Wowww. It's been since November. I would be surprised if I had any readers left, but I am a Mommy first.
I have spent all five days of this month, February, "heart month", CHD Awareness month, thinking about how I want to address the significance of it without sounding redundant. If you have read my blog for any length of time, you have seen the many posts about Paxton. His journey. His fight. His stunning bravery, of which I don't know that I would have in his shoes. I have written about it all many times. To me though, there is nothing redundant about it. Nothing redundant about living day to day wondering if he will wake up tomorrow, because guys, that is our reality. Panicking if he oversleeps. Holding my breath as he goes to ju jitsu and attempts to be a normal child, never quitting, not even for a second, while I sit and watch his lips turn blue as he exerts himself. Waiting. Just waiting for the ball to drop. There is nothing redundant about being a Mom to a boy with half a heart. There is nothing redundant about being a Mom to a child with cancer. Or liver failure. Or SCID (Deklan and Jenna, I love you and I have never even met you, but I will. I promise you that.)
There is NOTHING redundant about being a Mom to a child with special needs.
So I will not apologize or hold back my shouting from the rooftops that tomorrow is WEAR RED TO SUPPORT AND RAISE AWARENESS FOR CONGENITAL HEART DEFECTS!!!!! I will not shy away from asking you all to join us in doing so. I don't care if it's a sock or your best pair of red granny panties, just please support all of us on this journey.
1 in 100 babies are born with a congenital heart defect. More than all childhood cancers combined. NOT that it matters one iota which disease is bigger or badder. I am simply stating how prevalent CHD's are and yet so few know about them. I, for one, can come forward and say I didn't know jack or shit about congenital heart defects until I was laying on that ultrasound table and the tech said "Jen... there is something really wrong with your babies heart." Til the day I die, I will never forget that feeling. And until the day I die I will never stop praying and begging and hoping, for not only my own son's life, but for all of these children who have to endure so much so young. I don't care what from. These kids. God are they brave. We adults, wouldn't stand a chance against them.
Tomorrow though. Tomorrow is Paxtons day. Kians day. Mateos Day. Ashers Day. Graces Day. Grahams Day. Jacks Day. Sadies Day. Zoeys Day. Izaaks Day. Bodies Day. Olivers Day. Emmas Day. The list, my friends, sadly, goes on and on. Among those I listed are several angels. There are many, many more CHD angels among us. Gone far, FAR to soon, having fought hellacious battles in their short time here. Those of us who still have our warriors here, are the lucky ones. Every single day that he is here, we are lucky. I never lose sight of that.
Paxton has gotten to the age where he has begun to understand that he has a "special heart". Oh' just let me tell you all the ways that he does not like it. He despises being different than his brothers and wants to know "why he is the only one in the family with a special heart??" Why he has to wear a chest guard. Why he has to take medicine. Why he has to get pictures of his heart. We answer the questions as they come. We stress his awesomeness daily. He knows his bravery.
Friends, take the time to read that article a Mom posted about CHD's that most scroll on by. If it was your baby.... you would. Wouldn't you? I think that's why I have come to understand any battle, CHD or otherwise. Whatever the "diagnosis", I grasp that it is still someones baby and it just kills my Mommy heart. I recently read a Huffington post article that simply said " I get it, I am a Mom." And that is how I feel anytime I read of a child being diagnosed with annnnyyythingggg. I. GET IT.
It is my greatest hope that all of these children come to know how truly special they are. That they know their battles are not fought in vain. That we are all here to pull for them, pray for them and support them.
RED tomorrow for them!!!!!!
ps~ to those who simply shared my FB status yesterday, and there were several of you. thank you!!! that is how the word is spread. how the support is shown. how my boy is lifted up. xoxo