Our Story: Part 23: The conference

The first few weeks of my pregnancy with my daughter are a blur of pregnancy tests and thoughts racing.

"My side hurts, I think it is an ectopic."

"This test, the line isn't as dark as the test 2 days ago."

"How in the world am I going to ever find a doctor who I trust?"

But, rapidly approaching was the first infant loss conference we were going to attend. This was going to be a big deal because there was a fundraising banquet one night where we had purchased a table in memory of Curtis. The research doctor was going to be there. We would be able to meet him, talk with him, and figure out a plan of attack.

Now, all of this was planned before we found out I was pregnant, but being pregnant at the same time made the event even more of an emotional roller coaster.

We had chosen not to tell our families I was pregnant. It was early, so early, and the pressure of everyone knowing? I just couldn't handle it. A few friends knew, because I needed someone to email with, but that was it.

The conference was amazing. We volunteered to help out the night before so Craig and I took on various tasks of getting the conference together. The next morning, we made our way downstairs to attend our first session. Some of the first people I see are Kim and Mary Beth. Kim, being our nurse who delivered Curtis. It was wonderful to see them, but threw me off my focus a bit. I was so much thinking about the research doctor and this pregnancy, seeing the person who was the first to hold Curtis shook me a bit.

We attended a few sessions that day. One was dealing with grief as a couple. One was a panel talking about the research the doctor had done with them and how their living children were born. (Each couple had dealt with a stillbirth or cord related death). It was there I met with my friend who ran this even and told her I was pregnant and so scared. She placed her hand on my stomach. Which doctor should I see? Where should I go? She strongly suggested a doctor that was 90 miles away. She is amazing. She has dealt with our pregnant women after a stillbirth.

The next session we went this this _amazing_ woman who had never spoke about her losses before. She has had 5. Stillbirth at 22 weeks, m/c at 16 weeks, m/c 13 weeks, m/c 17 weeks, and stillbirth 20 weeks. They don't know why she keeps having them. She is a pastor and talked about all of the doubts, anger, hatred she has had towards God. It was so awesome. That sounded funny... I mean it was awesome to hear a pastor be angry at God and doubt her faith. Her speech was so moving and so painful, I cried through the whole thing. I know she was on the fence about speaking about it all publicly but did amazing. We also attended one given by the research doctor and it answered a lot of questions we had about what steps we would take in our next pregnancy.

Our friends and family arrived later that night and joined us at the banquet. It was an emotional time. Our table set up for Curtis was beautiful. We had a lovely centerpiece with a candle, etched into it was his name. It still sits on our dining room table. A local, popular, weatherman was the MC for the event and told his story. He lost his son 5 days after birth. Being an identical twin, he talked about his living son and watching him grow up without his brother. Our US Senator got up and spoke about his two infant losses and the need for support like our organization. Some others got up and told their stories, there were a lot of tears.

The next day at the conference, Craig and I watched the movie Losing Layla. It was one of the hardest things I have ever watched. A journalist had documented her pregnancy step by step hoping to make a documentary about what having a baby does to a couple. During delivery, the baby ended up in distress, and inhaling merconium. She ended up dying hours after she was born. The journalist continued to document their grief process. It was like watching my life played out in the screen. I sobbed and sobbed through it. Later, at the closing ceremonies there was a beautiful balloon release. I leaned into Craig's shoulder and he just held me.

I remember the long drive home that day. For whatever reason, Craig and I had two cars so we drove separate. I had stopped to pick up the dog. I came in the house emotionally spent. It was so much to process and so much to think about. Craig was sitting on the couch, in the dark living room. "It feels like May 31st, all over again. Feels like we just walked in without him again."

That was what the conference had done, brought everything back to the surface for the both of us.

I really haven't had much of an issue with pregnant woman. Even right after I lost Curtis. Sure, there were some incidents where I was bothered. Usually more when I happened to overhear some type of conversations. But, for the most part, I was okay with seeing someone pregnant. I guess I should explain that as long as they looked happy, of age, not screaming at 10 other kids... I was okay with it.

But more often than not, I felt sorry for them. I would shake my head and think "you have NO idea how wrong it could all go."

As time moved on, I still thought that but I started realizing maybe they *did* know how wrong it could all go. Maybe they had multiple miscarriages. Maybe they had struggled with infertility. Maybe they had a stillbirth. Maybe their friend had one. That made me feel a little less sorry for them and helped me cope.

Yesterday afternoon, I was in Target with Craig and Claudia. I happened to wander away and was in the book/video area. There was a pregnant woman with her husband looking at the baby books and they were obviously registering for baby supplies.

