"Night night daddy, you rest"
posted February 03, 2004 at 21:50
People keep telling me how strong I am. However, I feel broken, wounded, frightened and most of all cheated. I scream (in my head) everyday over and over again - IT'S NOT FAIR!!!!!!!!
It helps to read the guest book postings on the Post Gazette site. It's healing to hear all the wonderful things people are saying about Rich especially the people who hardly or didn't even know him. I've always known what a spectacular soul he was, but had no idea everyone else did also. I'm searching for what I'm supposed to learn from this experience - maybe that is it.
The only thing that makes sense to me is he was so sweet and compassionate and thoughtful and helpful that he was supposed to be an angel. My friend Kelly truly believes he was just too good for this world and God decided to spare him its cruelty. This makes sense to me because even long before he was diagnosed I was constantly worried about him. For example, we both used to drive Rt. 28 to work and I would leave first. I would arrive at work sick to my stomach over the dangerous conditions and worry for his safety until I got him on the phone later in the morning. Or, I couldn't stand the thought of someone, even a store clerk, being mean to him. I now know how much I underestimated his courage.
Rich's website left off with him going to the ER on Monday, December 22, 2003. I guess I'll pick it up here: At the ER a resident doctor came into the room with his head hung low and very apologetic. He told us that the CT scan revealed spots on Rich's liver and spleen. My body's extremities went completely numb. Rich and I were not naïve and the fear of the return of the melanoma lingered over us for the past 2 � years, but I couldn't believe what we were hearing. Moreover, I couldn't believe the way this news was being delivered to us. It was clear this doctor had absolutely no hope.
The doctor left the room and Rich looked at me and said, "I'm sorry." Through my tears I assured him we would beat this. He was admitted to the 6th floor cancer unit of Allegheny General Hospital. Here he was immediately placed on an IV where his new favorite pain medication, dilaudid, became a very important part of his life.
The next day the oncologist came to see him and explained the lower part of his lungs were also in the CT scan and it looked as if the cancer was there also. They wanted to do a liver biopsy to see if in fact it was the return of the melanoma or a less severe lymphoma. I found myself praying that my sweet husband be afflicted with lymphoma. I told him this was not the way he and I were going to end. I told him we were going to beat it and no matter what happens this was not his fault and I didn't blame him. This was important because when he was first diagnosed I was angry at him for not taking care of himself.
Rich never had the biopsy because his blood was unable to clot even after being given fresh frozen plasma. The doctor decided to treat the cancer as indeed a return of the melanoma. She asked Rich if he would like to begin chemotherapy and of course he agreed.
He was released from the hospital the evening of Christmas Eve. My sister Kathy arrived from Vancouver, BC, that morning. Our first stop was at the Giant Eagle pharmacy to fill his prescription of dilaudid.
We went home and got ready to go over to Rich's parents to spend the holiday with his family. Of course, I did the driving because Rich was on narcotics. Madison was in the back singing to her Toddler Favorites CD and I kept turning to look at her. It was a snowy night and I'm not the best driver plus I didn't have my glasses. Rich touched my hand and in his deadpan style said, "Watch the road - I can't clot." Even after all that bad news - he made me laugh so hard.
We spent the remainder of the holidays with Rich's family and he continued to grow weaker and weaker. He was so happy to be with the people he loved the most. It was especially important to spend time with his brother Matt and his cousin Danny, who drove up from Florida with his wife and 3 young children. He just smiled watching Madison and Ian (Danny's youngest who is only about 3 months younger than Madi) laugh and scream and run together.
After the holidays my sister and I began to prepare macrobiotic meals for Rich. I read so many success stories about people reversing cancer, I was sure this coupled with Western medicine would save his sweet life. The meals were actually tasty and Rich always liked miso soup and tofu anyway. This is an approach I might like to continue as part of my own healing.
I was convinced we would be granted a miracle. I thought that maybe this was "our calling." We would write a book and inspire and help others to reverse cancer. It was possible...
