9-22-03
At this time last year, Toph was still out of a job. He was being Mr. Mom while I was out working. Neither of us was getting enough sleep as my body was giving out and Sullivan was once more getting sick.
I remember mornings, where I’d lay on the couch watching Sullivan sleep. He’d wake up and begin crying and I’d drag my aching body over to him and lay beside him. I’d stroke his curly hair, sometimes silky and sometimes crunchy, depending on whether he’d had a bath the day before. His hair would often feel crunchy just because he’d drool and the drool would run into his hair. Stroking his hair used to help him calm down; as if it let him know there was someone nearby. In those days though, he would just sob all the harder and raise his arms to be lifted. And then I’d feel like crying because I could barely lift Sullivan. My back hurt so much. I’d often have to wake Topher just to get someone to help me lift him up so I could hold him. Sometimes, Topher would just get up and do the holding while I worried about medicines and such.
When I got home from work, I often just wanted to lie down. I didn’t spend nearly enough time with Sullivan in those days. I’d sometimes try to lie down beside him to snuggle.
Due to many circumstances, we were short on respite care in this time. Because of that, and because of my body feeling so fragile, we decided to take the Hospice program up on one of its options: to have the patient taken to a Hospice facility for 3 to 5 days so that the family can take a break. The nearest facility was in Fort Wayne, Indiana. Word came that he could be admitted on Friday, September 27th. So, we packed his equipment up, and his toys and clothes and other supplies, and made the drive. I don’t actually remember much of that. I remember getting his room situated, so that it was easy to access all of his things, and I remember the check in with the nurse…Denny was his name I think. We tried so hard to give tips to ease Sullivan’s comfort, tried to explain all of his little quirks, the things that took months to learn sometimes. We wanted the Home to be comfortable with him and we wanted him to know they understood him and all of his signals.
Unknown date:
The last time I held Sullivan, we curled up in a fat chair at the Hospice Home. My back had been an almighty pain for over a week, and sitting in this chair was torturous for me. It was the only way to hold him, though. He wouldn’t sit still in the rocking chair, nor would he lie comfortably with me on the bed. The only option for cuddles was this chair. After a short time, I could no longer handle the agony. I asked Topher to take Sullivan from me, so that I could lie down. Topher leaned over me, picked up Sullivan gently below his armpits. As Topher tried to settle Sullivan more comfortable in his arms, Sullivan made a diving lunge to get back to me. His arms stretched out to me and his face crumpled into a hoarse cry. My own eyes welled with tears too; there was no way I could continue to sit in that chair, even to hold my beloved baby.
He settled into his daddy’s arms well enough, and soon he went to sleep. We marveled at how he was no longer oozing fluids from his mouth. That was a normal occurrence with Sullivan, and it was odd to find ourselves with dry shirts after holding him. Topher even tried some PD&P to get the juices flowing, but nothing happened. Sullivan remained dry.
The last time I saw Sullivan alive, he was asleep in the crib. He lay peacefully on his back, wearing his red and blue striped pajamas. The pajamas made his body seem so long; his legs also seemed longer than normal. The fabric was warm and soft, soaking up all the body heat his little body produced. His eyes were closed, with his long eyelashes resting on his chubby cheeks. His mouth hung open a tiny bit, as it always did, showing a peek of his teeth. His hair curled softly by his ears, the tiny ringlets framing the unnaturally pale shells of his ears. Even with full oxygen, above and beyond what we could give him at home, he was pale.
I was the last one to leave the room that night, following behind Topher and Ken. I leaned over the crib, ran my fingers through Sullivan’s soft hair. I tucked the blankets around his body and kissed his forehead. Then I whispered to him, as I often had when he was so desperately ill, “We love you, Sullivan. We always will. Please do what you need to do. Don’t worry about us. We’ll make it through, and we’ll always love you.” I told him we’d see him soon, and then I left, leaving the lights off and the door open slightly.
10/1/04
Two years ago today, I woke up to the phone ringing. Then, it felt like a deja-vu to the morning before, when a phone call had come in early in the morning. The day before, the phone call had been to let us know that Sullivan’s pulse-ox was low and he was extremely pale, so they’d increased his oxygen to the highest point they could. This day was different. When I answered the phone around 7 am on October 1, 2004, the woman on the end of the line was subdued. She told me that she wished she didn’t have to make this phone call, but our son had died shortly before. She assured me that he’d been peaceful. He’d slept the night through, they’d changed his diaper shortly after 6am, and then awhile later, the nurse heard a deep sigh from his room around the corner. When she went to check on him, he was no longer breathing.