My first thought?

"I should tell them to register for Baby Einstein videos!"

Not feeling sorry for them. Not having to go through possible horrible scenarios they have faced. That they should register for Baby Einstein.

It was nice. It is progress. I know it has to do with Claudia. I know it has to go with the fact we have our living child here. I know had we not had Claudia I still would have felt sad for them. But I am glad I didn't have to.

Later, in the toy area a woman and her husband were playing with some toys. The woman was having a blast goofing around, her baby in the stroller. The husband looked a tad annoyed and she was enjoying annoying him. I started talking to her about the toy she was playing with and we struck up a conversation. She turned the stroller around and her daughter was the same age as Claudia.

"Isn't being a parent just the coolest thing ever??"

"It is," I replied. "We are having an absolute blast."

She beamed a huge smile. We said our goodbyes and tried to get our daughters to wave.

I walked away, smiling. So often I see parents exhausted or upset with their kids. We all have those moments. But it was nice to see a family, enjoying their kid, and having fun. It was nice for my first thought not to be sad for a pregnant person.

We are pushing 3 years since losing Curtis. I just...I just can't wrap my head around it still. That I should have an almost 3 year old. I have really hard days, and weeks still. All the time. But those moments, those moments like yesterday, I felt good. I felt whole. I felt like someone I could be proud of again. Someone who is taking this grief and finding joy.

I must remember this when the grief hits again and becomes overwhelming.

I think I am the point now where I cherish the good days so much. I used to dread them. Because good days just made the bad ones feel so much worse. Like I had that much farther to fall. Now, the good days feel good. And the bad ones feel bad and they aren't so tired together anymore.

For THAT I am grateful.

So, I was driving home on my way from work today and on the radio, the hosts were interviewing a hockey player.

His name is Curtis.

I sat (well drove) and listened to the interview. He was bantering back and forth with the hosts of the radio show, his wife a few times popped in a comment in the back ground.

It is interesting. His name always catches me attention. I hear it often, as a first name. As a last name. It always makes me smile a bit. Curtis was the name I came up with. Craig wasn't really keen on it at first, he had a guy at work with a similar name and he wasn't a real big fan of him.

We actually had a big fight about it. I mean, as much we fight. It is more me getting sooo upset and him sitting there going "what just happened here?"

I thought it was the perfect name. It didn't rhyme/sound sing songy with our last name (which ends in an "y" sound). I liked the nickname of "Curt". It was a C name. It wasn't super common, but not uncommon.

That day I was so upset Craig didn't love the name as much as I did. I loved it. A few hours later I got a text from Craig that said:

"I like Curtis now." Whether he just decided to give in because I was big, hormonal, and carrying his first child or he truly liked the name now, the world will never know. Because lord knows he will NOT say it was because I was big and hormonal!

I had that text message saved on my phone for 2 and a half years. I would make sure it never got deleted. I always had to save it every few weeks as other text messages rolled in. What is funny as I was writing this, I just realized that when I got my iPhone and changed providers in November, that message is now gone. Lost on an old phone.

Suddenly, I miss it.

I had saved other text messages from during his loss. I had a handful of them people had sent right after I had sent one saying he had been born, it was a cord accident, and that he had looked like Craig. I had saved a few from the weeks following Craig had sent me whenever we were apart. I had saved one from my first week back at work from Craig, checking in on me.

I miss those too.

For those years I had them saved, I would scroll through occasionally just taking myself back to those moments. The big fight over the name. The hours after his loss. The first time we were apart after losing him.

So funny how I had forgotten about those text messages once they weren't saved on my phone anymore and when I started this blog post my memory was suddenly triggered. Not the direction I expected this post to take, but I don't mind.

I like his name, I like hearing his name. It doesn't pain me, it makes me feel good about the choice we made for him. It was one of the few things that we were able to do that normal parents get to do. Name their new baby.

One fear that I am sure most loss parents worry about is people forgetting or overlooking our children.

I had an incident a few months ago where my grandma was talking about all the children on my husband's side of the family. My husband is one of 4 boys. These 4 boys have produced 4 girls and, in total with Curtis, 2 boys.

So, my grandma was saying to me "How funny that his parents had 4 boys, but almost all girl grandchildren. Only one boy."

I knew she meant the living boy. My nephew.

Not angrily, not upset I said "Well, there is another boy."

"Oh, who?" I could see her calculate his nieces and nephews in her head.

"Curtis."

She became visibly flustered and said "Well, oh, well..."

