What's wrong with this picture?

Remember those "what's wrong" pictures that you'd find in books like Highlights where the dogs tail was a fish and the clown was wearing a business suit? I feel like I'm in one of those images right now.

As I wrote in my last entry, my firstborn, 10 year old Christian, has Asperger's Syndrome (click the link to learn more). It took me a long time to find peace with his diagnosis and thankfully, he has made incredible progress and is extremely high functioning. Christian's major deficit at this point is in the social realm. He's quirky. Okay, he can be downright weird. He makes us laugh and loves fiercely. He's a completely unique, amazing 10 year old boy.

Christian just finished 5th grade. I'm sure anybody who is over the age of 15 would tell you that between 5th-8th grade were probably some of the worst years of their lives. For me, it was 7th-9th. Kids are brutal. They're cruel. They will take anything about you that is different and tease and laugh. I've feared this time period in Christian's life for a long time.

I'm sure you're thinking, what the hell does this have to do with the clown in the business suit? Here's what it is. Right now, my son is on his way to his first "social language peer group." The goal of the class is to give Christian the skills he needs to have successful interaction with his peers.

Sounds great, right?

On the surface, sure. Christian has to learn to live in a world that is red/blue/yellow/green/purple despite the fact that his mind works in black and white. He doesn't understand nuances and sarcasm. He doesn't get joking and teasing (believe me, I know this).

So what's my problem? My kid is going to get this great opportunity and insurance will pay for it. I should be jumping for joy, right?

My issue with this is that Christian isn't the clown in the business suit. He's not the dog with the fish for a tail. At least not to me. Christian is loving, gentle, dotes on his baby sister, makes me breakfast in bed for no reason (and they are the best microwave pancakes I've ever had), he's is daddy's shadow and my little sweet boy. He wants to be friends with everybody. He doesn't have a violent or hateful bone in his body. He's smart, he follows the rules, he works hard. He LOVES. If you can't tell by now, I think my son is amazing.

Why is Christian the abnormal one in the eyes of the teachers, the principal, OUR SOCIETY? Why don't we want more kids to be like Christian instead of trying to turn Christian into one of the little hooligans who make his life a living hell at school, on the bus, on the playground, and in the classroom? Why do I have to send my son to a class to learn to interact "normally" and explain to him why he has to go? Why don't we send the bullies to a class so they can learn to be decent people and more like Christian?

It makes me so angry. On top of this, when school starts again, we have to meet with Christian's principal and teachers to see if we can put a plan into place to ensure Christian's safety before I'm willing to send him back to public school. In the last couple of months of the school year, Christian was hit in the head with an object on the bus, he was put in a headlock on the playground, he was called names and teased, he was cursed at, he was threatened several times (including one kid saying she was going to bring a knife and cut him and another kid saying he was going to kill Christian). We spent two weeks dropping him off at school instead of putting him on the bus. He was moved to the front of the bus with the younger kids while the kids his age sit in the back because the other kids weren't able to leave him alone. At one point, he did retaliate and he scratched some kid with his long nails. When the kid's mom complained to the principal, and I heard about it, the principal told me that we were "lucky" that Christian wasn't in serious trouble, but they took his "issues" into consideration. Really? I guess the kids who hit him first have even bigger issues, hmmm?

I don't expect the world to cater to my son. I don't expect him to be treated with kid gloves and coddled for his entire life. I do expect him to be able to go to school and not get abused by his peers. I do expect that the bully's will be dealt with in accordance with the school's own policies and to be held accountable for their actions. I do expect to not hear that my son is bullied because he's "weird" or that the other kids were just joking and he didn't understand.

I also expect you'll hear more from me on this subject soon.

Little Boy Lost

When Christian was a baby, he was the happiest, most social baby I'd ever met. He'd smile and coo at everybody, babbled to strangers, could get a smile from the most stoic person. There aren't many pictures of him without a huge smile on his face. When he was about a year old, he started talking and had a huge vocabulary. He was in the delivery room the night Hailey was born and we have him on video, pointing to her and saying, "What's that?"

Shortly after Hailey's birth, that all changed. My outgoing, talkative little guy because shy and reserved. It's hard to remember exactly, since I was so busy with two little ones and dealing with PPD, but some time between about 19 months and 22 months, he pretty much lost all of his speech. He became obsessed with trains and would repeat the phrase "choo choo" for hours. He got his first train set for his second birthday and he would spend hours at a time rolling the train around the track saying, "choo choo choo choo."

I knew something was wrong. It was so obvious to me. First, I talked to our parent educator through Parents as Teachers. She assured me, he's fine, you're just a worried inexperienced mom. I googled and read. I knew about Autism, but only the severe type, but I knew that speech regression was a big sign. In my research, I found that he had many signs going back to birth. I talked to our pediatrician who told me that kids regress when a new baby comes into the family and that Christian was probably traumatized because I had been sick and in the hospital for 10 days and I was a SAHM and his whole world was turned upside down. I left the pedi feeling very defeated and guilty.

