# back again- totally different loss- need funeral ideas



## moonglowmama (Jan 23, 2002)

Hello mamas,
Though I occassionally check in here, I have to say that I hate to be back here. It's been 1 1/2 years since I lost Stella, and now I am preparing for another loss.

I am 31 weeks pregnant and we have been planning a home birth with our midwife. After some unsurety about whether I was carrying 2 babies or 1 with a lot of water, we decided to get an ultrasound to prepare ourselves for the birth should there be 2.

Our midwife reviewed the results with us- not good. There was one baby, lots of fluid, and the cause is devastating. Our baby has anencephaly, which is a neural tube defect resulting in the absence of a brain and skull. It is fatal. Our baby will die either before, during, or shortly after birth. The most I've heard a baby living with this condition is about a week.

I have been having a lot of contractions, and I have the sense that once I get affairs in order, labor will happen. We are still having a home birth, and my midwife says there is nothing to prevent me from having the same beautiful birth I've been wanting all along. I've been planning on a water birth, since I've been so drawn to the water this pregnancy.

I would like some ideas on how to make the memorial service and graveside service special. The most important things to me are to value our baby's life, to show friends and family that our child is a child like any other, to have nice memories to hold onto in the empty years to come.

Also, for those of you who have experienced a loss so late, can you tell me what you did that was especially meaningful, what you wish you had done, and whatever else you think might be helpful?

I look forward to receiving your love and support.


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## rwikene (Jun 10, 2002)

that is devistating news!









I don't have any ideas though, just wanted to offer you a hug and tell you how sorry I am for your news


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## Lucky Charm (Nov 8, 2002)

I am so very sorry.
My heart aches for you and your husband. Please know my thoughts are with you.

I hope the birth goes ok.


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## Irishmommy (Nov 19, 2001)

I'm so sorry.

Anencephaly is one of the things dh and I discussed before I ever got pregnant, and we agreed that if it were to happen, if at all possible we would donate the baby's organs. To us, that was something that would give meaning and value to our child's life. Would you consider this?


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## moonglowmama (Jan 23, 2002)

I've read a little about the possibility of donating organs and I will not be considering it. From what I can tell, the doctors who recommend it are assuming that "brain absent" means "brain dead" which it does not. They assume that the baby cannot feel anything, which I do not believe to be true. It seems to me that a baby with anencephaly is closer in its awareness state to a normal newborn than to an adult who is in a vegetative state.

I am not opposed to organ donation for myself, but consider it abhorrent for my baby.


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## Eman'smom (Mar 19, 2002)




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## ellery (Apr 24, 2003)

LOSS SUCKS I JUST GOT THROUGH THE 3RD ANIIVERSARY OF THE LOSS OF MY SON. DO WHAT MAKES U FEEL GOOD NOT THAT U FEEL TO GOOD AT THIS POINT TAKE LOTS OF PICTURES YOULL WANT THEM. MAKE A CD OF MEANINGFUL SONGS U LIKE ONES THAT CAME OUT WHILE U WERE PREGNANT OR THAT MAKE U HAPPY TO PLAY AT THE FUNERAL. N'SYNCS GOD MUST HAVE SPENT A LITTLE MORE TIME ON U IS A GREAT ONEAND SARAH MAGLAUGHLINS ARMS OF THE ANGELSANY CEED SONG. I AM SO SORRY FOR YOUR LOSS AND YOUR SITUATION. GET PICTURES AT THE SERVICE AS WELL. THERE ARE A LOT OF THINGS U CAN DO. BE SURE TO CHERISH WAHT LITTLE LIFE THE BABY DID HAVE . KNOW THAT ONE DAY U WILL MEET AGAIN AND THAT THE BABY IS ALWAYS WITH U. IT DOES GET EASIER. MY THOUGHTS ARE WITH U.


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## Quirky (Jun 18, 2002)

I am so sorry.









Do you live near the ocean, a river, or a lake? Could you have a memorial service near a body of water, and throw roses or some other flower or object that's meaningful to you into the water? It sounds as if water has a very powerful meaning to you for your pregnancy and birth and that symbolically sending your baby from the ocean inside you to the oceans (or other waters of the earth) could be meaningful.

