Watch What You Say...

I've heard a laundry list of questions about Luka's heart defect. For the most part, people are genuinely curious about his surgeries, what Hypoplastic Left Heart Syndrome means, what this means for Luka's future. There are questions though, that hurt. The one "What were you doing that caused his heart condition?", implying that perhaps I did something wrong to cause this. Some days, I respond with " It just happens" and in one instance, I said "Oh...You know, heroin."

Luka was planned. My final child. The one I was going to give birth to at home. I was on Zoloft as was Shawn. And just after I got my positive pregnancy test, I got a stomach bug that had me puking so hard that I was bleeding and I lost 5 pounds. Extremely dehydrated, I went to the ER and was given Zofran and IV fluids. I was told by doctors that these medicines were safe. And against my better judgment, I continued to take the Zofran because being able to keep food and liquid in my body trumped the idea of barfing my brains out. Puking freaks me out. And I refused to do it. I did quit the Zoloft though because I just didn't feel I needed it. I wasn't depressed. I was excited. I was growing another life.

If you are curious as to how Luka's heart condition happened, instead of asking "What were you doing to cause that?", ask it a different way. For instance, " Do doctors know why Luka has HLHS?", "Is there anything that causes this heart condition?"...Or not asking or assuming works too. Watch what you say and if you can't say anything nice, just keep it to yourself. I know people are curious but have some compassion. The world is severely lacking in decency.

Luka is growing. He is big and strong. And just so stinkin' adorable! He goes in for a heart cath next week to gear him up for his Fontan next month. The Fontan is the final stage of the 3 surgery repair for Luka's HLHS. My nerves are shot. I just don't want to hand my baby off for yet another surgery. I feel like I am betraying his tiny trust. I just hope he knows I love him so much. This isn't to hurt him. It's to give him the best chance at life.

Luka, Mommy loves you so much. I hope you know that. <3

Lucky Little Luka

Your mama is such a slacker. Here's an update. You walk. You babble. You wave night night and bye bye. You are just as sweet as can be. You hug. You give kisses. You eat EVERYTHING!!! Luka, I am so proud of you. I love you so much. 

You have been through hell and you are still kicking HLHS ASS!! You amaze me. You also make me giggle. You keep up with your older brothers. In fact just this morning, you walked up to Zephyr who was quietly watching Super Why, and just yanked on his hair and walked away. Two minutes later, you were hugging him.

Zephyr has your back too. You'll buzz right to the door to the kitchen if it's open and Z will chase you and tell you not to go in there. If you get hurt, Z is right there to help kiss the boo boos too. You cuddle with Ashton and take a nap. Life is normal. 

And then reality hits. In the last few weeks, two HLHS kiddos gained their wings. They weren't sick. They were doing normal kid things. Those boys were playing one day, gone the next. Seriously. What the hell? I tend to forget you only have half of a heart sometimes because of how well you keep up with everyone else. And then things like this happens and I wonder "Will I wake up to another day with my sweet boy?" The answer to that question is...I just don't know. Your tiny heart could give out at any minute. That is my reality. That is the world I now live in. 

What pisses me off more than anything is that family hasn't really paid you much attention. Sure, my Aunts and Uncles know you. But my cousins...They don't bother. I had envisioned that family would be close. That we would all form a bond for such a special boy. Turns out, they don't care. Even at my Mom's funeral, they acted like we didn't exist. There are a few that care. And I appreciate that. But really, I feel like the whole world should know you...ESPECIALLY your own blood relatives. 

You are loved though...Mande said "Anyone who doesn't want to get to know Luka,that's their loss... More time for me :) But seriously,any thing happens to him,I will be crushed right with you. No not in the same way but none the less crushed. That's my little buddy! <3" And Krysten "People don't care to look outside their little worlds, to see reality. I'm sorry that some chose ignorance but many others chose to embrace Luka, and to know and love him. I chose to be overly optimistic because that little man came into the world kicking bums and he's not anywhere near done. The truth is I can't fathom to think about the alternative. I just can't. He's too precious and he deserves a whole life full of victories." And Gretchen "If someone doesn't want to be involved in Luka's life, then honestly it's their loss. Luka is a wonderful little boy and anyone who can't see that is blind. The ones who truly matter will always be there <3". You. Are. Loved. Loved by my closest friends, your brothers, your mama and daddy, Daddy's cousin Jana and her guy Don, your Lala, your MeeMaw who is an Angel in Heaven, and people who haven't even met you in person. As much as I want the whole world to know you, I realize everyone in our world does. Everyone who is important does. And we don't need more than that. I can't force people to care. We are likely better off without them. 

Ohhhhhh sweet boy. I really love you. I am so beyond blessed with you and your brothers. The moments we thought we would never experience are happening right now. So I'm gonna post this, cuddle with you as you snore super loud, and blog again in six months or so. Lol!

We love you!!!

Mommy