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!

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 14^th. 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. 

And his message on those flowers absolutely melted my heart. 

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. 

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. 

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!

Right Now.

Has it really been 8-months since I last wrote? Yikes. I realize I've neglected this little space I created during a time when I yearned for my thoughts to live somewhere other than inside my head. Please believe me when I say I still yearn to perch in front of my computer and spill my innermost thoughts and feelings with you all. Life has just gotten in the way more than I ever should have allowed it. And with that said, I now present you an update on the last 8-months of our lives.

For the sake of being 100% real, honest, and open, 2012 was a year filled with amazing highs and crazy lows. There were many beautiful moments, but many difficult ones too. 

Lukas turned one, which was terribly bittersweet for this overly sentimental mama. On that very special day, we celebrated a year of struggle and triumph. A year of bravery and strength. But mostly, we rejoiced that this very special little boy who completed our family was happy, healthy, and present. Jonathan and I decided on a small, intimate celebration with our family, as we simply wanted to take in what a miraculous journey our son had been on with those who had never left his side. Small as it was, the day was really a beautiful occasion and more than a few joyful tears were shed for what beauty and amazement is yet to come.

Lukas' birthday festivities served as our "high" following a harrowing low. Without going into great detail, the month of May was life altering for our family — and not just our little family of 5. My entire family was rocked and the aftermath left each of us needing to pick up the pieces and make alternate plans for how we would move forward. My grandfather wrapped up an incredible 36-year career, and because my husband worked for him, that meant he wrapped up career his career there too. Thankfully, everything on that end worked out as perfectly as it could have, given the circumstances. I have since started down a new career path at Butler University, where my family has a long, rich history. I could not be happier there doing what I am. Likewise, my grandfather has moved onto many great things that utilize his immense brilliance, talent, and experience. For this, I am very grateful.

Towards the end of 2012, we were hit with another situation that proved heart breaking, at best. My oldest son was diagnosed with ADHD. This isn't a fact I've made overly public, even to family, because its been tough. Jonathan and I, along with Riley's amazing care team, are currently working on a concrete plan for him. But that journey is far from over. We've been relentless in our quest for answers and the best possible care and plan for Riley's needs. In a strange twist of fate, we also learned Riley had an encephalocele containing brain tissue and cerebrospinal fluid. He underwent an MRI for a completely unrelated issue and much to our surprise, the encephalocele was found. We have seen a neurosurgeon regarding the issue, who felt no management was needed at this time. But because I'm relentless and feel more than one voice is never a bad thing, we are currently awaiting a second opinion on the appropriate course of management, if any, that needs to be taken.

From that low, we celebrated a fun "high." I graduated in December with a master's degree from Ball State University — my dad's alma mater. All the pomp and circumstance of the ceremony and the delicious celebratory dinner with my family brought me a great sense of satisfaction...and a huge sense of relief that I no longer had to turn in homework or spend hours on end cursing my perfectionist self as I wrote and re-wrote papers.

Through it all, I think the past 8-months have taught me a great deal more about living in the here and now and really savoring each present moment. Sometimes that means making last minute changes to what you thought was a pretty grand master plan. Sometimes it means just letting what will happen tomorrow, happen. And sometimes it means just learning to let go a bit more. Each day presents new challenges and moments that will either make you curse or smile. I'm slowly learning to be okay with that. Tomorrow is tomorrow and today is today and I'm learning to worry about what bridge to cross when I get to it. I'm a big believer that things generally work out as they are meant to. I'm not so sure I believe its because of grand design per say, but I think its because we've been bestowed with the wonderful gift of freewill, and that freewill allows us to shape our own destiny. Things will always pop up that are beyond our control, this is simply a fact of life. Difficult moments arise, but its up to you to determine what you make of that moment and how you move forward.

While I've had a few more of those moments than I care to admit in the past 8-months or so, I'm happy to say that I've stood tall through the tests and my resolve as never been stronger. I've found the silver lining in the down-and-out moments and have taken them as opportunities to grow. 

So my friends, I apologize for my absence and my neglect. I promise to be more present and continue sharing with you the very thoughts that brought this blog into existence. I promise to share more photos, and not just crappy iPhone ones — real ones where I've taken the time to perfect the exposure, focal length, and shutter speed. Ones that keep it real and share what our life is all about, good, bad, or indifferent. 

