Losing Someone So Young

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.

Ava with her toys

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.

What?

Why?

What’s wrong?

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.

Ava

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.

Will

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.

xo,
Bryce

Bryce, Tracy, Karen, and Ava

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.

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Categories: Spill It: Confessions, Welcome!

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25 Comments on “Losing Someone So Young”

  1. March 20, 2013 at 8:10 am #

    This is a beautiful post. Just so wonderfully beautiful. It is sad to lose a child but the strength that comes from your family and friends keeps you going.

  2. Randi
    March 20, 2013 at 8:14 am #

    I’d never seen the picture of the three sisters with Ava before. It’s BEAUTIFUL and I can’t imagine how you all must treasure it. Your post is a great tribute to the love your family still carries for Ava, and it’s a bittersweet reminder for all of us to be grateful for our blessings.

  3. March 20, 2013 at 8:41 am #

    Ava’s story brought tears to my eyes. I could never imagine such a loss. The is a beautiful tribute. Thank you for sharing her story with us.

  4. March 20, 2013 at 8:52 am #

    I am so sorry for your families loss 😦

  5. Anonymous
    March 20, 2013 at 9:19 am #

    Agree, just beautifully written. Thanks for opening your heart to share your story with us.

  6. March 20, 2013 at 9:21 am #

    What a heartfelt post. And you have a special family – thank you for sharing.

  7. March 20, 2013 at 9:22 am #

    Agree, just beautifully written. Thanks for opening your heart to share your story with us.

  8. Bill Scherer
    March 20, 2013 at 1:32 pm #

    I’m Bryce’s dad. I’ve said more tomes than I can possibly count how proud I am of my family. This is another of those special times. I was going to write something up today about the anniversary of Ava’s death but first I saw this post. After I read it, I knew I didn’t need to say more. Bryce has said everything I could and probably better.

    Two years ago today was the worst day of my life. The only way I got through it was because of my family. They make me so proud every day.

  9. March 20, 2013 at 3:40 pm #

    What a beautifully heart-wrenching post.

    It brought to mind a day seven years ago this week when my best friend called from four states away to tell me she had miscarried. She was due to give birth two weeks later, on my birthday. We cried on the phone together across 1,100 miles after the doctor had induced labor and she gave birth to an otherwise perfect little girl. The umbilical cord had knotted.

    I dropped everything and flew home for the funeral. I remember sitting on the floor of her bedroom, leaning against the wall, looking at pictures of Faith. We just sat there and cried. And then we cried some more. I can’t put into words how special it was for your family to have Ava to hug and kiss and hold, even if only for a few days. What an incredible blessing, even if it is surrounded by pain. And what a blessing your nephew must be… my honorary nieces didn’t erase the pain she and her husband have at losing their firstborn, but they bring joy nonetheless.

    Your post is a beautiful tribute to the strength and love your family shares. How precious. You are all blessed!

  10. Karen
    March 20, 2013 at 4:47 pm #

    I will remember the sound of that awful, heart-wrenching wail for the rest of my life. The cry of a mother who has just lost their child – the manifestation of total despair and bottomless grief. I hope I never hear anything like it ever again.

    Nicely written little sister.

  11. ramblingsofabipolarwoman
    March 20, 2013 at 5:04 pm #

    As said by everyone, beautifully written. I was choked up and crying while reading this. My heart was breaking for what your family went through. I am so glad you have each other to lean on, to help one another through such difficult times. Family is precious. And I am so happy to hear that Will is here, happy, and healthy. What a joy he must be. Ava will never be forgotten, her place in your hearts will always be there. I am just so glad you all have one another, that you’re healing.

    My son’s dad and I haven’t been together since before I found out I was pregnant. It was a struggle for us for years to get along once our son arrived and he decided to be a part of his life. However, what he went through is something I’d never wish on anyone. He did find someone, someone amazing who I respect and think has been great with my son, the lovely Abbey. After a few years of being together, they found out they were having a baby. Their child was due November 9th, 2010. Ironically enough, my son was due November 9th, 2002. I had my son the 10th. Anyway…

    On August 10th, 2010…the day before Abbey’s birthday, she went into labor. I don’t know all of the details. I never thought it was my place to ask. But, she and Carter were flown from Appleton to Milwaukee to get Carter more help. Agreed that the Ronald McDonald House is amazing. That is where Abbey and sometimes Jason stayed. He commuted from work, which is nearly a two hour drive, to see her and their son. It was so rough on everyone, our son included. He was torn between wanting his brother to be alright and jealous because they were spending so much time on Carter. He didn’t fully understand. My heart broke for Abbey, being a mom myself. And no matter what has happened between Jason and I, I never would ever want him to suffer like he was.

    Just after his original due date passed and so many surgeries were had, they were told Carter wouldn’t have long to live and what life he would have would be rough. He’d be blind, fed through a tube, in a wheelchair, etc. They had to make the decision whether to take him off support or to keep him on. It was very tough on them. In the end, they decided they didn’t want their son to suffer, so they took him off support. Later that day, he died in Jason’s arms. It’s been two and a half years and it still breaks my heart when I think about it.

    Luckily, they like you have had a lot of support from family and from friends. It’s rough losing a child, a pain one never recovers from fully, but with a lot of love and support, it is easier to get through. I pray for continued healing for you and your family. Thank you for sharing this, for touching my heart this way.

  12. Steph
    March 20, 2013 at 5:07 pm #

    A beautiful post Bryce in remembrance of Ava. You vividly paint something that is so hard to verbalize – the love, pain, the unbelievable sadness, and the feeling of not knowing how you’re going to go on… but somehow, you do.

