One hour of sharp stabbing pain later, I have an angel on my shoulder <3

Love you Peanut

Worst enemy

Part of greiving is the totally random, cannot be predicted emotional breakdowns. They hit me in the grocery story, while I'm in Zumba, driving down the road, and last night it was in the shower. I was thinking about Monkey's doctor appointment that morning which led to "did his doctor ever meet Peanut?" then me imagining the day I had Peanut at the pediatricians office then how he had to get his blood taken and how much he screamed and cried.
I realized with a schock that I don't remember what Peanut's cry sounds like.
Oh God...I don't want to forget. It was awful. I cried as the water was running. I cried as I got out of the shower. I cried as I got dressed. I cried as I climbed into bed.

It was such a horrible feeling. The guilt was overwhelming.
How could you forget your son's cry? What kind of mother are you? Didn't you love him?!

I'm my own worst enemy. God help me.

Shame on you

It has reached my attention that someone on Facebook has stolen money from a fund intended to go towards a sick preemie. This unnamed person was "helping" with the fundraiser, there were some "problems" with the paypal, and now a dear friend's daughter will not be receiving the funds.

This makes me sick to my stomach. SHAME on you. Deep, guilt ridden, twisted stomach, fear for your soul kind of shame. You are a low life form and I hope to be around when Karma kicks the tar out of your behind.

This is a warning: Do not trust all the fundraisers on Facebook. I apologize, as I helped spread the word on this particular fundraiser. I apologize more if you donated money, like I did. I can only hope that this will help spread awareness.

I'm going to go cool off now...there is still steam rolling out of my ears, I'm so mad.

A name in the sand

Thanks again to the Dudley family for filling my request. Cody and I are so appreciative.

If you want your baby's name written in the sand, visit this website. Keep in mind, they only take requests occasionally and the service is only for babies that have passed away. 

Help spread the word!

In an effort to get a bill passed in West Virginia to make Pulse Oximetry Screening mandatory, I and two other moms (Kathy and Michelle) have joined forces.
Kathy has a blog as well, and has covered our goals and links to helpful information here.

This is a very important cause to many people. 1 in 100 babies are born with a heart defect. This simple, non-invasive, and cheap test can save lives. Not all heart defects can be detected by this test, but it is effective in many severe cases and still very important. A quick diagnosis is crucial with many heart defects. Corbin had an interrupted aortic arch and if not treated within 4 days, is deadly.

Even if you do not live in West Virginia, you can help your state by visiting your pulse ox group on Facebook. (Here is a list of states)The more people who read this, the more awareness we can spread, and the quicker we can get Pulse Ox mandatory in every state. Maryland and New Jersey have passed the bill already, lets keep the ball rolling!
Here is a link to a petition targeted at all lawmakers in all states to show how important and how many people care about pulse ox screening.
*As of right this moment, the site is down. I suggest waiting till tomorrow to sign. Right now there are so many people trying to view it, it's not working. (awesome sign!)

If you know someone who is pregnant, pass on the word. Send them these links and help us educate others about the importance of Pulse Ox screening. Every baby matters. Its better to have heard the information and not need it, then to be taken by surprise.

Signs to look for in a newborn that may point to a heart defect are: blue feet or hands, extreme jaundice, abnormally heavy breathing, shortness of breath, having to take breathers when nursing, and a bluish tint to the lips, fingernails, and skin.
*extreme jaundice is not necessarily a sign. I only list it from experience and from hearing other heart babies suffered the same*

Don't forget: 20/20 is airing a segment on Williams Syndrome tonight at ten!
Here is the link.

