By ⁄ about survivors
by Amber W.
Well, after a long while, I’m finally writing it – the story about April – both of them. I should probably start out by explaining. I have a twin sister named April, who was stillborn. I never knew her, so I can’t miss her, but I’ve always wondered what it would be like to grow up with her, a sister exactly my age. We’d probably be really close, and competitive – we’d have a strong bond, be best friends. This vision I have of our life is kind of amorphous, however – like a dream you’re not even sure you had, like an alternative universe. When I think of April, the person, real but in heaven – for some reason I always think of her as younger than me. Like another little sister, maybe six or seven. She has golden angel-hair, flyaway. She’s small, like I was when I was little, and is creative and interesting. That’s what I think she’d be like – it’s just my image of her, the clearest thing I see when I think of her. She actually had dark hair – but anyway, that’s what I see.
I work at a drama class⁄camp – it’s really the best job ever! I couldn’t love work more. The teacher and director is Heather S., who is awesome, so nice and a great director. She’s really supportive of me in my acting and everything, and we’re great friends. I do a lot of things in the class – I set up and put away costumes, accessories, and props, organize them, help the kids with their scenes, costumes, characters, etc. make popcorn, copy scripts⁄other theatre papers, etc. I sometimes help the kids in their plays, too.
One Tuesday, I went to drama at Waynewood as usual. We had just started a new session last class, so we had a lot of new people. We were trying to get the costumes and everything organized, and the kids were forming groups for a Twelfth Night improv activity. I was walking around the room picking up the scattered shoes, props and costumes when a little girl came up to me. She was small, with flyaway blond hair. She looked up at me and said, “”Will you be my partner?” It was so cute! Of course I said yes, and she pulled me over to pick out costumes. Turns out the theatre game we were doing was themed around Twelfth Night – we were dressing up and doing a skit as twins! And she told me her name – April! What are the odds! Anyway, we did the skit, which was really cute, and then I cleaned up the accessories and costumes while April followed me around, talking animatedly about her videogames, what she did in school, and the rest of her life. After the class, I saw her dad, and talked to him for awhile, gave him the 5-second version of my April story, and told him how great it was having her in the drama class. He looked a bit weirded out, but was happy about what I said about his daughter.
The weeks went on, April in drama almost every class. I was glad and surprised about the two April coincidence, but didn’t think very much of it, till one class a few weeks later. We were in class, and getting ready to do improv skits of a twisted fairy-tale, when April came up to me and asked if I could be in her play. I wanted to, but usually a lot of kids want to be in my group and it messes up the groups if I join one, so I said, “Sure, I’d love to, but …” I had to ask Miss Heather, first. I started walking over, but before I was halfway across the room, April was over by Heather, asking eagerly if she could be ” … in a play with Amber.” Heather said, “Sure!” and smiled over at me like, “Oh, that’s so cute!” So we started practicing. April’s play was about a caterpillar turning into a butterfly, and she had a very definite idea of how it should be done! I was to crawl around the floor as a caterpillar, stopping to eat some “leaves” which we made out of scarves, and then disappear under a white blanket (the cocoon) from which April would then emerge, and “fly” around the stage as a butterfly. (I know, it’s funny, but I like doing this kind of thing. I love kids and love theatre, so it’s great!) But then, a few other girls came over – they wanted to join. I said, “Oh, just a sec,” and quietly asked April if it was alright for the others to join the play. She looked a little reluctant, but agreed, and we all started figuring out how we would work it out. At first, we had only one girl wanting to join, and April got flustered because the girl wanted to be a butterfly, and she was “the butterfly,” and we only had one caterpillar, so how would that work? I suggested different ideas, but they couldn’t agree on one, until finally April got the idea of having one caterpillar turn into two butterflies! I thought that was kind of symbolic, with the twin thing and everything. Then, two other girls wanted to join. April didn’t think the thing she’d thought of before would work, and was getting grumpy, while the first girl was wanting to do her idea, which April didn’t like, and the two new girls were standing there feeling sort of rejected, when I suggested each of us being both a caterpillar and a butterfly. The new girls, who wanted to be butterflies, were happy with that, and the other two agreed to try it. We started practicing, and April quickly came up with the idea for the whole plot, which we practiced and performed. We all started as caterpillars, crawling across the floor to the “leaves,” which we ate, and then covered ourselves with a blanket-cocoon. April “hatched” first and went flying around, after which the rest of us “woke up” and looked around us in puzzlement. “Where’s April?” we said. Then one of us said, “Look up!” and we saw her flying, then rose to join her, ending in a “flying” dance.
