My darling daughter, you were not defective.

To my sweet Aria girl,

I know when people talk about your CCAM, they often say you had a birth defect. Your Dad and I say it too. Sometimes, it’s so much easier to say you had a severe birth defect than it is to explain the ins and outs of congenital cystic adenomatoid malformation, hydrops, and pulmonary hypoplasia. Most people have no idea what those words mean. In fact, spellcheck has underlined most of those words in red because it doesn’t recognize them.

But to be honest with you, I don’t like the word “birth defect.” I dislike the way it implies you were defective. If you look up the word “defect” in a dictionary, it is defined as a shortcoming, imperfection, or lack. If you look up that word in a thesaurus, you’ll see synonyms like flaw, imperfection, deficiency, and weakness.

But my darling, you were nothing short of perfection. None of those words define you, not even a little bit. You were fearfully and wonderfully made. Your spirit is beautiful, and your undying presence is captivating. You stole my heart before I felt the flutter of your first kick. You commanded my love without even speaking a single word. Your brief life has impacted so many people, and your legacy continues to grow. You were powerful, my angel, and you still are.

You did not lack a single thing. It was our world that lacked the ability to handle your uniqueness. You were created for far more than we could provide. You were not born with a defect, you were born with great purpose.

All my love,
Mom

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Our third wedding anniversary is almost here.

A few months ago, I wasn’t sure if we would make it to our third anniversary. As I laid in Brian’s arms while in my hospital bed, I wondered if the aftermath of our daughter’s passing was going to tear us apart. I knew this tragedy had the potential to completely destroy us. To be honest, I wouldn’t have been all that surprised if it did. Disasters of this magnitude can easily break down the strongest of relationships. Sadly, it happens all the time and I completely understand it.

So that night as I listened to the sound of my husband’s heartbeat while I laid my head on his chest, I prayed that I wouldn’t lose him. As hard as it seems to imagine a greater tragedy than losing a child, losing Aria and Brian would have been even worse. I was so afraid that my best friend would become my enemy, and our grief would cause us to forget the commitments we made on our wedding day.

Truthfully, we had no idea what we were agreeing to as we vowed to stand by each other for better or worse. We still believed in the illusion that a perfect wedding would lead to a perfect life. We never imagined we would become bereaved parents. No one ever does. But the beauty in all of this is that we never broke those vows.

Brian scooped me up into his arms when my grief brought me to my knees. He held me for hours as guttural sobs poured out from the darkest pits of my sadness. He has fed me when I wouldn’t eat, and helped me shower when I was weak. The moments when Brian needed me came as well. I ignored the fact that I had just gone through a major surgery, and immediately dropped to the floor with Brian when grief took his ability to stand. When Brian was having a difficult moment, my need to take care of him overcame my own heartache so that I could provide him with the love and support he needed. We never attempted to run from the pain, we always carried each other through it.

To be completely honest, there have been occasions when we have mistreated each other in the aftershock. We both became quick to anger because of the anguish we were feeling. Sometimes, it was much easier to snap at each other than admit to our pain. But we always did our best not to take it personally, and to understand the hurt our actions stemmed from.

The dynamic of our marriage used to revolve around a 50/50 split. We both felt that we should constantly contribute equally. That has completely changed, and now it often looks a lot like 100/0. There are many instances when I’ve been so broken that I had nothing left to give him. But Brian comes to me in those moments and gives me 100% of himself so that I can find my way out of the darkness. When Brian is struggling and completely unable to give anything to me, I step in and give him every single ounce of love I have in my body. Sometimes he’s saving me, and other times I am blessed with the honor of saving him. “For better or worse” means loving each other even when we aren’t currently receiving anything in return.

It has been five months since we lost Aria, and I can say with great certainty that this is not going to rip us apart. Somehow, we have forged an even greater bond in the midst of such a tragic loss. Our third year of marriage has been filled with the most wonderful moments, and the absolute worst that we have ever faced, but it’s a milestone with great meaning. We will celebrate this anniversary with a greater sense of accomplishment than any other year because we have overcome the impossible. We have survived. We will go into our anniversary on June 15, 2016, as a completely changed couple. We are more broken than before, but far better than who we once were.

Brian, it has been an absolute honor to be your wife and I’m so grateful that I get to share the rest of my life with you. You are my guiding light, and you have brought me through life’s most impossible moments. There are so many times when it feels as if you have reached into my chest, taken hold of my heart, and forced it to keep beating. Without you, I wouldn’t be here. I love you.