Wednesday, February 29, 2012

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....
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  1. What a beautiful post, Christie! You shared so much the emotions and changes that I went through during and after Rebekah's diagnosis. And I can especially relate to the part about friends/family that we thought would be with us, and they never called or even texted. But on the other hand, we have so many more friends and "family" in the heart community. I think that is one thing that I will always treasure is how the heart mom community comes together for each other. I am blessed to know you and your sweet family! :)

  2. Wow, did I just write this??? You literally took the words right out of my mouth! The struggle with why, the hurt feelings by people not being there..... everything describes our journey to a T too. Thanks for writing this beautiful post and making me remember why being a heart mom is such a special journey!

  3. Aw! Thanks guys! I feel so fortunate and blessed to know both of you and be able to share this journey with you both. I wish we could have met under different circumstances, but I'm honored to go through this with you both =)


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