Monday, February 27, 2006
There were so many people at the visitation on Friday night. People I hadn't seen in years were there. Family and friends from near and far--Wise County, Richmond, Roanoke, Indiana, Ohio, North Carolina. There were so many beautiful flowers with dragonflies in almost every arrangement. Many beautiful gifts and cards. We had a photo slide show playing so people could see what he was like.
The whole night was rather surreal too. People after people after people. Theo lying in his little coffin. The day before, we had gone to see him at the funeral home and it wasn't anywhere near as difficult as I thought it would be. As soon as we saw him, we just knew it wasn't really him. It was like a statue of him. A Theo look alike. I have seen a lot of dead people in my life, and I am always struck by how different people look without their spirits. Without themselves inside the body. It's amazing really. I wrote a story for one of the kids I work with who had lost both of his grandfathers to help him understand death better and in the story I talked about how our spirits leave our bodies just like we walk out of our house, or a car leaves a garage, or we take our clothes off at the end of the day. And it is so true. Our bodies are really nothing but a house for our spirits, our true selves, and as soon as we are gone, the house is really nothing. Knowing this and seeing it plainly in front of me made it easier to see him lying there. Not easier for him to be gone, but easier to be with his body. He was completely gone from it. It wasn't quite the same as when he was here with us right after his death. His little body was without the Theo spirit, but it hadn't quite started to change so much yet. When our nurse Donna came over she said, "This might sound awful, but I've seen a lot of dead babies and he is the prettiest one I've ever seen". And he was. He looked so peaceful. Really as if he were sleeping. People always say that about dead people, but I don't think it's usually true. They look that way at first glance, but if you really look, close up, you can tell that they aren't sleeping at all--they just aren't there. By the time the funeral home people came to the house to get him, around 7:00 p.m., I could see his that his little body was already starting to change. Blood was pooling in the veins of his little ears, which were mostly purple by the time we saw his body at Carty's funeral home in Wise (we tried to cover his ears by pulling his blanket up around them). He had gotten very cold by 7:00. I covered his little hands in his mittens and wrapped him up tight in his blankets. I carried him out to the van that took him away for the last time. We had spent time with him just after he died, held him, gave him a bath, dressed him. That was a very special time. I was also thankful that I was able to arrange his blankets around him and put his little rosary in his hands at the funeral home. Being able to do those things for him, bathe him, dress him, make his blankets and things nice--those things were very important.
The funeral service itself was beautiful. Jamie and I read letters to Theo, my aunt Nancy read a "Etude Realiste" a poem by Algernon Charles Swinburne and a story written by my aunt Dolly who could not be present for the funeral. Jamie's sister Meg read "Goodnight Moon" which I read to Theo almost every night. The music was beautiful, played by Kim Wright who also sang "Bright Day" a song written by Virginia musician, Terri Allard. I will post all these things, my letter to Theo, poems, stories, lyrics, on the blog a little later in the week. Thank you everyone who came to the visitation and the funeral to show your love and support for us and for Theo.
The weather was nice, not too cold, although it did get a bit chilly on the mountain at the graveside. We had a balloon release while everyone sang "I'll Fly Away" together.
There were lots and lots of stuffed animals. I haven't counted them yet. My dad brought a lot back in his car and my cousin is boxing up the rest to send this week. We will be donating these to the Pediatric Intensive Care Unit and the Pediatric floor of VCU's medical center (formerly known as MCV) where we spent a long, long four weeks.