I continued to research Autism and figure out what I needed to do. When he was 2 1/2, I called the county office for First Steps, Missouri's birth to 3 program. Our county was incredibly back logged so nothing had been done between January when I called and April when we moved to a neighboring county. His case was transferred to our new county and things moved a little faster. We met our incredible service coordinator, Susan, shortly after. The first time she met Christian, she talked to him, played with him, and then told me that she believed he was on the Autism spectrum. Finally, someone else was seeing what I saw, someone knew that he needed help.

Christian had evaluations and we went to a new pediatrician. Our new pedi's first recommendation was for Christian to see a neurologist. I made the appointment, which took about 5 or 6 months to get. We got his evaluation results back and his speech and fine motor skills were very delayed. He began speech and occupational therapy immediately. We also started the process to get him into our school district's special needs preschool. When we finally saw the neurologist, he diagnosed Christian with PDD-NOS (pervasive developmental disorder, not otherwise specified) but said as he got older, it might end up being Asperger's Syndrome.

At that point, nearing his 3rd birthday, Christian said very few words, mostly grunting and pointing to meet his needs. He had a very self-limited diet due to sensory issues. He spent his time lining up his trains, playing with them on his train table, and he'd become obsessed with dinosaurs. I remember very clearly the first day we went to the preschool to look around. Even though there were children his age all around, it was as if Christian didn't even see them. He went right to the dinosaur toys and was in his own little world.

Intervention was a miracle for Christian. The preschool was speech intensive, with a dedicated speech therapist in each class. He started school in September and by December, he was talking in full sentences, with a vocabulary far beyond his age. A lot of it was echolalia and he couldn't carry a conversation at all. Christian talked about what he wanted to talk about and that was it. If you tried to ask him questions, he'd talk about dinosaurs. He was a sponge that soaked up the things he heard and repeated them as needed. As preschool progressed, I began seeing glimpses of the little boy I thought I'd lost.

By the time Christian moved onto Kindergarten, "by the numbers," he no longer qualified for special services. Fortunately, by that time, advocating for my children had become second nature and I refused to sign off on a plan that didn't include support for him. We sent him to the elementary school in our district that had an "Autism room." It was the first year for the classroom in that school and things were chaotic. Christian kind of fell to the wayside. His classroom teacher didn't know anything about Autism or Aspergers. When he did well on things, the teacher would tell me about them with this sense of awe, as if she regarded Christian as having a mental disability or low intelligence. In kindergarten, we also began to encounter bullies. Kids picked on him because he was "weird" and "annoying." He was also the smallest kid in kindergarten and, with his late July birthday, one of the youngest (MO state cut off is July 31). There was a lot of conflict with the entire situation, so Eric and I made the decision to move Christian to the home school. Fortunately, the Autism room also moved to that school as well and he continued with the same teacher the next year.

Elementary school has been a battle. As Christian gets older, kids get meaner and we've had a lot of issues with bullying. We've also had to fight to get the accommodations that he needs, like more concrete instructions for projects, defined guidelines for the teachers' expectations, and things like that. He's very rule oriented and doesn't like to go against anything his teachers tell him, even simple things like considering different creative options for projects other than what the teacher suggested.

One of our biggest struggles is that people seem to think that because Christian is so smart, he doesn't need help in other areas. He has an IEP, but we fear he will lose it at some point because his evaluations and testing always come back with good results. But still, he struggles with nuances and social situations, with organization and focus. So I fight for him. I advocate, I email, I call, I complain, I yell, I'm "that mom." When I call the school, the principal probably groans outloud and says, not her again.

My goal for Christian is more than graduating high school (he will) or going to college (he will). My goal is for him to learn to live in a neuro-typical world. He can't change the world to suit himself. But, at the same time, with a newly released Autism rate of 1 in 88, our world DOES need to accept and welcome people on the spectrum. Christian can't change who he is and I don't want him to. I do want people to try to understand him a little better. I want people to understand that many of his issues are beyond his control. When he refuses to eat the meal served at a social event, he isn't being a spoiled brat or too picky. He has sensory issues which prevent him from eating certain things, he has routines that he thinks must be followed and if they're broken, he can't cope well. He doesn't perceive personal space, touch, jokes, and innuendo like others do. Christian can't change having Asperger's any more than he can change having brown eyes or being right handed. It is part of who he is--who 1 in 88 of our children are-- and he needs acceptance. They all do. They need us to work for them, advocate for them, tell our physicians and lawmakers and school teachers that the children need their help.

I'm one of the lucky ones. For the most part, I got my shining, outgoing, loving little boy back. I thank God every day for that. I am proud to be the mom of such an amazing son who just happens to have Asperger's Syndrome. I'm lucky to experience this loving, gentle, brillant child.

Winner!

And the winner is...

Charlotte's mommy Angela!

Congrats Angela!

Thank you to everybody who entered and for your kind words about Sydney. You and your angels are in my thoughts this holiday season.

My first giveaway--25 days of giveaways!

This is my first time participating in Tina's 25 Days of Giveaways and I am so excited!

After we Sydney was born, I began to envision her as a butterfly who had woken from her cocoon and flown away. From the beginning, butterflies have always symbolized her and we are frequently visited by butterflies. I love to collect things with her name on it, and then, I began looking for butterfly keepsakes.

