Still Living in the Unknown: Happy 10th Birthday Ava Szajnuk!

June 4, 2017 10:37 am Tags: , 1 Comment 9

We are celebrating Ava’s tenth birthday today! I remember the feeling I had the second I found out I was pregnant with Ava. I waited for years to have a child and it was finally going to happen! I was thirty-four years old and we were living in New Jersey at the time.

I knew what I wanted to name my first daughter when I was in my early twenties. Her name was going to be Ava Gene after Ava Gardner and my dad, Dr. Gene Wegner. I worked up until two weeks before her birth and commuted two-hours each way to Manhattan from Caldwell, NJ. I had a wonderful pregnancy and Ava was born via C-section on June 4th, 2007.

I remember the moment I held Ava for the first time! It was a feeling that I’m sure every mother has when they first hold their newborn. It’s a feeling of, “I WILL NEVER LET ANYTHING HAPPEN TO YOU!!!!” 

Since the moment I touched her skin and looked into her eyes, all I have ever wanted is for her to be safe and healthy.

I also remember the feeling of anxiety pouring through me as well as a flash of heat when I first held her in my arms. My body changed during my first C-section. I was on fire. The heat generating from my neck and chest has never gone away. My body changed in an instant. When I watched the video of my monologue to Ava, it reminded me how much my body changed.

I loved holding Ava. I loved every single minute of having my little girl, my daughter.

I cannot believe it has already been ten years! I don’t know what made me think to do a video to her but I’m glad I did! It reminded me of how much I wanted to have a healthy child…and to be healthy myself.

I remember those early days with Ava. It was so innocent and so much fun!

We spent every second together and I talked to her nonstop. We spent days at the beach on the Jersey Shore. We would sit in the backyard on a blanket and just play all day. The innocence of those days. How I long for them again…

What a roller coaster ride we have been on since I gave birth to Ava.  Ava was born in Caldwell, NJ. She has since lived in Madison (WI), Barrington (IL), Salt Lake City (UT), Park City (UT), and Delafield (WI). When we lived in Caldwell, Ava and I would fly back to Madison every single month when Justin would travel. Ava was my world and I loved every minute of it!

We had three wonderful years before we entered into the world of the unknown. Three glorious years living the dream of having a very blessed and healthy child. Ava is still very blessed but I would give anything to go back to believing my Ava was healthy. Ava’s Journey is long. I want to focus on the positives today and not the diagnostic odyssey that continues to be our lives.

I thank God every day for keeping Ava with us during the summer of 2013. As June 13th approaches again this year, I relive the days leading up to that dreadful day she would have been blind and/or dead four years ago. I think about the surgery where Ava saw the white light and the blue light. She chose me, her mom.

As I look at my beautiful Ava today on her tenth birthday, I see a young girl full of perseverance and wiser beyond her years. Every single day is a new day and she continues to push through. We have had a rough few months and she has missed the last few days of school again due to pain and fatigue. I hope this year is a better year and she continues to conquer the battles she faces every day.

I am amazed at how the body works. With everything that happened to Ava’s brain and being shunt-dependent, she is cognitively doing great. With her autonomic neuropathy, EOE and many other issues, she continues to smile and laugh. With all of her pain and fatigue, she continues to sing and play music.

She inspires me every single day to be the best mom that I can possibly be. She inspires me to be the best advocate that I can be. Through the work we have done since 2014, I have met an incredible network of people continuing to try to help us find a diagnosis, a treatment and a cure. I am forever grateful to each and every single person that has been on this journey with our family.

Through Ava, I have learned to persevere.  She has taught me so much in her ten years. It is an honor to be her mother and I am forever grateful to have her here with me.

Thank you all for your continued support, love and prayers.

Much love,


Comments (1)

  1. Mindy L Reply

    June 17, 2017 at 3:02 pm

    She is beautiful. She took after you. You are a wonderful mother. You talked about her perserverance but if it was not for your perserverance, things might have turned out differently as well. Thank you for posting this beautiful post about her. Kudos to you and her and best wishes in the new adventure.

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