A New Book

A new resource for bereaved parents has just come out in the last week. I have been wanting to write about it here for a long time, but wanted to wait until it had been officially published.

It is a collection of essays written by a group of 26 people who have lost a child, some in pregnancy, some in infancy, and some later in life.  It was written to give those that are new in their grief some hope for the future. Each essay was written to describe one aspect of life in the first year after loss.

I found out about this book when there was a call for essays to be submitted in an online group that I am a part of. The editor of the book was specifically asking for essays from fathers. I forwarded the information on to Dave. He decided to write one and out of several hundred entries, his essay was accepted to be part of the book and one of only two from the perspective of a father.

The book is now available. We are eagerly awaiting its arrival at our house, hopefully in the next couple of days.

Candles Lit for the Babies

Last night we participated in the International Wave of Light for the babies gone too soon. I tried to remember all of the ones that I personally know of and lit candles for each of them.

We lit 19 candles and then prayed for their families. There were candles for: Hannah, Hope, Faith, Noah, Colton, Conner & Ben, Nathaniel, Edward, Mikayla, and a few others who's names I don't know or were lost early in pregnancy and never given names.

International Wave of Light

Walk to Remember 2014

Yesterday was our hospital's annual Walk to Remember for all of the babies lost there. It was a good time to meet some other families that are walking the same road as we are since most of the time at our monthly grief group it is usually just us and one or two other people. There were about 10 to 15 families there, which was not as many as I expected.

Two of the nurses that were with me while I was in the hospital with Nathaniel were there too. It was good to catch up with them and share some of the information about stillbirth that we have found.

Abby's balloon for baby brother

We were able to write a message on a sign and a balloon to release. Then we went outside and took a little walk to the memorial garden that the hospital has set up. A poem written by one of the loss moms was read, we all were able to say the names of the babies we were there for, and then we released all the balloons.

After the balloon release we went back inside and ate lots of delicious food while a few people shared their stories with the whole group. For a lot of us our losses seemed to be fairly recent. One that shared had lost their son in June and another who was there lost their daughter in September. I'm sure it was good for them to be able to share their stories. We didn't speak to the whole group, but I think both Dave and I individually spoke to a few people each.

I'm glad I went. I'm sure we will be participating for many years to come. Hopefully we are able to share some hope with the group.

Writing messages to Nathaniel

Bubbles for Colton

In the last 6 months I have met a lot of loss moms online. One I know had a stillborn boy last August, almost exactly 6 months before we lost Nathaniel. Today baby Colton would have been 1.

I see a lot of similarities between our families. We both have a living child who is about 4. We both lost our second child. Both were boys. Both were stillborn. We both have blogs. And we both have some pretty great faith.

His family is having people blow bubbles for him today and take pictures so we did. You can too. If you do, send them to me and I can pass them on to them. It would mean a lot.

A Loss is a Loss

There seems to be a hierarchy in the loss community. There are those that lost a child through an early miscarriage and then there are those that have lost a child after 20 some weeks. It seems to me that the two groups are not seen as equal. The miscarriages seem to be treated as lesser. I feel that is not right. All of them have lost a child or children. They are all hurting because of it. Losing a child is painful. A loss is a loss whether at 1 day, or 9 months, or 26 years.

For those who have had a miscarriage, people around them might not know what they are going through. They might not have told anyone about the pregnancy before the baby was gone. Their families may not even know. I would think that would be a very hard place to be. I, at least, know that nearly everyone around me knows about Nathaniel so if I am sad or can't handle a situation people might know why.

If you have lost a child, I am sorry. I might not understand exactly what you are going through, and you might not understand my situation, but ultimately we are the same. We are both a parent to a child who is not here with us. We don't need to compare our stories to know that we have both lost something that we can't get back. My situation is not better or worse than yours. We are both in pain.

Finding Nathaniel

In the first couple of weeks after Nathaniel died I was on the internet a lot. I would spend hours and hours reading blogs of others who had lost babies and articles about grief. Sometimes there would be a link to some organization about stillbirth or baby loss in general. That is how I found the Star Legacy Foundation, the organization that put together the Stillbirth Summit.

On their website there are stars in the background. Each of those stars has a name of a baby attached to it. I added Nathaniel's information then I found the information about the memorials that they were doing for the babies at the Summit so I filled out his information for a star to hang there and a balloon to be released at the end. At that time I had no intention of going, but they were going to acknowledge Nathaniel's life so I needed to do it. I put his name anywhere there was a place to put it. I needed to see his name written by someone other than me. There are not many chances for that when your baby is stillborn. So far we had his name on the death certificate (though we don't get a birth certificate) and one piece of mail from a donation in his name. That is all.