Until next time.

Fading to Black.

Yesterday I was having a chat with my husband about something we've discussed many times in the past (almost) 11 months - relationships we've lost along this journey. I touched a little on this topic in this post, but there was a lot more I wanted and felt like I needed to say about that topic.

June 2011 defined what it meant to be a "good" friend and a "good" family member to me. During this month, Jonathan and I went through the hardest thing we'd ever endured. We watched our son's health decline everyday. We watched him nearly pass away on 5 separate occasions. We watched him be wheeled into an OR knowing his heart was about to be stopped and his chest cracked open. That was real. It was deep and believe me when I say they were the defining moments of my life. We were scared and we were clinging to hope that our son would make it to and through the surgery that would ultimately save his life. A great deal of our family was there - my mom, dad, my in-laws, sister, brother, sister-in-law, grandparents, etc. But there were many who weren't. Many friends and family members never bothered to email or call. They made no attempt to see how Lukas was doing before, during, or after his operation. 

Honestly, it was heartbreaking. It was immensely disappointing and heart wrenching that family members and friends who promised to be there every step of the way just seemed to disappear. Jonathan and I would post things on Facebook, I would send group emails to friends and family members. Some would respond and some turned a cold shoulder. It was hurtful. Painful. 

I will say that some relationships diminished well before Lukas' birth. People who attempted to minimize the situation by saying things like "well, at least its fixable." As if it were okay for my son to be born with one the seven critical heart defects because hey, it was fixable. Right? Wrong. Believe me when I say I am unbelievably grateful Lukas' defect was able to be repaired, but its not so simple. His situation isn't so cut and dry. His defect means a lifetime of cardiac care. A lifetime of repeat open heart operations. It means he won't get to do some of the things that Riley and Hayden can. It means we almost lost him before his operation because his defect reached a critical point where it required emergency care or we would have been burying our son. That's real. That's not a small thing. Not to me. That comment always seemed so disrespectful and insensitive to me. Almost callous and uncaring.  And I can't count how many times I heard it before Lukas' birth and while he was in the NICU awaiting his operation.

And then there were the individuals who said they knew how I felt. Trust me, you don't. Unless you've walked in those shoes and have been down that road yourself, you have absolutely no idea. I had one "friend" who actually compared our situation to when they lost their dog at 10-years old. Everytime someone said "I know exactly how you feel" I can't tell you how angry I'd get. I'm a pretty level headed person. I don't get angry easily and I certainly don't lose my temper. But hearing those words would send me into a fit of rage. Most of the time, I tried to smile and walk away because I knew if I heard another word I was going to lose it. I had enough on my mind. I was stressed enough and I knew blowing up would just add to that stress. I didn't need it and neither did Lukas. It was just another one of those things that was very impervious and nonchalant. And hurtful. 

These things showed me the true value and meaning of relationships. They solidified relationships with my family and friends who were by my side every moment. Who were there. These individuals carried me through a time when I wanted to give up. When I thought it was too painful to continue, they helped ease that pain. They kept me strong so I could be strong for my baby. Their presence helped mend a heart that was truly breaking. They were there through the tears. They were there through the pain and the fear. They never walked away or became disinterested. And for that, they will never know the gratitude I feel in my heart.  There are not words fit enough to describe that love. These individuals, and they know who they are, showed me the true meaning of unconditional love.

And to the friends and family that weren't; well, its just part of the collateral damage that comes along with such a situation. Relationships come and go and ones that are meant to have a lasting impact on your life never fade. Those that aren't - do. Its just a fact of life, especially when situations like this arise. I blamed myself a lot at first. Wondering what I did wrong. Why didn't these people care? Why didn't they care about me and why didn't they care about my baby? Had I said or done something? That blame quickly dissipated. Those who wanted to put in the effort did. Those who didn't - well, didn't. Plain and simple.

Annamarie Saarinen, the founder of the organization 1in100 and a beautiful friend wrote an incredibly thought provoking article entitled "Collateral Damage" over this very topic. I encourage you to read it. It cuts straight to the heart of this matter.

