We tried to talk to Anthony about dying, but he didn't want to talk about it. The way I got around that problem with still talking about it, in a round about way, I brought a small book with prayers for children, I would read to him at night before he went to bed, one night he said to me, that is a very nice book Mom, I think he was thanking me for the prayers and giving him comfort in thinking about God and preparing him for the place he would be going. I told him my mother was there, if he would be going to Heaven he would see her there, she would be happy to see him and be with him until his Dad and I get there someday. I told him about the white light and angels would be all around. (Kirsten)
Alex died rather suddenly. Although we expected it was a possibility and it was in the back of our minds, we kept pushing it out of our thoughts. Looking back, I wish I hadn't. I wish I would have fully accepted that when your child has cancer he/she is always walking the tightrope even if he/she is doing great. It is the nature of the beast and the beast can take you by surprise. I think many of us here on daybyday will agree. Because of this, I wish I would have talked to my son more about heaven and what a beautiful place it is. I wish I would have told him that we would meet him there and that he was not to be afraid. I just didn't have the courage and now I am wishing I did. When someone dies in a car accident, you are not given the opportunity to say good-bye or to prepare the person for death. If you have the chance to be with a loved one before death, then I think it is good to be prepared and to help the person leave in peace. I think that children feel terrible about leaving their parents. They worry about them and how sad they will be. They are not afraid of dying but worried about how their parents will feel. Whatever you can do to ease the worry and to let them die peacefully is important. I can't change the way things happened so I try not to dwell on this but if I could go back that is one thing I think I would try hard to do. (Maria)
This is a site devoted to bridging the gap between Earth and Heaven and the gap between grieving parent and departing child.
Talking about death with children who have severe malignant disease.
Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. N Engl J Med. 2004 Sep 16;351(12):1175-86. PubMed abstract.
Most Parents Don't Talk With Dying Child About Death, Many Regret It Later
By Rachael Myers Lowe
(September 14, 2004)
I can't contribute much since Chelsea's death was so sudden, and unexpected. I do have suggestions to parents though: When the doctor says try to treat the child as normally as possible, I disagree. The children are very sick and one of the fights that kept occurring between me and my husband was that he couldn't face that she will so ill and thought her feeling sick was not real (denial), where as I felt more connected on how she was feeling day to day and knew when she was well enough to go to school. My husband just kept saying that when she was over the cancer she would be so spoiled that no one would want to be around her. Chelsea never played on the fact that she was sick. (Vicki daybyday)
Despite the sadness and heartache of the impending death of their child, I think parents should be honest with their child that there is a real possibility that they might die. My own feelings were that we as parents would want to guide our child along every part of his life while living, why not get him ready for his death, too, especially preparing them for the claim of Heaven that we as Christians hold to be such an important part of our faith? We had been honest with Michael about everything since day one of his diagnosis, so when Michael relapsed and we told him just that the doctors had no more medicine or chemo to help make him better, he looked us in the eyes and said "That's okay. Some people die and some people don't.", we felt we had his blessing to get him (and ourselves) ready for his own death. One way was by reading books about Heaven and discussing and answering any questions he might have had. There are several wonderful children's books that we found:
There are many other books available, but these were Michael's favorites. We read them many times over, and wondered a lot together. We didn't beat him over the head with the fact that he was dying--I really felt he knew that for a long time before we finally realized that quality vs. quantity of life was our only decision left for his course of treatment. We simply encouraged him from time to time by saying how beautiful Heaven will be, and how lucky he was that he'd get to meet Jesus before any of us would...things like that. He felt a bit unsure about it one day and suggested that his older brother go first!
We also talked about Grampa Gerry, since he had died two years earlier, and he was someone Michael would be able to look forward to seeing in Heaven. That way Michael could feel safe knowing someone would be up there waiting for him to take care of him. We talked about how we honor the dead. As you've seen by my more recent post, we visited the cemetery. We talked about the meaning of gravestones, and Michael gave us input on that...I kept a lot of mental notes on what kinds of things Michael said and wanted. For instance, when we laid flowers on Grampa's grave, he thought it was silly. "Flowers are for girls!" When I asked what he'd prefer, he said "Balloons!" So the church was filled with gold and white balloons, which we later let go at the graveside service. We walked him through what would happen at a funeral. When told that most people are laid in the coffin wearing their Sunday clothes, once again my little boy had his own ideas and said "No way! I want to wear my 101 Dalmations shirt, my black sweatpants and my Batman socks." So be it! He did. Everyone smiled at his perfect choice! I'd really encourage parents to let their child be a part of some of the decisions that will need to be made. It has been very comforting to us to have been able to honor some of Michael's last wishes. And it made the funeral service sparkle with a bit of his 4-year-old personality shining through. Our older son Joe helped, too, by drawing the cover to the program. So siblings can be encouraged to be involved with all of this as well.
We also indulged him (notice: not spoiled him) with lots of special activities. Although he was too ill and too weak to go to a lot of places, we took all the time in the world to do what he wanted and have the things he liked to do and eat and play with close by. We planned for special visitors who came on motorcycles or in costume or playing music...things that would spark his desire to take on the day and enjoy life just a little bit more. If nothing more than Legos made him happy, well then, we played Legos all morning. My husband tried to come home from work as early as he possibly could each day so he'd have a little bit of special "Daddy time" with his son. (My older son did not get jealous in the least. I think he truly understood we were trying to make Michael's last days as interesting and as fun and as comfortable as we could. And he got to be a part of it too!)
