Not just another day

I would love to say that tomorrow is just going to be like every other day.

I would love to say that moving into the new year doesn't sway me in any way.

But it isn't, and it does.

Moving into the new year means that 2011 is over. I can't say that my son died in May of this year. I can't say that it's been a couple months since he was born. In two months, Corbin would have been a year old. 

A year old. 

That scares me. Time is moving so fast. Too fast. 

Before I had kids, even before I was married, the new year was never a big thing for me. I've stayed up to watch the ball drop but it's always been kind of boring for me. In my college days it was just another excuse to stay out and party. It really never meant anything to me and was just another day.

But now it's not just another day. It's a milestone. A road mark along the road of time. Now it means to me that another year has passed since my son was born. Another year that I have to spend without him. I don't want to keep going, I want to stay in the one perfect day we had with Corbin. Before all the doctor's visits, before the ambulance and the emergency room, before all the pain and suffering. 

February 23rd, 2011. The one and only perfect day we had Corbin with us at home. How I ache to return to that day. That day will come again, way too soon, and I dread the emotions that will come racing back. I dread experiencing that day again without him. How I dread February. And look, now we're just two months away.

February isn't all bad. It is also the month my first son was born. February 21st. Some of you may not know, but Monkey and Peanut were born 364 days apart. Monkey on the 21st, and Peanut on the 20th of February. No, I did not plan it that way! 

2012 also brings good news! Indiana will start testing every single newborn for heart defects using pulse ox! Thanks to Cora's mom, Kristine. This is a very exciting, and very emotional time for her, if you could all keep her in your thoughts tomorrow as the testing begins. I'm sure we will be seeing, very soon, an article about a baby that will be saved, thanks to her efforts. 

2012 is bound to be a very exciting year. We will be introducing our WV pulse ox bill to the houses. I will be starting my new job working to spread awareness and education about newborn screening. Monkey will be turning two. But it will also be very painful. Another year without Corbin, and more holidays and birthdays we will spend without him.

2011 was a very hard year for this family, but we did meet and gain a lot of new friends that we can call family. We have found love and support from all over the world and we are so truly thankful. We would not have stayed strong without your support and kind messages. So I want to take the opportunity to thank you all. Thank you for being there. Thank you for caring. And most of all, thank you for not forgetting the Peanut. He is the reason we are all together and working to save lives. So let's toast 2011 to Corbin. To the Peanut and his determination and fighting spirit. 

We love you Peanut and will never forget you. We live the rest of our lives to honor you.

Happy New Year

One night, around a tree...

Yesterday evening, my husband and I, and some of our family attended a candle vigil at the local mall. A friend had started an Angel Tree, where the community could hang ornaments to remember loved ones who have passed or to remember someone who is living and needs prayers.

There were a lot of ornaments hung..

And one for another little baby who had passed. 

Corbin's hung right above his.

A preacher was there to say some prayers, and share some words..

Some of us shared our stories and memories of loved ones passed. My husband shared our story, as I stood and cried. Then we lit our candles, saying out loud the name of our loved one.

There were more words said, then we all recited the Lord's Prayer, then blew out our candles.

After it was over, a few people came over to me to say their condolences and tell me that they had followed Corbin's story while he was in the hospital. It was heart warming to meet the people in person who had prayed for my boy. I was surprised by how many knew about him.

I approached a pregnant woman, who told me she was due in March with her second boy, and told her about Corbin, heart defects, and why all she needs to do is ask for a pulse ox test when her son is born. I never want to scare a mother, so I was a little nervous, considering why we were there. But she took it very well, and sincerely thanked for me sharing my story and said she would be sure to ask for the test. It was healing to know that at least one more baby will be tested.

I was next approached by a mother who told me her niece had passed away from Williams Syndrome as well! I was blown away to meet someone who had experienced the same as us. She told me her niece wasn't diagnosed with William's till she was about ten months old, that she never learned to walk and had developed slowly. She then passed away at 18 months old from undetected heart defects. I cried knowing that I wasn't alone, knowing that another baby had passed away from heart defects, and from the kindness of a stranger for sharing her story.

The entire experience was healing and very moving. A room full of people hurting and missing their loved one who all came together to share their story and share their love. 

The preacher mentioned that by sharing our story, we could be helping that one person who needed to hear it. That one person who may have gone through the same thing. I'm so glad my husband spoke up; I wanted to so badly but just could not get the words out. A father of a young man who had passed came up and thanked us for what we are doing with pulse ox and how we are trying to save lives. It was heart warming to hear those words. To know that other people truly do appreciate what we are doing.

