want. I want." I thought he looked too blue. I talked to the cashier & told her Justin Lee had a heart problem. I felt everything in me telling me that he was too blue, something wasn't right, go to the hospital. And I remember asking the attendant, "Doesn't he look blue to you?" And she said yes & I ran out of the store. Lee came up as I was strapping him in & I said I was taking him to the hospital. He peered over my shoulder at him & said, "You were right. Hurry." And I took off. We had walkie talkies in each car & were talking as I raced to the hospital, Lee & James Ray just behind. I was terrified. I knew something was wrong. Everything in me screamed that something was seriously wrong. But I really don't think I realized how serious. That he might die. Except for one moment that reality must have broken through, because I remember telling him I was there for him. And that I needed him. He made that funny little chanting cry all the way to the hospital, but as we approached it got fainter. I thought that he was getting tired. We pulled up to the hospital & Lee jumped out to look at him once more & told me to hurry in with him. So I pulled up to the ER parking, pulled Justin Lee out of his car bed, & ran for the door just as he quit crying. I ran to the ER desk & as I tried to tell her what was wrong, he went limp & his eyes rolled back & everything went crazy. We ran him to a room near the reception desk & personnel swarmed in. Lee & I allowed ourselved to be pushed back by the tides of people because we didn't want to be in the way & I was spinning out of control. I still didn't realize what had happened, maybe because of what had happened the day before when he was unresponsive... maybe because I just couldn't go there. I was almost falling down crying. Just as a nurse ushered all 3 of us to a private waiting room, a code 4 was called over the intercom & I caught a flash of blue light outside his room... Someone caught me & I was in the waiting room & collapsed on the floor. I kept trying to calm down because James Ray was there, especially. I still wouldn't let myself believe that I really knew what a code 4 and a flashing blue light meant. My level of control wavered moment to moment. A nurse came in... seconds later? eons later? She said that Justin Lee had arrested & they were performing CPR but that he wasn't responding so far. I heard myself cry out. She told me that they were still trying & she'd go find out more. I'm not sure who the next report came from or how long had passed, but we were told that they had put him on a ventilator & were doing chest compressions but there was still no response yet. Lee called my mom & I was sobbing into the phone. Dr. Duncan, the surgeon, & Dr. Danford, the cardiologist, arrived amidst the chaos. I know it couldn't have taken long for them to get there because they were still working on him. Dr. Duncan told me he'd go check on him. Time stopped as I tried to talk to my mother. I heard the doctors come in the room behind me. I turned & looked. Dr. Duncan shook his head. I screamed "No......" as I buried myself into the floor in the corner. I couldn't look at any of them. I couldn't look them in the face. I couldn't bear to see the pity etched there because that meant Justin was gone. I can still hear my mom screaming, "what's going on? what's happening?" I couldn't answer her. I can hear Lee speaking into the phone, "They're trying to tell us he's gone." She told me later that when she told him to call her back & hung up, she wanted him to find out what the doctors were really saying. Because it couldn't have been that. I remember begging Dr. Duncan to go back & fix him. Telling him I knew he could fix him. I can hear him telling me that they had tried. Time swirled around us like slush. He mentioned that they'd found a little bit of milk. I can hear myself sobbing that I'd killed him. That I should have driven faster. that I should have come quicker. That I should've picked him up. No.... it pours out of me over and over. I can feel a jungle of arms around me. Dr. Duncan's hand on my shoulder, as he tells me that it wasn't my fault. that I was a good mom. that he had tried & I had done the best I could. I had done the right thing. I'm shaking my head, not believing him. Lee called my mom back & told her. She tried to talk to me but really could only sit hundreds of miles away listening to me weep and wail over a phone line, babbling, inconsolable. I can hear her telling me that she couldn't understand what I was saying. that she was sorry. I don't know when Lee began making calls. A friend came to get James Ray. He took him home where his wife could watch him & then returned to sit quietly in the waiting room outside- in case we needed him. Another friend called our minister and others from the church. A few came to sit with us, to pray with us, to cry with us... The doctors stayed a pretty long time. A hospital chaplain spoke with us. A nurse brought me Justin Lee. I held him a pretty long time. I remember talking to my mother while I held him. Lee held him briefly, crying as he spoke to him, kissed him & gave him back to me. I remember pressing him to my heart on the couch. curling my body around him. telling him how sorry I was. I remember wondering how I'd ever stop kissing him. how I'd ever give him back. The chaplain brought me a necklace. Two hearts that fit together like a puzzle piece. The inner heart stays with Justin Lee. The outer belongs to me. She helped me to make molds of his hand & foot. She gave me a lock of his hair. And gave me things to read for later. I remember a nurse asking if I was ready for her to take Justin Lee or if I wanted her to come back. I didn't know what to say. I hear myself telling her she better take him or I'd never give him back... I'm empty. And cold. I don't know how long I've been shivering so uncontrollably. Someone brought me a heated blanket. I must have been in a daze because I remember hearing people talking about how I'm falling asleep. I don't answer. I'm numb. Except for the cold. My head hurts. I know they brought me Tylenol. I feel guilty for taking it. Who cares about a headache? I'm alone in the private waiting room..I hear everyone talking just outside.... a million miles away. Finally it's time to leave. I let them help me up, help me to the car. I can't believe I can walk at all. I am numb as we sit in the car. Then it starts to move & I can hear myself wailing- growing louder as we back out of the space, pass the hospital, and drive away... Nooooo.... How do you leave your child like that? I feel like I am abandoning him. We went back to the Rainbow House. James stayed the night with our friends. Justin Lee had a special bunny who would say the Children's Prayer (Now I lay me down to sleep. I pray the Lord my soul to keep. Angels watch me through the night. And wake me with the morning light. Amen.) This bunny has been with Justin through so much... Surgery, heart caths, & of course just the everydays of recooperation and waiting. I named him Faith. Faith stayed at my side for several days & nights... The days blur. We moved in with our friends for a few days. Again, support and love have rained upon us in our sorrow.

