Tuesday, January 18, 2011

"Born With A Broken Heart "

I can't remember how I "met" Annette. I know our paths were bound to cross, though. We have too much in common. We are both moms to CHD angels in Heaven. Her son, Alex, died at age 2 in 2007. Annette and her husband Rick wanted a way to share their story with the world and to help educate others about heart defects. They wrote a book about their son called "Born With A Broken Heart". Its an extremely touching story and is beautifully illustrated.

In the process of writing the book, Annette asked me (and other parents) if she could include Tommy's story in a special section of the book. I agreed without a second thought and got down to condensing his story for the book. It seemed like forever ago that I emailed her what I had written. Last year, the book was updated and new illustrations were added. I can't tell you how gorgeous the illustrations turned out!!

All proceeds from the sale of the book go to Alex's Heart Fund at Cedars-Sinai Medical Center.

The book can be purchased several places, including Amazon and on their website, here. I feel very blessed to have Tommy's story published and being read by so many people. Annette has helped me to heal by putting my words about my son into print, along with her own precious angel. Thank you, Annette and Rick, from the bottom of my heart!

Wednesday, January 5, 2011

I'm Tired

It's that time again. I'm starting to hear that the CHD community is gearing up for Awareness Week. I used to love Awareness Week. This year, not so much. I'm tired. Weary. I just don't feel like participating. I know this may offend many heart moms out there that tirelessly campaign for more funding for research, more awareness about what a CHD is and saving lives. I greatly appreciate those of you that continue this endless fight. I'm wrung out. I've tasted the bitterness of watching my child die and repeatedly watched this past year as other families I've grown to love have tasted too.

I'm tired of reliving the pain over and over again every time I try to raise a little awareness. I'm tired of telling Tommy's story and seeing the look of horror on people's faces as they try to come up with some phrase, something clever to change the subject. They tell me they're sooo, sooo sorry, that they just can't imagine my pain. They wonder out loud how I get up each day. Tsk, tsk, tsk. Then they give their little heart sticker to their 3 year old to eat and go about their day. When they leave, they forget all about me and I'm struggling to psych myself up to tell the next person the same heart wrenching story again.

I CAN'T. I want to be NORMAL. I am sick and tired of pity. I know I could not comprehend the loss of a child until I had one that could die any day and when he did, I realized I never understood completely. I see that a typical person would not comprehend either. Or they're the type to one-up me with so and so's kid was sick, died, had a murmur, related to someone with _______.

On the other hand, I will NEVER be normal. I will always be the mom of a medically fragile son with multiple heart defects who died suddenly while I watched him take his last breath. I'm shattered, fractured, put back together with pieces missing. I suspect deep down inside the reason I dyed my hair pink was to take the focus off my broken heart.

I may change my mind about raising awareness. I doubt it. I can't bring myself to even consider going to the heart walk this year. It is like being stabbed over and over again every time I see a little one running around, laughing and playing, knowing they survived. I'm happy, THRILLED for them and their family but the pain of missing my own little one laughing and playing hurts more than I can describe. Then there is seeing the ones that are a little sicker, maybe on oxygen or a feeding tube. Reliving the memories. I falter between cherishing and loathing those memories. How can I be thankful for something that hurts me so much and yet at the same time be thankful I have those same memories?

It's been 2 years, 4 months, 2 weeks. I'm not much better today than I was the day I said goodbye to Tommy. In some ways, I'm stronger, in other ways, I'm a wreck. My memory is shot. I forget stuff all the time now. It really stinks to forget to pay a bill, but not be able to forget the last sound my child made. I don't think I am bitter over his death. Just tired of the reminders. Tired of reliving it.

So, for now,  I will not be raising any awareness. I applaud those of you that do! You are my heroes. For those of you that are walking the path of having lost your child and STILL raise awareness, I am in awe of you.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries