Thursday, June 12, 2014

The Art of Contentment.

As a long time follower of the Art of Simple, I read there often. This morning, I ventured into the section on work + productivity just for the heck of it. I had a good 15–minutes to myself having roused earlier than anticipated, so I decided to ingest some casual readings on relevant life topics.

An article (one that I’ve read before) caught my attention because it pretty well summed up several sentiments I have been feeling as of late. I started reading and fell into the rabbit hole—I just couldn't stop.

The article was titled “When Working Hard Gets Ridiculous.” If you’ve never read it, I highly encourage you to do so. The message embedded in those words resonated with me deeply. I have honestly reached a point in my adult life where I have found happiness and contentment just being me. I came to a point where I simply stopped feeling as though I wanted or needed to “keep up with the Joneses,” and I learned that “things” aren't what truly make us happy. But that wasn't always the case. There was a rather superficial time in my life where I felt my worth was measured by the things I had. I would proudly show off these things (most of which I hadn’t actually worked for), as if their mere existence earned me bonus points in the game of life. I took pride in the envy I could invoke in others, and I walked around flaunting this amazing life and this person who wasn't really me. This attitude of materialism—the act of accumulating things for the sake of impressing others—lasted for but a season. And I say season purposefully because times change, as do people. We all go through seasons in life. This just so happens to be one of the many seasons of my life I look back on with fractious antipathy. 

I’ve been through a few things in life that have taught me some deep, lasting lessons on humility. I’ve fallen flat on my face and had to shamefully rise again to start from scratch. I've hit rock bottom. I’ve spent more money than I’ve had, and I’ve had failed attempts at living a life pretending to be someone and something I’m simply not. Along the way though, I’ve learned what’s important. I’ve learned about living life with purpose, intention, and simple satisfaction. I’ve learned a little about finding my element and settling jubilantly and willingly into it. I won't sit and claim that I've learned all of life's lessons, and I won't claim my knowledge to be superior to that of anyone else. I'm still learning and still making mistakes every day. 

Now, I also say all of this with the understanding that there is absolutely nothing wrong with wanting nice things for yourself and your family. But working hard to chase those dreams is a far cry from the materialism that often consumes and defines what it means to be “happy” and “successful” by mainstream society—the one that tells us we have to have stuff just for the sake of having stuff (and I don’t look down on anyone who wants more and is willing to put in the work for it. Go get it, friend. That’s not the method to my madness here).

It really wasn’t until Lukas' diagnosis that I found myself at a cross roads. I had stated this mantra as my modus operandi, but I wasn’t often living it. I wasn’t picking up what I was putting down, so to speak. When Lukas was diagnosed with his heart defect and my world turned upside down for a short time, I learned to live more simply—more presently. In the months following his prenatal diagnosis whilst in the middle of fetal echos, twice weekly appointments, NSTs, and tough conversations with the numerous physicians orchestrating mine and Lukas' care, I found myself partaking in—and enjoying—some of life's simpler pleasures. Taking a walk around the block in my neighborhood where I had the opportunity to quietly reflect on the day and the many that lie ahead. Crocheting blankets that would someday soon cover my newborn boy—the ones Riley and Hayden would sneak peeks at in the drawers of my desk. Waiting impatiently for school to release so I could take Riley and Hayden to the park and listen attentively to their nonsensical conversations and deep laughter. Taking a bath in the evenings and rewarming the water until my skin pruned deeply just so I could finish reading that one last chapter. Sitting down at my computer late at night and just writing whatever thoughts spilled from my fingertips. Those moments were my element. Those moments made me happy amongst the cloak of chaos. I felt content in these somewhat simple dealings, but I also felt peace I had never previously appreciated or fully understood. The kind of peace we wish for when we feel like we just can't keep our heads above water. I reveled in the simplicity and approached it as my beautifully serene respite. 

Those moments taught me about really living.

I found myself in a place where the amount of money in my bank account became an increasingly trivial pursuit. That may sound silly, but as long as I had enough in there to pay the bills, keep a roof over my family’s heads, clothes on our backs, and food on our table—I was good. I stopped caring so much about that shiny new car in the parking lot of the dealership I longed for because there was absolutely nothing wrong with the car I was driving. I said my thanks to the lovely home I was sitting in and stopped looking at houses that were far beyond our price range simply because they were big and pretty. I've said previously that Lukas changed me. And he did—in many ways. But it was him who really helped me to understand that I no longer wanted to be that person who felt they needed to have material possessions to show off—the person who always compares her life to someone else's and wishes she had something different or something more. It's not who I am or who I ever want to be again.

