The Weight.

Our family had a beautiful weekend. While it was bitterly cold outside, the sunshine almost made up for it. Saturday we decided to have a lazy day. We huddled indoors, opting to turn on the fireplace and watch movies instead of enduring the deceptive chill of the great outdoors. Sunday we went out to lunch with my family, as my wonderful grandparents were in town from Washington, DC. Beforehand, we got a little surprise. While getting Hayden out of the shower, I went to dry his hair off and noticed his ear was covered in gunk. I grabbed a Q-Tip and just rubbed it gently around his ear to remove some of it. Then his stream of—get ready for TMI—pus came streaming out of his ear. My heart dropped and I knew Hayden’s ear was infected and I was sure his ear drum had ruptured. He never complains when he’s sick—ever. When he was in the hospital with a resistant bacterial infection in his bloodstream 3-years ago, he never complained once. He could be sick as a dog and he'd never act any different than his normal self. He never complained about his ear bothering him, so my heart just broke because I know how bothersome ear infections can be. Of course our pediatrician’s office was closed and all the Med-Checks in the vicinity had a 1-2+ hour wait. So, we took him to the ER. He’s got some antibiotic ear drops (the strongest kind they make), and he’s on his way to being healthy again. Poor boy. We made it to lunch afterwards and Hayden came home and rested while my grandmother and I went out shopping for the boys. It ended up being a lovely day—all things considered. It's always nice spending time with my family and having the opportunity to catch up and share some laughter.

I have to admit—I’ve had a few things on my mind over this weekend. Last week, a heart mama posted in one of the heart groups I belong to about how her little babe doesn’t know about their heart defect, how they don't want them to feel "different," and that sometimes it is easier to "ignore" the fact your little one has a CHD. Those words resonated deeply within me. You see, I could have written that post word for word myself. While I know Lukas is still far too young to be aware of his heart defect, I’ve thought many times what that conversation between us will entail. How will I explain to him what this means? How will I explain to him that his brothers don’t have to suffer through this, but he does? How will I explain open heart surgeries? A lifetime of cardiac care? Restrictions? I’ve thought about each and every one of these things. Truthfully, I never want Lukas to feel different. I always want him to be treated as an equal. I want him to have the same opportunities as his brothers and peers. I want him to make his own unique mark on the world and never let his heart condition define who he is or what he’s worth. He’s more than a heart defect. He’s more than a scar. He’s more than open heart surgeries and cardiac check-ups. He’s more than that—so much more.

And as a parent to a child with a congenital heart defect, it’s tough. I’ve never sugarcoated my feelings on what that’s like. No parent wants to watch their child struggle or endure hard times. We’ve embraced the promise and perils that come with this journey. That doesn’t mean I wouldn’t trade places with him given the opportunity, but sadly we don’t get “do-overs” in life. There are days—however—that I actively try not to think about my little boy having a CHD. There are days it is so blindly painful it takes my breath away. I would never wish these things for my son. I would never wish fearing what tomorrow might bring. I would never wish the anxiety and uncertainty that comes when you don’t know how long it will be before your child has to go under the knife again. There are days I have to put it out of my mind because it’s unbelievably hard to cope with. It’s hard for me to even put that into words—but I know my comrades in the heart community understand. While I wish with all of my heart my baby didn’t have to go through these things—Lukas’ smile reminds me that it’s all okay in the end. I know he will do big things someday. I know he will make an indelible mark on this world despite all that he’s been through. Mostly though, I know our world is better and richer because Lukas is in it. 

Happy Monday, friends. I hope you all had a beautiful weekend!