My Answers (Our surviving family)

The last of the questions I had from others followed the same theme... What about my Jonasen (my twinless- twin) and our family. I've decided to answer the questions from both Elizabeth and Catherine here.

When Joey started school, did you have a conversation with the director/teacher? What other things if any, did you do?

Joey actually went to preschool at an extension of our church and while I (assume) most knew about Andrew, I did not know his teacher well and so I did tell her about their story. I wrote everything down because I wanted to make sure that everything that I felt needed to be said, was. I also wanted to make sure the teacher had that paper to reference if she needed to- and being a teacher myself, I appreciate all information I get from parents that helps me better understand their child.

When Joey went to kindergarten, I again knew his teacher and have been in regular contact with her. She has shared with me when Joey has talked about Andrew (and yes he has) and how it has gone. I will be writing another letter this summer for his first grade teacher and every year he is in elementary school. I have learned that 'Andrew' has meandered his way into Joey's thoughts throughout his six years and I know he always will. I think it is important to make sure that those educating Joey will know about this very unique piece of him.

That being said, I will also let my younger children's teachers know too. Sometimes they include Andrew and Baby E in their pictures (and sometimes they don't) But I want the teachers to know my family's story- to know that these siblings my children sometimes talk about are not imaginary friends or figments of their imagination.

(And as a side-note, Elizabeth I imagine it is hard that the director had (I assume) healthy twins. I have found that most of the parents that I know that have intact twins have been very supportive of us... but I encourage you to write a letter and explain everything you need to.)

Can you remember when you first discussed Andrew with Jonasen?

I can. It was that night in the hospital. Andrew had left us forever, my husband was asleep on a pull out chair, and I held my son, hours old, in my arms as I told him his story. I told him that his brother- who had shared all that time kicking him- had gone to heaven- that we would see him again, but not until we are (God-willing) very old. I remember those quiet moments still. Looking into his little eyes and grieving for something so big.

Throughout Jonasen's baby and toddler years I would say Andrew's name in prayers. I would say, "God bless mommy & daddy... and my brother Andrew in heaven"- I did not want there to ever be a moment where I sat him down and said, "You know how on your birth certificate it says you are a twin... well..." And so Andrew's name has always been in our house- and it always will be. Doing it like we did- every day- so innocently allowed me to be comfortable with it- to talk about Andrew without tears. In doing so, Jonasen (and his siblings) have felt comfortable asking questions and not worrying about upsetting mom or dad.

Talking about Andrew in this way- (always) was one of the best choices we made in this journey and one that I have NEVER had second thoughts about.

Have you always mentioned Andrew to him and how did he grasp and come to terms with his twin's death?

I don't know when Jonasen grasped the idea that he had a twin brother- or if he fully has yet. He has a set of twin boys in his kindergarten class now and he talks about their eyes sometimes and how they look alike. All of my living children had blue eyes, and Jonasen is the only one who has brown eyes. He has asked me about Andrew's eyes and I can't quite answer them- just tell him that one day we'll know. Because our faith as a family is so strong, there has never been any doubt that one day we will see Andrew again. I think that that has been a comfort to him. I also told him that like God can read our thoughts- perhaps Andrew can hear them too and if he ever wants to just talk to him, he can. And he does. He's talked before about his "walks with Andrew" and while they make me sad, they also make me happy. He's finding his way and I'm ever so proud of that.

Has he asked any questions about his brother and the circumstances of his birth that have surprised you?

Not yet. He asks me to tell the story of his birth often. And I do. He knows that he is the only one in the family who had a brother with him in my belly- he knows that his brother was born first and that God felt it was important to call Andrew home before we got to truly know him. Though we don't know why. He knows that God felt it important for Joey to be on this earth with us. I have written his story in his baby book and in journals of notes I kept for him for later when he is better able to understand it.

His questions don't often surprise me- as I expect them to come- but I am always caught a little off guard when they do come- without warning often. That I haven't gotten used to yet...

Did Andrew's death change how you and your husband envisaged your future family?

Yes and No. When we were married we always dreamed of having four children at home. When I first became pregnant and it was with twins, I had assumed three pregnancies to get those four children- not five-and with two losses. Getting pregnant again (each time) was terrifying- and my husband was scared too. At the time I think he was happy just having Jonasen and his sister- I really pushed to have that original dream of four at home. We now have four children at home and my tubes are tied so there will be no more fears of pregnancy for me.