My parents always used to tell me that you couldn’t take it with you when you go. And they are right. You can have everything in the world, but when it’s all said and done (life, that is) what does it all mean? You can't take the gigantic house and that fancy car with you to the grave. And all that money of yours is just going to be a source of argument and contention for those you leave behind because everyone wants a piece of the pie. It's funny hearing my mom say those things now because she wasn’t such a simple person until much later in my life. And I say that in the most loving way possible. Like me, it took her longer to see it. But my dad? He's a simpleton at heart. It's one of the things I respect and admire most about him. He doesn’t live in Taj Mahal and he drives a 20-year old truck with less than perfect blue paint and rust spots. His wardrobe consists of mainly hand-me-down t-shirts and shorts (or jeans). On any given day he'd much rather be out in the woods or working in the groves down on the farm. And you know what? He doesn’t care. He doesn’t define his worth or his happiness on the perception others have of him. The thought never crosses his mind. He does his own thing and he lives his life. And my mom? Well, she’s come to the same conclusion. "Who cares?" Life is not and should not be measured by the success and accumulation of “stuff” that society deems appropriate. “If you don’t have all this stuff to show off and you can’t brag about all the things and money you have, how on Earth could you ever be happy?” It’s flawed logic and a failing mentality. You shouldn’t be ashamed of what you have or who you are. Sadly, society and many of its members at large make us feel that way if we don’t have all of these material possessions to show for it. 

So, today I am publishing my credo—my manifesto, if you will. The things I believe in and the things I promise to live each day—with purpose and intention.

1. I'm not super mom nor will I ever pretend and/or claim to be. The notion of the "supermom" is a fallacy—a farce meant to make other moms feel inferior about their strengths and abilities. No offense, but there is not a single human on this planet that is capable of doing it all, being it all, and knowing it all. You know what I am, though? I'm just a mom. I'm a mom who loves her children more than life itself and who does her very best every single day. And that's more than enough. My house is rarely spotless and on any given day you are welcome to witness the overflowing laundry baskets that I'm too lazy to sort through or piles of clothes that I’ve sorted that haven't quite made it to the washer (and may not for a few more days). I have forgotten to check the boy's homework or gasp—not helped them with it at all because maybe they wanted me to read them a book or wanted to snuggle and in that moment, their needs were more important than their homework. The kids eat McDonald's when I'm too tired to cook dinner. It doesn’t make me a bad mom. It makes me human. But everyday my three boys are loved and they never have to question that undying love for a single moment. I'm not supermom, and I'm more than okay with that.

2. I don't live in a mega or mini mansion or even a large house. In fact, our family lives in a very modest ranch-style home. I'm not embarrassed by it or ashamed of it in the least. Most of our memories have happened in this house. We brought our youngest home to this house, and watched our children grow up here. No, I don't have a gourmet kitchen and no I don't have luxurious hardwood floors throughout. But, who cares? It's not just a house. It's our home. It's our shelter from the storm, and our safe haven. Every night I get to pull in the driveway, park in the garage, kick off my shoes, and rest. That's more than some people can say, and every single day I vow not to take that for granted. It’s no Kennedy compound or sprawling estate, but it’s our own perfect little slice of suburbia.

3. I don't drive a brand spanking new, fancy, expensive car. I drive an SUV that is a couple years old. I've put some miles on its tires and its once pristine white paint is peppered with the evidence of door dings and scrapes from rambunctious children whose bikes have gently (or maybe not so gently) kissed its sides. There are crayon marks on the leather seats, and more than a few melted Skittles nestled in its crevices. But I love that car. It transports my family safely from point A to point B, and I wouldn't trade it for any other car on the planet. I love it because it's mine. I love how perfectly imperfect it is and how I know no one else on this Earth possesses one with its unique brand of personalization.