Monday, December 29 was his first and only chemotherapy treatment. (He was scheduled to have the treatment every 3 weeks.) He was stoic and took it in stride just as he did everything. Surprisingly, that night and the next day he felt very good. He experienced very little nausea and actually had some energy. He thought it had something to do with a steroid they gave him before the chemo. By this time he was on about 8 different medications, including a pain patch, at home. He wasn't eating very much, but what he was eating was macrobiotic, except for the ginger ale, but he was so thirsty he really wanted it. I met with a macrobiotic counselor who assured me that it was okay if he at least ate a few tablespoons 3-5 times a day.
(Oh, if you are wondering just what macrobiotics is, check out
macrobiotics.org)
On Tuesday, December 30, I was scheduled for the "big" ultrasound. Even though Rich was feeling better, he was still too weak to make the trip back to AGH. My sister Kathy went with me and they gave me beautiful pictures for Rich. I was really hoping they could videotape it, but they couldn't. I called him right away to tell him we were having a boy - he thought this was very funny because I was sure we were having another girl. That night I really wanted to discuss boy names, but he was too tired and simply said, "We have time for that."
Rich was to have a blood draw at the end of each week until his next chemo treatment to see how he was responding. It just so happens I had a prenatal appointment on Friday, Jan. 2 and the blood lab and my OB/GYN are in the same building. After his labs my doctor agreed to give me an ultrasound which they brought Rich in to see. As happy as it made me that he got to see the baby, this memory makes me equally sad because I think this is the first time I realized just how sick and weak he looked.
The following week my sister had to return to Canada and Rich's dad took the week off to help us. Monday, Jan. 5th I had to go to work in the mornings, but my boss allowed me to leave early. Each day I stopped at either the East End Food Co-op or Goldenseal (in Squirrel Hill) to continue to build our macrobiotic armory.
Here I need to pause and thank my sister Kathy because without her I would have never been able to purchase all the supplies I needed to create the meals plus she began preparing the meals; my friend Kim for searching health food stores in Orange County, CA, to find out everything she could about what we needed and sending us not only a box of products from California, but also she ordered us an extensive macrobiotic starter kit from the Kushi Institute in Boston; my friend Kelly for poring over macrobiotic websites to help us understand what the whole macrobiotic approach exactly meant; Linda Hansen for running to the East End Co-op to pick up obscure things I forgot to purchase; my sister Sharon for helping to replace the pressure cooker I ruined and getting the stainless steal pan I needed; my sister Maureen for having a natural spring water service delivered to our home; and Paige, Dana and the
pittsburgh.com staff for trying to organize a macrobiotic food chain for us. I just wish Rich and I would have started macrobiotics in California when he was first diagnosed. (By the way - he had 2 surgeries in CA - the Post Gazette article mentions only one.)
While Rich's dad was with him in the morning of the week of January 5, Rich mostly slept and his appetite was decreasing. However, on Wednesday we heard from the oncology nurse who reported his blood work was very good. She said his red blood cells were responding to the chemotherapy and his liver panel, while still high, was much better. This was great news!! I was sure Rich was going to win this fight.
On Thursday, January 8, Rich and I planned on going with Linda to the Open Mind (Phil Harris's store in Sewickley) to talk with Phil about healing crystals, energy centers and Reiki. Also, there is a woman there named Tracey who is a certified iridologist, herbalist and nutritional counselor. I was very excited to meet with people who I knew would give us more hope and spiritual insight. By Thursday evening Rich was too tired to go so his dad came over to be with him and Linda and I met in Sewickley.
The herbalist gave me advice on which herbs would clean his colon and then what to use to begin to repair his liver. She suggested we begin with cascara sagrada for 5 days then move on to milk thistle. She told me he needed iron and potassium; enzymes in the evening; dry brushing with natural bristles to get his lymphatic system moving; to avoid dairy, whey and too many carrots; eat almonds; drink distilled water to remove inorganic minerals from his system; and try essiac tea. Essiac tea (I don't know if I'm spelling this correctly) is made up of such things as turkey rhubarb, red clover and slippery elm. Linda said aloud she felt like she was talking to Granny Clampet. I almost fell off my chair laughing.
Phil recommended frankincense. He said it was healing. Just talking with Phil was somehow reassuring and comforting for me. He gave me a stone called sugilite from South Africa. It is used in the treatment of cancer and is said to bring special healing powers to humanity. According to the print out Phil gave me, it helps one to forgive oneself and others, enhancing one's understanding of the lessons which have been chosen for this visit to the physical realm.