One day, about 9 months or so after Sydney died, I came across The Midnight Orange on Etsy. I was immediately struck by the beauty of the sculptures. I was sure the artist had to be a baby lost mama, but then found that she wasn't. I bookmarked her page, intending to come back soon and buy an angel sculpture. It was a little while before I made it back, and when I finally did, her new sculptures took my breath away. Her angels were now offered with butterfly wings. I had showed my husband and he ended up ordering my first piece for me.

Over the last couple of years, D. Antonia's work has continued to resonate with me. She is so talented and her pieces are so honest and, in some cases, raw. I have a list of future pieces I hope to buy and display in Sydney's area in our home.

When I tried to decide what I wanted to giveaway, I came up blank at first. Then I realized that one of D. Antonia's angel ornaments would be perfect for a giveaway! This piece, a sleeping angel ornament, is so beautiful and delicate. When I opened it up to take a picture, I was tempted to keep it for myself. LOL Please forgive the quality of the pictures, they do the angel no justice at all.

In order to enter my giveaway, you must be a baby lost parent. Simply leave a comment telling me your angel's name(s) and birthday/angelversary. Make sure to leave a link to your blog so I can visit you too! For a second entry, go link The Midnight Orange on Facebook and then leave a comment letting me know you did.

I'm wishing all of you a peaceful holiday season as we endure this time without our precious babies.

25 Days of Giveaways!

It's coming soon! I will be hosting a giveaway this year, so come back to check. I'm really excited about what I'm giving away and I can't wait!

Updating the blog

I did some work on the appearance of the blog tonight. I changed my header a little and added some new sidebar images. I've also merged Missing Sydney into this blog and Missing Sydney will now redirect here.

I have some exciting things coming up soon! I can't wait to share these things with you!

Memorial

Our June angels have names!

Your Name

i put your name in the sand.
but the waves washed it away.
i put your name on my hand.
but i washed it away the next day.
i put your name on paper.
but i accidentally threw it away.
i put your name in my heart and forever it will stay
~Shelby Ann Arthur

I mentioned the other day that I had thought about naming our June Angels. It has been 11 and 2 years since we lost them, but it's never too late, right?

I never had a feeling about their genders. Both pregnancies were over so quickly after finding out about them. When I told Eric that I wanted to name them, we decided to come up with unisex names.

Our June 2000 angel is Tristan Avery. I've always loved the name Tristan and wanted to use it for Christian, but Eric thought it was too girly. I've seen little boys and girls named Tristan, so it seemed perfect for our first angel.

Our June 2009 angel is Riley Addison. We both like Riley and I think at some point we even tossed it around for one of the other kids, same with Addison.

All of our kids, except Kelsey, now have middle names that start with vowels. I'm a theme person. I went back and forth about Kelsey not fitting the "theme," but her middle name was picked long before her first name--Grace. Because she is proof of God's Grace for us. After losing Sydney, I knew if we had another girl, her middle name would be Grace.

It feels so good to finally have named our other two angels. This past weekend, we included their names on our October 15 activities. I'll post more about that tomorrow!

A little brown bear

As Long As I Live You Will Live

As Long As I Live You Will Be Remembered

As Long As I Live You Will Be Loved

~Author unknown

For the first year after Sydney died, I slept with a little brown bear that some sweet nurse put in her hands on the last day we held her. When I gave her to the nurse before I was discharged, I held onto the bear. They brought back her clothes and blankets, and still, I held onto the bear. Other moms left with their new babies bundled up against the cold February wind, and I wrapped this little bear in Sydney's pink blanket that she was wrapped in on the day she was born.

Over the first few months, I gathered more items to try to comfort me. After my first support group meeting, when I realized I wasn't crazy because the other moms understood how I felt, I stopped at Target and bought a bigger bear. This one was about 18" inches long. I took the bear home, asked Eric to bring me the outfit that was supposed to be Sydney's coming home outfit, and lovingly dressed that bear in Sydney's sleeper with the pink ladybugs and wrapped her in the matching blanket. I then held that bear, with my husband watching without a clue why I was dressing a bear in our daughter's clothes, and I cried. I'm sure Eric thought I had lost it at that point.

A couple of months later, a third bear joined my collection. A friend I met at that first support group showed me the bear she had that matched the bear her son was buried with. I knew that Sydney had been buried with that same bear, so I was on a mission to find one of those bears. I searched online, ebay, all over, and finally, I broke down and called the funeral home. I'm sure they thought I was a nut. I asked them if they could order this bear for me and the funeral director promised to look into it. He called me back only moments later and said, yes, we can order the bear, but you'll have to pay for it. He could've told me it would cost $10,000 for that bear, and I would've said yes. Fortunately, it was a much more affordable $13. A few days later, he called again to tell me my bear was there and as soon as I left work, I rushed to the funeral home to pick up my bear. When I arrived, someone in the office told me that the owner had told them to give me the bear, no payment required. I started bawling like a baby right in the middle of the funeral home office (which I guess isn't really the worst place for that to happen). I took that little bear home and he joined the tiny bear and the clothed bear.