Did you both feel that you wanted subsequent children? Was it something you spent a long time discussing?

We knew that we wanted more than one child. We had always dreamed of having a larger family. After I lost Andrew, I wanted nothing more than to be pregnant- and I did become pregnant just seven months after we lost Andrew. While I wanted nothing more than to be able to say that I had 'children' (plural) I was afraid to 'try'. Our daughter was not planned but I knew there was a possibility of her coming if God wanted to give us another child at that time- (She was conceived while out of town and we had no birth control with us...)

What we did spend a long time discussing was the fear of losing another-and that fear was gripping. I wanted nothing more to get pregnant and grow our family time and time again. My husband was more hesitant and he feared we would lose another. Especially after losing Baby E he was petrified. I felt that I had to talk him into trying again... I did go on to have our last child after that. Knowing that was the last time that I would be pregnant was freeing. We decided that either way- baby in heaven or baby on earth- that would be the last. Before, I was worried I would always want to have 'one more baby' trying to fill something that couldn't be filled. After my last son's birth all desires to become pregnant again have suddenly vanished. That has been very peaceful too. In the end I have four children at home- but in an odd sense I feel very blessed to know too that two are waiting for us- watching us- and proud of the family we have become- very strong- very intact- we are survivors and are so much stronger for it.

My Answers (Questions from Holly)

A while ago I wrote a post asking people if they had any questions for me. I have been down this road a bit longer than many- And early on, I found myself seeking out people further on in their journey. Much of what I learned from them helped shape the roads that I took...

So here are some more questions- and my answers-

The following questions come from Holly, who is missing her daughter, Carleigh and has an amazing blog where she remembers and helps others here.

How do you react to comments that are not supportive?

Differently... Early on I ALWAYS would (lovingly- and sometimes not so lovingly) set someone straight if they gave me advice that I didn't like. The reason I did this is because I remember once when someone asked me if Jonasen was my only child, I said, "Yes." and it made me- quite literally- sick to my stomach. I try now to pause and choose my words carefully before answering or addressing someone- but I do respond- And now (because my scabs have healed a bit) I may set someone straight more for the next people they come in contact with- to educate them- so they don't hurt someone in a more fragile state. A state that I spent a lot of time in... My wounds have healed quite a bit- but I still have the scars- those will never heal. I don't want them to.

Who has helped you the most through losing your children?

This is going to sound odd... but I have.

I did a lot of writing and self talking until I learned my way. I made decisions on how I wanted to travel this road and I am proud of (most) of the choices that I made in remembering Andrew and Baby E and carrying on as their mom...

That being said- my mom was a tremendous support because I could talk things out to her and she would be honest with me. At times I would become angry with what she would say, but it helped me sort things out and find my way. The founder of CLIMB (Center for loss in Multiple Birth) answered many of my questions about raising a twinless twin and I did many things based on her advice. My support group, HUGS, was huge in my healing- and I'm sure this blogging community would have been had I known about 'blogs' then... I imagine had I started blogging back in 2003, my writing would have looked a lot different- I know it would have as I (in a sense) have a blog kept in my journals of letters to Andrew...

What moment was the most difficult in each journey?

It is so hard to pinpoint one moment... As they are still coming- especially in raising Andrew's surviving twin, Jonasen. Early moments that come to me (with Andrew) were leaving the hospital without him and everyone thinking I was just a happy mom to a singleton... Learning how to forgive myself for being happy to have a living child- and learning to forgive myself for being sad for having lost a child- It took me a while to find that balance. Getting Andrew's Ashes and seeing hospital pictures were also very low moments in my journey...

With Baby E- it was that day I went and saw the ultrasound was blank. I literally believed that God had spared my child. Trying to get pregnant again became very scary too because where I had always feared losing a baby LATE in pregnancy (Andrew died at 39 weeks) I now had to worry about early on. My daughter also (though young) talks about her 'sister' Baby E- and not knowing for sure if Baby E was a boy or girl has been very hard.

My Answers (Questions from a Great Dad!)

One of the wonderful things about the Internet is you get the opportunity to 'meet' people from all over the world. One of those people that I have met is from Living in the Rainbow- these are the questions he asked... along of course with my answers...