I let her off the hook and changed the subject.

Later, she mentioned the conversation to my mom. (As I had.) She was defending what she said, saying she was just trying to say how funny it was they had a bunch of boys and ended up with only one grandson.

Huh?

Really, if we look at the conversation it was about what gender the family produces the most of. His parents produced boys. Those boys produced 4 girls and 2 boys. Plain and simple. If we are talking gender, that is what it is.

My mom tried to tell her that she needed to understand that Curtis was always present in our lives and he would always be mentioned.

Even that was off the mark. Yes, what she said in general is true, but at the nuts and bolts of the conversation was how many of each gender Craig and his brothers have had. 4 girls and 2 boys.

Things like this....they don't make me angry. Honestly. At this point, I just more shake my head and as nicely as I can point out what I see to be the truth.

When I don't have to do this? When it is done for me?

Amazing.

Craig's Gram passed away last week after a short illness. She was a neat lady. She had a long, active, fun life. She never was one to dwell on the past, so quite frankly, we don't know much about that life. She was very much in the present. She wanted to talk about the now and the future. She would be asked about the past, the life she had lead in her younger days, and honestly, she didn't mention much about it. She loved her sonbs, grandsons and her 14 great grandchildren. Coming from the background she did, death didn't seem to effect her much. People died, she moved on. Including 2 husbands and countless friends and family. When we lost Curtis, it was the one time people in the family mentioned that she was visibly upset.

Craig's Gram was the only grandparent he got to know. She had been a constant in his life and he was with her many times over her final days. She passed away peacefully after 92 years on this Earth.

There is some amount of perspective when someone 92 dies. Someone who said in her final days that she was okay with dying. She had a good life. She was ready for whatever faced her next. So, we said goodbye. While we are sad she is gone, sad for the neat lady who has left us, we understand people don't live forever. When someone dies at 92 you feel blessed for as long as you had them.

So preparations began for us to say goodbye to her. Selfishly, I started to wonder. Would Curtis be mentioned in the obituary? I wasn't going to say anything. I don't want to cause drama. It wasn't my place, it wasn't my choice.

But I worry. I worry about him being forgotten, being overlooked. I understand (really, I do) that it isn't malicious. But, heck, he is important to me.

I shouldn't have doubted it, I really shouldn't have. But sometimes you wonder. With as many people that seem to brush past the topic or seem to think he isn't "real", you doubt.

Needless to say, he was mentioned. Twice. Once in the "preceded in death by" and the next in the part where it stated "In lieu of flowers, donations in the memory of Curtis...." .

I was, well...GIDDY....when I read the proof of the obituary. I mean, as giddy as one can be when it comes to losing a beloved family member. Not only was Curtis mentioned, but Craig's parents wanted donations to go to the foundation we are a part of that promoted stillbirth research and support.

It meant, and means, so much.

All I had simply wanted was his name mentioned. I didn't expect memorials in memory of Gram to go to the foundation who has supported us so much.

Like I said, when I don't have to remind people, when it is done for me? Amazing.

At her service a few days later, I was listening to the priest talk about Gram. Talk about her going to Heaven. About being reunited with her husbands. With Curtis.

I was not prepared to hear his name. I buried my face into my hands and sobbed. She had never 'met' Curtis. She wasn't at the hospital that day. She never held him. Hearing that they were together, despite where my faith is at, was beautiful.

I was trying to pull it together. Craig put his arm around me and whispered "You weren't prepared for that, were you?"

"No."

Had I been prepared, though, it may have not been so momentous. It may have brushed by me. I like that I didn't know, I like that he was mentioned for me without me asking for it. I like that Craig's family thinks enough about our baby boy to make sure he is mentioned. I know they miss him too.

So, we miss Gram. She had a wonderful life. She said she was ready, but no matter the age, when you lose a cool person-- it sucks. It is sad.

In the wake of her death, I have had some amazing moments. And I thank her and her family for it.

Amazing.

Ugh!

Hi.

Things have been....chaotic here. Work. Family. Claudia.... plus...My laptop is sick. It is so sick. Actually, the screen no longer connects to the keyboard/computer part. So I have to prop it up against the arm of the couch to read/surf/post. And sitting sideways on the couch is weird. And a little uncomfortable. Plus, it makes Craig laugh. It is a weird sight, trust me.

My keyboard is also sick. The keys stick. Some keys are loose. Needless to say, I think it is time ofr a new laptop. I am so hard on computers for some reason!

We have had a loss in the family this past week. That is a seperate blog post, but it has kept me away from the computer as well.