As time went on, I began to wonder when or if I could give up my bears. I had gone on several trips for work in that first year and each time, tiny bear traveled with me. Each morning, I would tuck tiny bear's pink blanket into the safe where we keep Sydney's things because when I took it out each night, it smelled like her. But tiny bear went with me. I would put him in my pocket or in my purse. Needless to say, I was pretty dependent on my bears.

When Sydney's first birthday came, I felt like that was a good time to finally put away my bears. I felt so guilty, like I was trying to forget her or that I was replacing her (as I'd just found out a few weeks before that I was pregnant again). But it was my first step toward taking control over my grief. For that first year, the grief controlled me. I realized that I couldn't begin to heal unless I tried to control the grief. I know that Sydney knows she's never far from my thoughts. There have been so many things that have shown me that she's still with us, but I'll save that for another post.

A must read

I've never read an article that summed up infant loss so well. This is amazing and a must read.

The heartbreak of infant loss

Another June Angel

Post 4 of 31 for Pregnancy and Infant Loss Awareness month

“Miscarriages are labor, miscarriages are birth. To consider them less dishonors the woman whose womb has held life, however briefly.” ~Kathryn Miller Ridiman


After Sydney died, I knew right away that I wanted another baby. I physically ached to hold my baby. From a realistic perspective, I knew I wasn't getting any younger. I was 30 when Sydney was born. Eric was sort of on board, but needed some more time. I had some immediate health concerns after delivering Sydney, which ended up being caused by retained placenta. I refused a D&C, not wanting to further damage my cervix, and the medication I could've been given isn't used in women with a history of high blood pressure and pre-eclampsia. Fortunately, I passed the tissue on my own about 3 weeks after Sydney was born.

I started getting my ducks in a row for another pregnancy. First, Dr. Simckes suspected a bacteria called mycoplasma might have caused my pre-term labor, so he did testing for that, which came back negative. I also requested a full panel of bloodwork, specifically an anti-coagulant panel (for blood clotting disorders). This showed that I have a heterozygous mutation for MTHFR . Due to this, I was put on a daily baby aspirin and Folgard, which is a high dose of folic acid, B6, and B12. Finally, I consulted with a maternal fetal medicine (MFM) specialist, to get his opinion on what had happened and if another pregnancy was advisable.

After our appointment with the MFM, we were given the okay to try again when we were ready. Physically, it was fine to try again, but emotionally, we needed to be prepared for the roller coaster of a very high risk pregnancy after loss. I'm not the world's most patient person, so we decided to start trying in May. Amazingly enough, on June 10, 2009, Sydney's four month birthday, I found out I was pregnant on our first try.

I wasn't completely shocked that I got pregnant so quickly. Sydney was conceived during a time that I never would've guessed I would get pregnant. I was scared though and I only told a couple of close friends that I was pregnant. Eric and I were nervously excited. I calculated my due date and it was February 18, 2010, one year to the day we laid Sydney to rest.

Only a week later, I was at work and started having some very painful menstrual type cramps. I tried to ignore it because I've always cramped in early pregnancy and I wasn't bleeding at that point. Late that evening, though, I started bleeding very heavily and I knew that I was miscarrying again.

I was in disbelief that this could happen. Why did I have to have a miscarriage on top of losing Sydney? It only worsened my grief and convinced me that I would never have another living child. At that point, I'd had more losses than living children. I prayed and told God that I'd rather not get pregnant again at all if I only had to endure another loss. I was broken, emotionally. I felt broken physically.

It was an odd feeling, but having a miscarriage seemed to only deepen my grief for Sydney. Maybe it was because I felt like she was my last chance to have another baby and she was already gone. Maybe it was just the added grief of another loss and I was so focused on Sydney that I couldn't separate the two. Lately I've thought a lot about my two tiniest angels. I regret that we never named them. I suppose it's never too late and perhaps naming them could give me some closure or peace over losing them.

Sydney Alexis

(I'm so behind here, thanks to a complete cable/internet outage at home. I'm planning to catch up in the next couple of days.)

Post 3 of 31 for Pregnancy and Infant Loss Awareness month

How very softly

you tiptoed into my world.

Almost silently;

Only a moment you stayed.

But what an imprint

Your footprints have left

On our hearts.

--Author Unknown

We didn't plan on having another baby. My pregnancy with Hailey was awful, with so many complications--high blood pressure, pre-eclampsia, HELLP Syndrome, Gestational Diabetes, pre-term labor, and enough fear and worry to age me several years in the seven or so months I was pregnant with her. Hailey was delivered at 33 weeks on the dot, and about 8 hours after she was born and whisked away to the NICU, my perinatologist came into my room and told me I should consider permanent birth control because another pregnancy would likely have a tragic outcome. Of course, she was thinking of the pre-eclampsia and HELLP Syndrome, and neither of those things contributed to losing Sydney.

But she was coming and after some adjustment time, we were happy. My pregnancy was smooth, at least up until the day I ended up in the hospital. I never imagined that I'd ever hear those words--we have to induce, the baby isn't viable, there's nothing we can do for her, you'll die if you don't deliver soon. It was my worst nightmare. I didn't know how I'd survive losing one of my children. I didn't know how I'd ever forgive myself for signing the papers to allow the induction, essentially signing her life away before it even began.