4. My bank account will never resemble that of Oprah's, and you know what? I'm cool with that. I don't need exorbitant amounts of money to make me happy or make feel like I have a place in this world. I have all the money I need. I work hard everyday to earn that money, and I am proud of what I've built with it. I don't need to pretend I live a life that I don't. I'm proud of where we are and what we've done. There is no designer handbag or pair of shoes, no amount of makeup and lip-gloss, and no amount of “stuff” that can drown out true dissatisfaction. Until you are happy with yourself and the life you live, no amount of money or material possessions will improve upon that. Change comes from within, not from "stuff."

So, do me a solid. Stop comparing and contrasting your life to those of others, and start living for you. Find what makes your heart beat a little faster and what makes your cares melt away. There, you will find happiness. There, you will find purpose. There, you will find unadulterated contentment.
Share |

Wednesday, June 4, 2014

Finding My Voice Again.

First things first. You might have noticed that our domain name has changed. Unfortunately, our customized URL was stolen and I've been desperately trying to correct the issue. In the meantime, I will utilize the assigned blogspot URL. My apologies.

Now, onto the point of this post.

I've loved writing for as long as I can remember. In many ways, it feels like the truest form of expression—at least for me. Writing is a way of expressing thoughts and feelings that come from the depths of my soul. Things that perhaps I couldn't adequately communicate in any other fashion.

Writing has helped me deal with some of life's hard hitting moments, and helped me delight in the beauty of the good ones. At the age of 18, I lost my grandfather rather suddenly and unexpectedly just after the start of my senior year of high school. Shortly thereafter I started my first "real" journal—one that wasn't covered in the names of boys I was crushing on that particular week. Each page of that little black leather journal holds raw emotion—heartfelt sorrows, blissful memories, unending numbness, and eventually—acceptance. Page after page, I poured out my heart. When I couldn't express my feelings to the world around me, I wrote them down. With each entry I found compelling evidence that I was healing from losing such a wonderful man without much advanced warning. Years later I re-read those initial pages. There was such pain behind the words. Pain so thick you could feel it rising in your throat as you read aloud. During that time I felt lost and was experiencing what felt like sadness beyond measure. How in the world could I ever cope with never hearing my beloved Pap call me his "Sugar Doll" again? How was I ever to cope with knowing my grandfather would never see me graduate high school? Go to college? Get married and have children? Why him? Why now? There were so many things that were left unsaid. So many experiences we would never share. Those were frequent themes when I first started writing that journal. As my handwriting changed from rigid to relaxed, a shift occurred. On those pages and with each word I was healing. Writing helped me grieve the loss of my grandfather in a truly exceptional way. It helped me to feel. It helped me to understand. And it helped me to accept

I have maintained numerous journals since that first, eventually making the shift to the world wide web when blogging became a "thing." I can type a whole lot faster than I can write, so such a transition just seemed to make logical sense. I started numerous blogs that never really had much depth or substance so they were abandoned with the passage of time.   

Then in January 2011, I found out about Lukas' heart defect. And for the first time, words failed me. I've never been a captivating speaker nor will I ever claim to be, but I simply couldn't answer the tough questions that were asked of me. The ability to form an intelligible response was replaced with this awkward, debilitating silence. I didn't quite know what to say or even what I should share. So one night I simply chose to write. Maybe then I could finally answer some of the lingering questions without having to repeat it to every soul I encountered. Everyone could get the same information and access it as many times as they wanted and/or needed it. Writing gave me an outlet and allowed me to express thoughts I couldn't bear to share face–to–face with even my closest family and friends.

Many nights I sat in front of my computer long after the last of my family had fallen asleep and silence fell on our house. For hours I would just sit in the dark at this old, wooden desk that was once nestled in the corner of my brother's room in our childhood home waiting to see what thoughts would spill from my fingertips. With the rhythmic click click clinking of the keys I found peace and tranquility wash over me. I would rub my round, pregnant belly and awaken the little boy within. With each kick and movement he let me know he was right there with me. In those moments the sadness didn't cut quite so deeply. I didn't feel so acutely aware of the unwieldy emotions for moments that lie ahead that so often overwhelmed me during the daylight hours. I felt safe sitting at that old, wooden desk late at night as I heard the tree branches wrestle outside the window. It was in that quiet solitude that I found my voice once again.