Tell parents to videotape their child playing, or tape record them singing or laughing...it'll be wonderful seeing them or hearing them when that physical absence seems unbearable. Tell them to hold their child often, cuddle a lot, and tell him/her how much they love him/her. Let their child know just how precious they have been and how important they are in your life and possibly even how they have changed your life in a better way. Talk to them...don't pull away. They need you now more than ever. (Beth)
Greggory was 17. He was told by his Dr. 2 yrs before he died that he was going to die. He said it was just his fate, that he had no real control over it. However, he too, never gave up hope and fought the disease head on. I feel that between his hope and attitude, and the hope and support of his family and maybe a little from the chemo, is what got him those extra 2 years. He never wanted to talk about dying, or making plans. He mentioned once in the beginning that he wanted to be cremated and his ashes spread over the track, but when the time came that he gave up chemo (there goes the false sense of security) and I mentioned his plans he said he didn't want to talk about it he couldn't even think about it. We looked at each other and never said a word about it again. The only thing that Gregg was adamant about right from the beginning was that if it ever happened he wanted to be at home. And at home he was. I took care of him right to the end. It was the last gift I gave him. (Peg)
It was interesting to read the post from Beth about talking so freely about death with her son. I wish I could have done that with Anthony but.....
1. I didn't understand a lot about death myself and didn't feel I could answer all the questions he would have for me.
2. We felt that if we mentioned death at all to him that he would give up hope and his will to fight, but looking back now I'm not sure if that is necessarily true, if it's their time, it's their time.
I denied that he was going to die the WHOLE time. I've heard others say the same, it seems to be a defense mechanism that we have. Is there anyone that REALLY believed that their child was going to die???? I didn't tell Anthony anything until the day that he died. My husband made my Mom and I leave the house. We had been there round the clock taking care of Anthony, the home nurse just gave me a crash course on how to give him meds through his IV, which was not a fun procedure for me, and he felt I needed a break. So that morning I went into the bedroom he was in (we were staying at my Moms while we were in the process of moving!), and something made me tell him that he was going to go to heaven to be with Jesus, and not to be scared, and I would be with him again. He was in a comatose state at the time, and I wasn't even sure if he understood me, but I had to tell him this even though in my heart I STILL didn't believe it. I wasn't sure where all this was coming from, it was almost as if God was making me tell him this. Anyway, I'm glad I did it because he died that afternoon......and it just goes to prove how CLUELESS I was that he was going to die. (Judi)
David was well aware that he could die from his cancer. Last August, he lost a very good friend Christopher, and went to his funeral. At the time, he kept saying to me, "I know it happened to Christopher, but it's not going to happen to me." He clung to this belief for a very long time. When another friend, Alem, the son of Fran who posts here, was in his decline, David spent some very good quality time with him. I believe his connection with Alem taught him a great deal about death. And Alem was a wonderful, gentle teacher. They were "just boys" together the day before Alem's death.
David's decline was very short. To the very last day, he maintained that he was not going to die. But during the last few days of his life, he stared asking some very difficult questions, basically around "how sick am I?" I did not know how close death was, and I felt no compulsion to inform him that yes, he was going to die. But I did answer those questions honestly.
One of my lifelines during this time was a woman in New Jersey who is a therapist, who has worked with many, many dying children and grown-ups, and who herself has lymphoma. I would write to her, and she would respond, offering advice and encouragement. Basically, she advised me to go with the flow, and to keep closely in touch with David. She predicted that, sometime near his death, he would "go inward", and he did indeed, three days before his death. We made a clinic visit, and he was uncharacteristically cranky, and had a full-blown panic attack on the way home, declaring he never, ever wanted to go to that hospital again. I believe that this was David's last moment of rebellion. As it turned out, he never did go back to Sick Kids' again.
On the day he died, David asked, "Mommy, am I going to die?"
We were up in my bed. I was reclining, propped up on pillows, and he was reclining on me. My arms were around him, my hand ruffling what passed for his hair. I replied, "Well darling, I don't know what's going to happen next. But you need to know that whatever happens to your body, you will be safe, and it will be okay."
In retrospect, I think he was asking permission to die. At the time, he replied, "I want to get better". And my therapist friend had also told me that children speak in metaphors or symbolic language at times near their death. The fact that death came so quickly for David after this leads me to believe that he knew he was not going to "get better" in his own body.
"The one thing I know for sure," I added, "is that you and I are soul mates, and we can never really be separated." He nodded and snuggled. I like to think that this also gave him some peace, and some permission.
His death was so rapid and so gentle. And we were so accompanied afterward by his presence. It was more peaceful than I ever thought it would be.
If I were to advise the parents of children who are facing death, I would simply repeat what was so wisely said to me: Just go to your child. Be with your child. Think of yourself as a midwife for this transition. I believe that death is not painful for the dying. Stay open and present to the moment. Have a support team in place for the "things" that need doing. Free yourself to go with the rhythm set by the process.
And you will get through it. You will. You will survive it. And you will draw breath on the other side. (Joyce)
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