Monday, February 18, 2013

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!
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Thursday, February 14, 2013

Day of Hearts.

Happy Valentine’s Day, friends! I know I’ve been slacking a little bit in my writing duties. While I don’t want to make excuses, it’s been a busy, hectic couple of weeks at work—although I love busy and hectic. Nonetheless, the busy and hectic nature of my schedule has meant a lag in my updates, photograph taking/editing, etc. With that said, please forgive my use of Instagram as the method by which I've supplied today's photos.

Here we are—Valentine’s Day. Seems like a fitting day to write considering this slice of the blogosphere started because of a sweet, special heart. Am I right?

My feelings toward this day have evolved a bit over the years. As a kid, I always felt Valentine’s Day was silly. It was too “gushy” for me. Then I loved it because of my grandfather. Each year without fail, he got every single one of his children and grandchildren a box of chocolate. I always looked forward to this gesture every February 14th. I couldn’t wait to see his sweet smile and hear the sound of his voice as he said “this is for you, sugar doll.” The first year without that little box of chocolate was tough. It drudged up so many feelings on just how much I missed him. Valentine's Day somehow didn’t feel the same without my Pap. From that point forward, I was just content pretending Valentine’s Day didn’t exist because it made me despondent.

Once I had children of my own, my feelings towards this day changed again. I started giving our boys that little box of chocolate—along with the greeting “this is for you, sugar doll.” I came to the realization that, although my boys never got to meet my Pap, a little piece of his heart gets to continue living on in the way I parent my children. I get to carry on that beloved tradition with them and that feeling of happiness and excitement about Valentine’s Day returns each year. My love for this holiday grew even stronger when I learned that V-Day was the conclusion of CHD Awareness Week—and fittingly so.

So on this day of love, I got beautiful flowers from my husband that gave my office an extra special hint of brightness and beauty. 

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And his message on those flowers absolutely melted my heart. 

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I went to Riley’s school to celebrate with him. His class had this darling little Valentine’s party and it’s been the topic of virtually every conversation since Tuesday (Riley was out on Monday with strep throat). He was very adamant lastnight that he had to wear red today for said party. Lastnight, amid kindergarten homework, Riley and I worked on his Valentine’s for his classmates. My creative juices were not flowing and my Monster energy drink had totally worn off. So we stuck with FunDip (mama’s favorite) favors. Problem was the hearts where each name was to be written were so tiny there was positively no way Riley’s oversized 5-year old handwriting was going to fit in them. Plus, they were really hard to write on—even for an adult. So I took over Valentine-writing duties while Riley completed his homework. Don't you worry, he kept a watchful eye on his friend’s favors the entire time.

The party was darling and I really enjoyed getting to set a little time aside to watch him take in all the classroom festivities. He ate it up, let me tell you.

Hayden, poor dear, is sick. So he missed his Valentine’s party yesterday. He didn’t seem terribly torn up about it, but he doesn’t really care about much of anything except making sure his “black doggy” is close at hand. His connection to that thing is uncanny. It’s the only stuffed animal we have ever owned that he has ever been remotely attached to. He won’t go to bed without it—and sometimes he won’t even get in the car without it. I’ve caught him nestled warmly under his blankets at night when he’s fast asleep cuddling that doggy under one arm close to his heart. It’s precious.

That's him at my sweet nephew's 1st birthday party. The Mario hat was a big hit. 

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And Lukas—well, boy’s always happy. I swear nothing fazes him. Nothing stops him from smiling—unless of course you try to take his food away from him. While still a tiny little guy, he’s growing by leaps and bounds. Every day he hears the chime of our alarm when I open the door leading in from the garage and he runs to the laundry room anxiously awaiting me to open that door. And every time I walk through it, he has his arms outstretched, opening and closing his little fists, just waiting for me to pick him up. It’s become my favorite part of our evening routine. 

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I hope all of you, my friends, have a lovely Valentine’s Day with your loved ones. Happy heart day! Better photos/updates next time—promise!
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