We just got back in town this evening. We are pretty exhausted. I am very touched and grateful for the comments everyone has posted.
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.