Aria, the baby who saved me.

As mirror syndrome waged war on my body, and threatened to take us both, all I wanted to do was save Aria. We had come so far in our fight for her life, and I was not ready to surrender. The awful truth was that if I stayed pregnant in an attempt to keep her going, I would have left this world in a matter of days, and she would have gone with me. My body was no longer a safe place for her, and carrying her was no longer safe for my body.

The worst part was that once Aria was born, I would fully recover over time. The tumor in Aria’s chest had destroyed so much of her small body already that the world outside of the womb was equally unsafe. She didn’t have a chance inside me, and birthing her wasn’t going to increase her odds.

For the seven months I carried Aria, I thought I was giving her the gift of life. But I realize now that through her birth, Aria was giving life back to me. Even more than that, she fought to give us over an hour of her life after she was born, so that we could be the family of three we had always hoped to be, even if only for a moment. The weeks we spent fighting for Aria were so worth every single second of life with her.

While I’m grateful for each continued beat of my heart, I hate that my daughter couldn’t stay. A piece of me will always wish I could have taken her place.

However, Aria’s story did not end on January 2, 2016, it was only just beginning. You see, in a lot of ways her life continues through me. It is now my responsibility and privilege to live a life so full that it satisfies the both of us. On the day God calls me home, I want us to have a million stories to share about how wonderful life has been for me on earth, and for her in heaven.

This is the very reason I get out of bed each day. I want to have a lifetime of joy and hope to share with her. It took me a while to see it, but my will to live now comes from a 2 pound, 11 ounce baby girl named Aria.

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Happy Easter, my sweet Aria girl.

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Aria, I’ve been looking forward to this day from the very moment you left this world. I’ve been so excited to celebrate the promise and proof of your everlasting life. It is because your life continues in heaven that I have found peace. I can’t wait to hold you again, and live the life I always dreamed of with you by my side.

I love you sweet angel. Happy first Easter in heaven.

He is risen!

Past Tense

It happens at least once a day. I’ll see something cute, pink, and girly and the words almost escape my lips. 

“I bet Aria will love this.”

And just as I begin to speak, I remember, and my heart sinks. I had gotten so accustomed to talking about Aria in a certain way, always in present tense, or future tense. Everything changed so suddenly that even now, parts of my brain haven’t fully adjusted. Planning for a future with Aria had become such a defining part of me, and it feels a bit like I’m trying to break a habit. I’m not used to talking about her in past tense, and it certainly isn’t something that comes naturally. 

Do I say Aria is beautiful? Or do I say she was? My heart is very conflicted on the matter. Sometimes saying she “was” just doesn’t seem appropriate. I could never say that Aria was my daughter. She is my daughter, and always will be. But if I were to go around saying that Aria is almost three months old, and is the most adorable little girl, people would be quite confused. 

Sometimes, using past tense makes me feel like I’m denying her existence. She is very much alive in my heart, and her life continues through me. Saying that Aria “was” just doesn’t adequately express the way I feel. But such is the case for many aspects of life for parents who have outlived their children. There just aren’t words to fully explain.

When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.

-Ronald Reagan

When “I don’t know what to say” is the best thing to say. 

As we started to share the news that our daughter had gone to heaven, we could tell it was really tough for people to know how to respond. We watched as people fumbled through their words, completely unsure if their response was appropriate. A lot of people looked at us and simply said “I don’t know what to say but I’m so sorry.” And that was more than enough. I’ve often heard that people feel guilty when they’re at a loss for words because they really want to be helpful. Honestly, “I don’t know what to say” is a million times better than pulling some random cliche out of the air and hoping it will work. 

I can tell you that admitting you don’t know how to respond is a whole lot better than “God just needed another angel” or even worse “God was just protecting you from less than his best.” I can still feel the fury in my bones from that one. Then there’s the overused, and insensitive “At least you can try to have another baby.” But the most hurtful of all is silence. I will admit that there are people in our lives who didn’t respond at all. They just disappeared. I assume it’s because they felt awkward about the raw emotions of it all, but I guess I’ll never really know for sure. 

I’m not trying to make this an angry rant. But I think it’s helpful for people to know what is appropriate when supporting someone who is going through pregnancy or infant loss. Below are a few things that I’ve found really helpful and comforting. 

  • Don’t shy away because it’s awkward or emotional. Admit when you don’t know what to say, and that you’re afraid of saying the wrong thing. It’s actually really helpful to have someone just share the silence with me and simply be there. 
  • Don’t stop calling or texting, even if I don’t respond. Sometimes I need a break from reality so I may not always pick up the phone, but it still makes me feel less alone.
  • I love when people send us messages out of the blue that say “I got to talk about Aria today!” or “I am thinking of you.” It means a lot for people to remind us that we haven’t been forgotten, and everyone hasn’t just moved on. 
  • Talk about her. I hate when I walk into a room and I can tell the subject of our daughter is the “elephant in the room” but no one acknowledges it. So they just dance around the subject completely as it it never happened. This tends to come off as if no one cares enough to step out of their comfort zone to remember my baby girl. When someone does bring her up, I excitedly jump at the opportunity to share her story. It really makes my day. 