We also want to encourage donations to Noah's Children non-profit pediatric hospice and palliative care program. They have been so helpful and supportive to us. While donations to other cancer research and support organizations are wonderful as well, I know that I hope for families in our position to conttinue to have the opportunity for the help and support of such a wonderful organization as Noah's Children. Knowing your child is dying, going through the emotional upheaval, the fears, the uncertainty, the awkwardness of not knowing who to talk to, or what to say, feelings of alienation, devastation and heartbreak, are alleviated somewhat by people who know how to help. Dawn, our Noah's Children social worker and chaplain, was there for us when we needed her and continues to be. They follow their families for at least a year following the death of the child, offering whatever help is needed, to whatever degree the family needs, whether it's a listening ear, someone to help with planning for the funeral, guidance through the dying process, whatever is needed, at any hour. Their services are invaluable and the organization depends on donations. No child needing their services is ever denied care. Please visit their website at: http://www.ivna.org/nc.html
We are doing ok. It comes in waves. We'll be ok and then just start crying. Or see a picture of him and just miss him so much. I pulled out some pictures my friend Pam took of him that she included in a card and was just struck by how beautiful he was and how much I miss him. It hurts so much to think about never seeing him or touching him or holding him ever again.
We stopped Sunday night in Roanoke and spent the night in the Marriot in a room with a king sized bed and a big sunken jacuzzi tub (right in the room), took a long soak, ate sandwiches and cold fried chicken in bed and had a nice night together. We were both just exhausted. I really wanted to take a long, hot bath. When we asked the guy on the phone if they took animals (our dog Chloe was with us), he said they only allowed service animals. I said, "What about seizure dogs?" (cause no way could she pull off trying to pass as a seeing eye dog!) He said, "What are they?" and I said, "Dogs who sense a seizure coming and let you know so you can take medication or sit down, get prepared". He replied, "Do you have papers?" and I said, "No", and he said "Is the dog marked?" And I realized, I didn't know enough about it to pull it off and said, "No, we don't have papers and she isn't marked, we are coming from our son's funeral and didn'e expect to need to stay the night. We have three more hours to drive to Richmond and we are just really tired" and he paused and said, "She should be ok, just use the side door". We had a really nice, relaxing night and I think Chloe liked it too.
Today Theo has been gone for one week. In some ways it seems like a long time and others, it hardly seems like one day. Now, I am going to bed. I wonder when we will ever feel rested.
I will post again soon and share some of the letters, poems and songs from the funeral.
Tuesday, February 21, 2006
Thelonius Luther Helbert Fueglein, 9 months old, died peacefully at home in Richmond, VA on February 20, 2006 of a brain tumor. In his short time with us, Theo touched untold numbers of people. In knowing him, his family and friends experienced love and compassion that will resonate throughout our lives.Theo is survived by his parents Karla Helbert and Jamie Fueglein, his grandparents, Luther C. Helbert and Dyanne Helbert, his great-grandmothers Virginia Helbert and Betty Wood, his aunts and uncles Meg and Erich Faber and David and Julie Fueglein, many cousins and extended family. His paternal grandmother Marge Fueglein passed away the day before Theo's birth. Theo's parents are very grateful to friends and family who have supported us throughout. We also would like to extend warm thanks to Theo's nurses, doctors and caregivers who provided excellent care and support.
Visitation hours will be held at Carty's Funeral Home at 1621 Norton Rd. S.W. in Wise, VA on Friday, February 24 from 6:00 p.m. to 9:00 p.m. Services will be held in the funeral home chapel on Saturday, February 25 at 1:00 p.m. followed by a short graveside service at Colyer Cemetery. Flowers or stuffed animals are welcome. All stuffed animal gifts will be donated in Theo's name to VCU Medical Center's pediatric intensive care unit. The family also encourages memorial donations in Theo's name to be made to Noah's Children pediatric hospice program. Donations may be sent to Noah's Children, Office of Gifts & Contributions, IVNA, 5008 Monument Avenue, Richmond, VA 23230.
Friends may call on the family at the home of Dyanne Helbert in Norton, VA. A memorial service will be held in Richmond, VA at a later date.
