Doing the impossible.
I've been supposed to start making funeral arrangements but I just can't bring myself to do anything. I often stop and think - I should go and look at the cemetery, I should ring around the funeral places and get some info. I won't be able to deal with this kind of stuff when it happens and I wouldn't want anyone else to do it because I want it done in my own way. But despite offers from friends to ring around for me or help in any way I just can't bring myself to do it. I think it's made even harder by the fact that Terri is stable at the moment and when she's stable I think life will go on forever. But when I stop and think about it I know that this isn't going to last and I've been told that once it takes off again it will be quick which won't leave me much time for organizing things, considering I'll be wanting to spend every minute I have left with Terri. I've never organized a funeral before. I wouldn't have a clue what to do or how much it's going to cost me. I've got a stash of money in a bank account that a friend gave to Terri when her mum died of a bt and I know the purpose of that money is to pay for the funeral but I just keep thinking - this isn't right. I can't arrange my own daughter's funeral - she's not dead yet. I just can't do it! Someone help me out here - I know it has to be done and it has to be done by me but I can't bring myself to pick up the phone. What do you say -"I'd like to buy a funeral please!" (Kerryn)
At the beginning of the summer, I too, felt I should be making plans. I didn't know what to do. I know I've said before that I'm the ultimate organizer and it would just kill me to leave all the details for such an important event as Eric's funeral until the last minute. I have lots of plans in my head, but have only written down music that I want to have played. I'm so afraid of Eric or the girls finding the information--it would be very upsetting to them at this point. I carry a spiral notebook with me with all of the important info in it (about tests, surgery, phone numbers, etc.) and this is where I will jot down ideas as they come to me.
The biggest dilemma I have is that I feel our church is too small to hold all the people who I think would come and I want a different place. Our family (including my parents and sibs) are all involved in the same, small church. My mom feels it would be better to have people standing than to have it elsewhere. I would feel embarrassed to have people standing--it holds about 200 and it's always full during the church services. Add to that camp, school, work and "cancer" friends..... Oh, well, at least I have time for now.
This is the approach that I envision in my mind. I have a good friend who is non-judgemental (meaning, she's one person who doesn't say "oh, don't think like that!"), and I've been able to bare my soul to her. In addition, I have a sister to whom I am very close. I see these two women being my life-line. If there is time, I intend to see that they both have written instructions of our wishes. (Winnie)
You will do what needs to be done when it needs doing. I know this sounds like a blanket statement, but it's very true. But do like what Honna did, write down and get out of the way what you feel you can now. Think about things you might like, singers for example, like Joyce. Make up those picture cards, like Linda did for Claire. (I wish I'd done that for Michelle). Think about stuff and write it down. But only as much as you are able. Then, when and if that time comes, you won't find yourself wondering if you remembered everything you wanted.
I confess that I didn't want to think too much about it, but the nagging thought that we would have to take care of the details, large and small, did pester me. If I could have read what others, who'd gone on before me had done, it might have been easier. As it was, we made all the arrangements: funeral, luncheon, clothes, music, graveside service, picking out the coffin and plot, etc. in the three days between Michelle's death and her service. And I spent a lot of that time in tears. (Come to think of it, it's a wonder I didn't have an accident driving myself home from the hospital after Michelle died because I really couldn't see the freeway). (Lynne)
At Justin's funeral service, someone (I never found out who) brought in a basket full of gladiola bulbs with a note attached to each that said, " Plant this bulb in the fall, and when it blooms in the spring, think of Justin." I received many notes after the service that said what a wonderful idea that was and that they had planted the bulbs. I cannot say how many people commented to me in the spring that the flower had grown and that everytime they looked at it they thought of Justin. I so appreciated that thoughtful gesture---I wish I knew who did that--and I cannot describe the feeling I had when someone would mention to me that the flower had grown and that everytime they looked at it they thought of Justin. I think sending flower seeds or bulbs is a wonderful and beautiful way to remember your child. (Donna)
On taking pictures: This was a point that I read in a pamplet written for funeral directors. It said they should consider taking photos before the funeral, and filing them away. Let the family know you have them, should they ever desire to see them. I thought it was a good idea. I know at the time of Ross' funeral, I would NOT have been receptive to this, but NOW I need to own each and every photo ever taken of the boy. If they called me up tonight and said, 'Look, we have these...' I'd be in my car before they hung up the phone... Peg... Ross' mom...