There were verbose entries that I never published because they felt too tragic and despondent—even I had a hard time reading them. I never wanted to give the air of melancholy or pretend as though I was the first person on Earth to ever experience such a situation. I was always appreciative and understanding that life sometimes hands us things that feel overwhelming. Row after row of text—even those that went unpublished—I wrote to remember. Just like those handwritten pages of the black leather journal that held my most intimate memories following the loss of my grandfather. I wanted to remember every raw detail because it was a part of my boy's story. I knew one day I would look back on those words with a fond remembrance of that little wrinkle in the fabric of our journey—his journey.

I write often, because of its immense therapeutic value. There is something about recording a moment in history—even little moments that might otherwise be forgotten in the vast expanse of yesterday and tomorrow—that is both compelling and curative. There are many memories I wish I would have put into writing. Now I write everything. There are hundreds of unpublished entires here simply because there have been memories and moments I never want to forget. While I believe a photo speaks a thousand words, sometimes that alone doesn't do the moment justice. Sometimes it's the beautiful prose telling the story that makes you savor every intricacy of what was and what is yet to be.

And so, I hope to write more on this space. I take that back—I hope to publish more on this space because everyday is a defining moment—a delicate piece of the woven tapestry of who we are and who we are meant to be. And every moment deserves a voice. If you've never thought about writing, I can't recommend it enough. You don't have to be a Pulitzer Prize winner or a New York Times bestseller to feel as though your voice matters. Everyone's does. I promise you nothing can compare to re-reading those memories written in your tone of voice and frame of mind at the exact moment they were written. It's beautiful. I can't think of a better word to describe it.
Share |

Wednesday, August 21, 2013


I realize I never updated after Lukas' heart cath. My apologies!

The cath itself went far better than we had expected. Lukas did not require the balloon angioplasty. Dr. Hoyer actually said that aside from the stenosis Lukas' conduit is in great shape. While no interventions were necessary, we did learn a few things during the procedure.

1. The veins they would typically use in a leg approach were occluded on both sides, most likely from the trauma of multiple sticks and lines during his time in the NICU and PICU before, during, and after his operation. This forced Dr. Hoyer to use a neck approach, which they will continue to do in future caths.

2. We also found out that Lukas has fairly good sized pulmonary artery branches. Dr. Hoyer mentioned that many times in truncus patients these PA branches can actually be quite small, so when the conduit is placed it is often far larger than the PA branches. During the cath, we found out that Lukas actually has the opposite problem—his conduit is actually too small for his PA branches, which measure 11mm and 16mm. This is good news in that a large conduit will be utilized during his replacement (hopefully not for another year or so).

3. Lukas was quite anemic. Dr. Hoyer explained to us that small blood samples are taken during four different measurements of the heart. In each of these samples Lukas' hemoglobin was only ranging between 6.7 and 6.9. These numbers should be over 10, and closer to 11. So, Lukas is now on a pretty high dose of iron supplementation and we have already seen significant improvements in his coloring, appetite, etc.

Sadly, Lukas did have a bit of a hard time coming out of the anesthesia. He thrashed about for a good 45–minutes before he settled down and fell asleep. Being such a sap, I cried and cried as I whispered in Lukas' ear—telling him it was okay, and that his mama was here now. I rocked him and cradled him close to my heart as he fell fast asleep in my arms. I can't tell you how blessed I felt in those moments with him.

I am just so thankful and happy that our sweet boy is safe and had such a good report. I was also immensely thankful to have such a great support group at the hospital with us. My brother, sister-in-law, nephew, sister, mom, and stepdad were all there helping to keep our mind off of the procedure. Interestingly enough, we sat in the very same waiting room where we waited as a family 2–years earlier during Lukas' first open heart operation. It brought back some very profound memories of my thoughts and feelings as I paced around on that same carpet, nervously waiting for the OR nurse to bring us updates.

We even got an opportunity to see and talk to Dr. Turrentine—Lukas' cardiothoracic surgeon. He couldn't believe how good Lukas looked and how much he had grown. He couldn't wait to read the report from Dr. Hoyer. Before we left, I just had to tell him thank you. I also told him that he did a damn fine job on Lukas. I'm so very thankful for that man. He will never know the depth of gratitude I hold in my heart for all that he did in saving our little boy. He's here with us today because of his love, compassion, time, and talents. Thanks, Dr. T.

