What If part 2: Funerals

Printed Materials

Fact Sheet

Fact Sheet Brochure

Frequently Asked Questions

Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

What If? Part 2
Funerals

Cremation vs. Burial, Our Experiences

Renee, Mom to Brennan age 2: We are pre-paying for a double plot for my husband and myself and a partial plot for our son. We have chosen to cremate (never thought I would go that route), because we will also be able to take home a memorial urn as well as have the rest of his remains buried next to us. If we ever move anywhere--we will be able to have a little bit of our guy with us wherever we go.

Hollie, mom to Matthew (June 14, 1999-April 9, 2004): I picked Cremation for Matthew for 3 reasons. 1 I didn’t want him buried because if we ever moved I didn’t want to have to go back to see him. 2 I didn’t want him cut up cause my baby had enough of that when he was alive and 3 he’s always with me no matter what. I even got a necklace that holds a lil bit of the ashes so if Im at home or not he’s always with me. I know some thing that’s odd but I really thought it was sweet It might just be me.

Barb, mom to Kayda (December 2, 1988-June 23, 2000): I had always believed in cremation rather than a burial for environmental and other concerns. However when I knew Kayda was dying I wasn't even willing to consider it (it was never even offered as a possibility actually). I thought that it would be important to have a place where I could go. So Kayda was buried in a tiny cemetery very near to where I live. But, apart from the first few months, I almost never go there. At first I had various things on her grave (bears for each season, angels, a plant, etc) but they kept getting stolen or broken so now I have the remains of the plant that was on her grave and other things to remember Kayda here at home. And, now it's likely that we'll be moving away in the next year and one of the hardest things to do will be to move away from where Kayda is buried. Although I never go to the cemetery I drive by there quite regularly and it's comforting to know it's there (it's down a dead end side road). So, with Trevor, if at all possible I would choose cremation. I would also like the pendant with the ash like Hollie mentioned. Erica did that too.

Kayda was buried in an outfit I’d bought when we’d gone to Disneyland almost exactly 2 years before she died. That had been a highlight of Kayda’s life so I thought it was appropriate. One person who came to the viewing commented that the outfit made Kayda look more natural rather than all formal. I also had her buried with the 2 stuffed animals that were her constant companions. I made sure the funeral home knew which arm each needed to be in as Kayda had been very particular about that.

Erica, mom to Robbie (November 18, 1995-October 27, 2003) I wanted cremation because I could never bear the thought of having Robbie away from me, but now because I do not have a place to go to visit, I feel a bit lost. I do have a locket that is a little urn, which has some ashes in it, on a chain that I never take off. It may sound silly, but it makes me feel close to him. He also went with his blanket and stuffed animal, to comfort him.

Paul, Dad to Carlos (October 28, 1993-June 16, 2002) We had Carlos cremated as well. I just couldn't bear to lock him up in the crypt, so far from home. We didn't want to face moving away sometime and not being able to visit him. We set up a lovely table with a candle and some pictures and he's in a beautiful cloisonne urn.

When we are older, we'll take him to the ocean and scatter him there....

Sandy, mom to Jonathan 18 mos. and to several who have died: I am one that loves to go to the cemetery and decorate their graves. I learned from early on that everything I place there must have their names and a message written on them in permanent marker. That seemed to stop the stealing. I've never had anything broken except by nature. Our cemetery sits on a hill and is out in the open so the wind is pretty strong most of the time and it does knock things over and they get broken. I know my children aren't really there and are in heaven but it still helps me feel close to them.

Rehan, mom to Tyson (August 2, 2002-March 27, 2003) I choose to have Tyson cremated as well. I did not want a place to go and mourn for him. That seemed so set in stone and his spirit was finally free. At first we were going to spread his ashes and to this day they are still here with us. A little toy I made him went with him, I guess so I could forever feel like he was playing with his stuffed truck. Bulldozing the clouds in heaven!:) I think in the long run having him cremated was the best, this sounds silly but I feel like it helped my daughter the most. She has been able to deal with better knowing he is all around her. On his birthday and memorial we go and feed the quacks (her word for ducks) they day he passed away she said was going to be free and fly with quacks, so that’s why we hit the pond in honor of him.

Jessica, mom to Raistlin (September 6, 1997-May 3, 2001) I think our experiences with Raistlin's death are a little different because he didn't live with us, so I wasn't going to respond. But I've changed my mind--so here's what we did.

First of all, we had no warning that he was dying. The facility he was living at did not notice him doing poorly except that the last few months he needed more nebulizer treatments.

