On Change.

The other day I was answering an email from the parent of a newly diagnosed child. This particular parent asked me a question I've been asked at least a hundred times in the past year; whether this experience has changed me. I've always said that Lukas and his journey changed me for the better. But then I was asked the question I'm not so sure anyone else has asked. How? How did it change me? With one word, I began reflecting on the how. I realized I've never actually sat down and thought through all the ways this has changed me. 

Emotionally, mentally, physically, spiritually. My "change" has been pretty all encompassing. 

Emotionally it made me vulnerable. For anyone who knows me, this is something I have always struggled with. I don't like feeling vulnerable. Especially when it comes to my emotions. I've always considered myself to be a pretty "put together" person emotionally. I don't like to cry and definitely not in front of others. I don't like to feel sad, angry, scared, you name it. I always want others to see me as strong and steady. Even if its just a facade. I've always wanted to be there for everyone else; be there in their time of need and help them to be strong. When we learned of Lukas' heart defect, for the first time in my life I felt vulnerable. It was the first time in my life that I hadn't been able to keep myself together and composed for others. I was hurting and there was no physical way to mask that. My emotions became a pretty heavily discussed topic, which was hard for me. It was the first time I had ever really let my guard down for anyone (even my husband). If you know me, you know I think hard and I feel hard. All too often I keep those thoughts and feelings to myself because I don't like for others to worry about me. From an emotional standpoint, I learned that its okay to show emotions. Its okay to cry when you need to. To scream when you need to. Its okay to let others know how something feels. Its okay to share your fears and innermost thoughts and let others comfort you when you can't comfort yourself.

Spiritually I was rocked. This journey tore my faith apart, but then? It rebuilt it. In those days and weeks after Lukas' diagnosis I was so angry with God. How could He let this happen? How was this fair? What did I do to deserve this? What had I done for Lukas to deserve this? I cursed God. I cursed my faith. I cursed myself and anyone who dared tell me this was God's plan. I didn't want to hear it. I didn't want to hear that God would never hand me more than I could handle because this certainly felt like more than I could. I thought back on all the things I had done throughout my life. Things that had hurt and affected others. Poor decisions I had made. Things that I wish I could undo or in some way change. Then one day, I had a conversation with my mom. She said she had done the same thing. She had thought about what she had done in her own life that something like this could happen to someone she loved so deeply. Maybe it was her punishment for something. Punishment is a word I used a lot in those early days. Through my talk with her, I realized no one did anyone to cause this to happen. That's simply not the way God works. He doesn't cause bad things to happen as a punishment for some poor decision you might have made years ago. I've always been raised that God is a loving God. An understanding God. From that day forward, I started praying. I prayed that God would help me to find peace. I prayed that God would keep Lukas safe and he'd let him come through all of this. I pleaded with God and swore never to turn my back on him again if he'd just let my baby be okay. I'm proud to say I've kept that promise to God and to myself. 

Mentally it made me a better person. A better wife, a better mother, a better friend, daughter, sister. The list could go on and on. I know it sounds cliche to say that it made me realize and appreciate the fragility of life, but truthfully it did. I learned that we can never take things for granted because life can change in the blink of an eye. Up until I got Lukas' diagnosis I thought I had everything figured out. I lived in my perfect world where I had absolute control of my everyday happenings. That changed on that cold, icy day in January. My world shattered and I was reminded in that instant how fragile and beautiful life really is. There was this tiny boy inside me whose heart was beating away despite its flaws. There was something fragile, yet beautiful about that. I started taking the time to find beauty in things I never had before. To appreciate things on a much higher level. I also learned that sometimes we have to relinquish control. I had very, very little control over the course of events following Lukas' diagnosis. Aside from choosing his doctors, transferring my care, and getting myself mentally prepared as best as I knew how, that was about all I could do. That was immensely hard for me. I like to plan. I like to know what to expect. And really, for the first time in my life, I had zero control over what came next. All of the struggles of the past year or so have made me more appreciative of what I do have. I realized that life wasn't about what label I was wearing, how much money I had in the bank, what I spent on my car, how big of a house I had. None of that mattered. All that mattered and all that matters to this day is that my boy is here. He's a little brother, a grandson, a nephew, and a cousin. He's my last baby. And he here's with us. He fought the odds and he made it through. That's all that matters. And for the rest of my life, I will do everything I can to protect him. To protect my boys. 

Physically this journey took a lot out of me, but it made me more determined to take better care of myself. It made me want to eat better, make the boys eat better, exercise more, the whole nine yards. I want to be healthier for Lukas and for the boys so that I can be here in their times of need. I want to be here to comfort them, to hug them, kiss them, whisper in their ear, tuck them into bed. I want to be here for them always. I definitely learned what the true definition of health is and I am more determined than ever to keep our family healthy and happy.