The kids loved it and had fun, and I couldn’t help thinking it seemed so symbolic. In the play, April hatched first, like my sister, April, going to heaven first, before she could be born. Then the cocoons woke up and looked around, wondering where she was and why she wasn’t there – like my family wondering why she had to die and leave us. But April-the-Butterfly was flying right above us all the time – like our April watching us from heaven, where she is complete and happy, able to soar as we never could here, tied to the earth as we are. I know this seems like an overly-sweet, too-perfect ending, but to me it was an inspiration and an encouragement that God is always taking care of us. It really happened – just as I described it. Something like that – it can’t be a coincidence.
Talking to a Surviving Twin
Since Amber came home, I have been telling her about her early birth and about her sister, April. Of course, as a baby she understood nothing. Now, she is almost 3 years old and grasps some of the story, but as any child her age, she cannot truly comprehend birth and death. I am not at all sure that how I speak to her is the best way as far as her psychological health. I wish I knew how to say just the right things.
She just got a baby brother (Alex was born in September, 1990) and this experience has helped her understand what having a sister or brother means. She can now tell me (if I ask) who April is (her sister) and she seems to realize that April was supposed to be here, growing up alongside her. She knows that Mommy cries sometimes and feels sad because April is not here. She knows that we have no explanation for why April died. She knows that their birth was not “at the right time”. She understands that most babies are healthy and come right home, but that she herself was born “too early, too small and sick” and that she stayed in a plastic box in the hospital for a long time. She knows that Mommy and Daddy visited her, touched her, fed her with bottles, and loved her while she was in the hospital. She can understand that we felt both happy and sad when we were able to bring her home, but not April.
I pointed out twins to Amber as soon as she started learning language. I would tell her that those two babies (or children) were growing in their mother at the same time, that they were born together, and that they are growing up together and will always be the same age. I also make a point to explain that even though they are both the same age, each one is different and special. I have always talked in a very positive, upbeat way about twins and twinness.
After a while I began adding on to my comments something like this: “You see those two children in that double stroller? They are twins. They grew inside their mommy at the same time and they were born together. You and your sister April grew inside me together too. You were born together. April was your twin sister, but she died and we don’t know why. We are sad that April died, and we’re so happy to have you with us.”
She seems to have an extremely difficult time dealing with sadness in general. She gets really upset (even angry) when someone cries, and tries to help them (or tell them) to stop. She runs away from sad-looking pictures (such as a clown with a sad face) or quickly turns the page of a book with a picture of a sad person or creature. She goes to the mirror and pulls down her mouth into a frown or sad expression quite often. She seems to struggle a lot with this, but I don’t know if it’s unique to our situation or just due to her age and normal development.
This week was the first time she asked to see a picture of April.
I want her to feel that this whole topic is one we can talk about, but she doesn’t seem to want to discuss it yet. She seems quiet or uncomfortable when I bring it up. Yet she does listen.
It seemed to reassure her recently when I mentioned that if April was alive and with us, she too would “behave badly” sometimes. Amber is struggling with the common 2-year-old difficulties and has to be disciplined (time-out’s). She seemed glad to know that April would have sometimes done the kinds of things she has done.
She said she wants to “give April a present” for their birthday. I really didn’t know how to respond to that! I just repeated her words and said we could think about that!
As I said before, I’m really not sure that what I’ve chosen to do or say will turn out to be best. I’m also wondering how to deal with this whole topic as Amber grows and matures. I hope Amber will understand that we love her, and we love April, and we can talk about our feelings.