And for those just starting on this journey - its a sad truth that relationships will diminish because of it. While it is sad, know that those who are there will make all the others a distant memory. With time, those scars fade. I promise.

Happy Monday friends. Hope your weekends were filled with beautiful things =)

First Haircuts.

We did it. This past weekend, we finally cut Lukas' hair and let me tell you, it just about killed me. I teared up as I watched the hair my warrior was born with hit the floor. He desperately needed it though. Having hair in your face and eyes is most annoying, so I'm sure he appreciates the change. Mama? Well, I'm still adjusting to how big he looks now. Sigh. I promise better pictures later, but here you go ladies and gents...my boy with his new "big boy" haircut. Sniffle sniffle.

This past weekend we also visited my great-uncle Tom who underwent open heart surgery Friday. He looked fantastic. His pressures were outstanding, his color was beautiful, and he was up eating, talking, and laughing. He has the most fabulous sense of humor and personality. So seeing him in such good spirits after such a big operation was just wonderful. He even made us laugh by telling us he tried to order bacon the morning after only to realize that kind of thing is frowned upon in a cardiac unit. We are so very thankful for how well he is doing!

I hope you all had a lovely weekend and your Monday's are going well thus far. Until next time....

P.S. - Britax is going to be 40% off on Zulily today! If you don't have an account you can sign up  for free by clicking here. Happy shopping!

Dandelions.

Yesterday was an odd kind of day. I had searched and searched for my car keys all morning before finally finding them about 15 minutes before Riley had to be at school. The kids were restless all day, as was I. After school we came home so the boys could get a snack and Lukas could get fed. As per his usual afternoon routine, Riley grabbed his pillow and blanket, a bag of Cheez Its and hung out on the couch. This is a pretty "normal" afternoon for us since Lukas and Hayden usually take their nap after everyone is home from school. 

When he's a teenager, he's going to hate me for this picture. But I couldn't help it. His facial expression was just too funny not to share. 

And don't ask me why he loves that pillow case as much as he does. If it makes my boy happy, then it makes mama happy too.

After everyone's bellies were full and happy, we decided it was a good day to go to the park. Fort Harrison has an awesome playground with this huge, tall slide. The boys begged and pleaded to go, so I decided what the heck. It was a bit chilly, so we got everyone in their appropriate attire and in the car.

Fort  Harrison State Park is really a picturesque place. Foliage, wildlife, and lots of fun things to do. There are hiking trails, wildflower fields, stables, etc. They have beautiful picnic areas too. Its really one of those rare gems in the middle of the city where we live. Its a little piece of undisturbed, undeveloped beauty and we are fortunate enough to live just minutes from its front gates. I enjoy going there. Its one of those places that just makes you feel good. Maybe its just being outdoors and away from the hustle and bustle. I don't know, but I like it.

Hayden of course loves dandelions when they are in their white, cottony state. No matter how much I explain to him that its a weed and not a flower, he still dives for the closest one he can find and waves it about as its little seeds disperse into the air. He probably sat there for close to 20 minutes just picking dandelion after dandelion. He laughed his little laugh as this sea of white cottony puffs was carried off by the wind.

Lukas just sat there in his stroller and drank it in. He'd laugh when he saw Hayden waving his arms around in the air like a crazy man and he'd watch in awe as the dandelion seeds circulated in the chilly afternoon air.

Riley doesn't care about dandelions or making their seeds dance in the breeze, so he darted for the playground without a moment of hesitation. 

That sweatshirt belonged to my nephew when they lived in Linton and its Riley's favorite. The letters are all tattered and worn, but he loves it. He wears it constantly. If its chilly enough outside to warrant a little extra warmth, its the first thing he reaches for.

And yes, the boy is tough on his jeans. Those are relatively new ones too. Sigh.
 

Lukas was content sitting on the park bench with me while he watched very intently as his brothers ran and played. I always wonder what they are thinking. I always wonder what's running through their mind as they watch something or someone or see something that catches their eye.

He stares so lovingly at his big brothers. Like he wants so badly to be big like them so he can join in their shenanigans.

In time little man, in time.