It's okay

Yesterday I felt like punching someone. My poor husband got snapped at a few times, but he is good about realizing I need to be left alone.
All because of Facebook.
I came across two stories.
The first was of a mother who found out her baby had Williams Syndrome while still pregnant. My first emotion was disbelief. Then curiosity. Then anger. Anger at our local hospital for not catching Corbin's WS sooner. Anger at the ultrasound tech for not catching his heart problem. Anger at the hospital for not having an echo machine. Anger at every doctor that told me there's nothing to worry about. I wasn't mad at the mother or her baby; its wonderful they caught it so young so they can run the necessary tests to ensure the baby will be healthy. It just felt so un-freaking-fair that Willimas Syndrome was fatal to my baby. There are hundreds of other WS kids that never experience heart problems. Why did mine have to? He had a broken heart that the best Pediatric Cardiothorasic Surgeon in the state couldn't fix.
Then another mother posted about her son and his heart surgery. He had aortic and pulmonary stenosis, just like Corbin. He's now 11 and doing great.
This pissed. me off.
Again, I'm not mad at the mother or her child. Just the circumstances. How in the hell were his doctors able to fix his problem but Corbin had to die? I would never wish what happened to Corbin on any other baby. It was a long, painful, scary, and nerve wracking experience. But he had the same thing...why couldn't his doctors figure it out?
It broke my heart to read that.
The kind of heart break you can hear.
Another crack in my heart.
All I could do was stare at the computer screen, tears running, heart breaking, trying to understand why.

Fast forward a couple hours. I'm at my Zumba class trying to follow along. Yes, I'm new at this. Yes, this is only my second class. But damn it to hell, I'm the kind of person who wants to be good at something the very first time. I look at myself in the mirror. Sweaty, red faced, and looking like a sorry white girl trying to dance. I have two left feet. I cannot coordinate my arms AND my legs. I seriously have to concentrate, sometimes with my eyes closed, so I get the steps right. God forbid we have to move our arms and legs at the same time. Forget that. I just stop and watch the instructor till I can get it right in my head.
I get so mad that I can't get the steps right. I'm mad that I'm not perfect at this. I'm mad that the girl in front of me is skinny. And pretty. And knows all the steps. I'm mad that I even have to be here; that I have to lose weight. I'm mad at myself for not being in better shape. I'm mad that I have time to be here. I'm supposed to be home with my newborn. But I don't have a newborn anymore. I have a necklace around my neck with his name on it instead. I have the scars of a mother who had to bury her child.
So there I was, halfway through the class, trying not to cry.
I wanted to walk out.
I wanted to go out to my car and just cry.
But I didn't. I stayed. I finished the class. And I felt better afterwards, but that doesn't take away the emotions I felt.

I read about how other mothers grieve. We are all different. I am not depressed all the time, I'm not starving myself, I'm not letting the house get out of control. I'm the internal griever. I think about it. All the time. Constantly thinking, re-evaluating. I go over scenarios and think what-ifs. I don't cry every time I see a baby. I have triggers that set me off.
And that's okay. I'm not supposed to grieve like everyone else. It's okay if I am able to visit my baby's grave without crying. It's okay if seeing his baby outfit does make me cry. If you are grieving, don't feel guilty for not doing something you feel you are "supposed to". I feel like that all the time but I have to remember that it doesn't make me less of a mother. I still love my baby. I miss him constantly. I am always thinking about him and wondering what heaven is like.
He knows I love him.
He knows I miss him.
That's what matters the most.


I'm so excited.
A fellow heart mom posted a link to a blog. The blog is run by a couple in Australia who, periodically, take requests from mothers of angel babies. They take the requests and write your baby's name in the sand at the beach at sunset, take a picture, and email the jpeg to you.

They started the idea after their own child was born a stillborn. The mom had a dream she saw him on the beach and as she got closer, she could see where her son had wrote his name in the sand. The next day, she went down to the beach to write his name and take a picture.
They have been doing it ever since.

Corbin is on the list.

I can't wait to see his name written. It's going to be beautiful!

A break from words...

I was going to write a depressing cliche about how sad I was yesterday, but every time I read back through it I wasn't "feeling" it. It just sounded forced.

So here instead are some pictures I took around the farm.

And of course, I have to add this...

Happy Tuesday!

Red balloons

When you wake up on the day of your baby's funeral, it helps to be very busy.
Busy getting ready, busy wrangling a toddler to the babysitters, busy doing whatever you can to keep your mind off the fact you are burying your child today.
That morning was a madhouse. I remember feeling very stressed. Stressed that we had forgotten something. I wanted the day to go smoothly. Perfectly. Quickly.