When he died, my husband, parents and I went to the hospital to see him. My mom is a minister, so she made the funeral home contacts and arrangements for us. After we left the hospital, I went home and called Raistlin's mother. It was the worst call I have ever made, because I was still in shock, and she was also stunned.

The next day Dave and I made the funeral arrangements. We decided to have him in a little casket for his funeral, then have him cremated after that. So we gave the funeral director a special outfit that I had bought for him only days earlier, and he took care of the rest. We bought a large (and quite expensive) heart-shaped wreath with yellow and white daisies in it. My mother conducted the funeral, and we had several of the poems from the handbook read at the funeral. Apparently one of the poems hurt his mother's feelings (long story), but that was the only unexpected problem we experienced.

Raistlin was cremated in his little white casket, in his dressy outfit, and with a teddy bear that my father-in-law brought him. When we received his ashes, we wrapped the box in Winnie-the-Pooh fabric, and buried him at the facility he'd lived at since he was a month old. In fact, he was buried right outside his bedroom window. Just before the funeral, we had a small memorial service with the staff who had taken care of him.

We made poster boards of him and left them at the facility for the staff to look at. I also had some of his ashes put in a small vial, which we keep in our home. As some of the other families mentioned, that way we have a little bit of him with us always.

Each season we take a plastic flower arrangement out to his grave--they last several months and still look nice despite the wear and tear. Also, for holidays, his birthday and the anniversary of his death, we take fresh flowers and a big balloon display that can be seen from inside his old bedroom.

Our Experiences of planning the unthinkable: a funeral
There is no right time to plan a funeral for your child. Many families are told that they need to prepare for their child’s funeral before they’re even born. I’ve heard parents say how much they resented almost being forced to make funeral arrangements for a child who defies the professionals and lives. They feel that that was time away from planning to rejoice at the birth of a child. It’s not any easier when your child is older either.

However, some people find it helpful to have made plans ahead of time so that if their child’s time to go comes suddenly they’re ready and don’t have to think about it. Others just can’t face it and so leave it until after the child has died. Whatever works best for you and your family is what should be done.

Barb, mom to Kayda (December 2, 1988-June 23, 2000) I started thinking about funeral arrangements about 4 or so months before Kayda died. It had all of a sudden occurred to me, as I was rushing to her respite home because of major seizures (that stopped 5 minutes before I got there), that she might not live much longer and what on earth was I going to do. At that time, thinking of songs that needed to be part of her funeral was comforting. About 3 months after the previous incident it was becoming more and more apparent that this train we were on just wasn’t stopping. At around the same time we decided to ask for a DNR order, I was told to start thinking about her funeral. I sat down with our minister and his wife and we worked out a basic plan. It was decided that I would do the bulletin and the eulogy.

Over the weeks that followed I worked on these as I had time. I found it somewhat comforting but my husband couldn’t face it at all. I spoke with a variety of people about singing or participating in the service. I found music that I knew I wanted to have included. I didn’t focus on just these plans. I still had Kayda with me to treasure and care for. But, as I did so, often while I was doing something with her or caring for her I’d hear a song and think, “yes, we need to include that”. Through watching her as she slept and rested I knew that she needed to be buried with the 2 stuffed animals that she always held. I often thought out the eulogy and other things as the days went on.

Through talking with other families I knew that I wanted something symbolic to happen at the end of the service that could be shared by families around the world at the same time. Many people have balloon releases but I was concerned about the ecological aspect of that, and we’d always avoided balloons with Kayda due to her latex allergy. Some suggestions I received were releasing butterflies or lighting candles. There are places that you can buy butterflies to release but they’re fairly expensive and have to be ordered weeks in advance. Just how can you plan weeks ahead of time when a funeral will be? We chose the candles and had everyone sing the song “Pass it On” (It only takes a spark, to get a fire going). We walked out of the church with lit candles to carry Kayda’s light and work into the world. This was very meaningful for me. Many people we’d never met had a candle lighting ceremony with their children in different parts of the world. The accounts of these that people sent to me are real treasures now. One family lit a candle and then read extra stories to their children. As Kayda’s first love in life (until the last month of her life) was listening to stories this had special meaning.

I finished most of the plans and the eulogy the day before she went into the hospice. With the minister’s help we also found a cemetery and made some basic arrangements of that sort and chose a funeral home. I spoke with the funeral home director but decided not to make firm arrangements or go to the cemetery to choose a plot. I just couldn’t do it.