I'm hopeful that we can hold off on another open heart operation for a year or so. During our last visit with Dr. Farrell, we were looking at possibly replacing his conduit this coming spring. I am hoping with such a good report from the cath that we are able to put this off a bit longer.

As always, thank you for continuing to think of our sweet little boy and our family. We are very fortunate to have such a strong, healthy little boy. I am always cognizant that things could be very different, and I am so beyond thankful for all that he has brought into my life.
Share |

Monday, July 29, 2013

A Plea for Prayers.


Please forgive me for my absence. On Friday, my beloved cousin, Sean, was hit on his motorcycle on his way to work. He was LifeLined in critical condition with numerous devastating injuries, including a spinal cord injury affecting his C3-C7 vertebrae. He also has a broken nose, orbital bone, and ankle. He has a very long road to recovery ahead of him, and I would appreciate all of your thoughts and prayers.

Our family has begun a fundraiser to help him. While you may not know Sean, even a little would mean the world to me and their family. You can donate to Sean's medical fund here.

Also, please pray for Lukas as we get ready for his heart cath on Thursday!

Share |

Monday, July 8, 2013

A Life Lesson from John Wooden.

A few weeks back, I read this article that left the reader with one outstanding snippet of advice—make each day your masterpiece. 

I decided to look it up, as I knew it had to be a quote from someone, somewhere. The quote came from John Wooden, one of the most revered coaches in all of sports history. "Make each day your masterpiece" was but a fraction of what the quote entailed and a cord was struck as I read it aloud. Here it is in it's entirety:

"Be true to yourself, help others, make each day your masterpiece, make friendship a fine art, drink deeply from good books - especially the Bible, build a shelter against a rainy day, give thanks for your blessings and pray for guidance every day" - John Wooden

In the past two years, I've learned that you have to take it a day at a time. I've learned to be true to myself—to stand up for what I believe in and never take no for an answer. I've learned to no longer allow my family and me to be anyone else's scapegoat or doormat. I've tried to help others by being there in their times of need, as they were in mine. I've certainly learned that good friendships are something to be treasured, and I have forgotten about the facade of the bad ones. 

I've learned that everyday should be filled with as much joy as possible, even when times get tough. I've drank from many good books, including the Bible. I hope I've built a shelter against a rainy day, and even when I get stuck in the downward spiral that can sometimes arouse from the stresses of everyday life and the fear of the unknown, I try to remember how blessed we are. I remember how blessed we are to have found out about Lukas' special heart months before his arrival—to have had that time to prepare. How blessed we are to have such an amazing team of doctors and supporters. Mostly, I thank God for the blessing that our miracle is still here with us. Seeing his joyful smile reassures me that things really do turn out okay sometimes. 

And Lord knows I've been doing a lot of praying lately. I pray every night before I close my eyes for guidance and the strength to do the right things, to make the best decisions, to always be the best mother, wife, daughter, sister, and friend that I can be, and to help me navigate the turbulent times.

As you may or may not know, on May 23 I lost my grandmother. I felt very fortunate to have been with her as she took her final breath. I feel fortunate to have been by her side to tell her I loved her and to say goodbye to this woman who had such a profound impact on my life. But it wasn't easy and I've struggled a lot since. My grandmother was diagnosed with Alzheimer's in March 2012. In July 2012, we nearly lost her to pulmonary edema, congestive heart failure, renal failure, and a slew of other health issues. She never truly recovered from this ordeal. In the last days of her life, she had stopped eating and had whittled away to almost nothing. She had lost all recollection of who each of her loved ones were. She was constantly scared and anxious. She cried a lot, and I don't think I had ever seen my grandmother cry. The one person she always remembered without fail was my grandfather—my beloved Pap. We lost him in 2004 to liver cancer. In the last weeks of her life, she cried out for him. She missed him, and she needed him. 

About two weeks before she passed, my mom told me about a dream she had. She said in her dream Pap was beautiful, healthy, and young, and my mom told him that Non (what I called my grandmother) really needed him now. My grandpa said he knew, and that he was coming to take care of her. She said in her dream, my grandfather reached over and placed his hand gently on my grandmother's leg, and suddenly my grandmother was young, healthy, and vibrant again. My mom said in that moment, she knew it wouldn't be long. 

