Monday, September 19, 2011

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.


Friday, September 16, 2011

Scattered

Tomorrow is the Heart Walk. I'm nervous. It will be my first time attending a heart walk and, as you know, anything heart related is very important to me. I know I won't be the only angel mom, I most definitely won't be the only heart mom; but I feel like the "new kid". Silly, I know.

I haven't been writing like I used to. I've dived into my photography business trying to stay busy, trying to make money, trying to feel like I'm contributing to society. Photography, school, gym, horses, the Monkey, networking pulse ox, tweeting, pinning...anything to stay occupied.

Corbin's story was recently featured on Band Back Together. Check it out and read the comments. I can really feel the love and that is so helpful. It helps to know that other people know about Corbin. That is more people's minds he has been engraved into. That is that many more people who will not forget. I'm spreading his love and strength and that means the world to me.

This post is kind of all over the place. But that's okay. Because that's how I feel.

Oh, and Peanut's headstone will be here Monday. I'm actually kind of excited, is that bad? It makes me feel happy, in a way, to have something so strong and long lasting with his name on it. It will last forever and I love that thought.

Monday, September 5, 2011

Just say you're sorry

If you have or know someone who has lost a child, I just want to share something with you.

It's okay to fall apart.
You don't always have to be put together or brush your hair.
You don't have to act strong.
You don't have to get out of bed.
You don't have to forget.

I feel like sometimes grieving mothers are pressured, in a way, to act strong, and put together, and to go on almost like nothing happened.

"Oh, your so strong though, you'll get through this"
You know what, maybe I'm not that strong! Maybe I just feel like laying on the floor, holding my dead child's blanket for a couple hours. Maybe I feel like visiting his grave just to sit and cry.

"Everything happens for a reason"
So my child was supposed to die? and that makes it okay? Thanks for that.

"God needed another angel"
Implying that God wanted my child to die doesn't make me feel better.

"At least you have your other child/children"
That doesn't make the pain of my loss any smaller. In fact, watching my healthy toddler makes me cry harder, knowing that my angel baby will never do what he can.

"You need to do *insert action*"
I'm sorry. Have you gone through this? No? Then don't tell me what I need to do. Telling someone they need to do something differently implies that there currently are doing it wrong. There is never a wrong way to grieve.

I could go on.
There are all kinds of sayings and phrases that society thinks is supposed to help us. I find that just saying "I'm so sorry" does just fine. So please, avoid using these phrases in the presence of an angel mom. She knows what she's supposed to do. She knows how she's supposed to act.

But sometimes, all she wants to do is cry.

Saturday, September 3, 2011

Newborn screening awareness month!

It is the month to share about newborn screening! Please take a minute to read and educate yourself then please pass it on!

Newborn screening is a series of tests given to your infant shortly after birth to test to certain defects/disorders/diseases. This you may have already known.

What you may NOT know is that 1 in every 250 babies tests positive for a disease. With the addition of pulse oximetry (in some states) babies are now being tested for heart defects. Sometimes called the 6th vital sign; pulse oximetry can help save a life.

Please read and then share. The more who read this, the better chance we have at saving a life.

To learn more about pulse ox, click here.
To see if your state uses pulse ox, click here.
To contact someone who is already advocating for pulse ox in your state, click here.

Thursday, September 1, 2011


My story was finally published on Faces of Loss. I don't know how I feel. 

I wish I didn't have anything to share. 
I wish I never had to tell this story.

The picture of me is sad for a reason. I see so many other pictures of mothers on that site and they are smiling. Yet their story is so heartbreaking. I understand that may have been the only picture they had or the only one they wanted to use. I just felt is was inappropriate for me to post a picture of myself smiling. 
Why would I be happy to post about infant loss?
I'm not. 

So feel free to hop over to Faces of Loss and leave some love. Not just to me, but to other grieving mothers.