He also loaned us a mineral from Russia called Chlorite. (At least I think it was from Russia.) Chlorite helps the body to absorb Vitamins A and E, calcium, iron, and magnesium. It has also been used to eliminate toxins from the body and act as a an anesthetic during times of pain. All of which he needed. He was literally disappearing before my eyes.
I know what some of you are thinking, but at this point Rich and I were becoming desperate. He immediately placed the crystals on his abdomen when I brought them to him. Rich was very interested in crystals, chakras and energy centers. I shouldn't speak for Rich. At that point I was becoming desperate. I prayed for our miracle.
The last item Phil gave us was vibhuti ash. Apparently, there is a man in India called Sai Baba. I had never heard of him, but Rich had. He is said to be able to materialize this ash from his skin and it possesses great healing power. Phil instructed to rub a little on Rich's forehead and tongue. We did this several times a day. There are many websites dedicated to Sai Baba and one of those temples near Monroeville has something to do with him.
Early Friday morning I awoke to Rich practically falling out of the bathroom back into bed. It really scared me, but I thought it was the Ativan - one of the drugs they gave him for nausea after chemo which was also an anti-anxiety medication. He didn't really like this drug because it made him so loopy, but he took it at bed time to help him sleep. I didn't like this drug also because it made him loopy and it stayed in his system for so long.
When his dad arrived Friday morning I told him I was concerned that he hadn't eaten. Whitey told me that while I was with Linda the night before he and Rich had a nice conversation and watched TV and Rich was pretty alert. This made me feel better and I went to work. I stayed only for 2 periods and returned home. I was sure Rich would be feeling better.
I got home and Whitey told me he still hadn't eaten. I prepared some miso soup and took it up to him. I tried to be firm yet loving and told him I knew he didn't what to, but he really needed to eat at least a little. He said, "Don't boss me." He said this to me a lot throughout our relationship. Whitey thought this was a sign he was feeling better.
Even though he was tired and weak, he was still due for bloodwork on Friday. He promised me he would eat, but he'd rather rest first and go to the lab Saturday morning. I thought this was okay and laid down with him and took a nap.
I woke up around 3:30 pm and could tell he was very restless and uncomfortable and he still wouldn't eat. Now I was beginning to fear he was dehydrated. I told him I was going to call the oncology nurse to tell her what he was acting like. I could tell he didn't want me to, but I was worried. Dehydration was one thing they told us to watch out for after his chemo. They explained it would be very easy to re-hydrate him at the cancer center without admitting him.
By the time I talked to the oncology nurse it was after 4:00. She said it probably was dehydration, but to take him to the emergency room. I assumed this was because the chemo lab was closing soon. I told Rich what she said and he told me he could not make it down the steps let alone take a car ride to the hospital. Now I was really scared and thought about calling an ambulance. Instead I called his dad and he came over and helped him out of bed, down the stairs and into the car.
When we arrived at the ER they had to take him in by wheelchair. The wait to register was very hard on him. When we went in to register the nurse looked at him and asked, "This is end stage liver failure?" I almost screamed! But, I told her no that wasn't the case at all he was just dehydrated. She apologized. He took more pain pills and we found a place for him to lie down until a room was ready.
Finally, a room in the ER was ready. The first doctor who came in said something like, "So, we are looking at end stage liver failure?" I again couldn't believe my ears, but this time became very angry. I yelled back at him, "NO! No one has ever said that to us! That's not what it is!" He apologized and told us he was just reading what the intake nurse wrote. I just wanted them to begin the fluids to help him feel better. We were in the same ER room as we had been in just before Christmas. They needed to get a urine sample so Whitey and I waited outside the room. Whitey went to call Elaine to tell her what was going on and I waited by the door. A young nurse popped her head in his door to see it they were finished and if she could get a blood sample. They weren't ready and she walked back up to the nurse's station. I could hear her say to another nurse, "Oh my God what is wrong with him? Why is he that bizarre color?" I couldn't believe what I was hearing. She was talking about the most sensitive, loving, beautiful person I know. Holding back tears, I yelled, "He has cancer and it is affecting his liver!" She realized what an idiot she was and came over to me and apologized and tried to make small talk. Of course, I wanted nothing to do with her and reported her to Rich's doctor - without Rich knowing any of this. Soon it was back to the 6th floor for what we thought would be a day or two of fluids. Whitey and I left that night thankful Rich would soon be feeling some relief.
