Monday, April 30, 2012

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 =)
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Monday, April 23, 2012

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 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!

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Friday, April 13, 2012


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.
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Wednesday, April 11, 2012

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.
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Tuesday, April 10, 2012


Neglectful. That's perhaps how I would categorize my involvement on this blog in the past several months. For that, I truly apologize. I promised to share our families story; our ups and downs. Our life today as we know it. And in that point, I've somewhat failed. And I am sorry. I promise to be better. I promise to post more and share more.

I guess I figured once Lukas got better the story wouldn't be as important anymore. I realize that's a completely ignorant statement. What I forgot is that his past is only part of his story and only part of his beautiful journey. What I realized is that its time to stop dwelling on the past and looking forward to the future. In the past year, I've been serious and emotional. I've talked a lot about Lukas' heart condition, how it affected me, how it affected our family, and how we've moved on from what I would honestly describe as the worst year of our lives. Now its time to live. Its time to live in the moment, watch these boys grow, and make the most of each and every memory good, bad, or indifferent. Like a flower in the warm embrace of the sun, its time to bloom.


So rather than dwelling on the past, its time to focus on the here and now. Its time to share with you what our lives are all about. I received an email the other day from a sweet woman whose unborn child was diagnosed with truncus. She actually said she found my blog encouraging and that although she was scared, our blog gave her hope. Hope that everything really would be okay. That's when I realized I needed to share more of what life is like now. Our everyday happenings. Maybe it will help someone just starting on this path to realize how beautiful the outcome can be.

In the past 10-months (hold on, can you believe Lukas is really 10-months old, ugh) Lukas has grown and changed so much. He smiles the widest smile I've ever seen and showcases those three chompers of his oh-so-proudly. He smiles and laughs constantly. He was sick a week ago. So sick in fact he ended up admitted to the hospital for dehydration, and that's one of the ways we knew something was up. He wasn't smiling and he wasn't laughing. Thankfully he's all better now and he's back to that little ray of sunshine we've all come to know. 

Poor baby desperately needs a haircut too. What is it about the emotions stemming from that first haircut? Why is it always so hard? Someone once told me that hair is the hair they were born with. And I've formed an overly sentimental attachment to that wild and crazy mane. Our little big Riley had a head full of long, curly hair just like Lukas. And we finally got it cut right before his first birthday because Jonathan got tired of people calling him a girl. We're getting there with Lukas too. At the hospital one of the nurses (not his normal nurse) walked in and said "oh, she has such beautiful hair!" I chuckled a little before responding "well, he's actually a boy that is just in need of a haircut." She felt so bad and I just laughed it off. It is constantly in his face and tickling his little ears, but it just kills me to cut it. Perhaps its because they always look so grown up and mature when you cut their hair. I'm totally not ready for that. Afterall, I am still in denial that he's only going to be a "baby" for two more months. Well, even less than that now. I'd be totally content if we could just freeze time and he could stay a baby forever. Impossible, I know. For now, I'll just soak up his last (less than) two months of babyhood.

Riley and Hayden are in their home stretch at school. They have about a month or so left before summer break officially begins. Riley's been asking about soccer and saying he wants to play again. Hayden has taken an interest too. In fact, they were kicking a soccer ball around the living room the other day. No, they're not allowed to do that, but I was so enamored by how improved their ball handling skills were that I just sat there and watched without saying a word.  They were really good! Soccer was a somewhat new concept to Riley last year and it really didn't appear he was overly interested. He would get distracted by a parent or another little kid who had food. He wanted to stop every 15 seconds and take a sip of Gatorade or water. I was under the impression that maybe soccer wasn't the sport for him, but now he asks about it almost daily. So we are going to sign him up again. Hayden is still too young to sign up with the teams like Riley, so I think we might try to get him in this Little Kickers program at an indoor recreation building where they have all kinds of indoor sports tournaments. We took them to Fort Harrison last week, where you can horseback ride and the boys loved it. They were too young to actually ride the horses (you had to be six), but they petted them and watched them and they loved every second of it.



And now that the weather has taken a somewhat premature and unexpected turn for the better, we've been spending lots of time outdoors. Our winter was unseasonably warm and we had virtually no snow. There were numerous days in March were it was 70-80 degrees. We don't live in the tropics, we live in Indiana. We had record breaking warm weather. Not that I'm complaining, of course. Its been nice to get the boys out of the house and spend some time in the sunshine. My ghostly pale skin appreciates it too. Jonathan and I did some yardwork the other week and I actually used a weed-eater for the first time ever. My hands shook for a good hour or two afterwards, but it was kind of a fun experience. I stopped many times just to let the rays of sunshine hit my face. There was something about the smell of freshly cut grass and the sound of lawnmowers all down our street that made me feel good.

Our last summer wasn't overly fun. We didn't get to do much because I think we were nervous to leave our house for more than five minutes at a time. Our poor boys were going crazy. I'm looking forward to new adventures this summer. New opportunities for our boys to experience things. And for Lukas to experience things. 


We've made plans, but for the most part we just want to live in the now. I don't want to worry what the future may look like for our little boy. For now, I just want to enjoy each moment as it comes. Drink in each and every second because its a piece of our story. I've made a new goal this year. Each day, I want to photograph some aspect of the boy's lives. Even if its just a snapshot. I want to look back on those photos some day and remember exactly where we were, what we were doing, what we felt, and the smile that came across my face when I captured that moment. That's my goal this year. Live in the now. Enjoy every moment as it comes and don't dwell in what used to be or what will be. Its time to really start sucking the marrow out of all that life has to offer.

So with that, I bid you adieu until next time.

p.s. - I thought it would be fun to have a little "Q&A" so you can get to know me and our family better. If you read this and you think of a question you'd like to know the answer to (any question at all) shoot me an email ( or hop over to Twitter and ask there (@prayersforlukas).
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