– written by Amber’s mom when Amber was 2
Lost by Amber, 2004
My petals fall
Yet I am but a shoot
I am cut down
And yet I have no roots
My song was writ
And yet it was not sung
I breathe in
And yet I have no lungs
And yet there was no storm
Burned by fire
Yet I was never warm
Sun ceased its light
And yet it never shone
I am surrounded
And yet I am alone
I spoke aloud
Yet no one heard
My life is a story
Of but one word.
Meghan & Michelle
Hello there. This story will be one of hope for all those new mothers who are having a hard time facing the future.
My two girls were born at 32 weeks on February 5, 1987. Both daughters were put in the Neonatal Intensive Care Unit (NICU) because of their prematurity. My first daughter died after 16 days of giving herself to us. My second daughter, Meghan had some serious problem with her lungs but managed to gain strength and came home after about 3 weeks. Of course, we went through that terrible time somehow surviving as we all do. During these many years, we have maintained a friendship with the doctor who helped our girls in the NICU. He is now in charge of the NICU at the hospital where they were born.
At the funeral for my Michelle, I had two sisters come up to me (they are twins) and told me to never let Meghan forget that she had a twin sister. From that moment, my husband and I always talked to Meghan about her sister. We always had a picture of Michelle at the bedside and Meg’s often took that picture to school for show and tell when she was younger. We were always able to talk to Megs about her sister.
Well, fast forward, not intending to minimize any struggles that we had to endure. Megs is 18 and a senior in high school, graduating in May of ’05. She goes to a competitive all-girls high school and is graduating very near the top of her class. She might just be the valedictorian of her class. Throughout many years she has always maintained that her goal was to become a doctor. I can’t remember ever having heard her tell me that she wanted to be anything else. She and I have a fairly close relationship and because of that she has let me read a couple of her college entrance essays. Much to my pleasure and surprise, she wrote about her sister who died those many years ago. It was very touching to “hear” her talk on paper about the struggle to accept and go on. I guess I never fully realized that these surviving twins also have to go through a process.
She applied to St. Louis University, Washington University (both here in St. Louis) and Northwestern near Chicago. She got accepted in all three. She also applied to UMKC. Well, her first school of choice was the 6-year medical program at the University of Missouri, Kansas City (UMKC). This is a very selective school and only the finest of those applying gain acceptance. Much to our delight, our daughter was accepted there also and that is where she will be going this fall. Her plan was to get in there and do what she had to do and then go straight to residency. This is why she wanted the 6-year program versus the more conventional 8-year program.
Of course, after the schooling they then go on to residency. And here is where the story gets really inspiring. If you were to ask her what kind of doctor she would like to be, she will answer that she wants to be neonatologist!! She would like to be the kind of doctor that took care of her and her sister. Her real dream is to someday work in the same unit that helped her in her first, trouble filled days of her life. She said that she would like to help those little children so that the families would not have to go through what we had to. And the doctor that maintained contact with us would like nothing better than to have a position for her and have her work for him. That, my friends is a story of hope.
We are all made stronger for what we have had to go through with our losses. But we also have to see that the surviving children are also stronger. My surviving daughter is a wonderful, gentle, inspiring, giving and caring person. I am sure that her sister is smiling at her.
There is purpose why I lost my baby. I don’t know what that purpose is, I don’t accept that we had to through it, and I don’t accept that it had to happen. But I know it is there. I still won’t know what the future holds for us until it happens. At this stage of my process, though, while I am looking forward and smiling and I can also look back and smile. I have fewer tears and more memories. Would my Meghan had turned out to be this wonderful person that she is today if Michelle hadn’t been in our lives that short time?? I don’t know. I would like to think that Meg’s sister has been watching over her and guiding her for a long time.
Let those parents know that there are better days ahead. You never know what the future will bring.
Kelly Ann is gone.
She is not here with me.
And I do not even recall
Her face I have ever seen?
And though I do not know her,
I have always loved her
true and dear
From every happy moment
To every painful tear.
Even when her death
Was truly quite unfair
She made me a better person
And now I know she is safe up there.
I live my life to the full
And wait to reunite
And the glory of the Lord that day
Will shine ever so bright.
