There is a nine-day stretch of time that is particularly hard for me. That is March 11th to today. It marks the time that my niece, Ava, was alive on this earth. That was two years ago.
I woke up to find several text messages on my phone from my dad saying that my sister went into labor in the middle of the night and that Ava was being taken to the Minneapolis Children’s Hospital.
When I called my dad he said that they didn’t know what was wrong but that she had trouble breathing and she was being taken away for some additional tests.
I tried to carry on with my day and not worry too much until I knew there was something to worry about. I ate breakfast, got dressed, and started driving to work. On the way there my dad called. He told me there might be something really wrong, they still don’t know what, but it could be something very bad and I should go home and be with Patrick (my husband).
So I waited. One of the hardest things to do in life is to just wait for potentially bad news to come. I sat at home and tried to keep from going out of my f#cking mind, but that’s pretty much impossible. My phone would occasionally ring and deliver new information; my sister is at one hospital but she’s okay. Ava is at a different hospital getting tests done, but my dad and brother-in-law are with her.
What should I do?
Do you know anything new?
When I found out that Ava could have something called a Trisomy 13, I did what most people would do and looked it up on the internet. It’s a genetic disorder where a person has 3 copies chromosome 13, instead of 2. When I read how short the life-expectancy is, I started to panic.
I’m coming home.
I’m getting on a plane and I’m coming home.
We didn’t even leave out extra food for the cats, we just packed up some stuff and left. I had no idea how long we would be gone so I threw an arbitrary amount of clothes in a suitcase, booked a flight, and took off.
Trisomy 13 is pretty rare, only 1 in approximately 10,000-16,000 babies are born with it, so we were holding onto the hope that she wouldn’t be the 1. The test takes a long time, I don’t remember how long, but I was in Minnesota for more than a whole day before we got the results.
We were sitting in a room for families when the doctor came in. My dad was called into the hallway to hear the diagnosis and as soon as the door shut, I knew it was going to be bad news. They wouldn’t call him out of the room if we were all going to be relieved by what she had to say. He walked back in. He sat down and put his arms around me and my other sister.
“She has it.”
I buried my head into his shoulder and started to cry. We sat there for a few minutes as a family before he got up to go be with our big sister. I was stunned. I was numb. I didn’t know what to do. After a few minutes of sitting with my husband, to no one in particular I said, “I have to change my flight,” then got up and walked out.
I stepped into the hallways and that’s when it happened. Overwhelming sadness. I could feel it in the very depths of my stomach. It started to rise up in my chest, consuming me. I tried to hold it back, but it was bubbling up and I couldn’t breathe.
Then the dam broke.
My knees went weak and I fell into my husbands arms. He held me while I choked on my uncontrollable sobs.
The staff at the hospital were wonderful to us. They went out of their way to make sure that we had as much time with them as possible. Ronald McDonald House had a wing attached to the floor where the NICU was located and my sister and brother-in-law were given a room to stay in. They were able to be as close to their daughter as possible at any time of the day or night.
There is no measure for the amount of comfort Ronald McDonald House gave to me and my family. They fed us and allowed us to stay close to our little girl.
Over the next several days, there was nothing to do but be with her. So that’s what we did. Each of us took turns holding her and talking to her. We read books, dressed her in some of her own clothes, and put a pink bow in her beautiful blonde hair. There’s even a group of photographers that works with hospitals, so that families can have professional photos taken of children who won’t make it home.
Then the day came. All of her grandparents, aunts, and uncles were in the room next to hers. She was with her mom and dad when she stopped breathing. Through the door that adjoined the two rooms, I heard my sister say “My baby girl,” then there was nothing but heartbreaking sobs. It was pure, gut-wrenching sadness.
We sat there with her, not wanting to leave because leaving meant that she really was gone. I stood in the hallway while we started to file out. My feet wouldn’t move. I thought to myself “I don’t want to go. I don’t want to leave her.” But I started to pick up my feet and walk out the door. I don’t know how, but my legs just carried me out.
A closeness formed between me and my family that I think people rarely feel. When there is a shared tragedy with pain that is that acute, if you weren’t there, you just wouldn’t understand. Only those select few people “get it.” The next year was really hard. Certain friends were very supportive, and a surprising number of friends were not. It’s all the missed “firsts” that were the worst, though. Her first Christmas or her first birthday especially.
But then things start to get better.
A few months after Ava died, we found out that my sister was pregnant again. Shortly after, I had a dream. My sister and brother-in-law were in my dream and they were holding a little boy. He was chubby and smiley and just so happy. When I woke up, I knew. I just knew that everything was going to be okay.
The following February, just a few weeks before Ava’s 1st birthday, my nephew Will was born. He’s healthy and smiles a lot.
It was right around the one year anniversary of her death that we came up with the idea for this blog. I didn’t know it at the time, but these three girls would help me in so many ways. Time eases the pain, but it’s easier to cope when you’re surrounded by family and friends.
OAM is currently holding a fundraiser for the Ronald Mc Donald House for their amazing efforts in helping with Bryce’s family and other families all around. Please check out our Store and find the items with the pop tabs. All proceeds will be donated to the Ronald McDonald House Charities.