My pregnancy with Sydney was different than the others. At about 12 weeks, if I laid in bed very still at night or in the morning, I could feel her fluttering around. Eric felt her kicking at about 19 weeks, long before he felt any of the other kids too. When I was in labor with her, she positioned herself very high up in my uterus, as if to say, I don't want to go and you can't make me.

February 10, 2009, at 4:30 am, that beautiful little girl came into this world far too soon. I was so scared to see her, to have this monumental responsibility of saying hello and goodbye and ensuring that whatever time she had on Earth was full of love. When I pushed and she was born, I was looking at Eric. His face was a mixture of disbelief, fear, but most of all, love. I asked him, Is she alive? and he nodded. I want to hold her, I want my baby, please, let me see my baby, I pleaded. The doctor cut her cord and she was placed on my chest.

I've never seen such a tiny baby. She was so completely perfect. She gasped for breath and Eric said she squeaked a couple of times, but I don't remember. I was crying so hard and telling her how much I loved her and that I was sorry. So very sorry that I hadn't been able to do better for her. Eric quickly held her for a moment, and then my mother in law held her for a moment. As she was passed back to me, I opened my gown and held her skin to skin on my chest. She settled in peacefully, as if she knew her place was right there in my arms. At one point, while I was caressing her and examining every inch of her, I rubbed her upper arm, near her shoulder. She snapped her little arm away from me, as if to say, stop it already, mommy. She would've been a stinker just like her sisters. She also grasped our fingers in her hands, moved her legs around quite a bit, and moved her arms around some more. It was amazing to see how developed and coordinated she was for being so early.

They told us Sydney likely wouldn't survive the delivery. If she did, we'd have only a few minutes with her. She lived for just over two hours. I thank God everyday that He gave us that gift. I am so grateful I was able to have those memories of her. I have no regrets for those two hours of her life. I tried my best to give her a lifetime of love in those two hours. And I did. I am confident in that. She knew my touch and my arms, she heard my heartbeat under her head just as she'd heard it inside of me for the previous 20 weeks. It comforts me to know that she went from my arms directly to Heaven.

On Sydney's first birthday, I resolved to make that day about her life. It wasn't about her death. Her birthday has been a hard day both years, but we celebrate the fact that, on that day, she lived. We want her to live on. Through us, she does and she will as long as we do.

The First

Post 2/31 for Pregnancy and Infant Loss Awareness month

Eric and I were married on May 27, 1998. He had just turned 20 and I was 19. We both knew that we wanted a family, but we also wanted to wait a while. We lived with my parents for a few months, then moved into our own apartment. Within a few months of being on our own, baby fever hit me. We talked it over, went back and forth, and finally decided we wanted to have a baby.

Getting pregnant wasn't an easy task. In June 1999, I was diagnosed with PCOS. We tried Clomid and it did nothing. My doctor added Metformin to the mix and I finally started ovulating. On our second wedding anniversary, I finally got that long awaited second line on a pregnancy test. It seemed so perfect, to find out I was pregnant on our anniversary.

I called our fertility nurse and told her that I'd tested positive. She had me come in right away for bloodwork. I was nervous because the test result had been very faint. The next day, the nurse called and told me that my hcg level was only at 12. But it was still early, so I needed to get checked again on Tuesday to see if the level went up.

We didn't tell anybody what was going on. I went in on Tuesday for my blood test and waited. And waited. And waited some more. On Wednesday, I called the nurse and she told me that the level had gone down to 7. She called it a chemical pregnancy. All I knew is that I'd been pregnant and soon, I wouldn't be anymore. I was so upset, I had to leave work. I went home and cried all afternoon.

A few days later, June 2, 2000, I started to bleed. It was over. I had feared this happening when I finally got pregnant, but was in disbelief that it had actually happened to me. My little June Angel, barely a whisper and then s/he was gone. I've never forgotten my first little one and I never will.

October is Pregnancy and Infant Loss Awareness Month

"Awareness breeds compassion and support. Please don't judge grieving parents; please don't expect them to get over it or move on. Don't tell them how to grieve or criticize their grief. Don't expect them to hide their grief to please others because it is too hard for you to deal with. If it is too hard for YOU to deal with, imagine how we, the parents, feel." ~Me

My goal this month is to blog everyday, about a different aspect of pregnancy and infant loss, my losses, and how they have shaped who I am.

When these months come and pass and people talk about breast cancer awareness, childhood cancer awareness, autism awareness, pregnancy and infant loss awareness, we often think, why do we need awareness? We're aware of these things. Yes, we are aware they are out there, but are we really aware? I love the Faces of Loss I Am The Face campaign because it shows us the real people that have experienced pregnancy and/or infant loss.

I've been an "awareness" mom for many years now, with a child on the Autism spectrum and a parent of preemies. Sure, we all know what Autism is, but how many of us see a child misbehaving in a grocery store and think, he needs some discipline? The true issue may be that he has Autism and the lights, sounds, and other sensory input in a grocery store are too much for him, or his mom had to make a quick run and he was torn away from his 2:30 Thomas the Tank Engine video. No, we just think, My child would never act like that, his mother needs to swat him on the butt.