When we got to Canuck Place and it soon became apparent that this was it, my husband and I talked with the bereavement counselor. My husband expressed that he just couldn’t face the fact that Kayda was dying or her funeral. I was able to say that it was mostly taken care of. The counselor assured us that both of our ways of coping (me preparing, Dan not thinking ahead) were perfectly acceptable and ok.

After Kayda died there were still many details to take care of but the major part of the memorial services were done. Afterwards I felt very glad that I had done the planning ahead of time as the service wouldn’t have been nearly as positive and full of praise had I waited until after she died.

One of the things I did before Kayda went to the hospice for the last time, was write out a list of people that would need to be notified when she died. I included their phone #s and the order of priority that they were to be phoned in. I also noted whether they were to be called 24 hrs a day or just during the day. One note; make sure all the phone numbers are correct! Within a few minutes of her death, the hospice nurse volunteered to start phoning people. My night owl daughter lived up to that right to the end and it was midnight so most people were asleep when they got the call. One of the numbers was wrong. Oops!!!

Having someone designated ahead of time to do the phoning is a good idea. You might also want to list the suppliers and community people (school bus drivers, oxygen company, Drs, etc) and have someone take the responsibility to make those calls for you so you don’t get deliveries and then have to explain yourself what is going on. With Kayda there had been an incredible number of people involved with her life over the years. I just wasn’t up to making those calls. Even with the preplanning some people were forgotten. The more you can have arranged ahead of time and the more you can delegate to other people the better it will be for you. This is one of the most difficult journeys you will ever face. Let others help in any way possible.

From Alsie, mom to Stasia (May 17, 1987-March 11, 1990): I'm not sure I agree entirely with _____ about stressing the importance of pre-planning. Granted there is much to be said for that in any situation of life (pre-planning, that is). Having said that, there are those I think you may also want to take into consideration who are still in denial. Brian and I were one of those and I've since met many others. We all come to acceptance at different times. We made Stasia's arrangements the day after she died. We had three days to accomplish everything, I had much fear, anxiety, and frustration but God's provision was astounding. I just basically dumped it all in His lap, with the footnote that I was totally incapable of achieving my hearts desire at this point and He provided everything we had ever hoped for down to the tiniest detail. I didn't even realize it until long afterward, but we had been avoiding the entire subject out of some nonsensical superstitious feeling that if we began to make concrete plans, it was like accepting it and that in turn would bring it about. Total nonsense, as we both know, but as I said, everyone handles it in their own way. Do I recommend this way of handling it? Absolutely not! However in my particular case God handled it beautifully and perfectly. And I believe it played out that way because there were many lessons for both Brian and I that God wanted us to learn. Time and space do not permit my listing all of them here, but most importantly I learned of the wondrous provision of God for his hurting children (Brian and I) to the tiniest detail. There are times when I've convinced myself that God is not interested in the minutiae of my life. What a lot of malarkey that is.

What's my bottom line here after all this verbiage? Simply this: There are no hard and fast rules. In ten years, my experience has taught me in dealing with other parents like myself that God works in each of our lives toward different goals. There are different lessons individually constructed for each of us and that's how it plays out. The circumstances may change or they may be identical but rarely do two sets of parents or even two parents in the same family travel the same path in dealing with the death of a child. “Alsie Kelley, author of “Stasia’s Gift”

From D, Grandmother to K, aged 18 months: We started planning for K's funeral when the doctors told us that she would only be with us for 2 - 3 weeks. That was 18 months ago. In the meantime we have revisited our plans on several occasions especially as K got older and as A (K’s mom) became more closely attached.

Funeral Home
The first step we had was to find a cemetery. Up to this point, even my husband and I had not purchased any plots. We sat as a family, my husband and I, A and my younger daughter, and discussed whether we wanted to select the family cemetery - about 3 hours away near my husband's family, or something close to where we currently live. We chose the family cemetery
and ensured that plots were purchased for all of us together (8 total).

Secondly, we contacted a funeral home; we selected one close to the cemetery. It was suggested to us that you select someone who has either worked with your family in the past or that has been recommended by a friend. It's hard to interview a funeral home.

I know it sounds crass, but, discuss price with them. We found out that these funeral home only charges 10% of the normal cost since it is for a child. The only item we need to address at the last minute is the selection of a coffin.

Since this home is outside our immediate area, they participate in a cooperative with various other funeral homes around our state. When K passes, we will call the funeral home, they will contact another home close to us, who will come and remove the body, and then transfer her to the funeral home we selected.