Sunday, February 19, 2006
This is by far the worst time yet--except for maybe back in the early days when we didn't know what would happen from minute to minute. Waiting to hear from the surgeons, watching the chemo administered, seeing him in pain. The last several months have been so much more peaceful, sharing sweet times with him, seeing him resting, comfortable. Now he is just in something like pain, constantly agitated, uncomfortable. We are keeping him sedated most of the time with the chloral hydrate. I don't know if he knows it's us anymore. I know he knew us for a long time, up until just a few days ago, even when the doctors thought that there was no way that he should be able to have any kind of recognition of anything at all. But now, other than on the most spiritual level of feeling, I don't know if he knows we are here. I have to believe that he feels our love though. He feels that.
This waiting and watching is among the worst things we have experienced yet. As long as he is peaceful, it wouldn't be as difficult. But at times, he even has labored breathing and wheezing even knocked out on the chloral hydrate. We are, again, just watching and waiting. I will be home tomorrow. We are taking each day as it comes. I will keep you posted.
Please continue to pray for us and most of all for Baby Theo, for peace and calm and relief from suffering.
Friday, February 17, 2006
Here is one of Theo's very first pictures. This is him on his first morning after his birth.
His daddy brought him this premiere birthday cake.
He isn't doing very well right now. We are still having a lot of problems controlling his agitation and discomfort. We are basically keeping him asleep most of the time so he doesn't cry and struggle. Jamie talked to our nurses and doctors already this morning. They are coming to the house this evening to observe him and try to come up with a better plan. We just want him to be comfortable. I don't want him to be asleep constantly though. The chances that he will go in his sleep are high and I feel ok with the thought of him going during the night, even if we aren't awake, but I would like to have time with him during the days and I don't want either of us to be away from home when it happens. I am worried that I won't be there. Jamie is worried that he won't be there. We are both worried that we won't be there. It is very important to both of us to be with him when he goes. Even if we are asleep when it happens, we will have been near him. I know we can't control the timing, but his being asleep all the time increases the chances that he could just go at anytime, day or night. I know that sounds silly, he could go anyway, day or night. It's just that during the days, one of us is always gone except for on the weekends. I still have to go to work three days a week and Jamie has to teach on Tuesdays and Thursdays.
I want to be home with Theo, but I also know that I will have to take off time later. It is a really terrible situation. I can't take FMLA (family medical leave act) time because I used all of my allotted 12 weeks per calendar year for maternity leave. I have to rely on my accrued PTO (paid time off) and I know I will need to use it later for his funeral and afterward for a few days. Plus, I feel a lot of pressure to get things done at work before I have to go out. I just feel so conflicted--If I take off now, how long will it really be before he goes and then how long will I need to take afterward? It's just awful. And without FMLA, I can't take off more than two weeks.
I have been thinking a lot of last May when I was getting ready to go out on leave before he was born. I was frantic to get things done and ready for someone else to monitor while I was out. Even though I had a due date, I didn't really know when he was coming and I felt like I had no control over what was happening. Now I don't know when he is going and I feel like I have no control over what is happening. The parallels are not lost on me.
In addition to everything else we are dealing with, one of our cats was badly hurt last night and I had to take her the emergency vet. We thought she had been hit by a car, but the vet said she was attacked by a dog or other animal, she was covered with saliva and blood. We didn't hear an attack though. She must have tried her hardest just to get back to the house. We found her meowing outside next to my car in front of the house. She had several injuries and was exhibiting neurological difficulties, unable to stand or focus. Luka was put to sleep peacefully at around 9:30 p.m. She was purring as she went. She was very old and had a good life. For us, it was just very sad and one more awful thing to deal with. Jamie stayed home with Theo and our neighbor Wendy went with me for support. The vet gave us a paw print with her name imprinted in clay. She is to be cremated and her ashes spread over a farm in Hanover county this weekend.
I will continue to keep posting updates about Theo. If you haven't checked the blog in a while, please read the next couple postings. I have shared some special things in the last couple posts.