At the end of the Stillbirth Summit there was a balloon release for all the babies of those who were there and those who's names had been submitted online. There were hundreds of balloons. Those that had been submitted online had the names written on them by a volunteer. If you were there you could write on a balloon for yourself.

There he is!

I hadn't looked to see if Nathaniel's balloon had been made. I couldn't remember if I had filled out the form for one for him. It had been months since I had done that and I only remembered doing the star. After lunch Dave and I were going to make a balloon for him. We walked over to the lobby where the balloons were and there his was. We didn't have to search for it. For the second time that day I had found him without trying at all.

Dave about to release Nathaniel's balloon into the sky.

Hundred of balloons flying away.

The Secret Club

I am part of a club. An exclusive club. One that no one knows about until they have to join it.

This club is wonderful, but no one really wants to be a part of it and we really never want it to get any bigger. We like everyone too much to want them in our club. We would not wish what we have gone through, the death of a baby or babies, on our worst enemies.

I have met so many wonderful women through the loss community. Most I met online and have not met in person, but we have an instant connection. We understand where the others are and what they are feeling when most of those around us don't.

I noticed this at the Stillbirth Summit. Usually talking to new people is really hard for me. There it wasn't. Everyone there had a similar story. We could talk about our babies without feeling judged or trying to hold back the tears.

When we first got to the conference there were two sessions going on at the same time. Dave went to one, I went to the other. The woman I sat next to needed something hard to write on and I had Abby's book in my purse so I gave it to her to use. After we were done with the session she gave it back to me and asked about it. I told her how I had written it for Abby and she told me that she had a 6 year old and had just lost her second child last year. We talked about how hard it is to be a parent to our other children when you are grieving and how hard it is to have to tell them over and over again that their baby brother or sister is not ever coming home. I felt like we were instant friends though we might never see each other again. I felt this way with every single person that I met while we were there.

I'm Glad I Don't Have a Job

I am glad that I don't have a job outside the home right now. I'm a stay at home mom to Abby and have been since she was born. I don't have to deal with corporate policies and different kinds of leave this time. If I had lost my first child I don't know what I would have done. I can't imagine having to be back at work right away. I assume I would have still gotten maternity leave, though I had no baby at home, but I really don't know since I haven't had to live through that.

At the Stillbirth Summit bereavement leave in the United States was brought up and the fact that FMLA leave can't be used if you have a child that dies. People at the conference are trying to change that. There is legislation being worked on right now to include stillbirth and the death of a child under FMLA. You can sign a petition here.

According to the government a child that is stillborn doesn't exist. They are not included in statistics about infant deaths. You don't get a birth certificate or a social security number. You don't qualify for FMLA. You don't get to claim them on your taxes for that year. You can not add them to your health insurance so any medical bills you get for them you will have to pay yourself. Their birth is not a qualifying event for changing your health benefits.

I didn't know any of these things before Nathaniel. Now we know some of them firsthand and some through the experiences of other loss parents. Things need to change. Our babies existed. They were born. That needs to be recognized. You should not have to fight for the acknowledgement that the full term baby that you gave birth to and held in your arms existed.

A Star For Nathaniel

At the Stillbirth Summit there were stars hanging from the ceiling in the lobby. Each one was submitted by someone around the world who had lost a baby. There were hundreds and hundreds. I had submitted Nathaniel's name a long time ago so I knew his star was there somewhere. I didn't get a chance to look for it when we got there in the morning. The conference had already started. Then at a break Dave was standing at the edge of the stars. I went over to him, looked up, and there it was. It was quite a ways above my head and moved around a lot so it was hard to take a picture, but eventually I got a good, clear one.

More stars in the lobby, hiding in the corner.

After the conference was done another couple was looking for their daughter's star. They were looking for a long time and couldn't find it. Dave and I decided to help them look. We looked all over. After a while I looked way up high and I found it! I'm glad that I was able to help. I think they would have searched until they found it even if that took hours.

Writing Through Tears

Today at the Stillbirth Summit there was a writing workshop. We read a poem and then everyone chose a line and started free writing from that line. It was interesting to hear what other people wrote. I didn't share mine then. I didn't think I would be able to get through reading it. (Tears were dripping off my face while I was writing it as they often are when I write.)