I digress. There are so many women out there who have lost a baby and never spoken of it. Until a few months ago, I had no idea that a very dear friend had lost a baby almost a decade ago. Our babies are like this dirty little secret that society wants to sweep under the rug and pretend they didn't exist. After all, a dead baby is far too tragic and sad to speak of, right? We have family members who don't speak of Sydney, who refuse to even acknowledge she ever existed. As my quote above says, if it hurts you to talk about her, how do you think *I* feel? She's my daughter and she's gone. I will carry that pain with me for the rest of my life. I've learned how to live with my grief, how to give into it, how to co-exist with it. My grief has shaped who I am. I used to say it changed me, but really, we're all ever changing and evolving. It is shaping who I am today. Yes, that means I'm some times angry and bitter. Wouldn't you be if one of your children was taken from you?

Awareness is about more than knowing something exists. We need compassion, understanding, and support. We need people to freely speak of our babies and to feel that they can tell their own stories. Grieving parents need acknowledgment and do not need to be told to move on, get over it, appreciate the children they have, or just have another baby. Nobody would dream of saying such things to someone who lost their older child or to someone with cancer. Why is it okay to say them to baby loss parents? Somehow, people believe that our tragedy is less than other losses. I was once told, "People believe the grieving period is in proportion to the size of the corpse."

I want people to be aware of Sydney. She was, in a word, amazing. I find it hard to describe the two living hours I had with her, but to put it simply, an angel was in our midst. She fought so hard for those two hours, to stay, to live. It is my greatest desire that Sydney's spirit lives on, through us and through others who have been inspired by her.

Never forget

Tucked away in a box of old papers and pictures is an ultrasound picture from May 2000. It isn't a baby. At least it wasn't yet. It is an ultrasound picture of two follicles I grew that month, one of which fertilized and became our first baby. I found out I was pregnant on May 27, 2000, our second wedding anniversary. It wasn't meant to be, however, and just over a week later, I miscarried. I still think of that baby so often.

Once upon a time, I was infertile and thought I would never have a baby. It's hard to remember that some times, four babies--two planned and two unplanned--later. Getting pregnant was the hard part the first time. Staying pregnant--and healthy--became the challenges in subsequent pregnancies.

When I was 20 and Eric and I had only been married for a year, we decided we wanted to have a baby. Easy enough, right? Wrong! My periods were pretty well nonexistent at that point. My gynecologist at the time told me that I should go on the pill. Uh, I want to get pregnant, not prevent it. As is my nature, I began researching and began to suspect I had Polycystic Ovarian Syndrome. The more I read about it, the more I did NOT want to have it. My boss had just gotten pregnant and told me that I should see her OB/GYN because he was also a fertility specialist. I didn't realize then the impact my first appointment with him would be.

Within five minutes of meeting me, Dr. Simckes told me that I had PCOS. He hadn't done any tests or exams. He just listened. I told him about my history of long cycles which turned into no cycles, weight gain, and other symptoms. He told me what he would see on an ultrasound--ovaries covered in a "ring of pearls" or cysts. Sure enough, a little while later when he did an ultrasound, there was the ring of pearls. I cried. I was devastated. I always wanted to be a mom and suddenly, it seemed like it might never happen. Bloodwork confirmed what Dr. Simckes already knew and we decided to take a few months to think about a course of action.

A few months later, November 1999, Eric and I were in Dr. Simckes' office and I asked him for Clomid. He told me, you need Metformin. I said, no I just want to get pregnant, give me Clomid. Got the Clomid and nothing. I didn't even ovulate. Another month of Clomid left me with a large cyst on one of my ovaries and we had to wait for it to go away. I finally agreed to start Metformin while we waited. In March 2000, the cyst was gone and I started another month of Clomid. Imagine my surprise that month when I noticed my temperature chart actually show a spike instead of a flat line. I finally ovulated. Or, at least, we suspected I had because as Dr. Simckes would say, the only way to confirm ovulation is to get pregnant. I wasn't pregnant that month, or the next. But in May, as I said above, I finally saw that second magical line on the EPT.

Six months later, I was pregnant again. I hadn't even used Clomid. I ovulated on Metformin alone. Thirty six long weeks later (full of anxiety for both Dr. Simckes and me--I'm pretty sure I drove him nuts), my beautiful boy was born. I will never forget the moment Dr. Simckes held up my first born for me to see.

Here we are now, almost ten years later. That beautiful first born son of mine turns TEN on July 19. Three little sisters, a devastating loss, and hope--ten years of parenting wrapped up in four little faces, three I see every day and one I only see in my dreams, and two tiny angels that were barely a whisper before they were gone. I will never forget the journey that brought me to where I am now. How could I? For better or for worse, this is the life I was meant to live.

A new project

Last week, there were a lot of birthdays, angelversaries, and other important dates in the baby loss community. It hit me as I remembered the sweet angel babies of my friends that there is rarely a day that goes by that I'm not remembering someone's precious baby with them. These babies have impacted my life, their moms have impacted my life. I won't even begin to list them because it would be such a long list. It makes me so sad to think of all the little lives lost before they even began.