Wednesday, February 15, 2006
There are a lot of other options that we can look at to help him with control of agitation and pain if this doesn't seem to do the trick. I hope it will though. The difficulty of this already barely tolerable situation is multiplied a hundred fold when we have to watch him cry and squirm and be in a state of agitation/pain--whatever it is--and be unable to offer him any comfort. We feel even more helpless and heartbroken. We want him to be as comfortable and peaceful as possible throughout this process.
They say that he doesn't feel or percieve pain like we can, but they can't really know what he feels or experiences. When he cries and arches his back and moves his arms in jerky motions over and over and breathes in that stridorous way, there is for certain something wrong and it doesn't feel good to him, so, we hope this will help right away.
I want to share another story with you. Not everyone knows about our experience with the dragonflies so I wanted to write about that. This whole saga began on a Saturday morning in August (if you want to read about it in detail, go to the archive section and click on August and scroll all the way down to the first entry). We were with him at the hospital all that day and evening, finally leaving around midnight to go home to sleep some. We live only a few miles from the hospital so, we felt ok about going home for a few hours. We got up very early Sunday morning to return to his bedside. The sun was shining and everything was kind of still like it is in the early morning. People were still at home, having breakfast, getting ready for church, sleeping late, doing Sunday morning things, and we had the streets to ourselves. We stopped at a light on Leigh Street and a dragonfly flew over to the car and hovered at the windshield. I said, "Look at that!", as the dragonfly bounced up and down. He seemed to be looking in at us. The light changed and we drove on as he flew up and away. At the next light, he flew over to the windshield a second time. It seemed as if he was following us.
Later that day in Theo's room on the 7th floor, I was gazing out the window, which I did a lot when I couldn't stand to look at my baby lying in the big hospital bed, hooked up to lines and machines, in pain and suffering. As I looked out at the city and the sky, a large dragonfly flew up to the window and hovered there. He began to bounce up and down and once, he bounced right off the big glass window before zipping off. I was astounded. That window was pretty high up. I thought then that the dragonflies must mean something. Jamie teases me about how I think everything means something, but I knew that this wasn't some random flight of insects. The thought of Jamie's mother, who had passed away as Theo was being born, came into my mind and I wondered what that meant.
I started seeing dragonflies everywhere. They followed us each morning as we drove to the hospital for about a week, bouncing and flitting against the glass when we came to stops. After about a week of steady stop light appearances, they tapered off and only appeared a few more times on drives to the hospital. But it seemed dragonflies were showing up all over the place; our nurse wore a scrub top with dragonflies on it, my mother showed up at the hospital wearing a dragonfly t-shirt, a friend came to visit Theo with rhinestone dragonflies on her sandals. There was a pretty, colorful dragonfly tabletop nightlight on sale at the gift shop. I purchased it to light up Theo's room at night. I put it on the wide ledge of his window and we were able to see the colored lights from the street and blow him a kiss from the sidewalk.
After I returned to work, following his first week in the hospital, I was out with my friend on our lunch break when we decided to stop into a clothing store briefly before returning to work. As I pulled into a parking spot, a huge dragonfly, the biggest I've ever seen, flew over to the windshield. Pointing, I said, "Look!" He hovered there for several seconds as I relayed to her all the previous dragonfly sightings. We were in the store maybe half an hour. When we returned to the car, the dragonfly was still there flitting around the car. I stopped near the car door and he hovered in front of me, slightly above my head. He was only about 2 feet away. I felt that I could reach out my hand and he would land there. But I stood very still looking at him. I could see the light bounce off his silvery wings as they fluttered. His body was huge and shimmered blue and green, the color of peacock feathers. His big round multi-sectioned eyes were orange and shiny and I thought I could see the many reflections of myself repeated there. He appeared to be looking right at me. I said, "Hello." and he just continued to hover, as if he were waiting for something. I told him, "I'll be going the hospital this afternoon" and at that, he flew upward, bounced in the air a few times and then bounced over to Jessica and back toward me as if to say, "Who is this?". So, I said, "That's Jessica. She's my friend". Then he flew away.