The golden gates will open
And the chorus of angels will sing
Because I have my Kelly Ann back
All thanks to our righteous King.
Caroline Ann A., age 14
In memory of her
identical twin sister, Kelly Ann
…Kelly Ann died when the girls were
20 days old.
Sheri C.’s surviving twin daughter wrote these letters to their sister for their 5th birthday and the anniversary of Marissa’s stillbirth…
I love you! I wish that there was a great big slide and you could come down from heaven on a slide or a rainbow because I love you and I wish you could be here. We always come and visit you at the cemetery. On my birthday we will bring you a piece of cake and a goody bag and a balloon. I made the cemetery arrangement for you that is on your grave. I am going to put your name on my cake, and I am going to write a heart on it. I love you! I wish you could be here with us. When we go to the cemetery, we will visit you. Every time we will bring an arrangement.
In Remembrance of Rachel Ann
Every day I pray
Wondering what you might say
If you were here there would be no more fears
Definitely no more tears
I often wonder what would
have happened in the past eleven years
I know you’re in a better place
Even though I can’t see your face
I know you’re smiling down on me
Saying everything is okay
By Twin Megan
…in honor of her twin, Rachel, on their 11th birthday. Rachel was stillborn from a placental abruption at full term.
“Jillian & Jessica”
One hot summer day in August, Jillian and Jessica were planting pink flowers in their backyard. As they were digging Jessica found something hard. Jillian said, “Let’s dig it up!” The girls dug and dug until finally they found a shiny brown music box. They opened the music box and something magic happened.
Jillian and Jessica were so hot Jillian said, “I wish it would snow”. All of a sudden it started to snow. The snow was cold and white. Jessica asked, “Where did the snow come from?” Jillian said, “Maybe it was the magic box”. Jillian and Jessica decided to play in the snow and they had a snowball fight. Jessica was winning. Then they made a very big snowman, His eyes were blue and he had a carrot for his nose. After several hours they decided to make another wish. Jessica took the magic box and said, “I wish I had a puppy”. There on the grass was the cutest puppy! He was a yellow lab. They named him Lemon. He had short ears, a long tail, a cute little nose and he was very soft and cuddly. He loved to play fetch and tug of war. Lemon rolled on the grass with Jessica and then Jillian threw a ball and Lemon went and got it and brought it back. They decided to keep Lemon forever. They had lots of fun with Lemon.
After they played with Lemon they wanted to dance. Jillian wished that the music box played dance music. The beautiful brown music box turned into a CD player. All of a sudden loud music came from the CD player and Jillian and Jessica listened to it and made up silly dances all day long. They had lots of fun!
Jillian and Jessica were so tired they decided to bury the magic box in the garden. Then they went inside and crawled into their soft warm bed. Lemon jumped up into their bed and curled up and they all went to sleep.
who had just turned 10…Her identical twin Jessica died not long after they were born at 25 weeks along. Their mom Jennifer wrote, “My daughter wrote this during tutoring this summer. She has always included her twin in her stories, but this is the first one you cannot tell which is the survivor and which is the angel. I am so glad that she maintains a healthy and loving attitude towards her sister. Also notice that all of the wishes were shared with her sister including the dog and believe me when I tell you there is no way she would share a dog with her brother let alone a bed!”
To Our Dear Family and Friends,
It gives us great pleasure to share this wonderful news with you! High school graduation is a significant milestone for any teenager, but with Jason, it carries an extra special meaning. He has been through so much in his life and worked very hard to attain this goal. When Jason and his twin brother, Brian, were born 3 months prematurely, neither one of them was expected to live more than a few days. After Brian passed away at 6 weeks of age, Jason remained in the hospital and his prognosis was extremely poor, but he has proven the “experts” wrong and achieved almost everything they said he would never be able to do. He is truly a living miracle.