I thought I would share it here. Maybe it will be helpful to someone else. So here it is.

You are mine. You will always be mine. I will never forget you. I won't let others forget you either. You will live on through me and our family and the things that we do for others and the words that I write for others to read. You will have a legacy. A great legacy.

We had you for a short time, but I will see you again. I will live with you forever. I can't wait for the day when I get to meet you for real. I get to see your eyes and hear your voice.

What will I say to you? I will tell you how much you were loved and how you were missed every day for the rest of our lives. I will tell you about your family and all the other people who loved you so much though none got to meet you. 

I will have an eternity to make up for the lifetime that I missed with you here on earth.

So Many Families Missing Babies

The other day we got a newsletter from our grief group at the hospital. It was the first one we have gotten so I didn't know what to expect. It was surprisingly thick because in it there was a list of all the families that are part of the group and the names of the babies that they lost. I counted all of them and there were 190 babies listed. I was surprised that there were so many. I have only seen two other people at the group when we have gone.

So many babies lost. So many families hurting and that is just from one hospital. Nathaniel was the only one listed from this year. I hope that no more names will ever be added to the list, but I know that is not realistic. There will be more. Probably this year.

Conversations with Strangers

Saturday we rode the train to Chicago to go to the Art Institute. It was family day. There were lots of free activities for kids in the family section of the museum and quite a few kids around. While we were in one of the rooms playing a family came in with a girl about Abby's age and a baby. Abby was enthralled with the baby. She stopped what she was doing, went right over and started playing with her. The mom was holding the baby and started talking to Abby. She asked Abby if she had any sisters. Abby told her that she had a baby brother and that he didn't get to come home. Of course the woman didn't understand so she asked her where her brother was. Abby told her that we left him at the doctor.

Dave and I were sitting a few feet away and had overheard the conversation. We figured that it was going to go on for a while and was confusing to the woman so Dave told her that we had recently had a stillbirth. We had just told the volunteer in the room a few minutes before when she asked us if Abby had any siblings. I'm glad Dave was with me this time and he could be the one to have the awkward conversation with a stranger.

We're Going

The trip to Minneapolis is happening. Tickets to the Summit have been purchased. Hotel reservations have been made. Grandma offered to have Abby stay with them while we are gone.

I'm excited and scared at the same time. Excited to meet people who understand. Scared because it's something new. New is always scary for me.

Thinking of Going on a Trip

A month or so after Nathaniel was born I was clicking through baby loss websites and came across the Star Legacy Foundation, a non-profit organization working on stillbirth awareness and research. They are having a conference for medical professionals, counselors, and families in a few weeks in Minneapolis. I didn't think of signing up. I don't like going to things like that. They are scary with all the new people and unknown situations. I get anxious just thinking about it.

I was looking at the agenda for the last day of the conference today. A lot of it is for families. I think it could be really helpful. It might be good to meet some other families too. Scary, but good.

Maybe I'll go. Maybe the whole family will.

Hats and Blankets

There is a group at the hospital for the parents of babies lost to miscarriage, stillbirth, SIDS, etc. The woman who is facilitating the group now had a daughter who was stillborn in February of 2010. For remembrance of Hannah's birthday she was collecting blankets to donate to the hospital for other families that go through what we have gone through. We were given blankets at the hospital for Nathaniel, but they weren't really for stillborn babies. They were supposed to be for sick kids, but that was what was available. There isn't much that is given to hospitals for full term, normal size infants. They are supposed to be going home.

Since I crochet, I decided that I was going to make some blankets to donate. It was something I was thinking about doing already, but now I had an easy way to donate them. I already had some little puppy hats made like we had brought to the hospital for Nathaniel. I made a blanket to coordinate with each of the hats. One for a girl, one for a boy, and a gender neutral one. I hope no one ever has to use these hats or blankets, but I realize that is probably not the case.

Breaking the Silence

26,000 babies are stillborn every year in the US. Until it happened to us I didn't know that it was so common. I thought that it was something that happened in the past to people, something that you read about in history, but didn't happen anymore. Having gone through it I now know just how normal baby loss is. It seems that everyone who hears our story tells us that they had a loss, or their mother/sister/cousin/friend lost a baby. It is not going to be a secret in our lives. We are going to talk about it.

There is a movie premiering on Lifetime this weekend called Return to Zero. It is the story of a couple that loses a child through stillbirth and how that changes their lives. I know it will be hard to see, but I plan on watching it on Saturday night.