Parents of survivors talk…

…a feature from the newsletter awhile back – readers responding to questions about survivors:
One of the questions we asked was about first birthday celebrations for surviving twins (or higher multiples) – did you put both (all) names on the cake or have two (or more) candles, or did you have two cakes? Another question was how people who have had a multiple birth loss and may or may not have living children respond when they are asked about children, or how many they have (and how those with surviving higher multiples deal with their children being called twins). Another was about dealing with insensitive relatives.

Lee (her twin son was stillborn) wrote:
(birthday cakes)
My surviving twin daughter’s first birthday will be on December 3. I plan to have a family gathering with one cake that has both her name and her twin brother’s name on it. I also plan to donate flowers to our church in celebration of Courtney and remembrance of Ryan.
(how many children) Immediately after the death of my twin son, I would usually mention to people that Courtney had a twin brother who died. I found that it makes people very uncomfortable, and many just don’t know what to say, which leaves me feeling worse than if I’d never mentioned it. Now I don’t usually mention it until I’ve gotten to know the person and feel comfortable around them. When people ask how many children I have, I usually tell them that I had two and lost one. Again, I’m often left feeling unsatisfied and disappointed with their lack of sensitivity.
(insensitive relatives or friends) I’d like to find a convincing but inoffensive way of showing people I’m hurt by their comments. Sometimes I tell them I am indeed grateful for the child that I have but I also hurt very much over the one I lost, and that they couldn’t possibly understand how I feel, but they shouldn’t think that I don’t feel grief just because one baby lived.
Debbie, who lost one twin, wrote:
Birthday cake question: 1 cake – 1 name – people don’t understand, they’d think you’re strange with 2 cakes.
How many children question: I always respond I had 3 children, I only have 2 now, Chris was a twin and his twin died.

Question: How many people after a twin pregnancy wanted to get pregnant again with twins? Are there any that did and conceived twins and they were born ok?
Carol (Justin and Jason were born in 1981, Justin died in 1983 from congenital heart disease; Dustin was stillborn 7-20-87, after his twin miscarried earlier):

Many times I include my twin sons who have died, though sometimes it seems inappropriate. We did include them on my high school reunion book – I wanted everyone to know I’m the mother of 6!
Rachel wrote:
I always say that I have two children when asked – my now-6-year-old, and my 1-year-old surviving twin. To answer any other way I feel is confusing to my daughter and makes people treat you in an odd way. This year in school, my daughter decided (on her own) not to talk to her teacher about her baby sister Alice. This was surprising to me, because last year she told everyone she met that her sister was born sick (Alice was born with an extra chromosome – Trisomy 13) and that she died. She explained to me that she didn’t want people to be sad any more when they looked at her – or to treat her differently from other children. I believe that my wonderful little girl has arrived at an incredibly adult insight. She maintains a rich memory of her sister. We have a “memory box” especially crafted, filled with pictures that Beth has drawn (with new additions all the time). It also contains clothing Alice wore and toys she had. We talk about Alice whenever we want to, and my daughter shares her feelings with all the family members and friends who lived through AliceÕs 4 months and 12 days with us. But she has established a boundary. A line between her memory of her sister (whom she loved dearly) and the rest of her life. A line between the living and the dead. I have learned a great deal from her.

Today is my older daughter’s 6th birthday (October 16). My twins, Alice and Jeremy, were born October 13 and October 14 – 4 minutes apart, on either side of midnight. This past Saturday, we had a big family gathering celebrating Jeremy’s 1st birthday and BethÕs 6th. It was a day mixed with great joy and sadness. We visited the cemetery one week before the birthdays. We decided not to make the occasion of our children’s birthdays the day to visit the place where Alice’s body lies. Her spirit is celebrated in her brother’s eyes and her sister’s smile. We cannot make their lives only a bitter reminder of her loss. That would diminish her life. We are very proud of Alice – she lived with strength and died with dignity. We will always miss her. Yes, we feel cheated sometimes. But that is an emotion we must let go. Spending a lifetime feeling cheated, or teaching my children to feel cheated, is a non-productive use of emotional energy. We miss her with love. We miss her every day, but every day we see the product of our love for her grow in our children, our living children.

We intend to continue, in future years, with the same kind of celebration. We will celebrate Alice’s life and remember her death – and we will always celebrate Beth and JeremyÕs with as much joy as we can muster! On Alice’s birthday, we all attended church together since it fell on Sunday. We lit a candle and prayed together. We did not include her name on my son’s cake. She is dead. I read somewhere in my most despairing moments that grief is so painful because it is the process by which we end our relationship with the lost loved one. That is why we hurt so much – because we don’t want to end it. We feel we are somehow betraying them if we don’t live every day and every year mourning them. I believe we are betraying them if we do.

I wonder sometimes how it might affect a young child who is taken every year to the cemetery on his/her birthday, every year, and has the name of his/her dead sibling on the cake. I don’t question the motives of people who might do these things. I only suggest that they consider the rest of that child’s life. The burden of carrying their dead sibling through life as an unseen shadow at their shoulder – the living instrument to continue the parent’s relationship with the dead child.

It is a hard balance – a seemingly impossible one, to love and take joy in one child who was born with one who is now gone. We struggled for 4 months and 12 days to get to know our sick child at the hospital, to love her, hold her – and at the same time, bond with the perfect little boy at home. I feared the night of their birth I would have difficulty bonding with the sick child. The reverse was true. She was easier to love at first, she needed it more. She was blind, deaf and terribly ill. She stopped breathing hundreds of times (I stopped counting). I had to work at attaching myself to my son, and thank God, it happened! He is a joy.

Keep up the good work. As for insensitive people, I don’t even answer them any more!