Grammy Rust kept Madison overnight on Friday and I slept in a little. Rich and I were never morning people and I didn't want to get to the hospital too early because I wanted him to rest. When I did arrive around 11:00 am Rich was still pretty groggy. Rich said to me I might want to talk to the doctor on call. He told me she had already come to see him and she had some different ideas concerning his condition. She told him it was now "just about pain management and I should get my shit together." I almost fainted! How dare she try to take away his hope - is all I could think. I wanted to storm out of the room and throttle her. But, Rich told me during our last hospital visit, "Deni, it makes me nervous when you fuck with my doctors." (Sorry about the language, but Rich said it.)
I immediately called Whitey, my family, Kelly and Linda. I left Linda a voice mail and asked her to bring us a baby name book. We still hadn't named the baby. She brought two.
Saturday night was actually a great night for us. For some reason that I'm still not sure of, the doctors ordered an ultrasound for Rich that day, but the radiologist didn't arrive until 10:45 pm. We thought this was strange, but we didn't mind. The radiologist was young and cool and fun. He also was confused as to why an ultrasound was ordered. He asked if anyone had mentioned anything about his gallbladder - no one had. Even though he was confused he began to set up the machine. He was so easy-going I said, "Hey, ya know what would be fun?" He asked what. I rubbed my belly and said, "If when you are finished with him we take a look at this baby." He looked at me with genuine delight and said, "Hell yeah!"
The radiologist spent a lot of time with me and Rich looking at the baby. He made sure Rich could see and pointed out everything we were looking at. Rich was lucid and alert and full of joy. I am very thankful to that radiologist for giving him that gift.
The next few days are sort of a blur so I'll do my best to sum them up.
Sunday morning I spoke with a social worker who began the phone calls and paperwork to get a hospital bed and visiting nurse to our house in Cranberry. At this point we still anticipated Rich would be released on Monday. I had inquired about the home nurse on Friday night in the ER so that we wouldn't have to worry about him dehydrating again.
Also, that morning Rich was experiencing a lot of anxiety. He said he would start to fall asleep then abruptly wake up. He felt he really needed some rest so he decided to take an Ativan. Remember - this is the drug that made him incredibly groggy. He was in and out of coherence the whole day. I assured everyone, especially his mom and brother, that it was just the drug and it would wear off in a few hours. People waited patiently for Rich to come back to his old self. I waited for our miracle.
Paige and Patti came to the hospital in the afternoon and Patti was very excited about some internet research and a man she learned of who was a cancer survivor the night before. She explained his story to me and put me on the phone with him. His name was "Bucky" and he lived in Butler. He told me that four years ago, "I had one foot in the grave and the other on a banana peel." He also had cancer that metastasized all through him. He said his wife find out about some doctor in California who came up with a concoction for beating cancer. It consisted of MGN3, vitamin C and Co Q10 enzymes. I was immediately on board. Patti rushed off to gather all the ingredients and I was sure this was our miracle. When she returned I began the regimen of pills. Rich was having difficulty swallowing so I opened and diluted capsules, crushed vitamin C pills and ripped open enzymes. Rich appeased me all day, but I know he didn't have the energy to ingest all this. All the ingredients were natural and even the nurse said they wouldn't interfere with any of his medication.
Sunday night he remained dazed and unsteady. He had difficulty getting comfortable. We were constantly rearranging his pillows and his feet and the positioning of the bed. I was so tired I couldn't see straight. I wanted him so badly to get some rest. Frankly, I needed some rest.
Monday morning he actually apologized to me! He said, "I'm sorry. I know it was a rough night." I just looked at him and said, "I adore you. I would do anything for you." He said thank you.
Later in the morning, yet another oncology resident came in to see him. He asked all the same questions: where is the pain?, so you had melanoma?, what brought you to the ER?, etc. I had had enough. I sternly said to him, "Don't you people talk to each other? Isn't all this written down somewhere?" That resident didn't know what to make of me. Rich was exhausted and I didn't want him to have to go through everything again.