  13. March 20, 2013 at 6:06 pm #

    She may have led a short live but she has impacted you positively and impacted us in turn. Thank you for writing this beautifully.

  14. ramblingsofabipolarwoman
    March 20, 2013 at 6:58 pm #

    As I see by the bottom here, you can see already that I nominated you for the sunshine award. I thought you could use a little sun! Your posts often make me smile, but even when sad, they still touch my heart! Check my post for the rules and list of nominees, including you lovely lady!

  15. March 20, 2013 at 7:46 pm #

    Ava will always be remembered. She clearly would have been welcomed into the world by a loving, supportive family. May her life always be celebrated. Thank you for sharing.

  16. March 20, 2013 at 8:05 pm #

    I will echo the thoughts and prayers for the positive changes since that darling angel’s trip too soon back to Heaven. I had two miscarriages past the midpoint and felt a big loss. I cannot imagine holding her and losing her.

  17. March 22, 2013 at 9:36 pm #

    Oh, Bryce, what a heartwrenching experience. Thank you for sharing such an intimate, honest and eloquent post. My heart broke for you and your family as I was reading it but felt so much joy to see your beautiful nephew. I’ve spent a lot of time in hospitals due to my grandmothers and mom being ill. I know how much of a difference amazing medical staff make. The people at Ronald McDonald house sound amazing!

  18. MC
    March 23, 2013 at 9:48 am #

    So sorry for your loss! No matter how much time passes it will still be like yesterday and only the sadness and pain will fade. It was heartbreaking to read this but thank you for sharing!

  19. March 24, 2013 at 6:55 pm #

    2 years ago I lost my husband. While he was by no means an infant, he was my life, my love, and my little girl’s Daddy. It was a heart breaking and life changing experience and through it his sister and I ended up closer than ever.They say time heals all wounds, but I think it would be more accurately stated that family and friends love, kindness, and ability to endure grief filled rages help more than anything. I am sorry for the loss of such a young and tender life. Thank you for sharing your story.

  20. March 26, 2013 at 10:56 am #

    I want to thank everyone for their wonderfully supportive comments. During tough times, it’s the love of family, friends, and even compassionate strangers that get me through. Thank you so very much for your kind words.

  21. Dana
    March 26, 2013 at 6:41 pm #

    Thanks for sharing this. I have friends that have lost their own children in different devastating ways, and I cannot even fathom what it would be like to actually witness such a loss with your family. Your story helps bring me a little closer and I send my prayers and condolences to you and your loved ones!

  22. Tracy
    June 1, 2013 at 9:45 pm #

    I’m Bryce’s oldest sister, Ava and Will’s mother. I just discovered this beautifully written post by my baby sister that so beautifully captured the brief time we had with out daughter. Bryce, thank you for this wonderful tribute to Ava’s memory.
    I sat here with tears pouring down my cheeks as I read about those nine days through your eyes. I wasn’t with you, Dad and Karen when you learned of her diagnosis, the doctor must have come to speak to you after she finished with us. But I do know that I felt privileged to have such an amazing family later that night when Aaron and I came into the room where all of were waiting for us. You all waited for eight hours just to spend ten minutes with Ava and tell her good night.
    I had felt that way days earlier too. Dad told both you and Karen there was nothing you could do but wait, so to try to go about your day. You both ignored him and came anyway. Karen and Mom sat with me in the hospital while Dad and Aaron were with Ava at Children’s and you were on a plane that night. The four of you, along with Patrick and Reed, were there every possible moment.
    And yes, Bryce was right on in her support of Children’s and the Ronald McDonald House. We had a room to sleep and shower just down the hall from Ava’s room, we had meals provided. The staff of the NICU helped us make every moment count. They arranged for us to get to bathe Ava and dress her in one of her outfits, which wasn’t easy considering how many cords and tubes she was hooked up to. They helped us preserve her hand and footprints and gave us a special blanket with her name, birthdate and prints. One of the nurses told us about special jewelry created from fingerprints and looked up where we could have it made. They arranged for the photographer from Now I Lay Me Down to Sleep to be there when Ava passed. We could not have asked for better or more loving people to care for our daughter. They made sure we held her as much as possible, gave us chanced to snuggle with her in bed, read to her, sing to her, cuddle her. Her aunts, uncles and grandparents all got chances to hold her. We made the most of every moment, preserving as many memories as possible.
    On the day she died, our family was there. They let out sounds of joy when the tubes were removed and I was able to pick her up for the first time, free of all the wires and machines. Then they waited in the next room for the next eight and a half hours. During that time, my husband and I held Ava. We sang to her, read to her, cradled her and told her how much we loved her. Among the things affected by her illness were her eyes. She rarely opened them, but she did during our last hours together. It was her way of saying good-bye – “I love you and I know you love me and it’s time for me to go.” When she did drift away, cradled in my arms while my husband held us both and the doctor confirmed that she was gone, a heartbroken wail ripped itself from the depths of my soul. Our nurse, Amanda, said she would go tell our families next door. I remember thinking that she didn’t need to tell them, I’m sure they knew by my sounds of grief but I never confirmed that until I read what both my sisters wrote.
    My family is what got me through the black hole of grief I dwelled in for the next eleven months. My experiences were similar, some people were amazing in their support and others couldn’t seem to be bothered. In particular, my parents, sisters, two of my aunts and three of my cousins were there whenever and for whatever I needed. They’d let me grieve if I needed, they’d distract me if that’s what I wanted. They got me out of the house or let me stay in and cry on their shoulders. They, and the impending arrival of my son, are what kept me going.
    Eleven months after Ava’s loss, we welcomed her little brother Will. He is beautiful and smart, just like Ava, but thankfully he is also prefectly healthy. We hope that his big sister will continue to watch over him from heaven.

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