I can’t remember how I responded to her. I remember walking into the bedroom and sitting on the bed beside Topher. He was watching me and I told him, “Sullivan’s dead. He’s gone.” The nurse again gave me the details which I passed on to Topher. Then we hung up the phone. The two of us just sat there. I don’t remember if we cried or just felt numb.
Then we had to call the family. I called my parents and let them know. We called Karen and Ken and let them know. Ken was still home, but Karen was on her way to school. Ken said he would go out to the school and let her know in person. We decided that they would join us in the drive to Ft. Wayne to see Sullivan’s body and say our goodbyes. They were worried about us driving by ourselves.
We got Jillian up and told her. We all got dressed. I remember I put on khaki pants and a white button up dress shirt. What do you wear to say goodbye to your dead son? It’s strange the things you remember.
Before we piled into the car, we stopped at Jillian’s school to let her teacher know she wouldn’t be there and why. Her teacher had been so warm and supportive up to then. Perhaps we just needed to see a friendly face and have a warm hug.
I don’t really remember the drive to Ft. Wayne. I think we talked about Sullivan, for Jillian, so she knew what to expect. I think some of us cried. Toph drove.
When we got to the Hospice Home, I remembered the day before. After hearing that Sullivan wasn’t doing very well, I’d called into work and taken the day off. We’d gone to Ft. Wayne for the day, to be with Sullivan. When we’d arrived at the House the day before, we’d found one of the people that worked at the nursing home, the chaplain I think, pushing him up and down the halls in his wheelchair, singing Old McDonald to him. The nurses were all chuckling at her for her singing, and Sullivan appeared pretty content with what they were doing. We were very happy to see he was getting attention beyond just medicines and diaper changes.
On this day, though, when we walked in the staff treated us with sad respect. Jillian decided she did not want to go in to see his body, so Karen and Ken waited in the “Family Room” with her, reading books and such. Toph and I walked to Sullivan’s room. The door was partially shut and the lights were down low. The crib was located to the left of the doorway and could be seen immediately upon walking in. When we saw him lying there so peacefully, we both began to cry. There was just a slow outpouring of tears down both of our faces. We couldn’t believe what we saw.
His body was propped up on his boppy pillow, as always. He was wearing his pajamas. They were red and blue striped, long john style pajamas. When he wore them, he looked extremely tall. Today, he was tucked under a crib comforter that was not his. His sock monkey sat in the crib beside him. Looking at his body, the biggest thing we took note of was the fact that his eyes were completely shut. It was so rare that he ever shut his eyes all the way, even in sleep. His lips were very pale, but still sat open just a bit, as always.
One of us pulled back the comforter at some point. Toph wanted to pick him up and hold him. When he did, we could see his feet. They were mottled, purple and blue. Although we’d been warned of this, I was shocked and didn’t want to see anymore. I think I left the room. I let Toph have his time with Sullivan, to say his goodbyes. I went to check on Jillian. The sight of my husband, cradling his dead son’s body was poignant beyond belief. The vision in my head of the two of them is one of those snapshots which illustrate the deep and tender love of a father for his son. It was such a heart wrenching moment though, as the tears streamed down Toph’s face and Sullivan’s arms hung indifferent to his sides. Just yesterday, those little arms would have reached up to squeeze Toph’s neck, to touch the hair at the nape of his neck.
She was doing ok, puttering about in the Family Room with Karen and Ken. They were talking with her, discussing how she felt about things. They’ve always been close confidantes, those three. I’ve been glad that she has them, that she’s so close to Karen and Ken. Even in the days when Toph and I have been too wrapped up in what was happening with Sullivan.
After a bit, I think Karen and Ken decided to go down to the room to see Sullivan’s body. Ken came back after awhile. I must have wandered down again, because I remember seeing Karen sitting in the rocking chair, holding Sullivan.