A few hours later an oncologist we had never met came in with about 8 other people. There was no way I was going to allow all these people stand there and stare at him. I said, "Oh no! Is it really necessary to do this with 12 people with you?" It may not have sounded that nice when it actually came out of my mouth. All except the doctor and 2 residents just turned around and walked out. Rich said, "Yeah, I'm kinda tired." The oncologist said he understood and he would come back later. I went out to the nurses station and instructed them I only wanted the doctor in there - no one else. The nurses completely agreed with me and said doctors sometimes just don't think. When I came back into the room Rich asked me if I got in trouble and I told him of course not.
Whitey was at our apartment getting ready for the bed and other medical equipment to arrive. I was starting to get the feeling Rich was not going home. I called Whitey to let him know there was probably going to be quite a wait and I thought he should come to the hospital. I was afraid to tell him of my suspicions. Over the next hour or so, Barry came in from Seattle, Mike Nee arrived with his infant son and Whitey got there.
For some reason I was outside Rich's door and the oncologist from earlier approached me. I didn't want to hear about how grave he felt Rich's condition was. I knew all the doctors gave up on him. I simply chose to not believe them. He kept saying I need to understand, I need to understand. I told him I didn't appreciate how condescending he was and asked him if I looked like I was in denial. The only thing I wanted to know was would Rich be able to come home. He said, "You need to understand it is very likely Rich will pass away today" and they could better control his pain if he stayed. I agreed he should stay, but when he asked me about what procedures they should take if he coded, I told him I wanted them to do everything possible to save his life. I went into the waiting room with Whitey, Mike and Barry. I told them what the doctor said and the four of us cried together. They began making phone calls to tell everyone to come to the hospital. I wished for our miracle.
I went back into Rich's room and laid my head next to him. The doctor hadn't said anything to him, yet he said to me, "Den, let's not make any predictions - let's just think positive." I stayed next to him and prayed for our miracle. Several people slept in the waiting room that night. I'm not sure if I slept that night. I just remember listening to his breathing - praying for it not to stop.
Tuesday morning Kathy and Kelly asked the nurses for a cot to put next to Rich's bed so he and I could be close. I cuddled and caressed him the entire day. I must have said, "I love you" one thousand times. With everyone who came into the room Rich tried to hold a conversation. He said such things as: "...sorry this is so awkward...", "...I'll be in touch...", "...thanks for coming...", and "I love you."
I don't necessary think he was hallucinating, but he was doing a lot of rambling. We were joking that even his delusions were technical. At one point he was talking about the break down of compounds.
Throughout the day he kept mentioning 2 guys in the room. He would ask me if they were still there or who else was in the room. When George and Todd were leaving Rich said, "yeah, I'm done with you two." He immediately realized they thought he was talking to them. He corrected with, "No, not you guys - you guys are cool." I was wondering if he was seeing angels. I made the mistake of asking him that and he gave me a dirty look and said no. But, I think the 2 guys were angels and it scared me he didn't want them there. Now, my biggest fear was his fear.
I tried so hard to comfort him. He said he didn't know what to do and he needed some assurance. I told him to rest and to do what was comfortable. I assured him he didn't have to worry - that I would take care of everything.
I sang the Barney song to him because we always sang it to Madi. He laughed at first and hummed along. I must have sang it too many times because he eventually shhhhhhed me. He asked me to give him a run down of why I needed him. I gave him an extensive list of the reasons why I loved him. I told him, "I love the way you make me laugh hard from my belly everyday; I love your creativity, sensitivity, compassion, sweetness, shyness, modesty; I love what an extraordinary father you are; I love the way you order a coke and a coffee at the same time; I love how thoughtful you are; how perceptive you are; I love your super long eyelashes; I love the way you tease me; I love that you put up with my snoring (he even tape recorded me once and when I woke up he said, "I have a little something I want you to listen to." There of course was more to the list, but you get the idea. He laughed so sweetly while I told him.
I tried so hard not to cry in front of him. When I did his medicated eyes became so big with worry. I didn't want him to worry. I cried to God in the bathroom that if he wouldn't heal him at least let him not be afraid. As I said to him, "You rest", I screamed (in my head) NO!, NO! Don't leave me - I need you!. He asked me why I was saying no. I couldn't believe it - did he read my mind - I was careful not to say it out loud.