Of course, Lukas' journey has changed many other aspects of my life too. Some more significant than others. I learned to appreciate my family more because they showed me what unconditional love really looks like. They carried me through this. My sister would work nights at the neighboring hospital and she'd come over every available opportunity she had. My dad never missed a single day, except for when he had to go out of town for business. Even then he called me several times a day. Not only to check on my baby, but because he wanted to check on his baby too. I remember one night when he brought boneless buffalo wings and a slew of appetizers from Applebee's for me and we had a "picnic" in the cafeteria while we laughed and cried together. My mom, mother-in-law, father-in-law, brother, sister-in-law, grandma, all of them called or texted me everyday. They visited when they could. They watched our big boys so we could be there with Lukas. Same thing for my friends. They prayed and had others pray. They shared his story with everyone they encountered because they wanted all the positive thoughts and prayers for him they could muster.

On that same token, there were friends and family I was disappointed in too. People whom I felt really let down by. They never called, they never texted, they never even asked about him before, during, or after his operation. It certainly afflicted a great deal of hurt that people who promised to always be there, simply weren't. So I think in it all, I truly learned the value of friendship too. And it made me more determined to be a better friend. I was angry about it for a long time. Maybe anger isn't the right word, but I was certainly heartbroken. I've moved past that now because it doesn't change anything. The past is the past and you have to let things go because life is simply too precious and far too short to feel that way. I will always be there for those individuals in their time of need regardless because its the right thing to do. That's another thing I learned through this. Never hold a grudge. That ties into that whole "life is too short/fragile/beautiful" category.

So, when I get asked whether Lukas has changed me; whether this situation has changed me, the answer is unbelievably so. I don't even recognize the person I was a year and a half ago. In many ways that person feels like a distant, faint memory. But I'm thankful for the changes. I know I'm a better person today because of those changes.

Until next time friends....

Looking Back.

Hello friends. I know I've been somewhat silent on here for the past month or so. That means its time for an update. On Lukas, on our family, on everything.

First, let me apologize for my absence. When the one year mark of Lukas' official truncus diagnosis arrived in late January, it hit me a bit harder than I thought it would. I thought back to that fateful day when Dr. Darragh looked me and my husband in the eye and uttered the words that would forever change our lives. I remember every thought and every emotion in such raw detail that it feels like only yesterday. I'll never forget that paralyzing fear and sadness that loomed in the moments after Dr. Darragh confirmed my fears. A year later, those feelings resonated deep in my heart. I thought back to what I was doing and what I was feeling this time last year. In my deepest, darkest moments I received support and guidance from so many; my family, my friends and even complete strangers. In the months leading up to Lukas' birth, I had never been so afraid. I'd never felt so unsure or powerless. The support I received helped me in so many ways. It helped mend a heart that was breaking. I knew there was nothing I could change for my little boy, but it certainly helped me be stronger and better for him. It helped prepare me to fight the good fight and it helped me not to give up hope. 

On the anniversary of that fateful January day, I looked through photo after photo of Lukas' journey to life and to where he is presently. I looked at ultrasound photos from that day. I looked at photos from the day he was born, his stay in the NICU at Riley, his decline while in the NICU, photos from his operation and recovery. Its amazing how far he's come in his short 8-months. As I sat on the floor next to my little squirmy boy I just cried and cried. This time though, they were tears of happiness and joy. A pretty stark contrast from the tears I shed at this time last year. If this past year has taught me anything its that miracles do happen. Lukas is my miracle. He's my living, breathing, smiling, laughing miracle. He reminds me of what life is all about every time I look him in the eye. He's shown me what strength and bravery are really all about. 

With that said, my little heart hero is growing by leaps and bounds. At his last pediatrician appointment he was in the 40th percentile for weight and 70th for height. That's a pretty big change from his first few appointments when he was only in the 8th percentile across the board. He's growing like a weed and he looks so, so healthy. He's been receiving the Synagis vaccine (which helps prevent RSV) each month, so I've had the unique opportunity to monitor his weight gain. Last month he was almost 16lbs. He has rolls upon rolls. He has his two bottom teeth (and a whole lot more coming in) so his smile is perhaps the sweetest, funniest thing I've ever seen. He sticks those two bottom teeth out and just throws his head back and laughs. Its a riot. He's come so far in his 8-months on this Earth. Its such a miracle. Everytime one of his doctors see him they are just blown away by him. So is his mama, I assure you =) He's the happiest, most joyful baby too. He barely ever cries and he just smiles and laughs all day long. My mom always says he is the jolliest baby she's ever seen (and she has 7 grandchildren mind you).

Lukas with his new Baltic amber teething necklace from Inspired by Finn

In the past month, I've also welcomed a new little nephew! My brother and my beautiful sister-in-law welcomed their first little one on January 23rd. His name is Jacob Everett (after my grandfather who passed away in 2004) and he was born weighing 8lbs 2oz and 22.75" long! He's absolutely beautiful! And my brother and sis-in-law? Well, they are over the moon and it totally shows in the way they look at their beautiful little boy. I felt so privileged to be there on the day they entered into the amazing world of parenthood and I have to say, they're naturals! 

welcome to the world baby Jacob!

So there you have it friends. Just a little recap of our 2012 thus far. Its been a great year so far and I'm feeling very blessed. Each day with my little family is just a reminder of how lucky we truly are. 

Until next time...

P.S. - I just realized my blog banner still says fall - think I should change that? haha