This realization got the wheels in my head turning. Yes, our babies died. But, they also lived. I know how important it is to me that people realize that Sydney lived. Twenty weeks inside of me and two hours outside. That life deserves to be remembered and celebrated. So do the lives of all the other angel babies I know.

I want to honor our babies. I want to create a place where we can commemorate their lives. I want to create a visual reminder that THEY WERE HERE.

This idea has evolved into a new blog called The Butterfly Effect. What is the butterfly effect? It's the idea that a small event, such as the flapping of a butterfly's wings, can lead to a much bigger event. The blog will be a 365 type of blog and on each day, it will highlight the life of an angel baby (or babies). Submissions can be anything--a memory, a story, a picture--with one requirement--the submission must celebrate the baby's life. What that is, is up to you. You can also pick the day that has the most meaning to you--birthday, angelversary, due date, the day you found out you were pregnant. I would like to launch this site on June 26, the second anniversary of my Sydney's due date.

If you'd like to make a submission, email me at butterflyeffect365@gmail.com. Please include the following information:

Your name
Baby's name
Your blog/website address (optional)
Important date
Significance of the date (birthday, due date, etc)
Picture or story for your post
Any information you would like to share (birth stats, family members, location, etc)
Message to your baby

If I find that I need any other information, I will contact you. This project is still evolving, so I might find that I need more information to give your baby the best post I can.

Feedback is also appreciated. :)

Right Where I Am: 2 years, 3 months, 27 days

It has been 2 years, 3 months, and 27 days since February 10, 2009. Such a short time, yet such a very, very long time.

When I think about where I am in my grief, this quote stands out to me:
"Your absence has gone through me
Like thread through a needle
Everything I do is stitched with its color."
~W.S. Merwin

Today, I am still missing Sydney. I will always miss her. There isn't a day that goes by that I don't think of her every moment. She is a part of my life every moment of everyday. She has taught me to be a better mother and wife, to be more compassionate, and to appreciate the little things more.

There are so many times when it still hits me like a ton of bricks. She's gone. Dead. Forever. I won't see her sweet little face, kiss her cheeks, or smell her skin this side of Heaven. I never got to see her open her eyes. The weight of my grief can still bring me to my knees. The physical pain of Sydney's absence isn't as strong anymore, since her sister is here and fills my arms. There are still moments that I crave her and would give anything just to see her.

She would be 2 years, 3 months, and 27 days old. I'm a mother to older children, so I know what she would be doing right now. Toddling around and getting into everything. I wish I knew what she looked like right now. A few days ago, I was going through her pictures and noticed that Kelsey resembles Sydney a lot. I wish I knew what color her eyes would've been and if her hair would've been straight or curly. I saw a picture in a book that made me think of her. I think it is similar to what she would've looked like as a young child.

My sweet Kelsey has eased my grief in many ways. She's an amazing baby. She can never replace Sydney--nor would I want her to--but her birth gave me hope and a certain healing that I couldn't have achieved otherwise. I've said it before, I truly believe that my girls' lives are completely intertwined. I know that Sydney comes to play with Kelsey. When Kelsey was in the NICU, I felt Sydney's presence so strongly when I was at the hospital.

Two years, three months, and 27 days ago, I didn't think I could live through the pain of losing Sydney. It was debilitating. Every moment of the day, my heart cried out for her. I don't think it gets better. I think you just learn to cope with it. You learn how to live with a broken heart. And for me, I've made it a large part of my life to honor her life. I want people to remember that she LIVED. She made an impact on this world. Her life was so much greater than the 2 hours her heart beat on Earth. I can look back now and see the blessings that we were given with Sydney. I am so lucky that I had 2 amazing precious hours with Sydney. She knew only love for her entire life. At 20 weeks, they told us she most likely wouldn't live through labor and delivery. And if she did, we'd only have a few minutes before she passed away. We got TWO HOURS. I wish it had been so many more, but if she had to die, I have no regrets about how she did. She knew she was loved. She knew our touch, our voices, and the warmth of my chest. After having a preemie before, I knew the importance of skin to skin contact and that's where she stayed--on my bare chest, hearing my heartbeat just as she had for the 20 weeks she was inside of me.

I can talk about Sydney now without crying. Not all the time, but most of the time. I want to help others. I want her life to continue to have meaning and impact others. I want her to continue to live on--through her brother and sisters, through her daddy, and through me.

One year ago...

I was 15 weeks pregnant. At 13 weeks, a cervical ultrasound showed that my cervix was a little shorter than my OB, Dr. S, liked and with my history, he finally agreed to my desire for a cerclage. I'd hoped to have it placed by 14 weeks, but by the time I got on the schedule, I was 15 weeks and 2 days pregnant.

I had the surgery at the same hospital where I delivered Sydney. I hate that place. It ended up being the hospital where I delivered Kelsey and she spent 9 weeks in the NICU. I'd been feeling okay up to that point, none of the pressure or weird pain that I'd had with Sydney closer to when she was born. I was nervous though. The cerclage isn't without risk to the baby.