1) what things do you have in your home to remember Andrew and Baby E?

When I first got my pictures back of Andrew, I'd envisioned myself plastering them around the house. That didn't happen. But signs of Andrew are everywhere. Andrew was cremated and I wrote here about the perfect gift we found to keep his ashes. It is out in the open, with a picture of Jonasen's hand with my husband's wedding band. We also have a framed picture of Jonasen with his brother's brick and other pictures like that around the house. Above our fireplace we have pictures of all of our children in frames- and in frames the bricks with Andrew and Baby E on them- as they are part of our family- and no one will miss that when coming into our house.

Baby E's picture (though it is only an ultrasound) is also in a frame next to a picture of our daughter's feet in my hand (below). Baby E is not as present as Andrew in our house- though we also have in a frame the paper we picked up with just one letter- the letter E- on it the day we lost our precious babe.

2) what were the most helpful things people said to you in your grief?

This question was easy for me.

His name.

I loved that people would address Andrew by his name- days later- months later- years later. People probably don't realize it but something about hearing people say his name- always makes me smile- and feel full. It means that they remember- that he meant something to others- that his life meant something. And now- (five years after Andrew was born and gone) people still remember our little spark- and refer to (her ?) as Baby E- That makes me smile too.

3) what were the least helpful?

Two things come quickly to mind with this question.

The first was when people would see me so very sad and they'd say, "It'll get better in time." I HATED that- and still do. While I know there is some truth in this statement- what I heard was- this too shall pass- he will pass- you will forget him- you will get over this. That I now know will never be true- but it scared me that I might forget. I will never forget. I'm sure I had said something like this before losing Andrew- that things will feel better in time. I've since taken that statement out of my vocabulary.

The other thing that used to bother me was when people (who had never lost a child) would say things like, "At least he didn't live for a while and THEN die."

First- I have learned through this journey that you cannot compare grief. One person's grief is not more than another person's- it's DIFFERENT. One is not 'harder' than another- it's different. And while it is certainly easier to remember a child who lived- or one that was stillborn- some people (me) choose to also remember the little sparks they had- that left too soon- but still were dreamed about. I choose to dream still- which is why I still remember.

4) what do you think heaven is like?

Ah. I like this question. To me heaven is the most beautiful place- I dream in black and white- but heaven to me is full of vibrant colors. When I close my eyes and dream of going there, the first thing I imagine is falling at the feet of my Lord and Savior, Jesus Christ- I wonder if I'll have the words to thank Him- for getting me through this- but I know He'll know my heart. Then I imagine him picking me up off the floor (like He has done so many times) and introducing me to two very special people I've waited a lifetime to see- to look into their eyes. I can't wait to get there! This sounds morbid- but it's not. When I die, I pray that people will celebrate! I've had such an amazing life (even at the young age of 34)- amazing because I appreciate it so- mostly because of the lessons I've learned- and the people who have graced it. Until I die, I will take my lessons and share them with my children and anyone else who cares to listen!

5) have you had doubts in your faith? if so how have you overcome them?

Doubts in my faith.

No.

I wish I knew why doubt did not come to me when I know it has for so many (including my husband.) It took him a while, but I am very happy that he has overcome h.is doubts.

But if you had asked- had been angry with God?

Absolutely! And I guess I doubted him in a sense- I would ask Him- why didn't He save my child if He loved me so much?

I remember screaming at Him! Cursing Him! Wondering Why? I can remember those moments- (I still have them- though not as often) I remember those moments and the odd thing was through my anger- and tears- and shaking- that pain- it always stopped... I always found my breath again. I believe that was God.

And when I think of God sending His only son to suffer and die for me... well- I think having lost a son- having known the pain of losing him (without the suffering)- makes God's sacrifice all the more powerful to me. It takes my breath away still when I ponder it. It amazes me.

6) have your reasons for blogging changed since you started

This blog is relatively new- in that- it was started five years after I lost Andrew- what wasn't new was my journaling. I have journals that I look back on now- journals full of letters to a son who will never read them- but I felt heard every word.

This blog is for me to write my story- I was interviewed about Andrew and it was such a small taste of what he was- what our story was- and so this blog was born in hopes that one day my living children will be able to read it, and understand. I love that others have found it and I write for them too. I love reading comments and hearing from others. It makes his life matter- again his life lives on through me and I love that it touches others too.