I wish you peace and light in the remainder of your time with your precious babe.


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## Katana (Nov 16, 2002)

I'm sorry.

If you have flowers at the memorial service, you could dry and save some of your favorite ones and put them into a wreath, to place somewhere in the house or on the front door.

I'm wishing you a gentle, beautiful birth. You're in my thoughts.


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## member234098 (Aug 3, 2002)

Many







s

I am so sorry to hear of this.

This is not something you deserve. Take your time and mourn.


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## starfairy (Apr 3, 2003)

(((HUGS))) I am so very sorry for what you are going through. I hope that you have people surrounding you who will care for you & treat you gently.

Peace,
Anne-Marie


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## moonglowmama (Jan 23, 2002)

Thank you all for your ideas and support.

I really like the idea of making a wreath from some of the flowers. And I'm considering asking a friend to take photos at the birth and days following. I know I want pictures, it's just hard to think of asking someone to see a birth they might rather not see.

When I lost my last baby, I wish I had more pictures, more memorabilia. The only picture we took of her was in her burial box, and of the grave. I wish I had held her more, taken pictures to have for later.

So with this baby, I'm keeping everything, taking pictures of everything.

We're planning a trip down to the beach after the funeral. I like the idea of bringing some flowers to throw in.

Thanks again, and keep it coming if you think of anything else. My brain is partially numb about some of this.


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## rwikene (Jun 10, 2002)

can I ask you a question?

you mentioned that there was a difference between "brain absent" and brain dead...does brain absent mean your child still has a central nervous system? or....that he/she could still hear you?

I'm not trying to be rude, I'm just curious. I don't know anything about your baby's condition.

Feel free to ignore me if this is offensive to you, I'm truely not trying to be. You don't have to tell me anything.


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## simonee (Nov 21, 2001)

I am so very very sorry. That is devastating news.

Since water is so important, I would second Jane's idea about a memorial service at the water. And is there maybe a way you can catch and keep some of all that amniotic fluid that has held and cradled your baby? So she can be buried with some of it by her side, the only element she'll ever know?

Again, I'm so very sorry for all of you.


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## joesmom (Nov 19, 2001)

moonglowmama,
i am so sorry. i wish there were something i could say to make you feel better, i know there is not. your baby is blessed to be borne to you, you will love & cherish the time you have together & your precious baby will sense this, i am certain.


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## JessicaS (Nov 18, 2001)

I am so sorry for you to be going through this. I have a friend whose sibling was born with anencephaly and they lived for a few months.

It was probably about 20 ago but they remembered it vividly..they never gave me the baby's name I am sorry..but they said she acted like every other baby and they had many fond and loving memories of her.

I found this anencephaly support group by searching on google...

http://www.asfhelp.com/ASF_files/asf_home.htm

Brain absent means they just lack a brain but have a fully functioning brain stem. They are very much alive but lacking a brain. They have the same needs as any other newborn. They cry wiggle coo and will nurse the same as any newborn.

I completely agree that organ donation is inappropiate in such cases. I would refuse as well.

I am so sorry for what you are going though and will keep you in my prayers.









moonglow please pm me if you would like to talk.


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## KatherineinCA (Apr 4, 2002)

Oh, oh, oh! I'm so very sorry!

You know, one thing we didn't think to do was to have someone videotape us holding Kevin. I really, really, wish we had that now. I also wish I had a video of his graveside service. My midwives tried to make a plaster mold of his hand in mine, but it didn't turn out. I wish I had that as well. Maybe you could order a couple kits, so you could be sure to get one that turns out well. Black and white pictures have been important for me, because they are easier to look at (Kevin's bruising is less apparent). Oh, I also wish we had a picture of all of us with Kevin. I have pictures of Kevin with Mark and with me, and each of the kids with him, but I didn't think to have a family picture taken.

I am grateful that I took as many pictures as I did. I have a lock of his hair, and hand and footprints on paper and in plaster. All of which are precious to me.