The preacher also mentioned that sometimes people receive a sign from their loved one. He said it's not coincidence and that it is truly a sign from God that your loved one is okay. I shared with him the time I was at Corbin's grave and a tiny white moth came over and touched my leg, then flew away. Then the time I was listening to "If I Die Young" by The Band Perry, and the line "make me a rainbow, I'll shine down on my mother" came on the radio. I send up a quick prayer hoping to see a rainbow as a sign from Corbin. And not a minute later, to my left, was a double rainbow! In times like that, there is no way you can say it was a coincidence. God heard my prayer and sent a rainbow to let me know Corbin was okay. No matter what you believe in, it is always amazing to see those signs. 

I also met a mother whose little boy had passed away two years ago. I approached her crying, saying "I'm so sorry", and we shared a hug. She told me that slowly over time, it gets less painful. She also has a two year old. It's good to meet someone who has so much in common, though I wish we didn't share infant loss.

I hope they can do the Angel Tree again next year. I enjoyed sharing our stories and sharing tears with others who had gone through the same thing. Thank you to those who approached us with your kind words, it was nice to hear.

My best friend

It surprises me how well my best friend knows me. She called me one day, I answered, and just from my greeting she knew I was depressed. I said nothing about it, I was even making an effort to sound "normal", but she knew.

My best friend knows that sometimes things I say come out wrong. 

Example: 

Best Friend: Please excuse the mess in my house, I haven't had a chance to clean.

Me: Oh don't worry about it, I'm used to it.

To any outsider, that would sound like I'm used to her house being a total mess and that it doesn't matter anymore. But in truth, I meant that I know she's busy and tired and hasn't had a second to herself and on her day off, she just wants to relax.

NOT that I think she's a slob.

My best friend knows that when I'm down, all she has to do is leave a Chuck Norris joke on my Facebook wall, and it will be sure to make me giggle.

My best friend knows I would marry Sean Connery in another life and I think his accent is divine. 

And that this poster cracks me up every time.

My best friend knows me better then I know myself sometimes.

My best friend says things like "Ruth, your Marrs is showing". Referring to my tendency to say the wrong thing.

I don't know where I would be without her. 

Literally. 

She's the one that introduced me to my husband.

My best friend is my sister and I love her. I'm so thankful our lives intersected 11 years ago.

I just wanted to make sure she knows I appreciate everything she's done for me and I know we will be friends for a very long time. <3

Published!!

OMGOSH I'm so excited!

My article (that I wrote for the American Heart Association about pulse ox, heart defects, and Corbin's story) has been published!!!!

This is a huge step. This isn't just networking through Facebook, Google+, and Twitter anymore. 

We're in print!

So it is super, uber important that you share this story! We need you to share so that as many people as possible will read this article and join our cause.

Our cause to save lives.

To save lives in honor of Corbin.

It only takes a second. So please, please, pretty please SHARE!

Social media is powerful. Let's see how far we can spread this?!

Find the article here.

Ornament

This is our first Christmas without the Peanut. I don't know if it makes it any easier or harder because it is our first, since we haven't celebrated it with him before. But it is hard in the sense I don't know what to do to include him. I've never had to do this before.

When I heard there was an angel tree at the mall, I was excited to make something to not only could we remember Peanut, but everyone who saw his story could as well. 

So I started to make a Christmas ornament to hang on the angel tree. 

The supplies:

I've had this ornament since Monkey was born, but have never used it. It was perfect.

I hand painted around the frame...

I love how it turned out.

I took his along with an ornament I put together in honor of Cora and her two year death anniversary and hung them together on the angel tree at the mall in Beckley. They are trying to raise money for Hospice so I made a small donation as well.

In memory of Corbin and Cora. <3

What to say

"So, is he your only child?"

Such a hard question to answer. 

I was perusing around TJ Maxx today for Christmas presents and Monkey was whining because I took away the kids-size sauce pan he was playing with. A middle aged woman stopped to cheer him up and we started chatting.

Whenever this question is presented, there is always a long pause where I am debating whether or not to answer honestly.

It's not because I don't like talking about Corbin, or that I don't want to take the time to explain. I love talking about Corbin and spreading his story. It's just sometimes you have to consider where you are, what time of year it is, and if the person asking will honestly be interested. There are times I do say I have two kids, but then there is always the chance that your new friend will ask further questions. "So how old are they?" "How far apart are they?" What are their names?" It keeps going and warrants further explanation. It's not always the appropriate time; say when you are checking out at the store. Sometimes it's not the appropriate place; say a doctor's office full of pregnant woman. There are better ways to spread awareness then by starting out a conversation with "my son died." So sometimes I just avoid the awkward moment of: "Oh....I'm so sorry" by saying I only have one child. 