In the days before my grandmother passed, our family held constant vigil over her. Her breathing had slowed to about 2-3 breaths per minute, and we knew at any moment she could be gone. That final night my aunt, cousin, mom, step-dad, and I all stayed in her tiny studio apartment within the retirement community where she lived. My mom, aunt, and I slept on the floor—each of us waking every 20-minutes or so probably to make sure she was still with us. Early in the morning on May 23, the nurse came in to give my grandmother her medication (morphine to keep her comfortable). As he stepped away, she took her last breath and she went home to be with my grandfather. I miss them everyday, as they were both a big part of my life. Their old house holds thousands of beautiful memories for me, and I've driven by it many times since. My brother and I spent more time there than we did our own home, I think. It all just seems so final. And in many ways it still feels very surreal that they are both gone. Amid the sadness, I'm thankful they are free of their pain and they are together again after nearly 9-years apart.

Not even a month later, Lukas had his 6-month cardiology check-up. While still reeling from the loss of my grandmother, I thought his appointment would bring me some joy. Afterall, we do love Dr. Farrell. After Lukas' echo was complete, Dr. Farrell sat with Lukas and me to discuss what she had seen upon review. In her beautifully eloquent way, she told me that Lukas' gradient was about 10 points higher than his previous check-up, and that his conduit had some pretty significant stenosis (with some areas being more stenotic than others). Finally, Dr. Farrell shared that it might be worth a shot to do a heart cath—with a possible balloon angioplasty—to open his conduit up a bit and relieve some of the pressure, and that she would consult with her associate—Dr. Hoyer—who specializes in cath procedures to get his thoughts before making a final determination. Then, I am sure my demeanor visibly changed as she told me that if they couldn't do the cath or if it didn't give the results they had hoped for, the gorgeous boy sitting in my lap would likely need his conduit replaced this coming spring. 

I left that office shaken while trying to collect my thoughts enough to summarize the appointment for those I knew would be calling. I got my boy in the car and cried for a minute before pulling myself together. Why him? Why now? I knew this conversation was coming, as it's the unfortunate side effect of his heart defect and—as Dr. Farrell said—we are in the maintenance stage now. But, I wasn't prepared to have the conversation so soon. Thankfully my mom was there to soothe my aching my heart. We had lunch together with our precious boy, and walked around talking about life and good things.

So, we've scheduled the cath with Dr. Hoyer. I'm scared and nervous, but hopeful maybe this can buy my sweet boy a little extra time before he needs another open heart surgery. I'm praying for guidance, and I'm thanking God for the blessings of modern medicine that allows us to know exactly what is happening with our boy and is equipping us with the tools to give him the best possible care. I'm feeling especially blessed that he's made it two years with no significant issues or additional interventions. We've not seen the inside of the hospital for any reason other than a regular check-up in over a year. 

I'm making every single day our masterpiece with as many smiles and as much laughter as our house can hold. I'm drinking deeply from books and the advice of other heart parents. I'm staying true to myself and leaning on the valuable pieces of fine art that are my good friends, family, and my wonderfully thoughtful, supportive husband and children.

We will get through this and our sweet, beautiful boy will be all the better for it.

And just so you don't leave totally depressed—our boy is 2! Can you even believe that? We celebrated his second birthday with the people who mean the most to us (including my loving grandparents in Virginia, who celebrated with us long distance). It was a beautiful celebration of his life and all that he's achieved. And on June 20, we celebrated his second heart birthday—the day he got a second chance. I said a big prayer and a thank you to the amazingly talented Dr. Turrentine, who never gave up on Lukas and fought tirelessly for him. 

So there you have it, friends. Life lately. Please pray for Lukas as he undergoes his heart cath, and please continue praying for the many heart families out there who are just beginning their journey and for those who are still walking this beautiful, sometimes tumultuous path. 

John Wooden, thanks for the quote—and the life lesson. 
Share |

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!
Share |

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. 

 photo d035aefe-b024-4b5d-97fe-4c740d36c185.jpg

And his message on those flowers absolutely melted my heart. 

 photo 46011db2-0846-4145-83a0-a921039731da.jpg

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. 

 photo 489e468b-3526-4384-82bd-e3bfa9fdbcbd.jpg

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. 

 photo 9747f323-b3e5-45ac-b6de-13a37e9e1a30.jpg

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!
Share |
Related Posts Plugin for WordPress, Blogger...