We had a memorial service for Justin Lee in Omaha at our church. It was a beautiful tribute to someone so precious. I had started a lullaby for Justin in the hospital. It was 2 stanzas long when he died. I finished the rest before his service. I left that evening for Texas. Justin Lee was already there. We had a visitation at the funeral home & a graveside service here. We chose a somewhat new option- called the second rite of interment. He shares a plot with my father, which gives me some peace. The service here was beautiful, too. It was supposed to be so cold. I prayed and prayed for a spring day. I thank God for the beautiful day Justin Lee deserved. The flowers were gorgeous. The singing and eulogy were sweet. I think he would be pleased. I wrestled with the question of what to do about Faith. I didn't know whether I should keep him or send him with Justin. I finally decided this: Faith has accompanied Justin Lee throughout his precious, short life. But in heaven, he won't need Faith anymore. We still do. I think he'd be pleased with that, too. I chose his Easter outfit. We bought a lamb with a cross stuffed animal & a friend gave us 2 identical teddies- who pray the Children's prayer. We left one with Justin & have named the other Jaley after Justin Lee (J-Lee). My mom gave him an angel pendant... He wears the wrist rattle James Ray gave him the day he was born. And of course the heart necklace...

And now we are trying to pick up the pieces... They say that grief is an intrinsically selfish emotion. I suppose in some respect that is true. I mourn savagly for all I have lost. But I also cry for others.

Telling James Ray was devastating. Even knowing he probably would not understand much. At the visitation, he pushed his way to the table & picked up Faith. He then pushed his way over to Justin Lee & dropped Faith into the casket. I broke. What does he think? He adored "his baby." If he sees one of the service programs with Justin Lee's picture on it, he will bring it to me. Faith belonged with Justin. Justin belonged with me. I decided to talk to James Ray about Justin periodically. At first he would cry & didn't want to talk about him. Then it seemed to make him feel better to talk about him. Never knowing what he's really feeling is so hard. The tears coursing down my cheeks raced the chills that ran the length of my spine each time he'd look at a picture of Justin Lee and claw at it pleading, "pweeze." And again when he stopped the heartbroken pleas to sweetly wave at his baby brother's picture and say, "bye-bye." Yes, I mourn for him.

And all the rest. Those who knew & loved him & always will. And those who were denied the privaledge of his smile, who never basked in the warmth of his sweet breath, who never will know the depth of promise because they never fell into his captivating eyes. For the world that doesn't know how it will never be the same...

I rejoice in his peace & I can sing God's praises even now. But I weep for all the frozen moments of joy that almost came to be. I still struggle with guilt. I know that the protests are true. But guilt is not a rational emotion... Some days I feel anger on the threshhold. But I know there really is no one to be angry at- and so far I've been able to just slam the door in it's face. It's a carousel of emotions- jealousy, peace, fear, agony, confusion, and so much more... but it always comes back to this: I feel blessed. Justin Lee was a precious, precious gift. He was a shooting star, a fleeting eclipse, a brilliant once in a lifetime phenomenon. And I was there. I was given 11 weeks with an angel & he's forever in my heart. The pain runs so deep through me, but I was so very blessed to have had him at all. I thank God for the promise of heaven. My baby has no more pain. He is happy. He is whole. And so Justin's story has a happy ending afterall... For it doesn't end here. My "angel-fire" has gone to God, but his light burns on forever...

~aleasha

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