Other ideas: Things you should be allowed to do prior to the service like dressing and bathing, (maybe call it "Don't Be Afraid to Ask!"), poems worth reading at the funeral, ('Give What's left of Me Away', for instance), ideas for the 'end days', like photos, tape recordings of the child's voice, handprints, locks of hair... those cool plaster kits for handprints... things I wish I would have done...
When Maureen died, I knew that we did not want a religious service, but rather a memorial that would show exactly how much and why we grieved her death. We put together a computerized slide show of about 100 photos of her 11 years. They were pictures of her individually, or with our four other girls, or with cousins and friends. We set the slide show to music. My daughters chose "Come This Rainy Day" by Winona Judd (What good's a dollar, without your baby sister?)and "My Heart Will Go On" by Celine Dion. I chose the other song "Perhaps Love" by John Denver, my favorite singer. We also had a priest from Scotland, a family friend, read letters we each wrote to her, expressing how much we would all miss her. As everyone was coming in the chapel, we played three of Maureen's favorite Disney songs, and at the end we showed a picture of her in an angel costume (pre-cancer)and played another John Denver song called "When The River Meets The Sea" (sung with
the Muppets). (Colleen)
Scott's service sort of had two themes, the sadness of him dying, the mourning, and then we spoke of his life. There were people there that didn't know Scott and i think they got to know a little of him before they left. Five different people got up and spoke of Scott, - his teacher, my sister, 2 friends and the clinics child life specialist. The pre-service music was dylan like guitar playing and the song ' knocking on heavens door' , other music was eric claptons 'tears in heaven' , my SIL sang 'if we hold on together' it was a song from one of the 'land before time' movies. When the service was over we played Scott's favorite song-this may sound strange for a six year old but it was his favorite for years - 'The Weight" by The Band. You might have to be a '60's person to know it.(the chorus is something like 'take a load off fanny, take a load for free, take a load off fanny, and put the load right on me). We have an audio tape of the service. I've only listened to it 1 time. (amy)
You know we did a really small funeral for Kyla, a grave side service. We only invited people I felt would not expect me to cheer them up or would be bothered by my crying. At first my husbands family wanted to invite the whole town because they were "so supportive", but I told them that burying my child was hard enough without feeling like I had to be the host. We did have visitation at the funeral home that was open, but I did not go. My MIL and my aunt handled the visitation. I also did not have an open casket. My MIL (I felt) pressured me to have the casket open, but I told her that Kyla was my child and seeing her still body was very intimate to me. We allowed family members to go in privately to view her body, but no one else. Then Buck and I went in last to see her and put some things in with her. Then we watched as they closed the lid for the last time. I had to be the last one to lay eyes on her. (Juliet)
Well, I guess I was the only one with a religious service...Yikes..! We started with a song called "Goodbye for Now" followed by the reading of the Survivor Card..That lead up to a video of Lissette before she was ill. See, we moved during her treatment so people like the nurses and such didn't know Lissette before cancer. Watching that, I was able to remember that she was a lively little girl with such spunk. There is only so much you can say about a 3 year old so that is why we opt for the video. Many told us that they were thankful we did that. Then the religious stuff, as everyone called it. (Maggie, Angel Lissette's mom)
On the subject of funerals, I thought I would share Katie's. First, I think we are made to make decisions about this way too soon after our child dies. Right the next day I had to go to the funeral home and start making arrangements, when I just wanted to stay at home. But I also didn't want Katie there very long, that just bothered me at the time. Katie diedon a Friday, on Wed we had a small graveside service with just family and food at my moms house afterwards. Then that Saturday we did her memorial, My niece sung Jesus Loves Me, at the beginning, the pator read some scripture, then he read some letters that I wrote, my husband wrote one, and one of Katies cousins wrote. Then one of the boys from the high school basketball team (Katie was their maskot) and his mom sang Somewhere Down the Road. Then we did a slide show with music. The music played was "Katie Bird Song"(it was made by someone for her about her, songs of love) "God Must Have Spent A Little More Time On You by INSYNC (Katies favorite song)"I Will Remember You"(My daughters picked that one out) and a song my Gods Property called "My Life Is In Your Hands" and than the pastor asked if anyone wanted tosay anything, and we had