Pat (her twin sons were born at 28 weeks after one died in-utero, of unknown cause) says:
First Birthday:
Wayne and I placed flowers on a marble marker I made – we talked about Charles and now it’s become a tradition.
How Many Children: I always include Charles in the number of children I have. I explain the whole story and people are very considerate. My sons also include him and say he went to heaven.
Insensitive Relatives: Neither my mother nor mother-in-law includes Charles in the number of grandchildren. My mom was doing our family tree and wrote “Issue: 3” for me. I said I have 4 boys and if you can’t include Charles, don’t include your own brother or mother who also died. Needless to say it now reads “Issue: 4”.

The in-laws hated his name, etc., so I don’t expect things to change. At first it bothered me quite a bit but what’s important is what I feel not what others feel! I live my life the way I see fit, not the way others want it to be.
Laura wrote:
As you can see in the photo, our cake for Katie’s first birthday is a white sheetcake with a big number “1” outlined in red. Inside the 1 and outside of it also are some designs made with the little candy teddy bears – including a big letter “A” for Amanda made with teddy bears. There are two tall red candles. All our decorations were red and white with a teddy bear theme, and Katie and I wore red and white to honor Amanda.
Alice wrote:
I know my son’s first birthday was one of the hardest events I had to endure after the death of his sister (she was stillborn). It served to be a forceful reminder of the saddest day in my life. But I would never and have never celebrated her birthday by having a cake or putting her name on my son’s cake. Jessica died. She will never have a first birthday or a second, third or fourth – that is a fact of our lives and I mourn that fact. I do not believe it is fair to Max to create a situation where he has to be aware of sharing his birthday, his special, exciting day, with a dead twin. He knows nothing of twinship except how it is represented to him. Do I really want to set up an unnecessary situation of rivalry and competition between him and his sister? No, it is my loss not his and I mourn apart from him.
Laura wrote:
1. I celebrated my daughter’s first birthday with a big celebration at my church – to honour her, to remember her twin brother Joshua…both names were on the birthday cake.
2. I say that I have three children – my 5-year-old son, and twins. If I am with my children, I tell them that her twin brother is in heaven.
Also: I went through a long period of time where I felt like I didn’t know Caroline very well and felt like she was some kind of stranger, things I never felt with my older son. It wasn’t until she came off her monitor that I really began to enjoy her and get to know her. Now our relationship is extraordinarily special, but as I try to remember her infancy, I can’t! Could it be grief during that time blocking it out? Has anyone experienced that?
Karen says: We had a birthday cake for Jake and Sara – half the cake was done in blue with baseball players, and half in pink with a ballerina for Sara. Our son Ryan said, “Why isn’t Cody’s name on it, it’s his birthday too?” Bless him, I felt like a jerk. He was right. We did sing Happy Birthday Jake, Sara, and Cody. (I think this made my parents feel uncomfortable.) I will never forget to put his name on the cake again.

When people call my surviving triplets “twins” my body tenses and I cringe. I deliberately try not to be alone, in public, with Jake and Sara to avoid that question – isn’t that sad? I usually say, “Actually they are triplets, they have a brother, Cody, in heaven”. Sometimes people don’t ask the question – they matter-of-factly call them twins. Then I don’t know what to say. One comment will eat at me for days and I’ll hate myself for not correcting them. I’m afraid my little boy in heavens thinks I’m a traitor. I wonder if he’s saying, “What about me Mom? I was alive for 2 whole days, what about me?”

I can’t wait to hear other people’s comments. I’m so glad you’re doing this and especially asking my #1 question. It’s easy to answer the question, Are they twins? but what do you say when they just assume and refer to them as twins? My new Ob/Gyn (I’m pregnant again with our 5th child) actually referred to my delivery as a twin delivery. I didn’t say anything to him, but I still feel like I should bring that comment out in the open. I delivered triplets. Cody didn’t die for 2 days. It’s odd how people deal with death, isn’t it? You know, I think other people think you don’t want to be reminded about your dead child. They are so wrong. I love his name being said, or any way someone includes him in Christmas, or conversations…He was as real as Jake and Sara.

The nicest thing my parents did was on the triplets’ birthday, they gave Jake and Sara both gifts. When I went, that day, to visit Cody’s grave I found they had a cemetery vase put in the ground near his headstone. It was his birthday gift. They remembered him! My folks spend tons of time and money on my three living children, but this gesture was PRICELESS to me. I will remember it forever and ever. They never bring his name up –but now I know they care. I know they know he was real. I know too, they did it out of love.

When someone refers to Lora and Jacob as twins, I usually just ignore it, since that seems the easiest thing to do. I try to set an example by always referring to them by name and to refer to “multiples” when discussing issues relating to multiples (most people say “twins”). My problem occurs when someone else asks, “Are they twins?” This is one of the hardest questions I have ever had to answer. At first I would freeze when someone asked, because it caused me a lot of pain to think of Ezra. I would then answer that they are survivors of triplets, which generally forced me to tell about an intimate part of my life to strangers. For a while I started answering yes to the twins question, but my older daughters and husband did not approve. Now that Jacob and Laura are 2 1/2, and understand much of what they hear, I’ve gone back to saying that they are survivors of triplets, because we want them to know about their brother. I’m still not happy with this answer, and I hope that someone else writes in with a better solution.
Terri says:
If a stranger asks me if my children are twins I usually answer yes. Their next question is usually, “Did you know you were having twins?” I then answer, “Actually, I had triplets. Their brother did not survive, but yes, I knew at 8 weeks I was having triplets.” Also, to keep the memory alive, I refer to my pregnancy as “when I was pregnant with the triplets”. This gives my friends and family permission to remember Nathan too. Nathan’s life and death are such an open book that my friends and family actually inform strangers that my children are triplets.