A few days later I did some research on the internet and found that dragonflies have rich symbolism in many different cultures. In some Native American mythologies they represent the spirits of the dead and also stand for transformation and metamorphosis. Their presence can signify renewal and rebirth as well as instability and change. In Zuni myths they are shamanistic creatures with supernatural powers who bring messages from the gods, traveling freely between the physical and spirit worlds. Japanese samuri frequently wore representations of dragonflies on their helmets to symbolize swiftness and strength. I still don't know exactly what the appearances of the dragonflies means, but I know that it felt magical to me and gave me a sense that we were being watched over, guarded and protected. I also felt a sense of wonder and peace when they appeared.
In some ways, to me, Theo is the dragonfly. I will never see another dragonfly, in nature or art, or anywhere else, without thinking of him. To me they represent his strength, his beauty, his delicacy and the power of his spirit. They remind me of the changes we have all gone through along with the great wonder and beauty we have experienced throughout his life. So next time you see a dragonfly, please think of Theo and send out love to him and all of us.
Love to everybody--
Friday, February 03, 2006
We went yesterday for an MRI to check on the status of the tumor. The day went much more smoothly than the last time. The nurses remembered us and the radiologist who spoke with us this time didn't know his history, but was so much more open and compassionate and interested and didn't make us feel like numbers in a system. Also, we fed Theo his breakfast and gave him all his medicines so he wouldn't be hungry and miserable. When we first got there they asked when he had last eaten (which was just a couple hours before) and almost made us wait four more hours, but Jamie talked to the doctor and explained that Theo gets chloral hydrate at bedtime every night, usually right after his last feeding, and then they didn't have a problem going ahead. We didn't have to wait at all and the whole thing went really smoothly. We went to the hematolgy/oncology department after that for our appointment with them to review the scan. All our oncologists were there and also Dr. Ty, the neurosurgeon who works with Dr. Ward and who put Theo's shunt in. We hadn't seen Dr. Ty since before we were originally discharged in September. He reviewed the scan with us. The tumor has grown considerably and is now the same size it was when it was originally diagnosed in August--6x6 centimeters. It's very different though now because the tumor is surrounded by very large pockets of fluid. At the last scan, there were a few small pockets of fluid near the tumor growth, but now it's a large mass of tumor surrounded by a big pocket of fluid. The midline of the brain has shifted over and basically the whole right side of his brain is now taken up with the tumor and the fluid. Because of the atrophy of brain tissue--there is basically no healthy or normal brain tissue--the tumor and fluid have been able to expand considerably. In other words, if his brain tissue was normal, the tumor would have already killed him at this point. As the tumor continues to grow, it will eventually begin to press on the brain stem which will depress his breathing and most likely he will go to sleep and not wake up. He may also have a seizure which could result in death. The doctors raised his phenobarbitol dosage yesterday to hopefully counteract any seizure activity that may occur. We think he had a seizure on Wednesday. He just kind of "froze"--stopped moving, breathing, eyes staring off--for about 15 seconds. When Jamie nudged him, he snapped out of it. Shortly after that, his eyelids and eyes began twitching for a few seconds. He hasn't had any more episodes like that, but we raised the phenobarb anyway and if he looks as if he is having any seizure activity we will give him a dose right away and some ativan which is also prescribed frequently for seizure in addition to relief of agitation. They said that he doesn't have a pain perception like me or you and probably doesn't experience pain at all. But when I told them about how he gets really mad when I open his hands or how he cried when I accidentlally nipped his finger cutting his nails the other day or how he clearly knows the difference between me and other people (he is much calmer and content with me and he knows when Jamie holds him too), they were really surprised. So he is still "there" on some level. But, the tumor continues to grow. At this point, nobody knows how long Theo may still be with us. He could go anytime or it could be a month or two. Not more than that.