Throughout the day Rich would say he wanted to go home. It broke my heart every time he said it. I was getting confused. I had told him earlier he could have anything he wanted. How could I deny him this simple request? I kept explaining the medication would keep him comfortable. But, I couldn't help but think maybe he would me more comfortable at home. I just wanted to make the right decision. I screamed for our miracle.
For some reason Rich took off his hospital gown. I was surprised that his t-shirt was already off - a nurse must have helped him with that earlier. The removal of the gown is puzzling to me because he didn't like to be naked. People were still coming into the room to see him. I've been searching for some profound reasoning for this act. Kelly thinks that maybe he wanted to leave this world the way he came in. Of course, he was covered with a sheet. He was still concerned about his bum hanging out!
Once when Grammy was in the room he looked up at her and said, "kiss" and puckered up his lips. His mom was shocked and delighted. I thought this was such a sweet gift he just gave to her. But, if you knew Rich - you know how sweet and thoughtful he was.
At around 8:30 pm he was very uncomfortable. He wanted to reposition onto his side. I was trying to help him, but he was so heavy. Finally, we got him slightly turned. He was so out of breath - I asked him if he wanted the oxygen. He did. He was struggling so hard for breath I wasn't sure if he'd catch it again. It probably took about 20 minutes before he was breathing normally again and took off the oxygen.
I laid beside him with my head on his chest. I kissed and caressed him and told him how much I loved him. At about 9:00 he perked up and said to me, "Deni, I don't have much time. I need to see my parents, my brother and Madison." I leap from the bed told him to hold on and ran from the room. I ran down to the waiting room crying. His parents were already on their way. I scooped up Madi and screamed to Matt he wanted him. We entered the room and Rich spoke to Matt first. I'm not sure what was said because I was with Madi, but I did here a Star Wars reference. His parents kissed him and thanked him and told him they loved him and to rest. Madison was amazing. Rich looked so sick and thin and discolored I thought she would be afraid. She patted his chest and kissed it over and over then said, "Night, night daddy, you rest. I love you."
Ever since Madi was born I felt she had a sense that he couldn't stay with us for very long. It may sound strange, but they had a unique relationship. I never saw so much love between two people. I was intrigued by them. They were so beautiful together. When Rich would leave the room a horrible sadness and frantic behavior would come over her. I t wasn't separation anxiety either. She didn't seem to mind if I left the room. I would cry to myself and wonder if she knew something that we didn't.
I yelled to him, "Come to me in my dreams - come to me tonight." He said he would. Those guys left the room. Rich wanted the lights out. We laid together. He had two pain patches on and was receiving 2mg of dilaudid intravenously every hour. But, he spoke to me as clearly as he did everyday for the past 10 years. I told him what a wonderful father he is. I promised him I will be a good mom, that Madi and Ethan will be well adjusted, and that they'll be sweet and compassionate just like him. He said, "I know, I know." I told him I need him to watch over us and to help me and to me make good decisions. He then said "Deni, I love you so much." He then said, "I'm already dead - my body is dead." I cried and touched his face and said no. He told me, �This cancer sucks." I told him I was so sorry I couldn't help him and I would trade places with him if I could. He did not like that comment. He furrowed his brow and shook his head no. "Where am I going?" he asked. "I don't want to hurt."
I said, "You're going to heaven, you're going to be with Jesus and angels and you'll be able to see Madison." He said, "I know."
I got really scared because I thought he was afraid. But, the more I think about it - he was telling me where he was going and that he wasn't going to hurt anymore.
What happened next was truly amazing. He said, "Deni, I need you to let me go in peace." I told him I would be brave and he could go. He said, "You need to let me go." Again I told him I'd be brave and he could go. He said, "I need you to leave the room." I cried and told him that I could not leave him. He said, "That's not letting me go. I need you to leave the room and give me five minutes'. He said, "I love you, I love Ethan, I love Madison." Through my tears I told him I loved him and he was so brave and to come to me in my dreams. The last thing I said to him was, "I'll see you tonight." He said okay. I did as he asked. I cried for our miracle.