Just wanted to check in, I have a few things to blog about soon as well as continuing the "our story" parts.

Thank You, Newsweek, for writing a good article on stillbirth. How the loss rocks us to the core and how our babies bring us together.

So rarely I read an article like this.

http://www.newsweek.com/id/182572/page/1

I have mentioned here and there about my faith being shaky, at best.

My faith wasn't really rock solid before losing Curtis. Then, coupled with so many people telling me it was "God's choice" for Curtis to die. That there was a "reason" for his death and I would see it one day. The more I heard that, the more I started to question it all.

I am not a life long scholar of religion, obviously.

I do not know the ins and outs of each religion.

Lately, I have been wanting to find some peace with it all. I want to expose Claudia to religion. I would love to find a church community we find comfortable with, a community where I could being to find peace with the struggle inside of me that goes along with doubting God.

More than anything: I need to know I will see Curtis again. The logical person inside of me sees evolution and thinks "no way does God exist." And then at my heart of hearts, I know I haven't given faith enough of a chance.

Mainly because I have never needed it before.

Recently, Craig and I made the decision to start exploring churches in our area.

But in doing this, I have to reconcile the fact that many people believe God chose this path for me.

And I do not.

I do not believe God willingly took Curtis away from me. Because if I believed in a God that would do that. A God that gives children cancer and lets babies and children die at the hands of their parents and doesn't allow deserving people to even have children. A God who increased the Autism rates and lets people starve to death. That lets wars and famine happen....

That just isn't a God I can come to terms with.

I have never, not once, believed God chose me for this. I think it was an accident, pure and simple. I don't think God had some big lesson to teach me. (Because why would he make an innocent baby suffer and not get to live his life? What was the reasons for Curtis to have to die? Assigning someone to die just so *I* can learn a lesson? That makes no sense. And actually, sounds very self involved. As if everyone was put on this Earth as some sort of reflection on my life.)

I am not explaining this well. I just do not agree there was a spiritual reason for his death. The reason for his death? I lost my amniotic fluid, his cord was wrapped around his neck and got compressed. There is a medical reason for his death. That is it.

It is seriously like nails on a chalkboard when I hear someone tell me that God chose Curtis because He needed Curtis more. Please! Nothing could be farther from the truth. The founder of the organization we work with has helped literally thousands of women suffering from losing their babies. Even she says this is NOT the reason her daughter died. This is just the wake of what they did in the memory of their daughter. Even though she has comforted many and helped up get our living children here and educated thousands...she would give it all up if her daughter was home.

There are things that have happened in the wake of Curtis' death....friendship have form. I have felt love and support like I couldn't believe possible. Losing him strengthened my marriage. But these things are not reasons for his death. But they are gifts. They are gifts...the silver lining if you will. Gifts on the journey.

I read something recently by a fellow blog writer. She has an illness that has left her house bound at a young age. Someone asked her if she believed God chose her for this to happen. Why would God do this do this to her? I hope that she doesn't mind me linking to her. But her words...they say exactly what I believe. What I am coming to believe. She is the first person to explain it well....she is the first person who said "Hey! I don't blame God for this. But God is helping me through it." I think that is powerful stuff.

Here is the link to her post about Free Will: http://gitzengirl.blogspot.com/2009/01/free-will.html

Here are a few lines I like from her post; the post that made me run to Craig and say "FINALLY. Someone gets it! This wasn't something DONE to us. It was something that just happened..."

I don't think God, as my Father, decided to make me sick or chose to bestow an illness on me. Loving parents want to spare pain and hurts, not inflict them.

Just my opinion.

I think free will allowed two people to fall in love and have a child, and their genetics combined to create me. And in those genetics was a disease called Ankylosing Spondylitis. Just like others may have heart disease or diabetes or a myriad of other illnesses... it's just luck of the draw. But I think God, after allowing that free will, then helps us to see that we can make beautiful choices out of difficult situations. He may lead me to the best ways to cope, He may lead me to comfort, He may lead me to serve by helping others... but choosing to follow His lead is my choice through free will as well....

Like she says, free will. Craig and I chose to marry. We chose to try to get pregnant. We got pregnant.

Then total crap happened.

Please, go read her post. I looked for more to quote here, but quite frankly, I wanted to quote the whole post and you can just click the link instead. Plus, I haven't asked her if it was okay that I quote her here and I don't want her sending her dog after me.

Just kidding.

Kinda.

Seriously. Reading her post at a time Craig and I were trying to decide about checking out churches and giving this faith thing the ole college try was something....well, a path laid out in front of me.