7) if you could change one thing about society's response to stillbirth what would it be?

I would love to open the world's eyes to stillbirth- to let them know that those of us who have had a child who was stillborn still held that child- loved him/her. I would love to tell people who have just had a child. Think of how much you love that child- that brand new baby- well we love our children too and they looked just like that- perfect- though without life.

I would tell them that and much, much more- but haven't the time. Maybe I'd give them the address to this blog of my thoughts.... ;-)

8) what one question have you not been asked that you would like to answer?

(cheeky huh hehe!) what is the answer to it?

Hmm... This is what I have been pondering...

How do you feel about twins- and baby showers (OK I put in two questions)?

Better. I'm feeling better about twins. I can look at them- but I don't want to touch them. I can feel happy for others- but still more sad for me. I wish I knew why I felt this way- and when/if I will ever move beyond that. Boy twins bother me the most (obviously) but I never get happy when I hear 'twins'. It's like the record scratches and my mind goes blank. A singleton or higher order multiples... fine... but no twins please.

I have a hard time going to baby showers. I don't like them. I would much rather go to a celebration after the baby is born. I am afraid for friends who are pregnant. (Luckily if they DO read this blog- I'm certain they stay away from it while pregnant- or at least they should.) I look at pictures of myself (huge) at my baby showers and I see someone so happy- and then I think... poor thing... if she'd only known she would have never opened all those boxes... I shudder to think how I will be as a grandma- hopefully this is something that WILL change in time. I don't want to pass that worry on to my children. I was good at my nieces shower so I am growing.

Thanks for the questions friend!

And thanks for reading!

My Answers (My Beloved Support Group)

It was so nice to have some questions from my last post and because I tend to be quite wordy... (imagine that) I think that I may take a few days to ponder and respond in my 'Moments of Pause' type way. DeniFay from Making Our Troxclair Family asked me the first question about the support group that I have written about on here.

When I delivered my boys I was bombarded with information. It came at me so fast that I hardly had time to digest it. My head was spinning from becoming a mother for the first time and having to care for a little one, to becoming a mother for the first time and realizing that my baby would not be coming home with me. We were making decisions quite quickly- what to do with Andrew's body- the naming of our boys- and we didn't have a lot of time to think things though. When someone mentioned a 'support group', I shrugged it off thinking that a support group would be for people without any children and I had a beautiful one in my arms...

When I came home and reality sank in and the fog that surrounded me began to clear, I hit a wall. I read everything I could get my hands on about stillbirth and (specifically) cord accidents. I gave my doctor a 40 page report with highlighted portions. (as if she needed that) and I sought support from CLIMB (center for loss in multiple birth) and ELIMBO which was a support group on-line for people with a loss of a multiple. And that is when I remembered the mention of that support group and I dug through all of the mementos, papers and brochures that I was sent home with and found a card with a picture of a bear holding a broken heart. It said HUGS which stood for Healing and Understanding Grief Support and it said that they met the third Thursday of every month.

I could hardly wait for the meeting to come and when it did come I realized that this community of people, this 'secret society' was much bigger than I had ever imagined. Early on I saw how people could get stuck in their grief and I felt that though I was in so much pain it never got so dark for me that I couldn't get out of it. It was at that time I made a promise. A promise to my son, and to myself that each month I would go. I would go and speak his name and remember him. I would go and share the blessings of his life by making someone else's journey a little less lonely. I began attending meetings- all of them- and gave my contact information out to the hospital to share with others. While my story is unique in having had lost a twin, at the end of the day, I lost my child. I lost my individual baby. And I still miss him terribly.

My hospital has done a tremendous job with families who have lost a child. My experience (as horrific as it was) was so much more peaceful because of the nurses and my doctor. The staff at my hospital has been trained and I have spoken at two conferences for the medical community to give them a glimpse into the heart of a grieving mother.

As intimidating as a 'support group' can sound, HUGS is a very comforting environment (at least I've found it to be that) and there is always a nurse that is there as well. We take turns sharing who brought us to the meeting and talk about any hurdles we're facing and celebrate those we've conquered. It's a unique group and I have met some of my dearest and life-long friends at those meetings.

I learned recently that other hospitals in our state have heard about HUGS and are starting their support groups based off of HUGS. Perhaps one of the best things about our hospital is that when they have a good thing going, they don't keep it a secret- they share it.