It's hard to explain the feeling unless you have experienced it yourself. After someone asks you how many children you have after you have lost a child, there is a tiny moment of panic. For me at least, there is. Mainly because I never know what is going to trigger the water works. Sometimes I can go through an entire, lively conversation on heart defects and pulse ox without batting an eyelash. But then sometimes all the other person has to say is "I understand", and then the tears flow. 

Like I said, it's not that I don't like talking about Peanut or what I so strongly believe in; it's the chance of an emotional breakdown that I am debating whether or not I want to risk. 

Photo Shoot

This past Friday I was asked to come to the American Heart Association office in Charleston to take pictures of some of the local heart kids. They are throwing a ball in the near future and needed a photographer to help with the invitations.
I said "of course!".

Everything went as expected with toddlers in a small office...

Energy! Excitement! Meltdowns!

But it was fun. I was able to get some good shots for the invites and the kids had fun playing with each other and running around the AHA office.

I was watching the kids play and I noticed one of the AHA guys talking to two other heart moms. I thought nothing of it till one of the moms, Kathy, came up to me and asked if I would mind if they included Corbin.

I immediately broke down crying.

It was so unexpected and so sweet that I couldn't help but cry! It never crossed my mind that we would do something like that. It just meant so much to me.
So I wiped the tears from my face and recomposed myself. I grabbed one of my photo props, a chalkboard, and wrote "Corbin's Warriors" on it. One of the older heart kids was nice enough to pose with it while I tried to get a picture of all the kids looking at me.

I can't wait to get a copy of that picture.

A big thank you to the American Heart Association for being so great and taking the time to include my Peanut. A thank you as well to my fellow heart moms and their kids, it was fun hanging out with them all.

It's the little things like that, that really make my day. Those moments will always be with me and I am so thankful. <3 

Join us!

Finally an update! Our pulse ox efforts have been going slow lately, but that's mainly because this is an election year and we have to wait for everyone to stop fighting over positions. We can't pick a sponsor if their position is going to change because we want to be sure to pick a sponsor that will be in a group related to health to up our chances of passing the bill.
Then you have to throw in the emotional aspect of politics. Don't get me started...it's really complicated.

But we finally have something you can do! In order to keep in contact with all our supporters easily, we are asking everyone to sign up at: http://www.yourethecure.org/default.aspx so we can send group emails when we need your help! Say it's the day before they are going to sign on a bill, we need you all to send emails to the legislators showing that you all support our efforts and that it is important to more people then just us. This way you are all involved in helping us pass this bill!
It is crucial we have a support team that will back us up on the days we need that flood of emails. So sign up and spread the word! You can help!

Today

Today is going to be hard.

There's a lot of stress, anxiety, worries, and depression.

Today is going to be hard.

The Dentist

The other day I had a dentist appointment.

It was my first visit to that dentist as we have started going to a new dentist after our old one kicked my husband out for missing 5 appointments in 5 years. His last missed appointment was while we were in Morgantown with Corbin.

Needless to say we were upset. But I digress...

It's a very, very nice office. The nicest office I've seen yet. They offer coffee, which no doubt, brings back business for teeth cleanings! Smart!
Anyway, I was led back into the little room and had x-rays taken, my teeth cleaned, polished, buffed, and poked at. After all that business was done and I was waiting on the dentist to come look at me, the assistant asked
"So you have two boys?"
-pause-
"Yup" As I notice the picture frame full of photos of her two boys. Oh boy. Please don't ask, please don't ask.

"How old are they?"
-longer pause- Should I tell her? What do I say? Oh dear...
"Um, Colt will be two in February. And...um, Corbin...Corbin passed away in May." As I break down into tears.

"Oh dear, I'm so sorry"
-more tears-

She brings me tissues and we are interrupted by the dentist arriving. We chat about teeth and mouth guards, then he leaves.
The assistant asks me more about Corbin. I tell her I don't mind talking about it but I'm sure to cry. She surprises me by sounding truly interested and asks good questions; keeping the conversation going. We chat about pulse ox and how we agree every newborn should be tested. I explain to her what Williams Syndrome is and she again, seems very interested. She admits she has never heard of it and nods her head as I explain the traits and medical problems associated with the syndrome. She smiles as I explain the quirks also associated with Williams, like their good vocab, their issues with math, and that most (if not all) that have an affinity for music.
I quite enjoy our conversation and am so pleased that she was interested. I haven't talked to someone about Corbin that seemed honestly interested in the medical side of it all. Mostly I get an "I'm so sorry, what happened" but no more.