I stepped outside the door and blocked it with my arms and legs. I thought I would lose consciousness. Suddenly, a peaceful calmness washed over me. I think Rich passed through me. For a brief moment I felt everything was going to be okay. My 3 sisters were waiting to embrace me and I went to them. We went into a small room with a few other people and I told them what just went on. I was terrified to go back into the room. I was so afraid to see him gasping for air and still in pain. But, I wouldn't let anyone else, like the nurse, go in either. I probably waited about 15 minutes.
I went into the room and he was still and quiet. I laid next to him and held him and kissed him. I expected for him to start talking to me. He was slightly leaning to his right. I stayed with him for a few minutes, but I knew the medical staff needed to know he was gone. The nurse came in and listened to his heart. She looked at me with tears in her eyes and told me she was so sorry. Then a doctor came in to check him. I wondered what happened to our miracle. Didn't we deserve it?
Rich saying, "I love Ethan" before he passed away is special to me. I had a feeling that I pushed that name on him. I chose the name because I liked it and when I looked up the meaning - it meant strength - which was exactly what we both needed. But, when I first asked him about it he said, "Add it to the list." I asked a couple hours later he said, "It's not revolting." A couple hours later I asked again and he said, "It's fine." I asked one last time and he said, "Let's think about it a little more" - but we were out of time. Plus, I was afraid he was so sad about not meeting the baby that he was in denial about him. So, for him to say he loves Ethan was his way of telling me he agrees with the name and alleviated that guilty feeling I had - and indeed he loves Ethan and will watch over him.
Since Rich's death the small things are the hardest to deal with. I cried at a restaurant when the waiter asked Madi where her daddy was. I cried at the Social Security office when I had to answer the question - "On what date did your marriage end?" I cried at my prenatal appointment because I didn't know what to write for my emergency contact person. I left it blank.
I wear his rings, his coat and his cologne. I sleep on his side of the bed with his hospital gown and some shirts he wore not too long ago under the pillow. I write, "Deni Loves Rich" in the steam on the mirror in the bathroom after a shower. We used to always leave each other notes there. I search the air for the smell of jasmine because I read when angels are near it smells like jasmine. Sometimes I think I smell it and it makes me feel better. All through this ordeal Rich was so worried about me. Both at home and in the hospital he would wake up suddenly and ask me if I'm okay. He was in fact selfless.
I find myself dealing with guilt - even though I'm grateful we got to say good bye the way we did. Some say that was the miracle. I'm not ready to believe or accept that. I feel guilt because I have to get rid of his little white Gulf he loved so much. But, I'm grateful to look into my child's face and see her father's gentle eyes. I'm grateful when I feel Ethan moving inside me. I know he is going to be exactly like Rich. I can't help but to cry and ask why do I get to see Madi's smile and hear her laugh and touch her soft skin and Rich doesn't? Why do I get to experience the birth of our son and Rich doesn't? This is my guilt. I guess it's survivors guilt and I probably need a therapist. I need someone to explain to me how this could happen to such a wonderful person. I need to be assured he is not lonely or sad that he can't be with us. I can't bear that thought. I'm still so worried about him. If it wasn't for Madison and Ethan - I don't think I'd want to wake up ever again. But, I promised him I'd take care of them and be a good mom. Phil gave me a Reiki treatment the other day. I think it helped. I'm going to a healing group at the Open Mind on Sunday. (February 1st) I'm going to try hard to heal for my children. This is the beginning of a spiritual journey for me. I was never religious or spiritual before. But, there was something extraordinary in that hospital room with him. I need to find out and believe in what it was. I need to believe he can see us and guide us. I need to believe he'll be in the delivery room with me. I need to believe he'll feel the joy of our son's birth. I need to believe his soul is waiting for me and we'll be together again. I need to touch him, smell him and hear him laugh. I need to kiss him and tell him how much I love him. I feel there has been some colossal cosmic mistake.
Phil told me one of his favorite quotes is, "Religion is for people who believe in Hell - Spirituality is for people who have been there." This is now one of my favorite quotes as well. I am honestly in Hell.
When people ask me how I'm doing, I smile and say, "I'm okay." I hope someday this will be true, but right now it's a lie and I don't feel I'll ever be okay again.
I don't feel like "why me?" or "why do I have to raise these children alone?" I feel - "why do I get to and Rich doesn't?" I don't need success - I don't need fame - I just need my husband...it's not fair.