The playground has these two big speaker like receptacles on opposite sides where you are supposed to be able to "talk" to one another. Hayden of course thought that meant he needed to stick his entire head into it and scream as loudly as possible. 

I love this picture because its so quintessentially Hayden. His humor is just uncanny. It can put a smile on your face no matter what the day has thrown at you. The day started off a bit rough, but by the end of it I was smiling. It all just melted away when I saw my boys playing and laughing. Its the best medicine in the world.

Hope you all have a happy Friday and a beautiful weekend! No idea what we're doing, but we'll make the most of it.

Bed and Breakfast.

Lastnight, or should I say early this morning, I heard the sweet, soft cry of my little boy in his crib. He's a pretty sound sleeper, but his poor teeth are doing a number on him. We keep his Baltic amber teething necklace on during the day, but we take it off at night. Our bedtime routine consists of Tylenol and a nice, full bottle, which usually lulls him into a nice, peaceful sleep.

At 4am, Lukas had other plans. He got a full bottle of milk and sucked it dry within minutes. I walked back into his room when I heard him start crying. As I walked through his door, he was sitting up. The moment he saw me he outstretched those little arms as if to say "please pick me up, mama." And so I did. 

I rocked my boy for over an hour. I rocked him while he laid his sweet, crazy baby-haired head on my chest. I covered us up with the blanket I crocheted while he was still nestled within. Even though I was tired, I soaked it in. I know moments like those will become fewer and far between as time passes, so I will take it where I can get it.

This morning we woke up to tiny feet running across the floors and a giggling boy in his crib. I could hear Riley and Hayden in Lukas' room - playing with one of his toys. Lukas was just laughing and laughing. He loves Riley and Hayden. No one can make him smile and laugh like those two crazy boys can.

Breakfast is pretty much the first item on our agenda every morning. Lukas gets a bottle and whatever else we're making that I think he can easily consume. Riley and Hayden usually want one of two things - chocolate chip waffles or pancakes. No lie. Every morning its one or the other. Some mornings they also try their luck at getting a glass of sweet tea. We opt for milk instead. This morning though, they wanted white powdered donuts.

And since no one likes to be photographed while they are eating, especially with food on their face, I got a boat load of dirty looks.

Oh, and see that scar on Riley's forehead? The Harry Potter-ish one? That happened at the end of January. First thing (and I literally mean first thing) in the morning I hear a thud and I hear Riley start screaming. He ran into our room with his hand over his head and blood streaming between his fingers. I asked him to move his hand so I could see and I was horrified by what I saw. He had a hole. A gaping hole. And it was bleeding profusely. In a split second I was screaming at Jonathan who immediately jumped out of bed and got the boys buckled into the car. I held a towel over Riley's head the entire ride to the ER, which took about 10-minutes. Everyone was still in their pajamas and Riley didn't even have shoes on. To make a long story short, Riley ended up with 9 stitches. Later he told me he tripped over a spaceship in his room immediately after he got out of bed and he fell and hit his toy box. Needless to say his room is now picked up and his toys put in their proper "home" before his head hits his pillow each night.

Lukas loves those strawberry flavored puffs.  

He likes to eat them, but he enjoys playing with the container even more. He shakes it like a maraca and just smiles. Sometimes the lid comes off when he plays with it and puffs go flying with each subsequent shake. Evidence of this can be found in the puff covered carpet. Lukas thinks it hilarious and we all know laughter is good for the soul, so I laugh right along with him (and then vacuum up the mess later).

Told you, boy needs a haircut. Bad.

Oh, and Lukas loves his paci. Neither of the boys ever really cared about them. They took a pacifier for maybe a month and then quickly moved on. It wasn't comforting or soothing to them at all. Not Lukas though.

When he gets angry he does these really big, deep, angry sucks. If he wakes up you can generally calm him quickly by just simply handing him his pacifier. Don't try to put it in his mouth though - he likes to do that himself.

You see that? I actually got Hayden to semi-smile. Its more like a smirk, but I normally can't get him to stay still long enough to take a photo to save my life. He's got those deep brown eyes like his Daddy. And that smile, on the rare occasion I can actually capture it, just makes my big mama heart do a little jig. 

With that, I wish you all a Happy Hump Day. Hope your week has been bright and happy.