So I may have made her feel bad by crying, but one more person knows Corbin's story. And that is the best part.

Carvings

I wanted to do something to include Corbin this Fall. Monkey and I went to a pumpkin farm with two of my friends and their daughters. The kids had a blast and we were able to enjoy a few activities and pick up pumpkins for under $20!

To honor Peanut and have him included, I carved a pumpkin for him.

I started with two medium pumpkins

Traced out the boy's names in pencil

I added wings to the C of Corbin's name

The carved the skin out with a kitchen knife.

Big brother

little brother

I also added a halo to the I.

Very easy cleanup and I love how they turned out.

What have you done to honor your angel baby this Fall season?

Memorial Wall

I've been working on a project. And now I'm done.

I'll let the pictures speak for me.

Love you Peanut.

Heart racing

Heart racing, pulse rising...I can't watch other babies go through what Corbin did. Dear God, give me strength. This past week has been so hard. I miss him and the pain makes me want to stay in bed all day and not talk to anyone.
A new mother was told her daughter might have heart defects. I found out that there are no serious heart problems but I can't help but worry. She says her daughter has really bad jaundice; Corbin had really bad jaundice. Just the thought of "what if they're wrong?" sends my heart racing. I feel the fear come back. I can't breath. I'm terrified for this mother, for the things she doesn't know, for the things I DO know. Dear God, what if they're wrong? What if this mother goes home and her baby dies in her arms? There's nothing I can do. I can't tell this mother "I think you need a second opinion". I can't put that amount of doubt, worry, and fear on her shoulders. So I carry it instead. Am I losing it? Am I going to think every baby is going to die? The fear, the worry, the wild thoughts.
What is wrong with me?

Bad day

So I'm having one of those days where everything makes me mad, everyone makes me mad, and I just want to punch something.
I feel like I'm drowning and no one looks toward my screams for help. Just go about your day, don't mind me! I'll just be here, by myself, trying to keep my head above water. Have fun in your lovely life, where you have no worries bigger then where you are going to eat lunch.

I just have a head full of negative thoughts and they are threatening to explode everywhere. God help me keep my calm. Today is one of those days...

Thank you

I haven't been a very good blogger lately. I started blogging with the goal in mind of attracting a wide following, posting neat, interesting posts, having lively conversations, and sharing my passion for photography and life. I wanted a blog that was fun to read, offered recipes and crafting tips; somewhere you could go and have many interesting things to read and talk about.
Then life happened.
I haven't lost that goal, but it has been catapulted to the back of the line of "important things to do". Like paying off Corbin's headstone, earning an income, and remembering to eat.

I feel like I should apologize but I'm not going to. The past few days have been hard. I think emotions and feelings are catching up with me; that the grief I have been avoiding by staying busy is creeping back in. I can't hide from it or run from it; it finds me at any moment and breaks me down. Combined with the beginning of Pregnancy and Child Loss Awareness Month, I just don't feel like being social or interacting with people.

I guess my point is I have to go at my own pace. Blogging has been really therapeutic for me and the fact that people are reading what I'm writing helps. There are people out there who hear what I say and they (sometimes) have something to say back! That is really so cool; to have feedback. So thank you for reading.

Heart Walk 2011

It was a beautiful day for a walk. My two hour drive started out cold, cloudy, and there was no promise of sunshine but by the time I reached the capitol building, it was gorgeous. 

It started with a welcome speech and introducing the teams. Here is Kathy and Michelle with their Jacobs. Little Jacob on the left is missing the left side of his heart (Hypoplastic Left Heart Syndrome) and big Jacob is missing the right side (Tricuspid Atresia) . They are certainly a pair in more then one way.

I was really happy with the amount of people that showed up. There were bright team shirts all around the capitol that morning and it was inspiring to see their excitement.

Then we warmed up for the 5 mile walk with a little booty shaking to Lady Gaga.

Then off we went! 

The talented Kathy made up our team shirts this year and she did a great job!

The man of the hour: Little Jacob. He was quite content to ride in his stroller, munching away on his goldfish!

The streets were blocked off from traffic so there was plenty of room to spread out.

Big Jacob was full of energy and kept the pace really well.

Along the median they had signs posted with various heart facts. 

This young man was also a Jacob! 

So true and so sad.

We walked to the bridge, then turned around and headed back.

5 miles went by fast! The majority of us feeling the pain already in our knees!

Such a great team!

I really enjoyed being able to talk to other moms who have experienced the same thing as me. Its nice to have someone who understands the hospital stays and up and downs of learning about your child's heart problems.

Kathy and Michelle really did a great job and I can't wait till next year!

If you would like to learn more about heart defects, please visit here.