Please forgive this announcement for being sent out a month late. Although Jason attended the commencement ceremony with his class in early June, we were still in limbo then as to whether or not he would be granted a standard diploma [because of algebra] and we have been kept waiting till now. At last, we can finally celebrate, yet it is bittersweet for us because we wish both of our twins could be here together. However, we know Brian will always live on in our hearts and we are profoundly grateful for Jason…he is such a joy to us and we treasure each day we have with him. He has really come a long way in the past 19 years, despite numerous surgeries and serious ongoing medical problems [shunted hydrocephalus, cataracts]. Jason’s courage, determination, sense of humor and consistently positive outlook are an inspiration to anyone who has taken the time to get to know him. We are very proud of his many accomplishments.
Our deepest thanks to all of you for your concern, support, advice, encouragement and good wishes throughout the years. We appreciate everything more than words can ever fully express. You are special to us and sending out this graduation announcement is our way of including you in this very important occasion in our lives.
With love always,
Susan, Terry, Jason and Adam
by Jason Benjamin P. (age 16)
I had a twin brother for a very short time
We were born far too early
We were so very small
His name was Brian Joshua
His initials were the opposite of mine
We were J.B. and B.J.
The doctors all said we would not live
But we proved them wrong
At least for a little while
For six weeks, Brian held on to life
The P. twins were together
Struggling to survive
But one day, Brian could struggle no more
He passed away, but left me his strength
Because I began to get better
After three and a half months
I finally came home from the hospital
My twin brother will always be a part of me
I think about him and I miss him
I wish he could have stayed.
Jason and Brian were born exactly 3 months before their due date, weighing 1#12 and 1#13. Jason has had the support of wonderful parents, Susan and Terry, and his much-loved younger brother Adam.
What do you think of when you hear the word “bittersweet”? That question was answered for me when I went to a bereavement meeting in August, 1991. The name of the group is Bittersweet. They are a group of parents who have experienced the death of a baby from a twin or multiple pregnancy. They meet monthly to discuss individual concerns and common issues. They help each other to deal with their unique situation of mourning the death of their children and their loss of their chance to have twins or other multiples– while celebrating the joys of the children who survived. For them “bittersweet” means pleasure mixed with overtones of sadness.
I was there that night because the group asked me to share my experiences of being a surviving twin and to answer their questions. I would like to share my experiences of being a surviving twin and how the meeting changed my outlook on life.
In 1970 my parents found out they were having twins for the second time. Their first set, Rob and Rox, are 8 years older than me. My parents knew what it was going to be like to raise twins, but they never expected to lose one. We were born a month premature and July 2. Two days later, on July 4, Tommy died because his lungs were not fully developed. It is a condition that could be fixed if we were born today.
From an early age I knew I was a surviving twin. My parents have always been open with me about it. There were times that I would ask them questions that they could not answer. Most of those questions I still have today, like: What would he look like? What would he be like? Would we be close? They are questions that will never be answered.
What it is like to lose a twin at birth is best summarized by an article from an English newspaper entitled, “The everlasting sadness of a lone twin”. Rosemary Stark, the writer of the article, lost her twin in adulthood, and attended a gathering of 27 other “lone twins” who had participated in a study of twin bereavement done by Joan Woodward, a psychotherapist who lost her own twin at age 3. At the meeting, Rosemary realized that she had memories of her sister that no one could take away. Those whose twin had died at birth would never get that chance.
Parents who have experienced the death of a baby from a twin or multiple pregnancy share many of the feelings of the lone twins from that story. They find themselves searching for answers. They may feel deprived of the chance to raise multiples, or the special honor of raising two sets. The parents may look forward to seeing their baby grow and change and be disappointed because they should be watching two individuals. They may be proud they’re parents of a new baby and guilty because they think they should have “done something” (as it’s said in the Centering Corporation pamphlet).
At the bereavement meeting I attended, the parents shared many of the concerns I just mentioned. The questions they asked me were about what they should tell the surviving twin. I feel it is important that the parents tell the child as soon as they can about the twin who died. As their child grows older, they should allow and encourage all kinds of questions and accept all kinds of feelings. The surviving twin may feel guilty and need his or her parents’ reassurance and love. When true feelings are accepted he or she can be open and caring about the twin’s death.
This experience at the meeting changed my life because it made me think about my feelings. I began to see how precious life is and how easily it can be taken away.
Katie is now a mom herself, of a little boy whose middle name is Thomas.