For Kevin's service, we kept it small and private. Each of our children thought of a meaningful way to say goodbye. So our 8 yo son read Kevin a story, and our 8 yo daughter made a bouquet that she set on his casket, and our 3 yo son said, "Good-bye Kevin." We allowed time for any relatives to speak who wished to. So each of our parents shared some of their thoughts, and a sister-in-law read a poem she had written. And an uncle spoke, too. Mark and I also spoke. We also all sang the song we had sung to him while I was pregnant.

Moonglowmama, I am so deeply sorry. I remember your posts about Stella, and it's hard to believe you are now facing the loss of another of your precious babies. Many blessings to you and your family in the days and weeks ahead. I will post more ideas as they come to me.

Much love to you,
Katherine


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## 1jooj (Apr 8, 2002)

My heart just sank as I read your post. You put your thoughts so eloquently in your OP. Perhaps you can take the time to write some of them down for a family member or friend to read for you at your memorial. A list of the 8 months of blessings this babe has been to your family, and the blessings you foresee from this child that will follow you through the rest of your lives. The ways he/she has changed you.

I don't know how you might incorporate water, but sleep on it--I think you certainly should. Some floating candles, floating blossoms, water reflecting the sunlight...

I wish you peace in this trying time.


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## malibusunny (Jul 29, 2003)

Words cannot express...







:

A few years back, there was a woman at our church who had a baby with this condition... he was full term and lived for about 2 weeks. She nursed him and everything, and took hundreds of photos. They had a private memorial service at the beach; the baby was cremated rather than buried. She talked about organ donation but in the end she didn't do it, and she had those days with him... it was v. sad but also very precious.

I agree with the others, that having artifacts is very healing. If you ever feel that the photos, the flowers, the video, etc. is too painful, you can always put it away. but you may be glad to have these things, collect them.

Sunny (whose heart aches for you)


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## rwikene (Jun 10, 2002)

abimommy thanks for explaining that to me, now I understand better


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## Marysmama (Jul 6, 2003)

First of all, I want to say how sorry I am that your baby is anencephalic. My heart aches for you and you're family.
I've read about a book titled, "Waiting with Gabriel". It is a breathtaking book about a mother and baby in a similar condition. Perhaps it might be something you'd like to read.

Peace be with you,

Gen


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## moonglowmama (Jan 23, 2002)

You know, just this morning I wa hoping my labor would begin quickly, that I wouldn't have to go too long before being able to hold my little baby. Now, however, I realize there are still so many things I want to do. I want to spend some energy writing. I want to visit the beach again and let my baby feel the warm sun on my belly as I soak in the relaxing nature of the waves, feel the sand in my toes.

I want to find a hymn for everyone to sing at the funeral. I want to do my bellycast, have a blessingway, revel in my baby's life and in the beauty of this pregnancy.

Abimommy, I am amazed to hear of a baby living for several months with anencephaly. I hope for some moments together before death comes, should I get days or weeks or months I will consider myself amazingly blessed. Actually, I already feel amazingly blessed just to have been able to carry and love this child for this amount of time.

It reminds me of how grateful we should all be for each life conceived within us. Every moment is special, even before there are kicks and even if our babies die before they are born. I feel a special sadness for those of you now facing a miscarriage because your time with your baby is so short. Just remember that every life is worth the same as any other. I remember when I miscarried Stella, I just wanted to hold her, to see her personality, to nurse her once. I hope again for those opportunities with this baby.

I get the sense that this baby is spunky and feisty, which scared me a little when I expected to go through a lifetime of raising him or her, but now it gives me hope.


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## JessicaS (Nov 18, 2001)




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## member234098 (Aug 3, 2002)

Perhaps in your memorial service, you can remark that the birth of this child, in a single moment, life, birth and death met in your arms.

Get pictures and make a baby book. Dress the baby and maybe even make an altar to memorialize your child. Name your baby.

And mourn. Take your time. G-d Bless.


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## Gemini (Apr 9, 2003)

I am SO SORRY that you are goingthrough this!!!!!!!!!! Absolutely devestating is the only words that come to mind, and also "world comes crashing down" is slightly appropriate too.

