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.