At some point, Karen and Toph must have left after resettling Sullivan’s body in the crib. I actually had no desire to hold the lifeless body. It was too cold, too floppy; I didn’t want to cradle it in my arms. Instead I sat beside the crib, running my fingers through the hair on Sullivan’s head. It was still soft, still with the curls that were his trademark. The scalp of his head was cold and his cheeks were taking on a rubbery feeling they’d never had in real life. His skin was still soft, but so cold; it was the muscles beneath that changed in feeling. Instead of covering his body with the Home’s comforter again, I wrapped him in his blanket; the one his great grandmother had made for him. It was the one I’d carried with me and cuddled so often during his many hospital visits. It was white and aqua and blue, all soft pastel colors and soft yarn knit together to make this shroud for his body.
I sat there beside the crib. I think I spoke, but I can’t remember what I said. I cried. I touched his body, his face, his hair, and his fingers. I noted the gtube still in his belly, the trach scar still marking his throat. The many fine scars across his abdomen from the laparoscopic surgeries to do the gastrostomy and on his chest from the central line placed to his heart when he was first hospitalized. I briefly recalled the fuss the nurses at Toledo Children’s had made over that central line. Apparently the staff at the local hospital had done a shoddy job of it in the rush of trying to save his life that day. The memories washed over me.
Someone entered the room and broke the spell. I got up and left for the Family Room. I decided I needed to get out of there. Ken didn’t want me driving, so he came with me and we took Jillian. We left Karen and Toph; they wanted to spend more time with Sullivan’s body.
We went to a nearby open air mall. Toph and I had briefly walked through it a couple of days before during one of our “breaks” from the Hospice Home. There was a candle store there, which had all manner of decorative candle holders and candles. That was the first store I wanted to visit, to find a candle that was special, for Sullivan. It took me a very long time. In the meantime, I found a candleholder I thought Karen would particularly like. It was pewter, meant to hold a big fat candle, with angels. Karen loved angels. Ken bought it for her. I ended up buying a tree. It had stained glass leaves in autumn colors on wire branches. A votive candle sits behind the trunk. A different day, I found another candleholder. It was stained glass again, but with an orange sun. To me, that one is much more a representation of Sullivan’s life. This autumn tree was more representative of his death.
What happened after we left the mall is a blur. I must have gone in for one more sight of Sullivan’s body before we left for home. I know we packed up all of his personal items, except those we wanted to stay with his body (aka sock monkey and his blanket). We must have packed the wheelchair into the van too. Before heading back home, we stopped for a meal. We went to Applebee’s. Toph ordered a drink and the server started to jokingly give him a hard time about drinking so early in the day. Toph’s dad quietly explained that we’d just been to see Toph’s son’s body and the poor waitress couldn’t do enough to be kind and sympathetic from there.
We stopped at a liquor store on our way out of town. It was one of those silly things…we saw it and joked that the prices were cheaper in Indiana than in Ohio because there wasn’t an absorbitent tax on it. Right beside the liquor store was a consignment shop for kids’ clothes. I went in there with Jillian and Karen while the guys went into the liquor store. I didn’t go in looking for anything, that I recall, but I found something I wanted. There in Sullivan’s size was a tiny suit. It had khaki pants, a cream colored shirt with a tab collar and a vest in light browns. . I especially liked the outfit, because it was not dark and it was more relaxed than a normal suit. I didn’t want a tie or a jacket on my little Sullivan. The outfit was a nice medium. It looked nice, but it wasn’t dreary or formal. It would become the outfit his body would wear for the viewing and memorial service; the last outfit his body would wear.
10 March 2005
The morning we got the call about Sullivan’s death, I dressed in khaki pants and a white button up shirt. I refused to wear black. We drove with Toph’s parents to Indiana, to the Hospice Home where Sullivan had spent his last days.
We saw his body. Touched him, and whispered our sadness and goodbyes. I had already said goodbye. The night before, I was the last one to leave his room. I leaned over his crib and I whispered to him, “Goodbye my sweet boy, my Sullivan. You do what you have to do. We know you’re almost ready and we won’t hold you back. Don’t stay for us, we’ll find a way through.” Seeing his body laid out in that same crib the next day was almost shocking. His body was cold, and there was no life in his muscles. His feet were starting to swell and mottle. It was only the second time I’d ever seen a dead body. The first was my grandmother, who I love and miss still. This was the first time I was confronted with a body not made up for viewing. It was just a body, a corpse…the corpse of my dead son.
His hair still curled, but the color was fading. His eyes were shut. His mouth hung open in the way it always did, with his little teeth just showing. His face was relaxed in a way it never had been in life. He’d always had to fight his way, even when asleep and relatively healthy.