a few people that came and said something special that they remembered. A couple that will be forever in my mind was one of her classmates, who is the shyest little girl ever, and hardly ever talks came up in front of about 300 people and said that Katie was her best friend and she was going to miss her, than she got back to her seat and just started bawling. The other one was one of her cousins who is about 10, just came up and said Well I didn't get to see Katie that much, because I live far away, but all I want to say is We Will Miss Her. Than the pastor said a closing prayer and my Niece sang "I Will Testify to Love. And afterwards we had lots of food, well everyone eles did, I couldn't eat. It was really a wonderful, we had a picture of Katie blown up and had people sign around it, still can't look at that. Well that was are service, just thought I would share since others where.I think what ever anyone decides to do is just perfect for them, I just hate that we have to be rushed into it, like we have to hurry and get it over with. (Michelle, mom to Angel Katie 2/91 to7/99)
Okay--my turn to say what we had played at Michael's funeral. At the very beginning of the service, after the minister's initial greeting and our lighting of the Resurrection candle, my brother and sis-in-law, two very talented singers and acoustic guitarists, sang this song sweetly, simply, and humbly to the tune of an old Scottish hymn, with words by John Bell: "We Cannot Measure How You Heal" Then, a little while later in the service, after a short litany of Psalm 23, my sister, who didn't want to speak but wanted to do something special at the service, choreographed a breath-taking liturgical dance performed while my bro and sil sang this one, written by a member of our church for the funeral of another little boy who died from leukemia several years earlier. Words and music by Anna Mae Bush: "He Gathers the Lambs" We finished the service with one of Michael's favorite songs: Jesus loves me this I know. Many people commented on how uplifting the service was, that it didn't dwell on the sadness, which was plenty evident, but on the joy of Michael's life, on the healing that only came through death and rebirth, and on the hope and promises of our Lord. We passed out balloons that had surrounded the church and let them fly afterwards. My contribution to the mass of religious funeral ideas that don't need to cram religion down your throat. --Beth
We had the Episcopalian Order of the Burial of the Dead Rite II and The Great Thanksgiving of Communion the focus was on Psalm 139 v1-17 for the Homily Words of Remembrance were done by my oldest son. We are a musical rock n roll family so this is where I did ask for
permission to have the band in the balcony and to have selections that will never find their way into a hymnal as our families and friends came into the chapel they heard Never can say goodbye, (they long to be) close to you, nothing takes the place of you, i'm never gonna give you up (Issac Hayes) The processional was 'These Dreams" (Heart) The hymn Nature's Way (Spirit) was before The Old testament Lesson (Revelation 21:2-7) and the music "Jesus is Just Alright with Me"(Byrds) was before the Gospel (John 14:1-6) the dismissal hymn Rock me Amadeus ... which made our family chuckle in the mist of our tears cuz we could hear how Eddie in the back of our minds always sang it "Eat me I'm a danish" (missie)
We had a religious service for Alex. But it was wonderful - no "preaching" just lots of meaningful music, kind and thoughtful words, memories of a special little boy. My elderly aunt, who has been to many funerals, told us that Alex's was the best memorial she had ever attended. In fact, most everyone told us how wonderful it was. And I have to say as awful as it all was I was pleased with everything.We played lots of Alex's favorite music: How Much is That Doggie in the Window?, theme from "Land Before Time" (his favorite movie), "You've Got A Friend in Me (Toy Story), Oh Where Oh Where Has My Little Dog Gone? Along with some others. Donny and I picked "Child of Mine" by Emmy Lou Harris, "I am a Child" by Neil Young and as the Postlude - my favorite - "Beautiful Boy" by John Lennon. We had about 15 or so songs in the service, before and after. The one thing that really hit home for all of us was when our pastor read a chronology of Alex's cancer - the ups and downs, highs and lows of his two and a half year fight That's when I was aware of people weeping - it was really emotional. And he brought it all together by saying "God didn't take Alex, the cancer did." That statement is something that we will never forget. Then Nick and his aunt handed out balloons and we had a short ceremony afterward to release them. We also handed out about a hundred of Gigi's gold pins. (Sharley)