In 1998, at 20 weeks my hubby and I found out through ultrasound our baby had Acrania, absense of the skull bone. All babies with anencephaly have acrania. Anencephaly is where a portion of the brain is missing (could be 5%, 50% or 100% missing), but you know that already. Isolated acrania is rare though. We had 20 weeks to name our baby and to make her the daughter, granddaughter, neice and cousin that she is. She lives forever in our hearts and home. We have pictures all over our home and little "Dreamsicles" angles all over too. Our theme was "Our Little Angel".

We talk about her all the time and our older dd talks about her too, and calls her her "big sister" and she'll say she misses her. We love that she talks about her, because we talk about her too. It's always happy too, we don't get sad about it. After Chloe was born, she lived for 5 hours and died in my arms. My hubby and I call those the best 5 hours of our lives that we got to spend with our daughter.

What we did was had a phone list of people that once I went into labor that person would call and they would have the choice of coming to see her or not (everyone came). It was someone that was kind of removed from my friends and family, so she wasn't SO emotionally involved. She'd call and give directions if needed and just went down the list to let everyone know. Then after that people started coming to the hospital to see her when we were ready. This also will depend on how much you want your friends and family involved. We felt we needed the support so we were okay with everyone coming in and seeing her and holding her if they wanted. WE TOOK TONS OF PICTURES!!!! You won't be sorry if you do that. Bring 10 rolls of film to the hospital, and if she lives for days have 30 on hand. I'm not kidding. The pictures are what we cherish the most and look at often. There is no such thing as too much!! I actually wish we had more.

I also love all the ideas KatherineinCA gave. Get things to make hand molds, hand and footy prints, get locks of hair if baby has it (I didn't do this, and I really regret it). Put her in clothes so you can keep them. Have blankets to wrap baby in to keep and hang or frame. Make lots of video if you can (I wish I had more).

We had a memorial service for her. We had all her pictures and personal effects out for all to see and I wrote a poem on a poster too that fit the occasion. Make it as personal as you can handle. It will really hit home for others of how much this child means to you and always will mean to you.

We also had her cremated and she has a shrine in our bedroom. We see her everyday. Do what you're most comfortable with.

People are going to ask you (as you have known with your past loss I'm sure) of what they can do to help. Take them up on their offers. Maybe you can ask if they'd be willing to make some meals for you so you don't have to think about that.

Quote:

I get the sense that this baby is spunky and feisty, which scared me a little when I expected to go through a lifetime of raising him or her, but now it gives me hope.
You're a good mom.

I've rambled on long enough. I give you strength to get through this a whole person. I can't imagine going through what I went through twice and I have the most profound respect for you and your husband to go through this again.


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## hmpc2 (Jul 1, 2003)

I am so sorry to hear of your baby's diagnosis. I am just thinking how bittersweet it is that you know in advance that you'll only have a short time with your new one. This way you know that every minute counts and you can show him/her your love with all your might during their time with your family; yet at the same time you have to prepare for saying goodbye.

I have so many regrets with the loss of my dear Adia. I wish that DH and I had more time to hold her and took a ton of pictures (we only have 6 of her). I also wish I knew that I could have given her a bath and dressed her in an outfit. I really wish that I had a geniune time alone or just with DH to say goodbye. We were always surrounded by others. I ofcourse really wish she survived









What I did get to do that I am SO thankful for, is I had her casted. I have castings of her face, hands, and feet. My midwife had a friend do this done for us and it is amazing...I am located in Las Vegas, NV and my caster's info is at www.bellycaster.com Just check out the memorial castings and it can give you an idea of what I am talking about. If you check out her webring, there might be someone near you that can do the samething (maybe the same person that is doing your bellycast?) I look at Adia's castings everyday, which means I get to hold her and kiss her all that I want and need to. I would highly recommend this form of art and rememberence. The babies have to have already passed away inorder for the caster to do any of the castings.

As far as a memorial service...I like the ideas of incorporating your connection to water during this pregnancy. The ocean can be such a healing place.

I will think of you and your family during this special time and hope that you have the opprotunity to do everything that you need, want, and desire during this time, so that you won't have any regrets.

~ Heather
mother to my spirit baby Adia


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