The surgery took maybe 20 minutes. I was given the lightest general anesthesia possible so I wasn't awake during the procedure. I was so grateful for that. I remember coming out of anesthesia as soon as they wheeled me out of the operating room. It wasn't like the other surgeries I had where it felt like I woke up as soon as I went to sleep. I could tell some time had passed so I don't know if I started to wake up or if it was just because the anesthesia was so light. When I woke up, Dr. S was gone and nobody told me anything about how it went.

After some delay and confusion, I was finally moved from recovery to my room. Dr. S had decided to keep me overnight and I was put in a room on the antenatal floor. The next day, I would have an ultrasound to check the cerclage placement and my cervical length. When I got to my room, Eric was there waiting for me.

When I was settled in, he told me what happened during the procedure. Immediately after, Dr. S came out to talk to him. Eric said the doctor looked really shaken and when they talked, Eric realized Dr. S was shaken. Dr. S told him that my cervix was very soft and had shortened significantly. He got the stitch placed as high as he could. He was very glad that he did the procedure because if he hadn't, we most likely would've lost the baby. Now we had to hope that my cervix would react favorable to the stitch and hopefully length and become stronger with the reinforcement.

Obviously, we know how the story ended. Our baby girl is here safe and sound. My cervix lengthened quickly. The day after surgery, it was about 3.0 cm. Two weeks later, it was about 4.0 cm and it continued to grow longer. The last check at 28 weeks showed that it was 4.5 cm. Typically, the cervix is around 4.0 cm during pregnancy.

I look back to that day and I thank God I listened to my gut. Once I did the research and realized Sydney's delivery was an exact description of incompetent cervix, I was determined to have a cerclage with my next pregnancy. The doctors weren't so sure I truly had an incompetent cervix because I'd delivered two babies in the third trimester and there was an infection found in the placenta. I know my body well and I was determined to have this done. I was prepared to find another doctor to do the surgery if necessary.

One little stitch, a lot of prayer, and God's grace saved my Kelsey's life. I cannot imagine my life without her and I wish that we'd known all of this so we could've saved her sister too.

Going back

Before I got pregnant with Kelsey, I was regularly attending support groups at the hospital where I delivered Sydney and the National Share Office. When I got pregnant, I chose to stop attending because I didn't want to upset anybody. Since Kelsey's birth, it has been a busy time and I haven't been back. But I've decided, this month, I'm going to attend one of the groups.

I know I don't have to tell my fellow BLMs that rainbows don't fix things. I never thought Kelsey would fix things or lessen my grief. Sometimes I think having Kelsey makes me miss Sydney even more. I should have two little girls 18 months apart. Christian and Hailey are 18 months apart, but with a boy and a girl, it's different. When I shop for Kelsey, I imagine dressing my little girls identically. I think of all the things I didn't get to do with Sydney.

Don't get me wrong--I adore Kelsey. She has soothed my soul in a way that nobody else could. I truly believe that my girls have a deep connection and so many things I see in Kelsey and feel around Kelsey only confirm that for me. Their lives are connected and I think Sydney paved the way for Kelsey to be here.

But I miss her. With every fiber of my being, I miss Sydney. I want to know what two year old Sydney would look like, what she would like, who she would become. That is the cloud that continues to hang over me. I ache for the child that isn't here. She's as much a piece of me as the three that are here. I'm not one of those people who can say things like, I'm so happy my child is in Heaven. Maybe my faith isn't strong enough. Maybe I'm just selfish. But if I could choose between Sydney being in Heaven or with me, I would choose for her to be with me, no doubt.

I live in fear everyday. Every fucking day. I'm terrified of something happening to Kelsey. We just got her a crib and I'm scared to put her in it. I worry about my big kids all the time. If I call or text Eric during the day and he doesn't answer, my mind jumps straight to the worst.

So, I'm going back. I need the support. I know they can't fix or even help with everything I'm feeling, but I feel very alone right now. I felt better when I was surrounded by others who understood.

Confession

Today I saw a friend's post on Facebook, saying that her baby will be here in a few days and I realized, I don't think those posts will ever stop bothering me. Even though I have my beautiful Kelsey and I truly never want to be pregnant again, I don't know that I will ever not be jealous of those who get pregnant so easily or who still have that innocence of "get pregnant, have baby."

I'm not the most infertile person ever. I have PCOS, one child who took two years to conceive, one child who took a few months to conceive, and two surprises. I haven't struggled to get pregnant as much as some people have. But the choice to have more children isn't one I was able to make for myself. I know our family is complete, but it would've been nice to be able to say, I'm finished, rather than have a doctor say, If you have another child, it might kill you. I have been blessed, that goes without saying. But I still have jealousy towards those who can make their own choices, have as many babies as they want, and never have to deal with the heartache of loss.

When I read things like, "In a week, I will be holding my baby," I want to scream, HOW DO YOU KNOW THAT?! Don't these women know what could happen? Don't they know all the things that can go wrong? I don't wish it on them, but I wish I could've had that careless joy while I was pregnant.

And then it creeps in. That jealousy--why didn't MY baby live? Why do others get to have 4, 5, 8, 10 children?!?!?! And they are all here, healthy and happy? Why couldn't I have mine? I was supposed to have two big kids and two babies! Why didn't I get that?! I don't understand it, at all. I never will. It's all so unfair and there is no reason or purpose for any of it.