In answer to what you could tell other parents on the Ped-Onc list, at the last minute the day of the funeral, I decided to have the service taped on cassette (not video), and I have listened to it and I'm so thankful I did that, because during the service you can't remember the words that were spoken. I also took the flowers that were on the casket from my husband and I and brought them to a florist to have them preserved in a frame with a picture of Anthony and his prayer card. I got it from the florist about a month ago and haven't been able to bring myself to put it up, but I know one day I will and have a beautiful rememberance. (Kirsten)
I am using a portion of Levi's savings bonds to fund a one-time scholarship fund for his classmates who will graduate in 2008. I am going to ask for those intrerested in the fields of music, art, medicine, nursing, child life to write an essay about how they will shine their light in the world going with the theme of doing kindness in Levi's name keeps his light shining bright. I already know it will take a few strong drinks and some prozac to get me through his graduation day so I'm planning ahead. (Gail)
Since I was pretty much bed ridden from shock and exhaustion, Roger and his brother went to the funeral home and decided on the casket. My request that she be put in a Mausoleum and buried in what she called her "party dress" because I felt she was going to the biggest party of all -- heaven. I also requested that the minister keep the service upbeat "celebrating her life, the things she stood for, and her zest for laughter and playing harmless funnies on people", which was a lot at the tender age of 6. Before everyone entered for the service, I read a book to Chelsea because that was what we did at bedtime especially and somehow I felt that I was putting her to bed. I also had them play a song at the end of the service that she and I sang to each other when it came on the radio. The service was hard enough to get through without the usual sad funeral message and I couldn't let that be the last impression/memory that people had of Chelsea...I wanted it to be that they went away knowing her better than they had. I knew that losing such a special person would be a sad enough load to carry away for everyone.
Even after almost 3 years I feel drained and stressed, and sometimes I only want to sleep a lot. Seems I can't get enough sleep, or can't sleep at all. So I pray and talk to Chelsea. (Vicki, daybyday)
I never made any decisions about Greggory's funeral until I had to. I felt that if I started making arrangements then I had given up hope. And I NEVER gave up hope, I never really believed he would die. When cancer finally won and got its way then I decided everything in the time between his death, or should I say the day after his death everything was decided. I did not want a wake, but Joe, (Gregg's father and my husband) did. so I compromised. We would have a wake but it would not be an open coffin. It was open from 1 - 2 for the immediate family and then at 2 it was closed for the viewing public.(Is that an oxymoron?) I did not want my son to be put on public display, instead I had pictures of Gregg on display. Pictures of Gregg when he was young, a teenager, a kid, a person just enjoying life. I wanted certain songs played but it was just too much to deal with at the time. If there is anything else you would like to know just ask and I will answer. (Peg)
We made arrangements that afternoon that he died (I think?) It all was such a blur. I couldn't have made any arrangements in advance, I was in too much of denial state of mind. (Judi)
I think your responses are amazing. I did not have any time to get ready for Emily's death. She died 25 days after dx. It was a whirlwind, and I think all I can say is that we did the best we could in such a short, emotionally draining time.
Our friends and family were there like a big net, to break our fall. I don't know what we would have done without them. They accompanied me to make funeral decisions, found a burial plot in the City (an amazing accomplishment, by the way, as I have since come to appreciate), arranged musicians for the service.
What my wife & I did which we both really respect now, is to write a tribute to Emily. I get shivers thinking of it. It was a great summary of her, her personality and her life. And the loss we, as a community suffer when a 9 year old is taken away so quickly and unfairly.
What gets communicated to those you love and your friends and workmates at a service, those in the community who "sort of" know you, and who show up, that seemed important to me, and was our focus. Not so much what other people think, but to raise awareness that there was an awful, awful tragedy here, that should cause us all to pay more respect to our daily lives and what we take for granted.
I let go of the physical part very quickly. Emily is not in that broken body. Her spirit certainly does not reside in a graveyard! I talk to her everywhere, and I fully expect that, on some level, she is with me at all times. (Alan)
When we knew there was absolutely no way we were going to beat Matthew's disease, we realized that we needed to make his arrangements. I knew I would not be able to deal with it once the time had come, and it had to be absolutely perfect, done my way, as I thought Matthew would like it. But it was so hard to do, knowing that he was still alive and with me, as sick as he was.