When we arrived at the funeral home, I was surprised by how many people were there already. Rachel sticks by my side as I greet people. My dad had arranged a video to be shown. As he popped the DVD in the TV: it didn't work.
So my dad and my brother run to Radio Shack to get a cable so my dad can run the DVD on his laptop to the TV.
I'm stressing out that it's not going to work. I so desperately wanted people to see this video. I wanted people to be able to see Corbin, how he breathed, how he sneezed, how he looked before any hospitals. I wanted people to see the baby that I knew.

Turns out, my dad put the wrong DVD in, so once we switched it out for the correct one, it worked just fine.
Everyone arrives, so the preacher starts.

He begins with Psalm 23. It's not my favorite verse, but I appreciate what it is saying. I don't really pay attention to what the preacher is saying anyway. I am looking at the pictures surrounding his casket. Daydreaming about how things were before any of this happened. How small he was the day he came home and how his car seat was way too big. I thought about how tired I was from all his early morning feedings, and looking back, I should have cherished those quiet moments we had together. I felt guilt for not realizing how special those three days were until now.
I stare ahead, lost in thought.
He goes on to say a prayer, then some preaching. I remember thinking: "He sure is on a roll", but I didn't mind. I was in no hurry to go to the graveyard.
Then it was time for the video.
I break down immediately. I don't try to keep it in. It hurts to watch the video but at the same time, I love watching him. I'm taken back to the moment those clips were taken. I remember the first time I got to hold him, his first sneeze, and how it was 4 in the morning when I recorded that video.
I don't look around, but I can hear sniffling and crying.
I think: "Good, I hope they cry."
I want people to feel my pain. I find a twisted sense of pleasure when I hear others taking it hard. Let them cry.
The video isn't long enough. I wish I could sit there and watch it over and over. I'm not "here" when I'm watching it. I'm back with my baby, before he was in pain and broken. Back to when he was home where he belonged.
Cody and I are holding hands. There aren't any words for what we are feeling.
There is another prayer, then the song.
I only wanted one song played. I sung it to Corbin when he was in the hospital.
You are my Sunshine.
Have you ever listened to the whole song? and actually listened to the words? It breaks my heart. I hear more crying, more sniffling. I can only hold Cody's hand tighter and we both weep for our son.

After the video, the service is over. There will be no open casket. I don't want people to see him like he is now. The last time I saw him, he was very swollen. The funeral director told me it's nearly impossible to get him to look like "normal" so I declined a viewing. I don't understand why people have viewings anyway, they are just morbid and depressing. There's no need to make this day any worse.

I quickly make my way outside and into the truck. I don't stop to talk to anyone, I don't make eye contact. I just want to be alone.
We wait for people to get into their cars, then pull into place behind the funeral car. I can't stop thinking: "Our baby is in that car."
Cody tells me to stop thinking about it.
The drive to the graveyard is very long. A long 15 minutes of watching the car in front of you carry your dead child to be buried. A long drive to think about how you got here; about the chain of events that led to this day.
A long drive to think.
My hands are shaking. I don't know what to do with them so I wring them together. I'm unaware of what others are doing behind me. I'm watching two of Cody's friends pull my baby's casket out of the Hearse. I keep praying: "Please don't drop it. Please don't drop it."
They gently place his coffin in place. There are chairs sitting in two rows. A green canopy overhead. A bunch of red balloons are waiting to be released.
The preacher says a quick prayer. The family each puts a red rose on his coffin, then everyone groups for the balloon release.
It takes a couple minutes to untangle them all. I feel irritated that the balloons are tangled beyond measure. What idiot put these together!?
Finally they are all passed out.
Cody tells me to say something. I tell him no, you say something. He tells me to go ahead. By now I want to smack him in the face. I don't want to say anything because I know I will cry. Frustrated, I begin.
"We are releasing these balloons in honor of Corbin's Williams Syndrome and his...."
I choke up. Crying. I was going to say "heart defects" but I couldn't get it out.
My mom counts down from three.
The moment of the release is beautiful. I feel an immense surge of joy, watching the balloons take off. I can't find the words right now to describe it. Just the motion of letting them go and watching them sail into the heavens was perfect. It wasn't closure, it was more like a gift. My gift to my child. It was like I was saying "I'm letting you go but I'll never forget."
I'll never forget you Peanut.