If there is not a support group in your area (and there may be...) I would contact your hospital and ask if there is any interest in starting one. The people reading this blog know that perinatal loss happens far too often and I know that new people come through those doors far too often- and that there are those that can't muster the courage to come to a meeting- but they're hurting just the same. The support of families who have gone through this and shared their stories and experience is what has helped me get where I am. I believe that every life you come in contact with changes you. God has changed me through Andrew's life- and I will strive to change others (to let them know they'll be alright) through his life as well.

To read more about my thoughts on support groups, you can click on the label below, "The Secret Society of Angel Moms" (and I apologize for saying moms- as I know there are many -amazing- dads in the 'secret society' too...) and as for the picture above, that is my little Joey at about 7 months at the memory garden for babies at our hospital. That picture now hangs in the room where you will find me-
The third Thursday of every month.
At 7pm.
In Megan's room.
Changing others- as they change me.

Thanks for reading and being part of my on-line HUGS group!

Questions- Ask me...

Most of what I write is triggered by you.

What you've said at meetings where I've sat.

What you've written in blogs that I have read.

What you have asked me.

My dear friend I met through this blog lost his daughter and recently wrote a piece answering questions that others had asked. I absolutely loved the post because I respect him and believe he is doing an amazing thing for fathers who have lost children by sharing his thoughts- and for mothers who may want a man's perspective on such things...

And as I read, I recalled a question that I have been asked on more than one occasion. Like my friend, I enjoy hearing from people who read my thoughts and who ask me- ask me about Andrew- and Baby E- ask me my thoughts-

If you could do it all over again, would you wish Jonasen to be a singleton so you would not have had to experience the pain of losing Andrew? After all in the end you had one child come home with you, as you would with a singleton. Do you wish his birth would have been just that? Just one? Joy without the pain?

Such an interesting question because the world sees Jonasen as a singleton. When I was wheeled out of the hospital, I had a baby in my arms and no one knew the sorrow in my heart. They saw a mom with a baby. A very normal thing to see coming out of a hospital.

The short answer: No.

A few months ago, I met a grieving mom. She had two daughters, born too early, and like me is raising a twinless twin. I feel blessed to know her, to help her through this journey- and for her to help me- and to see her smile again has been such a blessing. One thing that has stood out to me though is that she has described the day her girls were born as the worst day of her life.

September 15, 2003 was the worst day of my life.

And-

September 15, 2003 was the best day of my life.

On that day I lost a piece of myself. I lost my innocence. Though I would go on to be pregnant four more times, I would never again feel a peace about it. Never buy a single thing for the unborn baby(babies) I carried. I became a person who worried more than she had on September 14th. I became a person who's ears were tuned in to the words, 'loss', 'stillbirth', 'miscarriage'. I became a person who spent nights angry with a God that she loved. I became a person entirely different than the one that existed on September 14th.

And-

On that day I grew my heart. I saw what my husband and I would look like- through the eyes of a child created in love. I nursed a baby for the first time and gazed into the eyes of someone who needed me. Truly needed me. I fell in love as I never had before- an unconditional love. I became a person who would spend nights thanking God because I never knew before how precious life was. How precious he was. I looked at all children as a blessing. A true miracle. The day he came into my life was the best day of my life. I became a person entirely different than the one that existed on September 14th.

It was the best day of my life.

And-

It was the worst day of my life.

And I would not change it.

Andrew is part of Jonasen's story. He is part of my story. He is so much a part of who I am, who I have become, who I am becoming. I would not change it. I would not change our story.

And I had said it before. I would do it again and again- even if I knew I would experience that pain again- even if I knew I would lose a child again- I would do it if it meant I would feel that joy. That love. That peace. And I did. I took the risk of becoming pregnant again four more times (though only three children came home)- I took the risk and grew my heart because the joy- that joy- far outweighed the pain.

Would my joy have been so sweet had I not known the pain?

I don't think so.

But it is. So very sweet. And it is why I say to others- try- try again. It is so very hard- so very scary but that joy at the end is so very, very worth it.

And as for September 15th, 2003... I would have chosen to have them again- have had him again. Because though he did not stay in this world, he stayed in me. He was born in me. That I would not change.

Life is all the more sweeter for having them. Both of them.

Andrew & Jonasen.

Together.