Going to the funeral home was so traumatic, but I did it. I picked out the casket I wanted, the flowers, how the service would be...I remember sitting in my kitchen, while Matthew laid on the sofa in the living room with his pain pump, watching cartoons. I was writing his obituary, trying to keep my voice normal, despite the tears, every time he called out to ask me a question. I had to. I knew that I would never get the wording the way I wanted it if I was trying to do it in the hours after his death. I didn't want to look back on this years later and wish I had done anything differently. I completed the obituary, except for the date, and gave it to the funeral director. I told him that I wanted it to all be placed in a file with Matthew's name on it, and stored away. I told him that I was praying that we would never need to use it.
I made all those arrangements when Matthew was in the picu on life support when his lungs failed from ARDS in April and May of last year. As you know, Matthew received a miracle (as I see it), as was given back to us. I really thought that it was a sign that he was going to get better. But his disease continued to progress, ending with his death on September 3rd. I was grateful that I had already made his arrangements, because I was *definitely* not in any mental state to handle that in the hours after his death. David only had to make a call to the funeral director, and tell him that we were ready to have Matthew's file taken out of the cabinet. *sigh*
I did make a few changes the day of his death. I had memorial cards with his picture designed to give out to the more than 500 people that joined us in our little church. I bought Celine Dion's CD, and had the song, "Fly", played as his casket was moved from the church to the cemetery. I bought big helium filled mylar balloons to release at the grave, all shaped like hearts, all saying "I love you". I picked the hymns to be sung in church, including "Jesus Loves Me", a popular children's hymn.
This is difficult to write about, and certainly was intensely hard to arrange at the time. However, I am very glad that I had made all the major decisions on his funeral before he died, because I didn't have to give it any thought at all after his death, and because it was done exactly right.
I spent all my time at the funeral home sitting beside my son, my hand resting against his perfect little face. Even though I knew he was gone, I still wanted to stay by his side every possible minute, every second. I was able to do that, because I had already taken care of everything.
I know you don't want to have to do this. No one does. But if you know in your heart and soul that the day will come that you will be forced to do these things, for some people like me, it's good to take care of it now. Then tell the funeral director to file it away, and pray that you'll never need to look at it again. (Honna)
When we realized David was not going to beat his cancer, I remember sitting out on the deck with my husband, absorbing the news of yet another failed treatment. All of a sudden, I started saying, "I'd like our (high school) kids to sing at the funeral. We should contact Michelle and Steve." That opened to door for us to envision what we would like David's funeral to be like. Although we never talked about it before, we were amazed and encouraged by the fact that we had both already thought of so many things, and were agreeing on so many of the decisions. We didn't act on any of those decisions until after David died. But one thing I did do was talk over these things in detail with one of my sisters, and one of my best friends. On the night David died, these two women got together and started putting things in place. You might consider this as an alternative to actually doing all the leg work yourself, and yet things would still be done your way, because someone would know your exact wishes.
We had our school chaplain come with us to the funeral home to begin arrangements there, and this helped because he could think a little more clearly than we could, and guided us gently through the process. I was actually amazed at how much energy and drive I did have to make decisions and plans around his Mass after he died. Like you, I thought I would be useless. For some reason, I wasn't. I actually found it helpful, as it massaged into my brain in a gentle way the fact that David was gone.
At the same time, however, I must say that I felt his spiritual presence very strongly. In a sense, I feel like he helped out, too.
I guess the bottom line is that you need to follow your own instincts. If you simply can't bear to do something, don't do it. Trust that it will be accomplished in its time. Even if you can talk to someone who has recently planned a funeral and get some clarity about the kinds of arrangements you wish to make, this will clear up the fog somewhat.
All you really have to do is breathe. (Joyce)
Funeral Costs | Preparing Your Child for Death | Planning the Memorial or Funeral Service | Grief Resources (links and books) | Poems and Thoughts | more Poems and Thoughts | Handling the Holidays
Ped-Onc Resource Center Home