Even though we knew what the image would show, it was hard to see it and hear it. It's like it just takes us one step closer. I know he is going to die, I will just miss him so much and I just wish that none of this had ever happened to us. Which is pointless, but I can't help it. It's isn't that I can't accept it, it's just hard. I don't want to have to accept it. I feel very peaceful about Theo and this whole situation on many different levels--it's just on other, selfish, mother levels, I just want my baby back and I don't want him to die. Even though I know that is what is happening.
I had an experience in the hospital with Theo back in September, just after we found out about the damage to his brain. At that time, about a week before we were discharged, they found an infection in his blood. They were waiting to get the test results from cerebral spinal fluid to determine whether the infection was in the shunt or not. If not, it could be simply treated with antibiotics, but it if it was a shunt infection, the treatment would involve more brain surgery. One procedure to remove the shunt, and then another to replace it, putting a new one in the opposite ventricle (which had already undergone the insult of the intial tumor resection). We discussed it and decided that if the infection was in the shunt we would choose to forgo the treatment in order to avoid more surgeries to his little brain. After we knew that his brain was so damaged and his quality of life in the future would be so compromised, avoiding any more pain for him was our whole goal. That was our reasoning behind the decision to discontinue the chemo and any further brain surgery. But to not treat the shunt infection would be to determine that he would die within the month. Without treatment, the infection would grow to a case of ventriculitis resulting in death in a matter of weeks. Jamie had gone home for the night and it was late. I sat next to the bed with my head on the mattress near Theo's head. I felt that we had made the right decision, it seemed right to me, but I still had some doubt and fear. I was talking to Theo and saying that I hope we were doing the right things for him but I just didn't know. And in a moment of quiet, I felt and heard a little voice in my head and I knew clearly that it wasn't my own voice. He said "It's ok Mommy, I am ok. I have done what I came to do and whatever you decide is ok with me. I am ready to go", and I felt this great wave of love and peace wash over me and I knew that he would be fine and that we had unquestioningly made the right decisions. I also knew then for certain that I had agreed, before either of us were born into this life, to bring him into the world at this time and to be with him through this because this was what he needed to do. This is his path and I agreed to walk it with him. As much as it hurts now--I have asked both him and God, "Why?" so many times--Why couldn't he have grown up, lived a life--he could have done great things, been such an incredible person, a teacher, a leader--I know that I did make an agreement with him and that all of the pain and hurt that I am experiencing now stems from my own needs and desires and my attachments to him. None of which I am condemning, it's normal--I can't get around having those feelings, he is my child after all. But I also know that he is already a great teacher and he has already touched so many people's lives--more than many of us do in a whole long lifetime. I know that he and his life will continue to touch people even after he is gone. I think that is also part of my agreement with him. I know that all he required in this life was the time he spent in the womb, this short time in this physical body and then he is going on to something else.
Not necessarily something better--just something else.
I can't stand when poeple say "he is in a better place" of people who have died, to me or to any parent who has lost a child. To us, there is no better place than here in our arms. But I also know that I will see him again. None of that makes this easy. I am grateful that I am able to keep an open heart, that I don't want to hold him here at all costs, that I want him to go on to his next big thing. Because of that, this process has held many beautiful moments for all of us and has been easier than it may have been otherwise. But I would trade every good thing that this experience has brought and will bring in our future, to just have him here. To be a regular mom who yells at her kid for stupid stuff, who makes mistakes along the way, who gets mad over little things, who feels bad that maybe I didn't do it right (whatever it is), who has to deal with normal kid stuff, who gets to see him grow and play and get into trouble and learn from his mistakes, and fall in love, and graduate and get a job--and all those millions of things that people see their kids do. But I have also been really lucky to have had the time we have with him. Lucky to have known him and to share my life with him even for a little while.
Anyway, I really just wanted to share that--only a few people know this story and with the news of the MRI yesterday, I hope that in sharing it, it can help others to know one more special, beautiful thing about our baby Theo.