The bottom line is, it’s totally ok to not know what to say, and it’s even better when you admit to it. Together, we will find a way to navigate this awkward mess that grief has made of my life. 

How do you stop your baby from developing a congenital defect? You don’t. 

The day we learned that Aria had a congenital defect in her lung, I drank a soda and ate a big ol’ bag of Cheetos. This might seem insignificant to a lot of people but for me it was huge.

Like most mothers, I was obsessed with trying to do the very best for my baby during my pregnancy. I immediately switched to an all natural, aluminum free deodorant. I started using fluoride free toothpaste. I made sure I was using chemical free cleaning products. I refused to take the anti nausea meds because of the risk of birth defects. I didn’t take any medications except Tums and my prenatal vitamins. I avoided foods that contained MSG. I religiously heated all cold cuts before eating them. I was so scared of mercury that I cut out all seafood. I’m a little embarrassed to say I even avoided standing next to a microwave while it was in use. I think you get the point by now. If someone said it could pose any risk to my child, no matter how small, I wasn’t doing it. I thought by avoiding all the “bad” things I could override nature and prevent all birth defects, boost brain function, and avoid any negative outcomes. 

I was wrong. 

My daughter was diagnosed with Congential Cystic Adenomatoid Malformation at my 20 week ultrasound. I was totally gutted by the diagnosis. I thought I had done everything right. How could this possibly have happened? What did I do wrong? But this wasn’t my choice to make. She was going to develop this defect no matter what I did. Most congenital defects aren’t anyone’s fault, they are flukes. It just happens. 

This is even true in cases of Spina Bifida. There are multitudes of mothers who blame themselves because they believe folic acid deficiency caused the neural tube defect. Despite everything the media tells us, it isn’t. Folic acid deficiency only accounts for about 60% of the cases and the rest just happen. You could literally take 4x the reccomended dose of folic acid and still have a baby with spina bifida.

I know it’s important to eat well and live a healthy lifestyle, especially during pregnancy. Yes, you should absolutely listen to your doctor and make some lifestyle changes, along with cutting out alcohol, cigarettes, and certain medications. I don’t disagree with that, but I also wanted to share a bit of reality. Everyone tells you to take your little miracle prenatal vitamin filled with lots of folic acid and you’ll be just fine! But that is simply untrue. 

I’m not saying any of this to scare expectant mothers, but I think it’s an important message. I’m involved in a few support groups for mothers experiencing the diagnosis of a birth defect and I can’t tell you how many times I’ve seen women ask “what did I do?” It’s frustrating and saddens me that these mothers, who are already enduring so much, are bearing this guilt on their shoulders. 

It is not your fault. You are not a cautionary tale. You are a good mother.

After a lot of research and several doctors telling me I wasn’t to blame, I finally took off the burden of guilt and shame over Aria’s diagnosis. It was incredibly freeing. I still have scars and bruises from bearing that weight, but I’m healing. If you have stumbled upon this blog and are currently experiencing the diagnosis of congenital defect, this message is for you. Please put down that guilt. It’s not your burden to bear.  

 

Warning: Awkward encounters ahead

Brian and I are getting a little closer to leaving Florida and moving to another state, and we may be leaving even sooner than we originally thought. While I’m looking forward to a change of scenery, I’m nervous about the social aspect of moving. We’ve met a lot of really special people here, and they are going to be really tough to leave behind. I’m sure the friendships will still continue, but it’s not the same as seeing them regularly. 

I’m nervous about meeting new people because they didn’t know us before our daughter was born. We haven’t had to explain a whole lot because our friends experienced it with us. I often wonder, how do I go about telling someone I just met? What do I even say?

“Hi! My name is Kim, I have a daughter in heaven named Aria. What’s your name?”

I know that definitely isn’t the best way to go about it. I can already see the uncomfortable faces of strangers followed by a sad “I’m so sorry”. I do want people to know Aria is still very much a part of our family, but I don’t want people to respond by feeling sad or uncomfortable. I can’t imagine we’ll make any friends if that is the case. I want to find a way to explain without people pitying us or thinking of us as “that poor couple whose daughter passed away.” 

Yes, our daughter entered heaven before us. Yes, we miss her every single day. Yes, it is sad at times. But there is also joy, hope and thankfulness. The Lord blessed us with Aria and has continued to bless us after her passing. I want people to be able to see that. I want people to look at us and see that we are so much more than what we have experienced.

I’m quite certain there will be a few awkward moments as we get the hang of introducing new friends to our daughter in heaven.  I am very hopeful that we will find people along the way who accept us and our awkwardness, and choose to join us on our journey through life. I just pray I find the right words to honor Aria and keep her memory alive.