Toph and his mom wanted to hold his body. I did not. It felt faintly obscene to lift him, to hold him. I barely felt like touching him. The chill of his skin was not a memory I wanted to keep in my head. I preferred to remember the warmth of him curled up against me the night before, when I had been holding him close and soaking up what time I had left. While they held him, I took Jillian and Ken and went to an open air mall Toph and I had found in the days before.
There was a candle store there. I wanted to get a candle to burn for my baby. We had never been able to burn them during his life, because of the oxygen tank we kept for emergencies. I roamed the store for quite a long time, looking for something just right. I think at one point one of the salespeople tried to help me. I just looked at her and said, “I’m looking for a candle to remember my son. He died today.” And the salesperson left me alone.
I finally found a candle I wanted. It was an autumn tree. The trunk and branches were made of a warm-toned metal. The different colored leaves made of glass. A small votive candle could be mounted behind the trunk and the light of it would make the multicolored leaves glimmer. I found it comforting to be reminded that though Sullivan’s days had come to an end, there was a rebirth waiting. Just as fall turns to winter, winter turns to spring.
Later, I found another candle for Sullivan. It was a tall golden holder. More glass, this time in a golden sun. The gold of the sun reminding me of the light Sullivan brought to our lives.
After we’d finished buying candles and saying goodbye to Sullivan, and all of the formalities at the Hospice Home, we went to have lunch. We ate at Applebee’s. We decided to make it a good Irish wake. There was some alcohol going about. The server teased us about it and we once more explained about the death of our sun. We were a somber lot, with not much heart being put into making it an Irish wake.
After eating, we got on the road home. For some reason, we decided to stop at a state liquor store (prices are cheap in Indiana, I guess). Beside the liquor store, there was a children’s clothing consignment store. I decided to meander in there while the guys were buying their alcohol. I was drawn to the section with clothes in Sullivan’s size. I found a three piece suit that appealed to me. It had a cream colored shirt with a tab collar, a tweed vest, and khaki pants. Karen bought it after we conferred and decided it would be an appropriate suit for him to wear for his memorial service and viewings. It was the most formal outfit that would ever grace his little body.
Throughout all the doings of that day, I remember feeling numb. I was going through the motions, trying to keep it all together for Jillian’s sake, for Toph’s parents’ sake, for Toph’s sake. His parents were taking things very hard, although they were quite worried about how we were feeling. They didn’t think we should drive, although we felt quite capable of doing the driving. We were numb to the pain.
It’s now two and a half years later, give or take, and most of the time I can discuss Sullivan without feeling the shattering pain in my heart. Sometimes, out of nowhere, I feel it. My heart feels torn in two, my belly gets nauseous, and my eyes burn with tears and my throat chokes on the tears. I remember first the aching numbness of hearing the nurse over the phone, telling me he had died. Then I remember the frozen control that allowed me to pass the news on to my parents and Toph’s. It allowed me to walk to Jillian’s school and tell her teacher why she wouldn’t be there that day. It allowed me to talk with Jillian about what had happened to her brother and what she could expect through the next days. Then I remember when that control broke. After arrangements had been made with the funeral home and phone calls had been fielded, then I had to go order the flowers.
I sat there, flipping through books with my sister. I had no idea what to do. Do I choose blues and whites, for his eyes and pure soul? White is traditional for children. Do I choose bright festive colors and defy convention? In the end, I chose oranges and yellows, the shades he’d shown the most interest in. They were also fall colors, and being the beginning of October, it suited. Making that decision broke my heart. Choosing these flowers to adorn my son’s casket….I wanted to curl up and cry.
Then we had to decide on the service. We had Bob Rudolph to help us, as well as Ken. The whole family gathered. We hashed it out and at the end, I said, “It would mean so much to me if we could get a piper to play Amazing Grace. Does anyone know how to find one?” And somehow, Karen did. Just such a creature had been at her school just a month before to honor the victims of 9/11. She got in touch with him and made the arrangements. It meant so much to me, when the sounds of Amazing Grace wailed into the air of the funeral home at the end of the service. For many of the people there, it was the straw that broke the camel’s back…the tears began flowing. It was powerful. It brought the people of the neighborhood out to see what was happening. It was beautiful, a real tribute to my Sullivan, my blue-eyed boy.