We also made arrangements with our pediatrician and hospice for pronouncing K's death. We did not want to call 911 and get paramedics involved or the bureaucracy of the hospital involved. Hospice will come out to the house and take care of whatever paperwork is required.

We have the option of deciding how long we want to spend with K and whether we wish to have our pastor perform a private service in the home before the funeral home removes her.

As far as the service:
We chose to have the service in the church where my husband's parents attend. We will have a private viewing the evening before and for a short period prior to the service.

A has been collecting music and poems that she likes, because she knows she will never remember them later.

We selected a florist in the area, and will be calling them when the time comes. We decided that we didn't want bright gaudy bouquets, so my daughter wants all of the flowers to be in pastels of pink and purple.

The funeral home prepares a little pamphlet that they hand out when you come in, A has selected a photo of K and one of the poems for inclusion.

We elected not to publish an obituary. It is not required by law in Pennsylvania since K does not hold any property. We felt that everyone who needs to know about her passing will be told by the family and we wanted to keep things personal and private to the family.

After the Service:
The women of my mother's church have offered to serve a buffet after the service at the church. This is tradition in that area. It's private and very personal. We aren't rushed to be out of a restaurant and the chapel is always open.

Other Things
We also decide to ask that rather than a lot of flowers that people make donations to a fund in K's name that we will distribute later to the agencies that have been most helpful with her care. The list is constantly changing as time passes; but most notably it includes hospice and Easter
Seals.

A has decided to bury K in a Christening gown. She has outgrown hers, so eventually we will purchase another one.

For Christmas this past year, I bought A and K matching gold crosses. For Valentine's Day, A added to this and bought 2 small gold heart lockets and has placed each of their pictures in them. Something for each of them to keep.

We had also selected a few of K's favorite items, but Ae was back-and-forth as to whether she wanted to place them in the coffin or keep them herself. She'll know for sure when the time comes.

Financing Funerals
What some families have done:

From “Gram Lynn ”Grandmother to Sarah (August 30, 1994-October 26, 2002): Way back in Jan. Barb had asked me to "Tell" what we did for our Sarah when she turned 6 yrs. old! We had NO BURIAL Funds for her then! SO, as her family we threw a "Carnival Celebration of Life" in our own back yard. We went to restaurants, told them our plans and we got 'door prizes' to giveaway @ it! Tami~~Sarah's mommy, made a King Size Bed Quilt and we offered it as a 'Chinese Auction' type drawing for it~~ one of my best friends bid $200.00 for it and GOT IT! {Rosie then PAID Tami to make her matching pillow shams and she paid her for them also!} We paid for a "Clown" to be here for several hours, a friend’s dad dressed up like a 'Fortune Teller', we had a popcorn machine donated for use, a Cotton Candy machine, 'Carnival Games' that Tami and I put together. 'Balloon with darts'~~ under ADULT supervision!!, all kinds of donated glassware for a 'Nickel Toss' game. Many more things BUT I think everyone has gotten the idea. We "made" for Sarah~~ over 1,200.00 AFTER things were paid for~~ we also had carnival foods to eat for free~~ Hamburgers, Hot dogs, French Fries, Pop etc. I GOT to sit at a 'home made ticket booth' [by Sarah's daddy] where people would come to get their "Game Tickets and such! Everyone had so much fun they were here until almost sunset!! I then took the $$ to the bank and opened an account in MY name in trust for our Sarah, because the entire family knows I handle $$ better than anyone in the family!! May this just be an idea to some families on this list! We had so much fun doing it too! I almost forget that we had Sarah's Make a Wish Heated POOL that they got to swim in also!

Dani, mom to Pauli (July 26, 1993-May 14, 2003) I had a small insurance policy on my dependant thru work , I had a small savings too. I borrow most of the money from my mom to pay for things. I was able to pay for my plot and stone as I share them with Pauli. I still owe mom but am working on paying her back. Other than that the funeral homes around here give large discounts for kids services, the cemetery didn't charge to dig his plot up but the stone had no discount what so ever. That was the most expensive part.

You can make prearrangements and payments on things around here to, I just never got around to doing it

Other pages in this section:
What if?
What if: part 1: Your child's last days
What if: part 1: Your child's last days links
What if: part 2: Funeral links
What if: part 2: Eulogies
What if? Part 3: Grief and Loss Resources
What if? Part 3: Grief and Loss Resources Links
What if? Part 3: Grief and Loss Resources: I'm not a mother anymore.

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca